a little something I wrote.
Sometimes........
Sometimes I am scared, scared that I will lose again, scared that my memories will slip away.
Sometimes I am angry, angry that such a beautiful person was taken too soon, angry that I didn't get to watch you grow up.
Sometimes I am grateful, grateful that we had those weeks with you, even though we couldn't hold you, you were there within our grasp showing us wonders that we had not yet been worthy to experience.
Sometimes I am sad, sad because I miss you so much my heart hurts.
Sometimes I am guilty, guilty because I might have been able to change things if I had only known
Sometimes I am happy, remembering how your strength and spirit filled the room, seeing you do it your way regardless of the "rules".
Sometimes I cry, I cry tears of sadness, I cry tears of heartbreak, and every now and then I cry tears of gratitude.
Sometimes I hope. I hope that I was a good mother to you even though the obstacles made it difficult for me to be a proper mother. I also hope that I can be half the person you were.
There are a lot of "sometimes". But there is one "always" and that is...... Always I will love you.
I know that time in heaven goes so fast, by the time you turn around to see if I am there with you, I will be. You feel no pain, you feel no fear. When I look up at the night sky and see that one brightest star, I imagine you sitting on it looking down on us and giving us your strength that we can go on without you. I may never understand, but at least I can wake up each morning knowing that nothing can ever take you from my heart.
I love you Alex, and I misse you terribly. For once in my life I'm not afraid to die, when it's my time someday I know that I will forever be with you again.
Sunday, July 9, 2006
Friday, July 7, 2006
One direction or the other please
Things seem to be getting harder for me and easier at the same time. I don't know how or why. Yesterday we went to our first midwife appointment and since it was my birthday the midwife agreed to let us take a quick peek with the ultrasound machine since it's far too early to hear the heartbeat with the dopper. The machine they have in the office there is ancient, and not very good and for a while we could see the baby, but no flicker of a heartbeat. I stared at the screen, willing that little heart to show it's presence.......... and then it did! Such a relief.
So why do I feel sad? I feel sad that this isn't Alex. I feel bad that I find myself thinking that another baby couldn't possibly ever be as special as he was. I feel bad that I don't know if I can bond with this baby because I'm afraid he or she will be taken too.
I don't feel good physically. I feel weak. I feel like something is wrong inside my body and I find myself always fearing for my own life. Something IS wrong with my body...... my heart is broken and I'm not sure it will ever really heal.
Grieving my child is something I could not prepare for. Initially not even as much as now. See at first people expected me to be a basket case. Now.... it seems people expect a person to just kind of get over it in a way, move on. It's so difficult to do that. Part of me never wants to move on, to get further and further from our lives with Alex. I am losing my memories, a little at a time and sometimes it just feels like it never really happened at all. I mean in so many ways it's like this past year never happened, because our lives by all outward appearances are exactly the same as they were a year ago. 5 kids, expecting another, Craig working his tail off, me trying to keep things running smoothly and struggling with the constant changes that having children brings. The only difference really is we have pictures on the wall of a baby who we never got to know, we live day to day with loss on the inside, while being "normal" on the outside.
So why do I feel sad? I feel sad that this isn't Alex. I feel bad that I find myself thinking that another baby couldn't possibly ever be as special as he was. I feel bad that I don't know if I can bond with this baby because I'm afraid he or she will be taken too.
I don't feel good physically. I feel weak. I feel like something is wrong inside my body and I find myself always fearing for my own life. Something IS wrong with my body...... my heart is broken and I'm not sure it will ever really heal.
Grieving my child is something I could not prepare for. Initially not even as much as now. See at first people expected me to be a basket case. Now.... it seems people expect a person to just kind of get over it in a way, move on. It's so difficult to do that. Part of me never wants to move on, to get further and further from our lives with Alex. I am losing my memories, a little at a time and sometimes it just feels like it never really happened at all. I mean in so many ways it's like this past year never happened, because our lives by all outward appearances are exactly the same as they were a year ago. 5 kids, expecting another, Craig working his tail off, me trying to keep things running smoothly and struggling with the constant changes that having children brings. The only difference really is we have pictures on the wall of a baby who we never got to know, we live day to day with loss on the inside, while being "normal" on the outside.
Sunday, July 2, 2006
Kids and grief
Wow, what a pity party that last entry was eh? Jeez Kat. I'm told I'm allowed to have pity parties now and then so I guess I should just take advantage of my right to whine and do it every so often.
I really am unsure if I've accepted things though. I've decided that after the holiday I'm going to call and make an appointment with the family therapy services. There just isn't any reason not to. If not for me, for my kids.
It seems that the kids' grief is rearing it's head now. It's really a learning experience. Kids do grieve differently than we do. Christian has been pretty teary lately and when prodded he admits he misses Alex. It's hard for Craig and I to ask the questions we need to and get to the bottom of things with them because our kids hurting so much is pretty hard for us to bear. So it's time to talk to someone.
It's really strange how the grief changes and evolves. In the early weeks you are under this fog and it's difficult to remember, to think, to process thoughts at all let alone difficult ones. That fog very very slowly lifts and then I've had a period of "I'm ok" You feel a bit empowered, because you know you have just experienced the worst emotional hurt possible in this world, and you survived it.
Now, the fog is gone the acute pain has gone. But now the questions rear thier ugly heads. Replacing the acute pain is a dull ache that won't go away. You don't feel quite so empowered anymore because you aren't entirely sure what life is for you now.
It's all just impossible to put into words because I struggle to understand it myself.
I really am unsure if I've accepted things though. I've decided that after the holiday I'm going to call and make an appointment with the family therapy services. There just isn't any reason not to. If not for me, for my kids.
It seems that the kids' grief is rearing it's head now. It's really a learning experience. Kids do grieve differently than we do. Christian has been pretty teary lately and when prodded he admits he misses Alex. It's hard for Craig and I to ask the questions we need to and get to the bottom of things with them because our kids hurting so much is pretty hard for us to bear. So it's time to talk to someone.
It's really strange how the grief changes and evolves. In the early weeks you are under this fog and it's difficult to remember, to think, to process thoughts at all let alone difficult ones. That fog very very slowly lifts and then I've had a period of "I'm ok" You feel a bit empowered, because you know you have just experienced the worst emotional hurt possible in this world, and you survived it.
Now, the fog is gone the acute pain has gone. But now the questions rear thier ugly heads. Replacing the acute pain is a dull ache that won't go away. You don't feel quite so empowered anymore because you aren't entirely sure what life is for you now.
It's all just impossible to put into words because I struggle to understand it myself.
Saturday, July 1, 2006
Nothing makes sense
Sometimes I wonder if I'm just not in a huge state of denial.... I don't visit the cemetary and I'm starting to feel insanely guilty for that. Maybe it's because although I think I've accepted it, I really haven't. In so many aspects I'm still living Alex's life........ maybe I have yet to realize his death?
Lately the whole thing has just seemed kind of surreal. Like there's no possibly way all this has happened. I feel like it was this crazy dream, one of those dreams that haunts you long after you wake up even though you know it was only a dream.
Maybe none of this makes any sense. I don't even thing anyone reads this journal anymore so I'm thinking about discontinuing it. Why should they read it? The adventure is over. The excitement is over.......... all that is left is............ I'm not sure what.
Lately the whole thing has just seemed kind of surreal. Like there's no possibly way all this has happened. I feel like it was this crazy dream, one of those dreams that haunts you long after you wake up even though you know it was only a dream.
Maybe none of this makes any sense. I don't even thing anyone reads this journal anymore so I'm thinking about discontinuing it. Why should they read it? The adventure is over. The excitement is over.......... all that is left is............ I'm not sure what.
Friday, June 30, 2006
A real baby
Last night I had a dream that I was running around this big city and I couldn't find my way. I was afraid, lost, but refused to give up. I woke up and kind of chuckled how that dream so truly reflects the past 5 months.
It's hard to beleive that Alex would be 5 months old now. He would be a "real baby" as I like to call babies that are no longer lazy newborns, but are playing and learning. I cannot picture him 5 months old. He is truly forever a newborn to me.
I've been very busy. The parade preparation is taking a lot of my time. Bears had to be shipped yesterday, summer in a tourist town is hectic anyway. The kids have been running from one summer school activity to another.
Wednesday I had lunch with another heart mommy. The first I've met in this area. It was so nice to just talk and have someone actually GET what I was talking about! Thankfully her sweet daughter is a survivor, but it seems she still went through some feelings of loss, loss of the child they excpected maybe. No one ever really thinks thier child will be born sick, especially when the pregnancy doesn't indicate anything like that. Anyway, we are going to work on implementing a support group in our area.
Well, the work is never done!
It's hard to beleive that Alex would be 5 months old now. He would be a "real baby" as I like to call babies that are no longer lazy newborns, but are playing and learning. I cannot picture him 5 months old. He is truly forever a newborn to me.
I've been very busy. The parade preparation is taking a lot of my time. Bears had to be shipped yesterday, summer in a tourist town is hectic anyway. The kids have been running from one summer school activity to another.
Wednesday I had lunch with another heart mommy. The first I've met in this area. It was so nice to just talk and have someone actually GET what I was talking about! Thankfully her sweet daughter is a survivor, but it seems she still went through some feelings of loss, loss of the child they excpected maybe. No one ever really thinks thier child will be born sick, especially when the pregnancy doesn't indicate anything like that. Anyway, we are going to work on implementing a support group in our area.
Well, the work is never done!
Sunday, June 25, 2006
The blame game
I'm finding myself asking some hard questions today, questions that I don't have the answers for. Questions that I'm not sure I WANT to answers to.
Did my baby die because of someone's mistake? I'm sure every bereaved parent asks this. You want to blame somebody, you want it to be someone's fault so you have a place to direct your hurt and anger. But...
Last night I had a dream. I dreamt I was walking in a beautiful field full of daisies and in the distance I saw a red haired little boy, no bigger than the tallest flower running. I ran to him to realize that I was standing face to face with my son. I scooped him up in my arms and cried the tears that have been dormant for so long. I asked him if he was happy and he said he is. I asked him if there was anything we could have done to save him and he said that Craig and I had done everything we could have, but that he had planned to stay until he had his bleeding problem. After that he got sicker and finally God asked him if he wanted to go home and he said he couldn't stand the pain anymore and went.
I know it was a dream. But did the heparing "incident" kill my child? He was doing so well before that, SO well. Sure he had his complications, but he really was improving. Did someone KILL my child? I have the surgical report from that incident, it doesn't jump out at you, was it correct?
That dream really upset me. I has knocked down my resolve. I always just convinced myself that he wasn't meant to be here, from the start God had planned to take him back. But what if that wasn't the case? What if he would still be here if someone hadn't screwed up and given him too much heparin. I still don't know the specifics on that, it was all very hush hush and I still remember that evening was the ONLY time, in 6.5 weeks that I had EVER been asked to leave the room during nursing shift change. What were they hiding?
In the days that followed that I heard tiny bits at shift changes and what not....... I heard "heparin incident" "got too much heparin". At the time Craig and I, we were too scared to ask. We had no options for Alex at that point besides right where he was at. We had to keep our faith. I even admit I went so far as to tell people things that weren't true about the situation being investigated when it wasn't. Part of that was probably because of my own guilt, I felt a duty to look into it, but I couldn't stand to know. It's something you can't understand unless you are there, your child laying in that bed with nowhere else to go. You just have hang on to any thread that it might have not happened the way it appears.
I guess a case could be made that he DID live that night. With a lot of hard work from the docs and nurses he DID live. But did he? That morning everything worked, after that, he never peed again. I remember Dr D telling me that night "if he hadn't bled, I think we could have gotten him closed, so we want to try again asap" but after that, he was just too weak to withstand it. So if that hadn't happened would he have been closed? If he had been closed would he have gotten septic? I don't know what to do. I want to know the answers, I want honesty....... but if no one could be forthright with me before, why would they now? I'm angry. Why didn't anyone just come to us and say "this happened, were sorry?" Because we aren't lawsuit happy people, you know what we would have said? "humans make mistakes, thank you for being honest". But they weren't honest. That's what makes me angry. I think someone may have made a horrible mistake and no one had the decency to tell us.
Did my baby die because of someone's mistake? I'm sure every bereaved parent asks this. You want to blame somebody, you want it to be someone's fault so you have a place to direct your hurt and anger. But...
Last night I had a dream. I dreamt I was walking in a beautiful field full of daisies and in the distance I saw a red haired little boy, no bigger than the tallest flower running. I ran to him to realize that I was standing face to face with my son. I scooped him up in my arms and cried the tears that have been dormant for so long. I asked him if he was happy and he said he is. I asked him if there was anything we could have done to save him and he said that Craig and I had done everything we could have, but that he had planned to stay until he had his bleeding problem. After that he got sicker and finally God asked him if he wanted to go home and he said he couldn't stand the pain anymore and went.
I know it was a dream. But did the heparing "incident" kill my child? He was doing so well before that, SO well. Sure he had his complications, but he really was improving. Did someone KILL my child? I have the surgical report from that incident, it doesn't jump out at you, was it correct?
That dream really upset me. I has knocked down my resolve. I always just convinced myself that he wasn't meant to be here, from the start God had planned to take him back. But what if that wasn't the case? What if he would still be here if someone hadn't screwed up and given him too much heparin. I still don't know the specifics on that, it was all very hush hush and I still remember that evening was the ONLY time, in 6.5 weeks that I had EVER been asked to leave the room during nursing shift change. What were they hiding?
In the days that followed that I heard tiny bits at shift changes and what not....... I heard "heparin incident" "got too much heparin". At the time Craig and I, we were too scared to ask. We had no options for Alex at that point besides right where he was at. We had to keep our faith. I even admit I went so far as to tell people things that weren't true about the situation being investigated when it wasn't. Part of that was probably because of my own guilt, I felt a duty to look into it, but I couldn't stand to know. It's something you can't understand unless you are there, your child laying in that bed with nowhere else to go. You just have hang on to any thread that it might have not happened the way it appears.
I guess a case could be made that he DID live that night. With a lot of hard work from the docs and nurses he DID live. But did he? That morning everything worked, after that, he never peed again. I remember Dr D telling me that night "if he hadn't bled, I think we could have gotten him closed, so we want to try again asap" but after that, he was just too weak to withstand it. So if that hadn't happened would he have been closed? If he had been closed would he have gotten septic? I don't know what to do. I want to know the answers, I want honesty....... but if no one could be forthright with me before, why would they now? I'm angry. Why didn't anyone just come to us and say "this happened, were sorry?" Because we aren't lawsuit happy people, you know what we would have said? "humans make mistakes, thank you for being honest". But they weren't honest. That's what makes me angry. I think someone may have made a horrible mistake and no one had the decency to tell us.
The blame game
I'm finding myself asking some hard questions today, questions that I don't have the answers for. Questions that I'm not sure I WANT to answers to.
Did my baby die because of someone's mistake? I'm sure every bereaved parent asks this. You want to blame somebody, you want it to be someone's fault so you have a place to direct your hurt and anger. But...
Last night I had a dream. I dreamt I was walking in a beautiful field full of daisies and in the distance I saw a red haired little boy, no bigger than the tallest flower running. I ran to him to realize that I was standing face to face with my son. I scooped him up in my arms and cried the tears that have been dormant for so long. I asked him if he was happy and he said he is. I asked him if there was anything we could have done to save him and he said that Craig and I had done everything we could have, but that he had planned to stay until he had his bleeding problem. After that he got sicker and finally God asked him if he wanted to go home and he said he couldn't stand the pain anymore and went.
I know it was a dream. But did the heparing "incident" kill my child? He was doing so well before that, SO well. Sure he had his complications, but he really was improving. Did someone KILL my child? I have the surgical report from that incident, it doesn't jump out at you, was it correct?
That dream really upset me. I has knocked down my resolve. I always just convinced myself that he wasn't meant to be here, from the start God had planned to take him back. But what if that wasn't the case? What if he would still be here if someone hadn't screwed up and given him too much heparin. I still don't know the specifics on that, it was all very hush hush and I still remember that evening was the ONLY time, in 6.5 weeks that I had EVER been asked to leave the room during nursing shift change. What were they hiding?
In the days that followed that I heard tiny bits at shift changes and what not....... I heard "heparin incident" "got too much heparin". At the time Craig and I, we were too scared to ask. We had no options for Alex at that point besides right where he was at. We had to keep our faith. I even admit I went so far as to tell people things that weren't true about the situation being investigated when it wasn't. Part of that was probably because of my own guilt, I felt a duty to look into it, but I couldn't stand to know. It's something you can't understand unless you are there, your child laying in that bed with nowhere else to go. You just have hang on to any thread that it might have not happened the way it appears.
I guess a case could be made that he DID live that night. With a lot of hard work from the docs and nurses he DID live. But did he? That morning everything worked, after that, he never peed again. I remember Dr D telling me that night "if he hadn't bled, I think we could have gotten him closed, so we want to try again asap" but after that, he was just too weak to withstand it. So if that hadn't happened would he have been closed? If he had been closed would he have gotten septic? I don't know what to do. I want to know the answers, I want honesty....... but if no one could be forthright with me before, why would they now? I'm angry. Why didn't anyone just come to us and say "this happened, were sorry?" Because we aren't lawsuit happy people, you know what we would have said? "humans make mistakes, thank you for being honest". But they weren't honest. That's what makes me angry. I think someone may have made a horrible mistake and no one had the decency to tell us.
Did my baby die because of someone's mistake? I'm sure every bereaved parent asks this. You want to blame somebody, you want it to be someone's fault so you have a place to direct your hurt and anger. But...
Last night I had a dream. I dreamt I was walking in a beautiful field full of daisies and in the distance I saw a red haired little boy, no bigger than the tallest flower running. I ran to him to realize that I was standing face to face with my son. I scooped him up in my arms and cried the tears that have been dormant for so long. I asked him if he was happy and he said he is. I asked him if there was anything we could have done to save him and he said that Craig and I had done everything we could have, but that he had planned to stay until he had his bleeding problem. After that he got sicker and finally God asked him if he wanted to go home and he said he couldn't stand the pain anymore and went.
I know it was a dream. But did the heparing "incident" kill my child? He was doing so well before that, SO well. Sure he had his complications, but he really was improving. Did someone KILL my child? I have the surgical report from that incident, it doesn't jump out at you, was it correct?
That dream really upset me. I has knocked down my resolve. I always just convinced myself that he wasn't meant to be here, from the start God had planned to take him back. But what if that wasn't the case? What if he would still be here if someone hadn't screwed up and given him too much heparin. I still don't know the specifics on that, it was all very hush hush and I still remember that evening was the ONLY time, in 6.5 weeks that I had EVER been asked to leave the room during nursing shift change. What were they hiding?
In the days that followed that I heard tiny bits at shift changes and what not....... I heard "heparin incident" "got too much heparin". At the time Craig and I, we were too scared to ask. We had no options for Alex at that point besides right where he was at. We had to keep our faith. I even admit I went so far as to tell people things that weren't true about the situation being investigated when it wasn't. Part of that was probably because of my own guilt, I felt a duty to look into it, but I couldn't stand to know. It's something you can't understand unless you are there, your child laying in that bed with nowhere else to go. You just have hang on to any thread that it might have not happened the way it appears.
I guess a case could be made that he DID live that night. With a lot of hard work from the docs and nurses he DID live. But did he? That morning everything worked, after that, he never peed again. I remember Dr D telling me that night "if he hadn't bled, I think we could have gotten him closed, so we want to try again asap" but after that, he was just too weak to withstand it. So if that hadn't happened would he have been closed? If he had been closed would he have gotten septic? I don't know what to do. I want to know the answers, I want honesty....... but if no one could be forthright with me before, why would they now? I'm angry. Why didn't anyone just come to us and say "this happened, were sorry?" Because we aren't lawsuit happy people, you know what we would have said? "humans make mistakes, thank you for being honest". But they weren't honest. That's what makes me angry. I think someone may have made a horrible mistake and no one had the decency to tell us.
Friday, June 23, 2006
Stolen innocence
Upon learning that children will be soon having a new sibling, most kids will speculate as to whether the baby will be a girl or a boy, or in the case of Shaylin, will declare her hope that the baby will just simply be cute. However my children, instead now just say they hope the baby will be healthy.
Innocence is something we take for granted with our children. We watch them learn and marvel over butterflies, the moon, clouds and take simple joy in thier experiences. It's very difficult when a part of that innocence is taken from your children, through no fault of anyone it's gone, forever.
I first became aware of this at the Ronald Mcdonald house when one day as I was sitting by the fireplace watching Shaylin and Jacksen play with thier little friends, I witnessed a game that both interested and saddened me. The game involved a baby doll and the children played out the scenario that the baby was sick and needed an ambulance, when the ambulance arrived these children, the oldest a mere 6, began putting "lines" in the baby and instructing each other on life saving measures.
My children now worry about things that are far beyond the imagination of most children. They worry if thier new sibling will be healthy, if he or she will live. They confront thier own mortality...... if babies can die, then children can too. They now know that people die and go away forever, aside from Jack who insists that every pair of baby shoes we see at the store would looke insanely adorable on "baby wex".
As sad as it is, there are also blessings involved. My children have a much greater appreciation for thier safety and thier lives than most other children. The families and special children we met at the house have shown them that people may not always be like them on the outside, but that's ok. They don't see things in black and white anymore. The fact that they know that nothing is forever, makes them more inclined to make the most of every day and to appreciate what they have been given. And that is a lesson that as parents we cannot teach, it's a lesson only learned through experience.
Thank you "baby wex", for helping show us ALL the way.
Innocence is something we take for granted with our children. We watch them learn and marvel over butterflies, the moon, clouds and take simple joy in thier experiences. It's very difficult when a part of that innocence is taken from your children, through no fault of anyone it's gone, forever.
I first became aware of this at the Ronald Mcdonald house when one day as I was sitting by the fireplace watching Shaylin and Jacksen play with thier little friends, I witnessed a game that both interested and saddened me. The game involved a baby doll and the children played out the scenario that the baby was sick and needed an ambulance, when the ambulance arrived these children, the oldest a mere 6, began putting "lines" in the baby and instructing each other on life saving measures.
My children now worry about things that are far beyond the imagination of most children. They worry if thier new sibling will be healthy, if he or she will live. They confront thier own mortality...... if babies can die, then children can too. They now know that people die and go away forever, aside from Jack who insists that every pair of baby shoes we see at the store would looke insanely adorable on "baby wex".
As sad as it is, there are also blessings involved. My children have a much greater appreciation for thier safety and thier lives than most other children. The families and special children we met at the house have shown them that people may not always be like them on the outside, but that's ok. They don't see things in black and white anymore. The fact that they know that nothing is forever, makes them more inclined to make the most of every day and to appreciate what they have been given. And that is a lesson that as parents we cannot teach, it's a lesson only learned through experience.
Thank you "baby wex", for helping show us ALL the way.
Thursday, June 22, 2006
I don't understand
It's not often something can send me back to that place. The sobbing mess on the floor place. It happened this morning.
The little girl, Ashley that I talked about in my last entry has gone to heaven. It hit me hard this morning and I spent a bit ranting at God and everybody else. The WHY factor you know. I hope that someday when I get to heaven I will have the priveledge of understanding because I just don't. I try to see the silver lining but it's hard when these kids fight and fight and fight so hard only to die anyway. It doesn't make any sense! Craig said something about lessons to be learned, and I beleive that. But who's lessons are they to learn? The parents? well how fair is it to put a child through that for someone else's education? Is it the child that is learning? Why does it have to be learned THAT way.
It will never make sense to me, it's probably not suppose to but I'm a question and answer kinda gal, and I want answers!
The little girl, Ashley that I talked about in my last entry has gone to heaven. It hit me hard this morning and I spent a bit ranting at God and everybody else. The WHY factor you know. I hope that someday when I get to heaven I will have the priveledge of understanding because I just don't. I try to see the silver lining but it's hard when these kids fight and fight and fight so hard only to die anyway. It doesn't make any sense! Craig said something about lessons to be learned, and I beleive that. But who's lessons are they to learn? The parents? well how fair is it to put a child through that for someone else's education? Is it the child that is learning? Why does it have to be learned THAT way.
It will never make sense to me, it's probably not suppose to but I'm a question and answer kinda gal, and I want answers!
Monday, June 19, 2006
Dads hurt too
Once again I need to ask for your prayers. This time for a little sweet girl named Ashley who also has a special heart.
Ashley is in the PICU and so much of what she is going through we lived through with Alex. She's in rough shape, transplant seems to be her only option but she's too sick for ECMO support until a heart becomes available. Please pray for this family that thier miracle comes in the form of healing for this sweet little girl.
Yesterday was fathers day. I can't really say how Craig did with it because for the first time in quite a few years, he worked on father's day. He was kind of distant in the morning and left for work early and I imagine he did that to stop by the cemetary before work. A lot of you get to listen to my ramblings, but don't get to know much about my dear sweet husband unless you know him personally. He's such a great husband and father and my heart hurts for him. I wish I could just take his pain away and I can't. He's doing much better that's for sure and I am confident he's on the right road to healing. I just wish he didn't have to hurt.
Ashley is in the PICU and so much of what she is going through we lived through with Alex. She's in rough shape, transplant seems to be her only option but she's too sick for ECMO support until a heart becomes available. Please pray for this family that thier miracle comes in the form of healing for this sweet little girl.
Yesterday was fathers day. I can't really say how Craig did with it because for the first time in quite a few years, he worked on father's day. He was kind of distant in the morning and left for work early and I imagine he did that to stop by the cemetary before work. A lot of you get to listen to my ramblings, but don't get to know much about my dear sweet husband unless you know him personally. He's such a great husband and father and my heart hurts for him. I wish I could just take his pain away and I can't. He's doing much better that's for sure and I am confident he's on the right road to healing. I just wish he didn't have to hurt.
Saturday, June 17, 2006
Why do kids have to die?
I don't really know what to write in here anymore. My thoughts and feelings seem clouded lately. Not a day goes by where I don't think of Alex and I don't expect that will ever change, nor do I want it to.
So many people take for granted. Take for granted that they will give birth to a healthy baby and take that baby home, that they will watch that child grow and learn. So many people just expect that thier child will be here tomorrow. Of course they do, they haven't seen what i've seen.
I ask you all to pray tonight. For a sweet little girl named Tiahna that is in the U of MN hospital fighting for her life from Leukemia. Such a beautiful baby. Her parents received some disheartening news today, the kind of news that really sets you back in the knowledge that your child might not live through this test. Not that I'm sure they've ever forgotten it, but sometimes you let yourself drift to the other outcome and by the grace of God you can keep yourself there in that happy place of "my child will come home". And then things change and you have to look in the face the possibility that kids DO die. They die suddenly, they die after long illnesses, they die because of mistakes, accidents, murder. Children die. Treatments sometimes can't work and we fight with God for our children until the time comes to realize that these children aren't ours to keep and it's a fight we can't win. This is a hard reality to swallow for anyone, but when you are the parent of a child who might die, the feeling is undescribable.
I'm probably not making much sense tonight and that's ok. My heart is heavy tonight. I feel like since Alex died death follows me. Although I may not always personally know the children or thier families, children dying is everywhere I turn. Sometimes I wonder if it's me lol maybe i'm bad luck or something. I wonder why God lead me to this place I stand right now. What purpose does it serve to keep death in my sights? What do you want me to do with this wisdom and knowledge that you've given me through the life and death of my dear sweet son? I pray for direction.
So many people take for granted. Take for granted that they will give birth to a healthy baby and take that baby home, that they will watch that child grow and learn. So many people just expect that thier child will be here tomorrow. Of course they do, they haven't seen what i've seen.
I ask you all to pray tonight. For a sweet little girl named Tiahna that is in the U of MN hospital fighting for her life from Leukemia. Such a beautiful baby. Her parents received some disheartening news today, the kind of news that really sets you back in the knowledge that your child might not live through this test. Not that I'm sure they've ever forgotten it, but sometimes you let yourself drift to the other outcome and by the grace of God you can keep yourself there in that happy place of "my child will come home". And then things change and you have to look in the face the possibility that kids DO die. They die suddenly, they die after long illnesses, they die because of mistakes, accidents, murder. Children die. Treatments sometimes can't work and we fight with God for our children until the time comes to realize that these children aren't ours to keep and it's a fight we can't win. This is a hard reality to swallow for anyone, but when you are the parent of a child who might die, the feeling is undescribable.
I'm probably not making much sense tonight and that's ok. My heart is heavy tonight. I feel like since Alex died death follows me. Although I may not always personally know the children or thier families, children dying is everywhere I turn. Sometimes I wonder if it's me lol maybe i'm bad luck or something. I wonder why God lead me to this place I stand right now. What purpose does it serve to keep death in my sights? What do you want me to do with this wisdom and knowledge that you've given me through the life and death of my dear sweet son? I pray for direction.
Tuesday, June 13, 2006
Slipping
So I didn't go to Tyler's funeral on Saturday. I won't elaborate.
I'm really glad that I got pregnant again so soon. I find myself being able to see babies again without being so sad, I almost ALMOST was able to go into the infant department at walmart today........ big step.
I have however been feeling a little guilty. I look at Alex's picture on my computer desktop and I just search his little face and try to remember him........ my memories are so hazy and I hate it. I can't remember anymore his smell, I can barely remember what his fuzzy hair felt like. I vaguely remember the way he scrunched his face up during his silent cries. I find myself angry about that. If I can't have my baby why can't I have my memories at least? Why do I have to lose those too? Sometimes I look through the photo album at the pictures of him and I can remember the day, but I can't remember that moment the picture was taken. I can't remember how it felt to hold him. It's frustrating.
I'm really glad that I got pregnant again so soon. I find myself being able to see babies again without being so sad, I almost ALMOST was able to go into the infant department at walmart today........ big step.
I have however been feeling a little guilty. I look at Alex's picture on my computer desktop and I just search his little face and try to remember him........ my memories are so hazy and I hate it. I can't remember anymore his smell, I can barely remember what his fuzzy hair felt like. I vaguely remember the way he scrunched his face up during his silent cries. I find myself angry about that. If I can't have my baby why can't I have my memories at least? Why do I have to lose those too? Sometimes I look through the photo album at the pictures of him and I can remember the day, but I can't remember that moment the picture was taken. I can't remember how it felt to hold him. It's frustrating.
Friday, June 9, 2006
Healing, a little at a time
Tomorrow is Tyler's funeral. I'm a little nervous still waiting for the part of this that's going to suck me right back to losing Alex and tear me apart. So far, so good though.
Yesterday we had a bbq at my moms for Craig's birthday. It was a beautiful day and we spent the day just being lazy and watching the kids do 'stupid human tricks' as my sister liked to put it....... you have to understand, her sense of humor is even more left field than mine (corrected the I before E thing there Jana, in case you ever read this aren't you proud?)
Today we went to the MN zoo and had a blast. Allen snuck out of work and joined us and we made a day of it. After we went and saw a IMAX 3D film which was awesome, it was hilarious to watch Shay and Jack (who have never before even been to a normal theater) reach out and try to touch the 3d pictures. I'm not sure the poor man in front of Shay appreciated it much though. They would get scared at the jumpy parts and then just giggle like insane little elves lol
I noticed about halfway through the day that although I still find my eyes wandering toward babies, especially newborns (since Alex will forever be one in my mind, even though he'd be over 4 months old now) I don't look at them and feel that overwhelming sadness I use to.
It's amazing how the heart can heal. The problem I battle now is how much healing is fair and how much should I make myself feel guilty for if that makes any sense. I like to beat myself up when life is going well for me I guess and I need to stop doing that.......
Yesterday we had a bbq at my moms for Craig's birthday. It was a beautiful day and we spent the day just being lazy and watching the kids do 'stupid human tricks' as my sister liked to put it....... you have to understand, her sense of humor is even more left field than mine (corrected the I before E thing there Jana, in case you ever read this aren't you proud?)
Today we went to the MN zoo and had a blast. Allen snuck out of work and joined us and we made a day of it. After we went and saw a IMAX 3D film which was awesome, it was hilarious to watch Shay and Jack (who have never before even been to a normal theater) reach out and try to touch the 3d pictures. I'm not sure the poor man in front of Shay appreciated it much though. They would get scared at the jumpy parts and then just giggle like insane little elves lol
I noticed about halfway through the day that although I still find my eyes wandering toward babies, especially newborns (since Alex will forever be one in my mind, even though he'd be over 4 months old now) I don't look at them and feel that overwhelming sadness I use to.
It's amazing how the heart can heal. The problem I battle now is how much healing is fair and how much should I make myself feel guilty for if that makes any sense. I like to beat myself up when life is going well for me I guess and I need to stop doing that.......
Wednesday, June 7, 2006
Rest in Peace baby Tyler
Last night I had the honor of being in attendance as Tyler earned his wings and went to be with God and Alex. It was a very moving, spiritual experience. The 'wonder twins' are together again, for eternity.
Godspeed little Tyler, I am forever grateful for the opportunity to know you.
Godspeed little Tyler, I am forever grateful for the opportunity to know you.
Monday, June 5, 2006
Just keep moving on
As when Alex was in the hospital, no news is good news. As we heal, this journal becomes less needed as a venting place for our pain.
Things with Bubba's bears have been plugging along. We are getting a growing number of bear requests and I'm happy to be putting the time into this. As soon as I get all the bugs worked out I can start handing more off to the many people who have volunteered to help with it, which is going to become a welcome break since it really has become a full time job and I find myself pretty exhausted at the end of the day sometimes.
Today miss Shaylin graduated from her pre-kindergarten program. She was a doll in her little cap and gown and they always just make those things absolutely adorable, you can't help but get a tear in your eye........ go class of 2019!
Tomorrow is the last day of school for all the kids. This school year has just flown by with everything that has happened. It's kind of strange how this time last year we were in exactly the same place in a lot of ways as we are now. Expecting a baby, preparing for summer with 5 active children keeping us busy with summer school activities. The only thing that is so very different is that we are different people than we were. It's strange that such different people are living the same life.
Of course it's not the same. It will never be the same. But to all outward appearances it really has to be. We are showing people that we can survive, our family has taken a hard hit, but we will stay together and be stronger than ever.
Things with Bubba's bears have been plugging along. We are getting a growing number of bear requests and I'm happy to be putting the time into this. As soon as I get all the bugs worked out I can start handing more off to the many people who have volunteered to help with it, which is going to become a welcome break since it really has become a full time job and I find myself pretty exhausted at the end of the day sometimes.
Today miss Shaylin graduated from her pre-kindergarten program. She was a doll in her little cap and gown and they always just make those things absolutely adorable, you can't help but get a tear in your eye........ go class of 2019!
Tomorrow is the last day of school for all the kids. This school year has just flown by with everything that has happened. It's kind of strange how this time last year we were in exactly the same place in a lot of ways as we are now. Expecting a baby, preparing for summer with 5 active children keeping us busy with summer school activities. The only thing that is so very different is that we are different people than we were. It's strange that such different people are living the same life.
Of course it's not the same. It will never be the same. But to all outward appearances it really has to be. We are showing people that we can survive, our family has taken a hard hit, but we will stay together and be stronger than ever.
Friday, June 2, 2006
Fear through anothers eyes
So, someone stole the flowers off Alex's grave that my mom put there for memorial day. How nice is that? Stealing flowers from a deceased person is bad enough, but a BABY? Do people have no morals?
Otherwise, things have been going well. Bubba's bears is keeping me busy and I like that it does. Craig has even learned how to do the bears which is a great help! It's neat to see the pictures we get of kids with our bears all smiling and happy.
Asking once again for your prayers today. For Luke, who is being extubated today for the final time, if he struggles too much they are going to give him a tracheostomy, so please say a little prayer that he does well and doesn't need one.
And for Tyler. His family isn't getting very good news about his prognosis and may have to make some difficult decisions soon. Please pray that the doctors can find some way to turn things around for him, and if that is not in God's plan, pray to give him and his family some peace.
Otherwise, things have been going well. Bubba's bears is keeping me busy and I like that it does. Craig has even learned how to do the bears which is a great help! It's neat to see the pictures we get of kids with our bears all smiling and happy.
Asking once again for your prayers today. For Luke, who is being extubated today for the final time, if he struggles too much they are going to give him a tracheostomy, so please say a little prayer that he does well and doesn't need one.
And for Tyler. His family isn't getting very good news about his prognosis and may have to make some difficult decisions soon. Please pray that the doctors can find some way to turn things around for him, and if that is not in God's plan, pray to give him and his family some peace.
Tuesday, May 30, 2006
Reality hits
Now that the news has really started to sink in I find myself torn. I am very excited but I'm SO scared. I'm not so much scared of them finding something during the tests they will do when I'm pregnant , I'm more afraid they will miss something and we'll think once again that we've just had a perfect healthy baby and then he or she will get sick like Alex did unexpectedly.
I guess this is normal. And we won't breathe easy until after the baby is born and we get an echo done to be sure there is nothing wrong.
I guess this is normal. And we won't breathe easy until after the baby is born and we get an echo done to be sure there is nothing wrong.
Friday, May 26, 2006
Ask and ye shall receive
Well, I am happy to share the wonderful news that we have been given a gift from Alex and God.
We are expecting a new little miracle February 3, 2007
We are expecting a new little miracle February 3, 2007
Tuesday, May 23, 2006
I'm sorry, my baby died
Well, I finally did it...........
You may be aware that after the birth of a baby there is a '6 week' post partum appointment that every new mother must have, and every new mother thoroughly dreads. In my case, dreads enough to put it off for months.
My original appointment was to be March 14th, I decided not to go that day because Alex was really unstable and I couldn't bring myself to be 2 hours away from him. After he died I just didn't want to do it, it was another one of those things where I was suppose to be bringing him with me and showing him off to all the midwives and nurses, and I couldn't.
Well, my reproductive health at stake, I did bite the bullet and go. I should really have called first to make sure the staff was aware that Alex had passed, but I didn't. I kind of figured that they would already know.
So the nurse takes me back and is doing the bp and all that and she askes 'what is your babies name?' And I swallow hard and say 'he's deceased'. She of course said she was sorry a few times and finished up her part and left to get the midwife.
The midwife comes in and starts crying, which of course makes ME start crying, it's just a chain reaction every time. I'm ok until people cry. I jokingly yelled at her for making me cry and she said 'i know, but we feel like these are OUR babies too'. I can't explain it, but that made me really happy to hear.
All in all I was there for over an hour. We talked a lot about Alex's condition and what happened and our plans for having more children. She went over with me how things will be a little different my next pregnancy because I will be involved with a perinatologist in Marshfield for level 2 ultrasounds and fetal echo's. (A perinatologist is a high risk obstetrician, although I won't be 'high risk' unless they in fact find something wrong with the baby) The only thing that remotely makes me high risk is that I had a premature baby, and honestly that was probably due to him starting to struggle in the womb and initiating labor because it was time to be born.
I was pretty happy that I will still be able to have the pregnancy followed by the midwives rather than seeing an OB (again, unless there's something wrong) because I really love them and the way they do things.
Anyway, everything looks fine in that respect and we were officially given the green light. It was really nice, after the crying to be able to talk about Alex, and someone really wants to listen.
One more point to add, to anyone who might still be harboring doubt about my mental health. We talked about depression, about things that can help etc and she agreed with me that antidepressants probably aren't the answer as long as I can still be productive and live life. At the end of the visit she said that I surely don't seem 'depressed', sad yes. But not depressed.
So I am taking care of myself, and I do have the doors open for help if it's needed.
You may be aware that after the birth of a baby there is a '6 week' post partum appointment that every new mother must have, and every new mother thoroughly dreads. In my case, dreads enough to put it off for months.
My original appointment was to be March 14th, I decided not to go that day because Alex was really unstable and I couldn't bring myself to be 2 hours away from him. After he died I just didn't want to do it, it was another one of those things where I was suppose to be bringing him with me and showing him off to all the midwives and nurses, and I couldn't.
Well, my reproductive health at stake, I did bite the bullet and go. I should really have called first to make sure the staff was aware that Alex had passed, but I didn't. I kind of figured that they would already know.
So the nurse takes me back and is doing the bp and all that and she askes 'what is your babies name?' And I swallow hard and say 'he's deceased'. She of course said she was sorry a few times and finished up her part and left to get the midwife.
The midwife comes in and starts crying, which of course makes ME start crying, it's just a chain reaction every time. I'm ok until people cry. I jokingly yelled at her for making me cry and she said 'i know, but we feel like these are OUR babies too'. I can't explain it, but that made me really happy to hear.
All in all I was there for over an hour. We talked a lot about Alex's condition and what happened and our plans for having more children. She went over with me how things will be a little different my next pregnancy because I will be involved with a perinatologist in Marshfield for level 2 ultrasounds and fetal echo's. (A perinatologist is a high risk obstetrician, although I won't be 'high risk' unless they in fact find something wrong with the baby) The only thing that remotely makes me high risk is that I had a premature baby, and honestly that was probably due to him starting to struggle in the womb and initiating labor because it was time to be born.
I was pretty happy that I will still be able to have the pregnancy followed by the midwives rather than seeing an OB (again, unless there's something wrong) because I really love them and the way they do things.
Anyway, everything looks fine in that respect and we were officially given the green light. It was really nice, after the crying to be able to talk about Alex, and someone really wants to listen.
One more point to add, to anyone who might still be harboring doubt about my mental health. We talked about depression, about things that can help etc and she agreed with me that antidepressants probably aren't the answer as long as I can still be productive and live life. At the end of the visit she said that I surely don't seem 'depressed', sad yes. But not depressed.
So I am taking care of myself, and I do have the doors open for help if it's needed.
Sunday, May 21, 2006
If you want to hear God laugh....tell him your plans
I would like to start off by thanking everyone who has shown us that there are good people in the world by thier kind words and generosity contributing to the Bubba's Bears 4 CHD project. I never in a million years expected the kind of response we have gotten.
I look back and think of all the events in our lives that have led me to this point where I am now. All of the times things just didn't work out the way we planned were just preparing us for the road that God meant for us to travel.
It's funny because a couple of years ago I heard in a country song the line 'if you want to hear god laugh, tell him your plans' and I thought that was sooo true. I never realized until now just how true it actually is.
We spend so much of our time trying to plan and control things and some of us are hard to teach I suppose. Life is so much less stressfull when you just let Jesus take the wheel and buckle up and enjoy the ride.
I look back and think of all the events in our lives that have led me to this point where I am now. All of the times things just didn't work out the way we planned were just preparing us for the road that God meant for us to travel.
It's funny because a couple of years ago I heard in a country song the line 'if you want to hear god laugh, tell him your plans' and I thought that was sooo true. I never realized until now just how true it actually is.
We spend so much of our time trying to plan and control things and some of us are hard to teach I suppose. Life is so much less stressfull when you just let Jesus take the wheel and buckle up and enjoy the ride.
Saturday, May 20, 2006
The elevator story
So, I said i'd be sharing stories of our adventure and here's one that I am remembering today.
The Elevator incident.
When we first got to the U of MN we noticed that the elevators tended to be a little quirky. Sometimes they wouldn't recognize that the door was shut and you'd have to jump to get it to shut enough and go (yeah, and what'd they do with that 4 million donation from the Vikings?) And Craig and I joked that one day, one of us was going to get stuck in one. My biggest fear.
Fast forward about 4 weeks. Craig was at home working for the weekend. Tyler's mom and I decided to go up to the 8th floor (yes, that hospital is backwards, the cafeteria is on the top instead of the basement) and have some dinner. We have our 'is this really meat?' cheeseburgers and headed back down to the 5th floor.
The elevator stopped on the 6th floor to allow more passengers on. An elderly woman, her daughter who had previousely had a stroke and was in a wheelchair, and 2 other seemingly fairly healthy daughters. Along with another woman who was traveling alone. While they were getting on the door was goofy and was trying to shut on them. Wierd
So they get in, the door is finally allowed to close and..........nothing happens. All the buttons go dim, and instead of the little LED thing saying what floor we were on it instead said ---.
We all sat there for a minute just waiting and processing what was happening. After pushing all of the buttons and nothing happening to our dear dead elevator we called for help.
The nice security guard comes and from outside the door we hear him say in very broken english something about resetting the system. A few minutes later we feel ourselves move, we thought we were going up (except for the lady in the corner who insisted we were falling to our death), but the doors didn't open.
The broken english security man said he was going to call maintenence. He told us to back up as he was going to try to shove something in the door to 'get us some air' (as if elevators are air tight or something). Then inquired as to if we would like him to try to get us some magazines. About this point is where I succumbed to the unrestrainable urge to laugh hysterically and yelled that the magazines wouldn't be necessary, but a margarita would be quite nice.
A few minutes later the maintenence gentleman comes and tells us he is going to reset the system (didn't we already try that?) Nothing happens.
By this time we had been in our close quarters for approximately 30 minutes. They informed us that thier meneuvers hadn't worked (oh, really?) and they were calling the elevator company. A few minutes latery they informed us that they man from the elevator company would be there in 20 minutes, as he was coming from across town.
I offered my phone to the other unfortunate souls in the elevator so they could call anyone they needed to call. (my phone worked so nicely in MPLS, sigh) and when they were finished I called Craig at work.
Me: You'll never guess where I am
Craig: Jail? (WHAT?!?!)
ME: errrr. no. stuck in the elevator at the hospital
Craig: LMAO
Well, not exactly the response I was after. So I call Alex's nurse and tell her where I am, she too found it rather amusing but was kind enough to inquire as to whether or not I was ok.
I'm still trying to repress my laughter, thinking 'yep, THIS is my life!' When the elderly woman sits down on the floor, begins hyperventilating and promptly insists that we were all going to die, she had it all figured out. We were going to crash to our deaths'
The rest of us are trying to calm her down, lest the poor soul go into cardiac arrest on us. She did regain her composure after a few minutes and everyone in the elevator breathed a sigh of relief that we were not, in fact, going to have to preform life saving measures in the elevator.
A bit later we heard someone from outside tell us to stand back. It was like something in a movie and I pictured they were going to try to blow the door up with dynamite or something, they were quite dramatic.
Then this big buy prys the doors open in some heroic effort akin to a superman move. We all stepped out and strange lady in the corner proceeded to hug everyone, apparently going through such a 'traumatic' experience showed her the love.
Someone from the hospital took our names and addresses. I guess to prepare thier legal defense if any of us decided we were going to sue for pain and suffering or something and gave us all $4.50 meal vouchers for the cafeteria. Apparently we HAD actually gone up when we thought, because we were now back on the 8th floor.
A few of the folks then refused to enter another elevator and took the stairs down. Myself, thinking that 8 floors down was a bit ambitious (was going down to smoke) decided to get in another elevator. The nice security fellow demanded he ride with me, apparently he was afraid I'd break another elevator.
The Elevator incident.
When we first got to the U of MN we noticed that the elevators tended to be a little quirky. Sometimes they wouldn't recognize that the door was shut and you'd have to jump to get it to shut enough and go (yeah, and what'd they do with that 4 million donation from the Vikings?) And Craig and I joked that one day, one of us was going to get stuck in one. My biggest fear.
Fast forward about 4 weeks. Craig was at home working for the weekend. Tyler's mom and I decided to go up to the 8th floor (yes, that hospital is backwards, the cafeteria is on the top instead of the basement) and have some dinner. We have our 'is this really meat?' cheeseburgers and headed back down to the 5th floor.
The elevator stopped on the 6th floor to allow more passengers on. An elderly woman, her daughter who had previousely had a stroke and was in a wheelchair, and 2 other seemingly fairly healthy daughters. Along with another woman who was traveling alone. While they were getting on the door was goofy and was trying to shut on them. Wierd
So they get in, the door is finally allowed to close and..........nothing happens. All the buttons go dim, and instead of the little LED thing saying what floor we were on it instead said ---.
We all sat there for a minute just waiting and processing what was happening. After pushing all of the buttons and nothing happening to our dear dead elevator we called for help.
The nice security guard comes and from outside the door we hear him say in very broken english something about resetting the system. A few minutes later we feel ourselves move, we thought we were going up (except for the lady in the corner who insisted we were falling to our death), but the doors didn't open.
The broken english security man said he was going to call maintenence. He told us to back up as he was going to try to shove something in the door to 'get us some air' (as if elevators are air tight or something). Then inquired as to if we would like him to try to get us some magazines. About this point is where I succumbed to the unrestrainable urge to laugh hysterically and yelled that the magazines wouldn't be necessary, but a margarita would be quite nice.
A few minutes later the maintenence gentleman comes and tells us he is going to reset the system (didn't we already try that?) Nothing happens.
By this time we had been in our close quarters for approximately 30 minutes. They informed us that thier meneuvers hadn't worked (oh, really?) and they were calling the elevator company. A few minutes latery they informed us that they man from the elevator company would be there in 20 minutes, as he was coming from across town.
I offered my phone to the other unfortunate souls in the elevator so they could call anyone they needed to call. (my phone worked so nicely in MPLS, sigh) and when they were finished I called Craig at work.
Me: You'll never guess where I am
Craig: Jail? (WHAT?!?!)
ME: errrr. no. stuck in the elevator at the hospital
Craig: LMAO
Well, not exactly the response I was after. So I call Alex's nurse and tell her where I am, she too found it rather amusing but was kind enough to inquire as to whether or not I was ok.
I'm still trying to repress my laughter, thinking 'yep, THIS is my life!' When the elderly woman sits down on the floor, begins hyperventilating and promptly insists that we were all going to die, she had it all figured out. We were going to crash to our deaths'
The rest of us are trying to calm her down, lest the poor soul go into cardiac arrest on us. She did regain her composure after a few minutes and everyone in the elevator breathed a sigh of relief that we were not, in fact, going to have to preform life saving measures in the elevator.
A bit later we heard someone from outside tell us to stand back. It was like something in a movie and I pictured they were going to try to blow the door up with dynamite or something, they were quite dramatic.
Then this big buy prys the doors open in some heroic effort akin to a superman move. We all stepped out and strange lady in the corner proceeded to hug everyone, apparently going through such a 'traumatic' experience showed her the love.
Someone from the hospital took our names and addresses. I guess to prepare thier legal defense if any of us decided we were going to sue for pain and suffering or something and gave us all $4.50 meal vouchers for the cafeteria. Apparently we HAD actually gone up when we thought, because we were now back on the 8th floor.
A few of the folks then refused to enter another elevator and took the stairs down. Myself, thinking that 8 floors down was a bit ambitious (was going down to smoke) decided to get in another elevator. The nice security fellow demanded he ride with me, apparently he was afraid I'd break another elevator.
random oddities
After some thinking about the entry on Thursday (2 before this) I have come to the conclusion that this journal DOES tend to be a bit misleading. I mainly post entries here when I'm struggling, so that's what people see.......
Rest assured folks. I'm as sane as I always was (which may or may not be a good thing).
Last night I had a baby dream. Not sure if the baby was Alex, but it felt like it was. A healthy baby boy and I was just doing all the things you'd do with a healthy baby boy. Interestingly enough, I knew it was a dream and didn't wake up upset.
I don't have much to say today. It's a gloomy day and I have a pile of laundry waiting for me. A great day to preform some bear surgery and get some things done around the house. Which you can tell from this entry, I'm not doing.
Rest assured folks. I'm as sane as I always was (which may or may not be a good thing).
Last night I had a baby dream. Not sure if the baby was Alex, but it felt like it was. A healthy baby boy and I was just doing all the things you'd do with a healthy baby boy. Interestingly enough, I knew it was a dream and didn't wake up upset.
I don't have much to say today. It's a gloomy day and I have a pile of laundry waiting for me. A great day to preform some bear surgery and get some things done around the house. Which you can tell from this entry, I'm not doing.
Friday, May 19, 2006
God's children
For those of you who've seen me make mention of Tyler, please pray with everything you've got.
A little background. Tyler was born January 17th with the same diagnosis Alex had. Alex and Tyler were roomates for over a month and we got to know his family well.
Tyler has been struggling lately. He has from what i'm told a blood clot in his heart and there was some concern he was becoming septic a few days ago.
At 1:30 this morning I received a phone call from his mother that his hemoglobin had dropped, she was on her way to the hospital and all she knew is they were doing a scan to see where he was bleeding from (if you remember from Alex, when your hem drops, it's bleeding somewhere).
Then at 3:30 she called me again. Tyler had taken another turn for the worse and was very dusky (hospital lingo for turning blue), they had gone up on his vent settings but it wasn't helping and at that time they were bagging him and his mother heard them say he was 'hard to bag'. I asked her to ask the doctors if she should have someone come, and the doctors told her to give them 30 minutes and they would come talk to her. I haven't heard anything since.
So I ask for your prayers again, your prayers were amazing in helping Alex to overcome so much, they are very powerful. I'd also like to ask you to pray for our other former roomate Luke, He's having some issues he's trying to overcome as well.
___________________________________________
Update: I got ahold of Tyler's mom. He pulled through but is still less than stable, the docs really aren't sure what's going on.....
A little background. Tyler was born January 17th with the same diagnosis Alex had. Alex and Tyler were roomates for over a month and we got to know his family well.
Tyler has been struggling lately. He has from what i'm told a blood clot in his heart and there was some concern he was becoming septic a few days ago.
At 1:30 this morning I received a phone call from his mother that his hemoglobin had dropped, she was on her way to the hospital and all she knew is they were doing a scan to see where he was bleeding from (if you remember from Alex, when your hem drops, it's bleeding somewhere).
Then at 3:30 she called me again. Tyler had taken another turn for the worse and was very dusky (hospital lingo for turning blue), they had gone up on his vent settings but it wasn't helping and at that time they were bagging him and his mother heard them say he was 'hard to bag'. I asked her to ask the doctors if she should have someone come, and the doctors told her to give them 30 minutes and they would come talk to her. I haven't heard anything since.
So I ask for your prayers again, your prayers were amazing in helping Alex to overcome so much, they are very powerful. I'd also like to ask you to pray for our other former roomate Luke, He's having some issues he's trying to overcome as well.
___________________________________________
Update: I got ahold of Tyler's mom. He pulled through but is still less than stable, the docs really aren't sure what's going on.....
Thursday, May 18, 2006
Only as crazy as the xrazy worm says I am
hmmm. After reading the latest entry in our guestbook I am left pondering. Are my posts in this journal painting an accurate picture? Or am I just not seeing the accurate picture myself?
I'm not sure if that makes any sense or not. What I mean is, do these entries make me sound more depressed and grief stricken than I feel like I am, or am I really THAT depressed and grief stricken and I am the only one who can't see it?
You see, I actually think I'm doing fairly well. The bear project, the warm spring weather, and doing things outside with the kids have been keeping me busy, and happy lately. Sometimes I feel guilty almost, like I shouldn't be as 'settled' as I am with all of this. Am I just lost? Am I really battling demons so deep that everyone can see it but me? I'm not sure.
To the person who posted the last entry, thank you for your concern. I could tell it wasn't accusatory, but rather genuine and I thank you for that. The kids are doing well, I am very proud of them.
As far as antidepressants, I am not one of those people that thinks badly of them. There was a time when I needed them to get things under control and If that time comes again, I will. I do remember though that although they helped me to deal with things better, they also made it difficult for me to express my emotions,, and I really think that is important as of now. I'm told there are phases of grief, and a book I read said that if you dont' allow yourself to go through them, they will come back to haunt you. So I think it's important that I grieve properly, which, at least with my history I don't think is possible on medication.
Counseling may be an option, but I'm not entirely certain at this point anyway that it's needed. I fear it will just keep me in those depressing moments to talk them to death if you know what I mean. Alex is gone, there isnt' anything I can do to bring him back and I'm trying to pick myself up and carry on, and up until right now I had been sure I was doing a decent job of it, but maybe I'm deceiving myself. hmmmmm
I will have to spend some time thinking about this.
I'm not sure if that makes any sense or not. What I mean is, do these entries make me sound more depressed and grief stricken than I feel like I am, or am I really THAT depressed and grief stricken and I am the only one who can't see it?
You see, I actually think I'm doing fairly well. The bear project, the warm spring weather, and doing things outside with the kids have been keeping me busy, and happy lately. Sometimes I feel guilty almost, like I shouldn't be as 'settled' as I am with all of this. Am I just lost? Am I really battling demons so deep that everyone can see it but me? I'm not sure.
To the person who posted the last entry, thank you for your concern. I could tell it wasn't accusatory, but rather genuine and I thank you for that. The kids are doing well, I am very proud of them.
As far as antidepressants, I am not one of those people that thinks badly of them. There was a time when I needed them to get things under control and If that time comes again, I will. I do remember though that although they helped me to deal with things better, they also made it difficult for me to express my emotions,, and I really think that is important as of now. I'm told there are phases of grief, and a book I read said that if you dont' allow yourself to go through them, they will come back to haunt you. So I think it's important that I grieve properly, which, at least with my history I don't think is possible on medication.
Counseling may be an option, but I'm not entirely certain at this point anyway that it's needed. I fear it will just keep me in those depressing moments to talk them to death if you know what I mean. Alex is gone, there isnt' anything I can do to bring him back and I'm trying to pick myself up and carry on, and up until right now I had been sure I was doing a decent job of it, but maybe I'm deceiving myself. hmmmmm
I will have to spend some time thinking about this.
Wednesday, May 17, 2006
Prayer request
Please pray for Alex's old roomate and 'wonder twin' Tyler, he's a 'very sick little boy' as per his doctors at the U. It's never good when they say those words.
Monday, May 15, 2006
The way I see it Forest Gump had it all wrong
I think Forrest Gump had it all wrong with his Life is like a Box of chocolates thing. Life is actually very little like a box of chocolates. A box of chocolates comes with that nifty little map in the top of the box to tell you precisely where your beloved caramel chocolates are located. And even if you somehow, by chance LOSE that little map, you can be fairly certain that you are still going to get....... chocolate, yes?
I've been thinking about this, as if I have nothing better to do (and yes i'm certain I have certifiably lost my sanity) and trying to think of a clever metaphor for what life IS actually like. All i've been able to come up with is a pile of &*#$ and well, that's not very clever or nice....... although maybe fairly close to being accurate.
So anyway, that's my wisdom for the day, or lack thereof. And btw, I'd like to thank the FDA, FBI, CIA, NBA, of whoever it is that ensures that when I buy a box of chocolates, I DO know what i'm gonna get.
Sunday, May 14, 2006
mothers day... but different
Well, I thought i'd be ok. Really I did. Mothers day is just another day. I dreamt last night that it was the evening of mothers day and I thought 'whew, i got through it!' Only to wake up this morning realizing it had just begun.
I woke up crying, quickly got dressed and went to the cemetary. I sat there for a while, crying and talking to Alex and asking all of the mommies in heaven to take special care of him for me.
This afternoon my brother visited. He had been gone on vacation and it was nice to see him.
I now have a migraine. Strange because I haven't had one since I was pregnant and didn't quite know what it was when the vision changes hit me. So this will be short, the bright light of the computer monitor isn't so pleasant. I just have to get through dinner and then I can rest for a bit. Craig, bless his heart tried to get today off but couldn't.
I woke up crying, quickly got dressed and went to the cemetary. I sat there for a while, crying and talking to Alex and asking all of the mommies in heaven to take special care of him for me.
This afternoon my brother visited. He had been gone on vacation and it was nice to see him.
I now have a migraine. Strange because I haven't had one since I was pregnant and didn't quite know what it was when the vision changes hit me. So this will be short, the bright light of the computer monitor isn't so pleasant. I just have to get through dinner and then I can rest for a bit. Craig, bless his heart tried to get today off but couldn't.
Saturday, May 13, 2006
The roller coaster
I sit here tonight worrying, not about my own child but about someone else's. Apparently little Tyler is septic. If you remember, this is what ultimately took Alex's life. No child should have to go through any of this, it's not fair!
I'm feeling especially cranky tonight, since mothers day is less than 90 minutes away. I am a mother, but one of my children can't be with me. I miss him so much.
I read journals here on caringbridge about other kids who are in various phases of struggling with problems much like Alex's. The constant roller coaster of emotions. I am reminded of our stay in the hospital. I remember sitting on that first chair at the end of the hall in the waiting area during Alex's many OR procedures, waiting with baited breath for a glimpse of a doctor I knew was with him to come out, signaling that they were finishing up and I could see him soon. When they did come out I would wander down the hall and turn the corner to see if the door to his room was open. My heart always skipped a few beats as I walked in there because I couldn't be sure if he was stable or if he was having trouble. I remember the internal sigh of releive when I would see his monitor and every number was where it was suppose to be. I became very good at scanning that monitor for those numbers. If they were above 130 for heartrate, above 60 for systolic bp, above 80 for sats, between 36 and 37 for temp, and below 15 for CVP I could rest easy for that moment.
I became fairly good at teaching myself to only live in the moment. It wasn't possible to think ahead longer than that. Things could change in the blink of an eye and you never knew which way they would go.
I also became pretty good at reading people. You see, dont' tell anyone....... but I loved eavesdropping. I listened to everything. Hipaa laws be damned, I am a very curious person. Sometimes I would overhear that a baby was sicker than mine, and although I didn't want any baby to be sick, it put me at ease a little. One time when they were doing an echo on Alex, they were talking about another kiddo and the nurse said to me 'you know your kid isn't the sickest anymore when they are talking about someone else while looking at his heart'. Little things like that would just make your day.
I've read back on entries in this journal and come to the realization that while Alex was in the hospital, there was a lot of things I left out of his journal. Not intentionally but because my time on the computer was limited, and because at that end of the day my mind wanted nothing more than to just shut down from information and emotional overload. The memories are still fresh in my mind, sometimes they come in spurts. But I will put them here when I think of them and you all can once again, for the moment....... live with us in the pediatric intensive care unit.
I'm feeling especially cranky tonight, since mothers day is less than 90 minutes away. I am a mother, but one of my children can't be with me. I miss him so much.
I read journals here on caringbridge about other kids who are in various phases of struggling with problems much like Alex's. The constant roller coaster of emotions. I am reminded of our stay in the hospital. I remember sitting on that first chair at the end of the hall in the waiting area during Alex's many OR procedures, waiting with baited breath for a glimpse of a doctor I knew was with him to come out, signaling that they were finishing up and I could see him soon. When they did come out I would wander down the hall and turn the corner to see if the door to his room was open. My heart always skipped a few beats as I walked in there because I couldn't be sure if he was stable or if he was having trouble. I remember the internal sigh of releive when I would see his monitor and every number was where it was suppose to be. I became very good at scanning that monitor for those numbers. If they were above 130 for heartrate, above 60 for systolic bp, above 80 for sats, between 36 and 37 for temp, and below 15 for CVP I could rest easy for that moment.
I became fairly good at teaching myself to only live in the moment. It wasn't possible to think ahead longer than that. Things could change in the blink of an eye and you never knew which way they would go.
I also became pretty good at reading people. You see, dont' tell anyone....... but I loved eavesdropping. I listened to everything. Hipaa laws be damned, I am a very curious person. Sometimes I would overhear that a baby was sicker than mine, and although I didn't want any baby to be sick, it put me at ease a little. One time when they were doing an echo on Alex, they were talking about another kiddo and the nurse said to me 'you know your kid isn't the sickest anymore when they are talking about someone else while looking at his heart'. Little things like that would just make your day.
I've read back on entries in this journal and come to the realization that while Alex was in the hospital, there was a lot of things I left out of his journal. Not intentionally but because my time on the computer was limited, and because at that end of the day my mind wanted nothing more than to just shut down from information and emotional overload. The memories are still fresh in my mind, sometimes they come in spurts. But I will put them here when I think of them and you all can once again, for the moment....... live with us in the pediatric intensive care unit.
Tuesday, May 9, 2006
Dreams
Dreams.
Last night I dreamt I had twin baby boys. I have no idea what was wrong with them except that they were in the hospital and both had trach's. It was one of those riled up worrying dreams, worrying about how I'm going to keep them alive and where the next curveball is coming from. I hate those dreams. I feel that all too familiar knot in my stomach, the knot I had while Alex was in the hospital. It feels like when you suck your belly in and breathe like that all day..... your muscles are sore. It's strange.
Apparently Craig dreamt of Alex last night. I realized that I don't dream of Alex anymore....... not him precisely anyway. I dream of hospitals, illness, fear, but the baby involved is never Alex. What does that mean?
Kind of makes me feel guilty and even sad. Sad because at least if I dreamt about him for that moment I would be in some remote way WITH him.
I do however dream of twins a lot. Maybe it's because I worry so much about Tyler and Luke that in some way I feel like I had more than one sick baby. I don't know.
On another note, I think Austin and Chris might have mono or something. I won't go into it but lets just say that my boys, who NEVER get sick..... are really being kicked in the butt by something these past few days:( I'm watching the situation closely.
Anyway, looks like it's gonna thunderstorm and Jack could use some cuddling I bet.
Last night I dreamt I had twin baby boys. I have no idea what was wrong with them except that they were in the hospital and both had trach's. It was one of those riled up worrying dreams, worrying about how I'm going to keep them alive and where the next curveball is coming from. I hate those dreams. I feel that all too familiar knot in my stomach, the knot I had while Alex was in the hospital. It feels like when you suck your belly in and breathe like that all day..... your muscles are sore. It's strange.
Apparently Craig dreamt of Alex last night. I realized that I don't dream of Alex anymore....... not him precisely anyway. I dream of hospitals, illness, fear, but the baby involved is never Alex. What does that mean?
Kind of makes me feel guilty and even sad. Sad because at least if I dreamt about him for that moment I would be in some remote way WITH him.
I do however dream of twins a lot. Maybe it's because I worry so much about Tyler and Luke that in some way I feel like I had more than one sick baby. I don't know.
On another note, I think Austin and Chris might have mono or something. I won't go into it but lets just say that my boys, who NEVER get sick..... are really being kicked in the butt by something these past few days:( I'm watching the situation closely.
Anyway, looks like it's gonna thunderstorm and Jack could use some cuddling I bet.
Friday, April 28, 2006
All I have
Today was an especially hard day. 3 months old. You would be laughing, learning to roll over, preffering my face to any other, reaching out to play with your toys..... The visions of this that I get in my head are beautiful and so painful at the same time.
Every day, in everything I do I think of you. When I wake up in the morning I feel like I should be doing something and then it hits me....... I should be getting you out of bed and feeding and changing you, excited to start our day together. I remember when the other kids were little, just waking up every morning and being glad that it was finally morning........ now I wake up every morning and feel sad that I have to live yet another day without you.
Today daddy and I were very sad and we opened your box. The box sits on our headboard and seems to only get opened when we are feeling especially sad and you know it only makes us sadder. Everything that was connected to you is in that box:
your footprints from the hospital,
your booties, both the blue baseball ones that the nurses loved so much because they fit on your swollen little feet so well and the jingly horsey ones that were on your feet the day you left us, that still have blood on them from when nurse Kelsa made them messy a couple of days before.
The invitations to your 'birthday party' we had for you the first day
Your hospital bracelet taped to the disk that has your first echocardiogram images on it.
Your lock of hair, crib card, the pacifier the nice nurse at Marshfield gave you. So many things that in a perfect world would hold some sentimental value, but in our world they are our most valuable posessions. The one thing we don't have is your hat. The hat that your nurse searched high and low for because your sweet head was too tiny for the regular baby hats..... yours had to be special. We never got your hat from the hospital.
We miss you so very much. Daddy said to me today that he was scared to have another child because he was afraid that you would think we were trying to replace you. I told him that we all know, you included that no one in the universe could ever replace you.....
I hope you are having fun in heaven. I take comfort in the fact that you will never have to experience the pain that we feel, your new perfect body will always be young and healthy and you will never feel any pain again, only joy basking in God's light. I can't wait until the day that I can be with you again I dream of it a lot when the nights get quiet and I can't sleep. I envision me going to heaven and seeing you and scooping you up in my arms and holding you tight for an eternity.
Sweet bubba, I hope you know how much we loved you in life and how much we will always love you. I hope that all those long days in that hospital bed you felt that. I hope we made the right decisions for you, we made them out of our love. Until we meet again.........
____________________________________________
I'm not sure if I've shared this poem before or not, but it is one that the 'poetry therapist' (which I thought was kind of a hokey profession and she cried more than I did the poor soul) brought and read to me the day before Alex's surgery and it does a good job at explaining things
But not Today
-Brenda Neal
Sometimes
I can let go of the past,
a past locked behind the doors
of painful memories.
But not today.
Sometimes
I can accept the reality
that is me
and the journey headlong
into the unknown.
But not today.
Today change comes hard.
I wear my feelings on my sleeve,
and nothing seems right.
Sometimes
I feel I can
weather anything
tackle anything
do anything
But not today.
Every day, in everything I do I think of you. When I wake up in the morning I feel like I should be doing something and then it hits me....... I should be getting you out of bed and feeding and changing you, excited to start our day together. I remember when the other kids were little, just waking up every morning and being glad that it was finally morning........ now I wake up every morning and feel sad that I have to live yet another day without you.
Today daddy and I were very sad and we opened your box. The box sits on our headboard and seems to only get opened when we are feeling especially sad and you know it only makes us sadder. Everything that was connected to you is in that box:
your footprints from the hospital,
your booties, both the blue baseball ones that the nurses loved so much because they fit on your swollen little feet so well and the jingly horsey ones that were on your feet the day you left us, that still have blood on them from when nurse Kelsa made them messy a couple of days before.
The invitations to your 'birthday party' we had for you the first day
Your hospital bracelet taped to the disk that has your first echocardiogram images on it.
Your lock of hair, crib card, the pacifier the nice nurse at Marshfield gave you. So many things that in a perfect world would hold some sentimental value, but in our world they are our most valuable posessions. The one thing we don't have is your hat. The hat that your nurse searched high and low for because your sweet head was too tiny for the regular baby hats..... yours had to be special. We never got your hat from the hospital.
We miss you so very much. Daddy said to me today that he was scared to have another child because he was afraid that you would think we were trying to replace you. I told him that we all know, you included that no one in the universe could ever replace you.....
I hope you are having fun in heaven. I take comfort in the fact that you will never have to experience the pain that we feel, your new perfect body will always be young and healthy and you will never feel any pain again, only joy basking in God's light. I can't wait until the day that I can be with you again I dream of it a lot when the nights get quiet and I can't sleep. I envision me going to heaven and seeing you and scooping you up in my arms and holding you tight for an eternity.
Sweet bubba, I hope you know how much we loved you in life and how much we will always love you. I hope that all those long days in that hospital bed you felt that. I hope we made the right decisions for you, we made them out of our love. Until we meet again.........
____________________________________________
I'm not sure if I've shared this poem before or not, but it is one that the 'poetry therapist' (which I thought was kind of a hokey profession and she cried more than I did the poor soul) brought and read to me the day before Alex's surgery and it does a good job at explaining things
But not Today
-Brenda Neal
Sometimes
I can let go of the past,
a past locked behind the doors
of painful memories.
But not today.
Sometimes
I can accept the reality
that is me
and the journey headlong
into the unknown.
But not today.
Today change comes hard.
I wear my feelings on my sleeve,
and nothing seems right.
Sometimes
I feel I can
weather anything
tackle anything
do anything
But not today.
Thursday, April 27, 2006
I haven't updated in a bit. I got a phone call from Alex's girlfriend in heaven, Gracie's mom yesterday. It was so nice to talk to her. It's nice sometimes just to be able to talk to people who have been there and ARE there themselves.
I'm still throwing myself into making the bears for kids with CHD. It's a nice way to pass the time and I can't wait until I get enough done to actually send them out. Again, if anyone has any nice stuffed bears laying around, please let me know. You can see some of the ones i've finished at http://profiles.yahoo.com/kat_maid_to_ahcsj not sure how long i'll have the pic on there.
Somethign to share:
Bereaved Parents Wish List
I wish my child hadn't died. I wish I had him back.
I wish you wouldn't be afraid to speak my child's name. My child lived and was very important to me. I need to hear that he was important to you also.
If I cry and get emotional when you talk about my child, I wish you knew that it isn't because you have hurt me. My child's death is the cause of my tears. You have talked about my child and you have allowed me to share my grief. I thank you for both.
Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.
I need diversions, so I do want to hear about you, but I also want you to hear about me. I might be sad and I might cry, but I wish you
would let me talk about my child; my favorite topic of the day.
I know that you think of and pray for me often. I also know that my child's death pains you too. I wish you would let me know these things through a phone call, a card or note, or a real big hug.
I wish you wouldn't expect my grief to be over. These first years are traumatic for me, but I wish you could understand that my grief
will never be over. I will suffer the death of my child until the day I die.
I am working hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child and I will always grieve that he is dead.
I wish you wouldn't expect me 'not to think about it' or 'be happy'. Neither will happen for a very long time, so don't frustrate yourself.
I don't want to have a 'Pity party', but I do wish you would let me grieve. I must hurt before I can heal.
I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you.
When I say, 'I'm doing okay', I wish you could understand that I don't 'feel' okay and that I struggle daily.
I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, hopelessness and overwhelming sadness are
all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.
Your advice to 'take it one day at a time' is excellent advice.
However, a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.
Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.
I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died and I will never be that person again.
I wish very much that you could understand ~ understand my loss and my grief. But, I pray daily that you will never understand.
--Poem from Compassionate Friends
I'm still throwing myself into making the bears for kids with CHD. It's a nice way to pass the time and I can't wait until I get enough done to actually send them out. Again, if anyone has any nice stuffed bears laying around, please let me know. You can see some of the ones i've finished at http://profiles.yahoo.com/kat_maid_to_ahcsj not sure how long i'll have the pic on there.
Somethign to share:
Bereaved Parents Wish List
I wish my child hadn't died. I wish I had him back.
I wish you wouldn't be afraid to speak my child's name. My child lived and was very important to me. I need to hear that he was important to you also.
If I cry and get emotional when you talk about my child, I wish you knew that it isn't because you have hurt me. My child's death is the cause of my tears. You have talked about my child and you have allowed me to share my grief. I thank you for both.
Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.
I need diversions, so I do want to hear about you, but I also want you to hear about me. I might be sad and I might cry, but I wish you
would let me talk about my child; my favorite topic of the day.
I know that you think of and pray for me often. I also know that my child's death pains you too. I wish you would let me know these things through a phone call, a card or note, or a real big hug.
I wish you wouldn't expect my grief to be over. These first years are traumatic for me, but I wish you could understand that my grief
will never be over. I will suffer the death of my child until the day I die.
I am working hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child and I will always grieve that he is dead.
I wish you wouldn't expect me 'not to think about it' or 'be happy'. Neither will happen for a very long time, so don't frustrate yourself.
I don't want to have a 'Pity party', but I do wish you would let me grieve. I must hurt before I can heal.
I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you.
When I say, 'I'm doing okay', I wish you could understand that I don't 'feel' okay and that I struggle daily.
I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, hopelessness and overwhelming sadness are
all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.
Your advice to 'take it one day at a time' is excellent advice.
However, a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.
Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.
I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died and I will never be that person again.
I wish very much that you could understand ~ understand my loss and my grief. But, I pray daily that you will never understand.
--Poem from Compassionate Friends
Saturday, April 22, 2006
Quality of life
So I was thinking today about the possibility of having another child and I realized, I don't want another child. I want Alex. I love my 5 living children dearly, but no other child in the world is as special as Alex was and even if we have 20, there will always just be this special person who isn't with us. It isn't that i wanted a sick child, that I wanted to have to worry every day of my childs life that it might be his last, but we were so willing to take on whatever God had planned for us with him. I remember after his second surgery one of the cardiologists came to talk to us about the fact that they found the 2 small bleeds in his brain and that there was no way of knowing what this meant for him long term, I remember thinking "so what?! He's ALIVE" and even said so much to her, in a nicer way. She said it was a good thing that we had that outlook on it.
I'm reading a book right now called "Walk on Water". It's about a pediatric cardiac surgery center that specializes in CHD. It's a tough read, simply because so many of the scenarios that play out in the book we either dealt with ourselves, or were played out behind the closed doors of the OR with our son. It's very sad, some of these kids really do have terrible quality of life in the realest sense. I mean I've always said that we aren't capable of judging what someone else's quality of life is, but still.
And it makes me think about Alex.
We knew he would have had continued surgeries on that conduit, the tissue wouldn't have grown with him.
We definitely had another surgery this summer, an even more complex surgery than he went through initially. To further complicate an already complicated surgery, scar tissue building up in the heart area is a surgeons nightmare.
His right ventricle didn't work that great which affected his lungs. Probably would hve been on oxygen at home.
He was in acute renal failure, which may or may not have resolved, possibly would have made him need a kidney transplant, which he honestly might not have even been eligable for with a "bad heart".
He had those brain bleeds so he could have been impaired neurologically, to what degree who knows
He could very well have had significant hearing loss from the rounds of Vancomycin he was on for suspected or proven infections.
He would have needed extensive speech and language therapy because of the long term ventilator use. As well as physical therapy because his hips were stuck in the "frog legs" position and his mucles had atrophied so much from laying there all those weeks.
And that's just getting started. So what would his "quality of life" been? Of course don't think for an instant we wouldn't have gladly accepted him in any way shape or form he came, if we weren't willing to do that we wouldn't have worked so hard to get him the help he needed from the get-go. But if I'm honest with myself........ What kind of a way to live is that? To know that you are always going to be cut open, poked, prodded. To have to hand him off to the OR team time and time again while he cried. To have to watch him try to play with his friends and get winded and have to see him sad that he couldn't do this or that?
Of course from day one I was certain I was going to have that kid who amazed everyone. Who was a medical miracle in every sense of the word. But although Alex was a miracle, instead of doing things quickly and easily he tended to be a rather difficult little stinker.
I don't mean to offend or upset anyone with this. If Alex were still here laying in that room on unit 5C I wouldn't even be thinking this, but I need to come to grips with what his reality would have been, and what our reality would have been so that I can fully let him go, so that I can find some comfort within myself that he really is in a better place. Free of pain, "cant's", what-if's. And someday, I will get my perfect body too and get to spend the rest of my life with him and learn even more from him.
I'm reading a book right now called "Walk on Water". It's about a pediatric cardiac surgery center that specializes in CHD. It's a tough read, simply because so many of the scenarios that play out in the book we either dealt with ourselves, or were played out behind the closed doors of the OR with our son. It's very sad, some of these kids really do have terrible quality of life in the realest sense. I mean I've always said that we aren't capable of judging what someone else's quality of life is, but still.
And it makes me think about Alex.
We knew he would have had continued surgeries on that conduit, the tissue wouldn't have grown with him.
We definitely had another surgery this summer, an even more complex surgery than he went through initially. To further complicate an already complicated surgery, scar tissue building up in the heart area is a surgeons nightmare.
His right ventricle didn't work that great which affected his lungs. Probably would hve been on oxygen at home.
He was in acute renal failure, which may or may not have resolved, possibly would have made him need a kidney transplant, which he honestly might not have even been eligable for with a "bad heart".
He had those brain bleeds so he could have been impaired neurologically, to what degree who knows
He could very well have had significant hearing loss from the rounds of Vancomycin he was on for suspected or proven infections.
He would have needed extensive speech and language therapy because of the long term ventilator use. As well as physical therapy because his hips were stuck in the "frog legs" position and his mucles had atrophied so much from laying there all those weeks.
And that's just getting started. So what would his "quality of life" been? Of course don't think for an instant we wouldn't have gladly accepted him in any way shape or form he came, if we weren't willing to do that we wouldn't have worked so hard to get him the help he needed from the get-go. But if I'm honest with myself........ What kind of a way to live is that? To know that you are always going to be cut open, poked, prodded. To have to hand him off to the OR team time and time again while he cried. To have to watch him try to play with his friends and get winded and have to see him sad that he couldn't do this or that?
Of course from day one I was certain I was going to have that kid who amazed everyone. Who was a medical miracle in every sense of the word. But although Alex was a miracle, instead of doing things quickly and easily he tended to be a rather difficult little stinker.
I don't mean to offend or upset anyone with this. If Alex were still here laying in that room on unit 5C I wouldn't even be thinking this, but I need to come to grips with what his reality would have been, and what our reality would have been so that I can fully let him go, so that I can find some comfort within myself that he really is in a better place. Free of pain, "cant's", what-if's. And someday, I will get my perfect body too and get to spend the rest of my life with him and learn even more from him.
Friday, April 21, 2006
What to do
I thought about discontinuing this journal. It's become so sad and I don't want Alex to be associated with sadness because he made us so happy in his life.
But I think it's important to keep it. Because someday someone might read it who is new to thier loss and by reading it they might find some comfort in knowing that sometimes you really do lost control, as parents we try to just be so strong and make the world think that we are dealing with things when we aren't and it's ok to just not be able to deal with it sometimes.
So I will keep this journal and let my feelings come out in it, and maybe someday the entried will not be so sad, maybe as I heal it will change some and it will be important for me to be able to read back and see the changes, see the healing as it happened.
But I think it's important to keep it. Because someday someone might read it who is new to thier loss and by reading it they might find some comfort in knowing that sometimes you really do lost control, as parents we try to just be so strong and make the world think that we are dealing with things when we aren't and it's ok to just not be able to deal with it sometimes.
So I will keep this journal and let my feelings come out in it, and maybe someday the entried will not be so sad, maybe as I heal it will change some and it will be important for me to be able to read back and see the changes, see the healing as it happened.
Thursday, April 20, 2006
I'm not ok!
I thought I had done the right thing by going back, but now I am left unsure. These past 2 days have seemed more challenging than the one's before. Is it because going back there really showed me that he's gone? Maybe there was some comfort in pretending he was still there.
I miss him. I barely got to know him but it's unbearable how much I miss him. He would be 3 months old as of next friday and I was brutally reminded of that by a pamphlet I got in the mail today 'your 3 month old'. It left me sobbing on my bed tearing everything out of the box.
It's been said that God only gives us more than we can handle. Did he screw up this time? Maybe God isn't omnipotent like we want to beleive and he made a mistake. Can I really deal with this? Can Craig? Can we ever become real people again or will we live the rest of our lives just this shell of who we were meant to be?
I try not to be angry. I try to just keep it all together and carry on with life like Alex would have wanted me to. He fought every single day for his life and woulnd't want us to just let ours slip away from us. But I don't know if I can. I don't know if I will ever be able to get through a day without my heart hurting so much.
It's just not fair. Babies aren't suppose to die. He was suppose to bury ME in the ground.
I have trouble beleiving sometimes that a good god would let people hurt this way. The way Alex did and the way I am now. Someone said to me that sometimes God chooses to heal, and sometimes he chooses to comfort those of us left behind. We'll I'm telling ya, I'm not feeling any comfort. I feel like God abandoned us just when we were starting to finally get it. It doesn't make any sense! I sat out on the deck the other night crying in the rain, telling God that if he's so almighty, to get his butt down here and tell me why he took my son, at least I deserve that......... Did I get any answers? no and beleive me i've listened. I've listened so intently for any speck of anything that would provide me some peace and it's not coming.
Yes, my faith is waivering. Just when I had really found it. Because God took my child from me and left me alone, in my own misery to deal with it.
People say stupid things, 'oh he's better off in heaven'.... Well if that's the case, why did God send him here at all? To feel pain? Are there no better ways to teach a soul than to destroy it? Maybe he didnt' destroy Alex's, but he did mine. I've always beleived that God molds us, to fight in his army when the time comes....... how can I fight if I don't have anything left to give? Alex may well be 'better off' in heaven, but he would have had a damn good life here too. He will spend eternity in heaven, life is in the blink of an eye....... why not let him live some of it?
The world is just going on around me and I'm struggling to keep up. Am I depressed? another silly question people ask.... I'm depressed, I'm scared, I'm unsure who I even am or what I beleive. The world keeps on turning and mine is just standing still....
I miss him. I barely got to know him but it's unbearable how much I miss him. He would be 3 months old as of next friday and I was brutally reminded of that by a pamphlet I got in the mail today 'your 3 month old'. It left me sobbing on my bed tearing everything out of the box.
It's been said that God only gives us more than we can handle. Did he screw up this time? Maybe God isn't omnipotent like we want to beleive and he made a mistake. Can I really deal with this? Can Craig? Can we ever become real people again or will we live the rest of our lives just this shell of who we were meant to be?
I try not to be angry. I try to just keep it all together and carry on with life like Alex would have wanted me to. He fought every single day for his life and woulnd't want us to just let ours slip away from us. But I don't know if I can. I don't know if I will ever be able to get through a day without my heart hurting so much.
It's just not fair. Babies aren't suppose to die. He was suppose to bury ME in the ground.
I have trouble beleiving sometimes that a good god would let people hurt this way. The way Alex did and the way I am now. Someone said to me that sometimes God chooses to heal, and sometimes he chooses to comfort those of us left behind. We'll I'm telling ya, I'm not feeling any comfort. I feel like God abandoned us just when we were starting to finally get it. It doesn't make any sense! I sat out on the deck the other night crying in the rain, telling God that if he's so almighty, to get his butt down here and tell me why he took my son, at least I deserve that......... Did I get any answers? no and beleive me i've listened. I've listened so intently for any speck of anything that would provide me some peace and it's not coming.
Yes, my faith is waivering. Just when I had really found it. Because God took my child from me and left me alone, in my own misery to deal with it.
People say stupid things, 'oh he's better off in heaven'.... Well if that's the case, why did God send him here at all? To feel pain? Are there no better ways to teach a soul than to destroy it? Maybe he didnt' destroy Alex's, but he did mine. I've always beleived that God molds us, to fight in his army when the time comes....... how can I fight if I don't have anything left to give? Alex may well be 'better off' in heaven, but he would have had a damn good life here too. He will spend eternity in heaven, life is in the blink of an eye....... why not let him live some of it?
The world is just going on around me and I'm struggling to keep up. Am I depressed? another silly question people ask.... I'm depressed, I'm scared, I'm unsure who I even am or what I beleive. The world keeps on turning and mine is just standing still....
Wednesday, April 19, 2006
Home away from home
So I went to the hospital yesterday. When we pulled into the ronald mcdonald house lot I started to panic and shake and couldn't even park. I started to wonder if this was maybe a REALLY bad idea. I had my friend park my truck for me cause I just coulnd't do it and Tyler's mom let us in.
We went to the hospital and our favorite nurse Susan was Tylers nurse that day. I was soooo happy to get to see her. We chatted with some of the staff and I really did good seeing everyone, I didn't lose it or anything. It was strange because for the last month I've felt like we left Alex there, that was his space but walking back in there it wasn't...... it wasn't his space anymore. I didn't have that stress knot in my stomach or anything and didn't even feel the urge to look into his old room.
We spent some time there at the hospital and I was really upset to learn that Gracie had died, she was our roomate and had TOF/PA as well and was back for her second surgery. Her family made some awesome t-shirts and left some for the kids and craig and I, they say Kardiac Kids on them. really nice.
I later learned that of the 6 heart babies that were there, 4 of them died in that same week, Alex was first. Only 2 are left, Tyler and Luke. My heart breaks for thier families, especially Gracie's parents because they were in our room that day, hearing everything that was going on with Alex's death, her dad comforted Craig that day, and then had to repeat it with thier own daughter days later....... they are such wonderful people too:(
Later on we went back to the rmh and I was really surprised to see a family still there that we had gotten to know. I thought they would have gone home already and it was nice to be able to talk with them again and thier son had become good friends with Shaylin and Jacksen and I was able to get a picture of him for them.
I'm really glad I went. And really glad Craig didn't. Not that I don't want him to go but it was my time to go, I needed to and he wasn't ready. When he's ready he will go.
I think it was very healing to me and really put some closure to things. I now feel Alex all around me where I didn't before because I just always felt like he was THERE. Seeing for my own eyes that he isn't is what I needed to do.
I terribly miss everyone there though. I told people that if I lived closer I'd probably just loiter all the time. It was so nice to get to chat with Susan again, makes me miss our days of just spending the whole day together, she really is a wonderful person and I am grateful for her and so many others for doing what they did for us, and for Alex and so many other families.
We went to the hospital and our favorite nurse Susan was Tylers nurse that day. I was soooo happy to get to see her. We chatted with some of the staff and I really did good seeing everyone, I didn't lose it or anything. It was strange because for the last month I've felt like we left Alex there, that was his space but walking back in there it wasn't...... it wasn't his space anymore. I didn't have that stress knot in my stomach or anything and didn't even feel the urge to look into his old room.
We spent some time there at the hospital and I was really upset to learn that Gracie had died, she was our roomate and had TOF/PA as well and was back for her second surgery. Her family made some awesome t-shirts and left some for the kids and craig and I, they say Kardiac Kids on them. really nice.
I later learned that of the 6 heart babies that were there, 4 of them died in that same week, Alex was first. Only 2 are left, Tyler and Luke. My heart breaks for thier families, especially Gracie's parents because they were in our room that day, hearing everything that was going on with Alex's death, her dad comforted Craig that day, and then had to repeat it with thier own daughter days later....... they are such wonderful people too:(
Later on we went back to the rmh and I was really surprised to see a family still there that we had gotten to know. I thought they would have gone home already and it was nice to be able to talk with them again and thier son had become good friends with Shaylin and Jacksen and I was able to get a picture of him for them.
I'm really glad I went. And really glad Craig didn't. Not that I don't want him to go but it was my time to go, I needed to and he wasn't ready. When he's ready he will go.
I think it was very healing to me and really put some closure to things. I now feel Alex all around me where I didn't before because I just always felt like he was THERE. Seeing for my own eyes that he isn't is what I needed to do.
I terribly miss everyone there though. I told people that if I lived closer I'd probably just loiter all the time. It was so nice to get to chat with Susan again, makes me miss our days of just spending the whole day together, she really is a wonderful person and I am grateful for her and so many others for doing what they did for us, and for Alex and so many other families.
Monday, April 17, 2006
The first Holiday
So Easter was hard, harder than I even thought it would be. I didn't even want to do anything and if I didn't have kids I wouldn't have but it's not fair to deny them the simple childhood pleasures we have to go on living.
We went to moms for dinner. We didn't stay long and I feel bad for that but I just wasn't in any mood to celebrate anything. I wanted to go to the cemetary but I didn't, I just couldn't. I did go today though.
All in all, i'm just really glad easter is over. Mothers day will be the next obstacle to get through.
Tomorrow I'm planning to go the Minneapolis. Just me and a friend. I'm not sure if it will be as theraputic as I hope and the closer time gets the more I'm starting to panic.
We got some of Alex's medical record today, it wasn't exactly what I was hoping to get but it was something. I of course don't understand all of it because it's all in 'Dr Speak' but I understand enough. I think reading that kind of stuff takes me back, for the moment to when he was still alive. All those numbers and notes are relating to him so in a way through that, he's still here. Unfortunately I eventually have to stop reading and he's not here.....
I'm really struggling with being able to do everything. It's very hard to try to grieve, and be a mom to 5 other kids at the same time. There are sometimes too many hours in the day and not enough of me to go around. I hope this gets easier someday.
We went to moms for dinner. We didn't stay long and I feel bad for that but I just wasn't in any mood to celebrate anything. I wanted to go to the cemetary but I didn't, I just couldn't. I did go today though.
All in all, i'm just really glad easter is over. Mothers day will be the next obstacle to get through.
Tomorrow I'm planning to go the Minneapolis. Just me and a friend. I'm not sure if it will be as theraputic as I hope and the closer time gets the more I'm starting to panic.
We got some of Alex's medical record today, it wasn't exactly what I was hoping to get but it was something. I of course don't understand all of it because it's all in 'Dr Speak' but I understand enough. I think reading that kind of stuff takes me back, for the moment to when he was still alive. All those numbers and notes are relating to him so in a way through that, he's still here. Unfortunately I eventually have to stop reading and he's not here.....
I'm really struggling with being able to do everything. It's very hard to try to grieve, and be a mom to 5 other kids at the same time. There are sometimes too many hours in the day and not enough of me to go around. I hope this gets easier someday.
Death certificate
I was doing better today, until I got my mail.
Got an envelope from the funeral home. My first thought was that we must have forgotten to pay something, or maybe it was some sort of receipt so I opened it not even thinking twice.
What I found instead, right there sitting in my face was Alex's death certificate. No warning, just boom there it is.
I was shaken, but somewhat ok until I read
Primary cause of death: Metabolic Acidosis hypotension
Other primary: Suspected Sepsis
Other contributing factors: Post RVOT repair of Tetralogy of Fallot/Pulmonary atresia
Now none of this was such a surprise that it should have taken me off guard. But when I read the sepsis part the 'what if demon' totally took over and now I find myself wondering if in some way I made him sick. Now, really this is silly, he had so many sites that were just begging for bacteria to enter, but still I want to blame myself I guess.
The day has gotten better though. I went to the craft store in hopes of finding a nice project to occupy some of my time. I couldn't find anything I wanted to do and then I had a great lightbulb moment. So, i'm making and recycling old teddy bears, they will have a heart patch and a 'scar' on thier chest. I'm going to also write a little kids book entitled 'Alex the bear has s special heart, just like YOU' that fits in a little pouch on the bears back, and I'm going to give them to children's hospitals for 'heart babies' .
So, if any of you have any old clean stuffed bears laying around the house that your kids no longer play with, or if you'd be willing to watch some garage sales for some this summer, please email me.
Got an envelope from the funeral home. My first thought was that we must have forgotten to pay something, or maybe it was some sort of receipt so I opened it not even thinking twice.
What I found instead, right there sitting in my face was Alex's death certificate. No warning, just boom there it is.
I was shaken, but somewhat ok until I read
Primary cause of death: Metabolic Acidosis hypotension
Other primary: Suspected Sepsis
Other contributing factors: Post RVOT repair of Tetralogy of Fallot/Pulmonary atresia
Now none of this was such a surprise that it should have taken me off guard. But when I read the sepsis part the 'what if demon' totally took over and now I find myself wondering if in some way I made him sick. Now, really this is silly, he had so many sites that were just begging for bacteria to enter, but still I want to blame myself I guess.
The day has gotten better though. I went to the craft store in hopes of finding a nice project to occupy some of my time. I couldn't find anything I wanted to do and then I had a great lightbulb moment. So, i'm making and recycling old teddy bears, they will have a heart patch and a 'scar' on thier chest. I'm going to also write a little kids book entitled 'Alex the bear has s special heart, just like YOU' that fits in a little pouch on the bears back, and I'm going to give them to children's hospitals for 'heart babies' .
So, if any of you have any old clean stuffed bears laying around the house that your kids no longer play with, or if you'd be willing to watch some garage sales for some this summer, please email me.
Saturday, April 15, 2006
A month ago.....
A month ago, at this very moment I was kissing my son goodbye for what I thought was the night. I remember I didn't kiss him directly on his head like usual because Jack had a sniffle a few days before and I didn't want to give anything to Alex so I used the foam sanitizer and then kissed my hand and touched his head. I said 'see you tomorrow angel boy' and left. And that was the last time I saw him alive.
This last month has seemed like an eternity. It's hard to beleive that it's only been a month, it seems like so much longer.
Today I brought him his easter presents. A thomas the train toy that I had promised him when he was in the hospital because I knew Jack wouldn't share with him, and a little bunny that said 'my first easter' on it. Oh how I wish he was celebrating easter with us.
Thank you to whoever put the little baby sized easter eggs out there for him, they are adorable!
This last month has seemed like an eternity. It's hard to beleive that it's only been a month, it seems like so much longer.
Today I brought him his easter presents. A thomas the train toy that I had promised him when he was in the hospital because I knew Jack wouldn't share with him, and a little bunny that said 'my first easter' on it. Oh how I wish he was celebrating easter with us.
Thank you to whoever put the little baby sized easter eggs out there for him, they are adorable!
Friday, April 14, 2006
Should I go or should I stay?
Well I went today after all, I just couldn't not go when it was my moms birthday. Instead of going to Chuck E Cheese though we went to the Como zoo.
As I was driving along I-94 and our exit came up, I had this insane urge to just keep on going and go to the hospital. I mean such a strong urge that I almost missed my exit completely. But I got it together.
So I take the exit and my cell phone starts ringing. I wasn't going to answer it because I am quite a danger to society if I drive and talk at the same time, but I just answered it anyway. Turns out, it was a mom of Alex's old hospital roomate, the docs use to call our boys the 'wonder twins' because they were born within a week of each other, had the exact same diagnosis, and pretty much followed each other's course of treatment, complications and all.
We chatted for a few minutes about how Tyler was doing, how we are doing and all that.
So now, I have this insane urge to visit. I really really REALLY miss it there. I miss the house, the hospital, the staff, hell even sometimes I miss the nasty cafeteria's 'is this really meat?' burgers. It feels like we just left such a HUGE part of our life at that hospital. We were forever changed inside those walls, like a factory where you go in and they completely remake you, and you go out the door headed for the big new world a different person.
I'm worried though. Will going there, seeing Tyler and Luke and all the nurses and stuff completely undue any healing I've managed to accomplish? Or will it help me to finally put it all behind me once and for all?
That is the question.......
As I was driving along I-94 and our exit came up, I had this insane urge to just keep on going and go to the hospital. I mean such a strong urge that I almost missed my exit completely. But I got it together.
So I take the exit and my cell phone starts ringing. I wasn't going to answer it because I am quite a danger to society if I drive and talk at the same time, but I just answered it anyway. Turns out, it was a mom of Alex's old hospital roomate, the docs use to call our boys the 'wonder twins' because they were born within a week of each other, had the exact same diagnosis, and pretty much followed each other's course of treatment, complications and all.
We chatted for a few minutes about how Tyler was doing, how we are doing and all that.
So now, I have this insane urge to visit. I really really REALLY miss it there. I miss the house, the hospital, the staff, hell even sometimes I miss the nasty cafeteria's 'is this really meat?' burgers. It feels like we just left such a HUGE part of our life at that hospital. We were forever changed inside those walls, like a factory where you go in and they completely remake you, and you go out the door headed for the big new world a different person.
I'm worried though. Will going there, seeing Tyler and Luke and all the nurses and stuff completely undue any healing I've managed to accomplish? Or will it help me to finally put it all behind me once and for all?
That is the question.......
Wednesday, April 12, 2006
I don't understand!
For some reason today has been a very hard day. I am finding it very difficult to find my 'happy place'. Easter is coming, not only is it the first 'real' holiday we planned to spend with our sweet baby boy, but it is also our first goal 'home date' in the hospital, then when we realized it probably wouldn't happen, we were rooting for Mothers day. So Easter is going to suck this year because of that and to top it off it falls on the 16th and marks the 1 month anniversary of losing Alex. I just don't want to do anything anymore.
People try to get me out of the house. My mom wants us to go to Minneapolis on Friday, which is her birthday to take the kids to Chuck E Cheese and have a nice day out. I don't want to go, we had planned to take the kids to Chuck E Cheese on our way home from the hospital on the wonderful day when Alex would finally be sent home from the hospital and that didn't happen.
People think i need to get out of my house. My house is my safe place. I dont' have to see babies, pregnant women, any of it in my house. I can cry without being gawked at, and i'm not 'the woman who lost her baby'.
I find myself feeling very bitter today. I'm mad at God. I try to tell myself that God took Alex home and ended his suffering, but then on these hard days I think that's a bunch of bull, God preforms miracles every single day and he didn't. Why didn't Alex deserve a miracle? Why are prisons full of people that do awful things and yet for some reason Alex, an innocent child's life was taken from him before he had a chance to live it. It makes me so angry. Instead he felt pain every day of his life, for nothing. To have it end anyway.
I'm sure eventually I'll find my way back to my happy place for a while. But not today.....
God, Take This Child....
By Nancy Scott
Sweet child whom we never really got to know,
It’s hard for us to let you go.
We waited and we wanted you.
We had so many dreams for you.
We think of smiles we'll never see.
We think of events that will never be.
There will be no first steps and no first teeth.
There is only a void and our own grief.
We planned to take you to places far and near.
We yearned to keep you safe and free from fear.
We hoped to show you much of your new world.
We wanted to teach you as your life unfurled.
It’s hard to understand why you, our baby, died.
We feel so numb right now, many tears we’ve cried.
We have so many questions and no answers seem to come.
We tried so hard to save you; nothing could be done.
God, we stand before you broken-hearted
and ask you to heal these lives that must be parted
from this little one we can no longer hold,
who will always be a part of us, even when we're old.)
God, take this child in your loving arms.
No more can he suffer any harm.
Bless him always and bless us too.
Be with us and help us to make it through.
People try to get me out of the house. My mom wants us to go to Minneapolis on Friday, which is her birthday to take the kids to Chuck E Cheese and have a nice day out. I don't want to go, we had planned to take the kids to Chuck E Cheese on our way home from the hospital on the wonderful day when Alex would finally be sent home from the hospital and that didn't happen.
People think i need to get out of my house. My house is my safe place. I dont' have to see babies, pregnant women, any of it in my house. I can cry without being gawked at, and i'm not 'the woman who lost her baby'.
I find myself feeling very bitter today. I'm mad at God. I try to tell myself that God took Alex home and ended his suffering, but then on these hard days I think that's a bunch of bull, God preforms miracles every single day and he didn't. Why didn't Alex deserve a miracle? Why are prisons full of people that do awful things and yet for some reason Alex, an innocent child's life was taken from him before he had a chance to live it. It makes me so angry. Instead he felt pain every day of his life, for nothing. To have it end anyway.
I'm sure eventually I'll find my way back to my happy place for a while. But not today.....
God, Take This Child....
By Nancy Scott
Sweet child whom we never really got to know,
It’s hard for us to let you go.
We waited and we wanted you.
We had so many dreams for you.
We think of smiles we'll never see.
We think of events that will never be.
There will be no first steps and no first teeth.
There is only a void and our own grief.
We planned to take you to places far and near.
We yearned to keep you safe and free from fear.
We hoped to show you much of your new world.
We wanted to teach you as your life unfurled.
It’s hard to understand why you, our baby, died.
We feel so numb right now, many tears we’ve cried.
We have so many questions and no answers seem to come.
We tried so hard to save you; nothing could be done.
God, we stand before you broken-hearted
and ask you to heal these lives that must be parted
from this little one we can no longer hold,
who will always be a part of us, even when we're old.)
God, take this child in your loving arms.
No more can he suffer any harm.
Bless him always and bless us too.
Be with us and help us to make it through.
Saturday, April 8, 2006
He's gone. He's really gone?!
I know, i haven't updated in a long time. Just trying to be normal. I don't feel like I have anything positive to say and I don't like to be depressing everyone.
They say this gets easier. I'm not sure who 'they' are, but that it gets easier doesn't help me NOW. I'm dealing with today, today.
I'm frustrated because people don't know how to react to me, and I don't know how to react back. I hate it when people try to avoid the subject because I love to talk about my son and quite honestly, not much else at this point in my life is worth talking about. Don't avoid me because you dont' know what to say. Ask me about him, about his life, even about his death..... but dont' act like he was never here.
I'm still trying to wrap my head around the fact that this is it, Alex is never ever coming back. His little body will be in the ground, in that cemetary forever. I will never again hold him, see him, none of it. How can something so wonderful just be gone just like that? In the blink of an eye it seems?
I'm really trying to be normal. Trying to appreciate what I have. I find myself short tempered with the kids and I hate that. It's not them i'm mad at, i'm not mad at anybody. They are hurting and dealing too and I'm not making it any easier for them and that sucks. This is a huge turning point in thier lives and my response to them can make it or break it, how's that for pressure?
It seems Jack must be reminded daily that Alex isn't coming back. Everytime he sees anything relating to a baby he will say 'that's for baby Alex, baby Alex in the hostible' and I'll say 'no Jack, baby Alex isn't in the hospital, he's in heaven, up above the clouds with Jesus' and he'll say 'baby alex get better and open his eyes' and I have to say 'no jack, baby Alex can't get better, he's gone forever and ever' Every day we have this conversation. I don't want him to forget Alex, but it just hurts me to have to say those words over and over again. Almost like I'm not only telling him, but myself as well. It's really emotionally draining.
I know I should go to counseling, we all should. But I have yet to make the appointment because I'm afraid. I'm afraid because I don't care how many years of schooling you've had, you DON'T understand and I'm afraid that I woudl be completely unreceptive to them because I would always be thinking that. Always be bitter about it.
I got on the scale for the first time the other day and realized that I have lost exactly 23 pounds, I gained exactly 23 lbs during my pregnancy. I had this though that it's like it never happened! Yet it did, and I don't have anything but pictures and memories to prove it.
Here's a poem I like
My parents, they tell a lot of lies
they never did before.
From now until they die,
they'll tell a whole lot more.
Ask my parents how they are
and because they can't explain,
They will tell a little lie
because they can't describe the pain.
Ask my parents how are they,
They'll say, we're alright.
If that's the truth, then I say,
why do they cry each night?
Ask my parents how they be,
they seem to cope so well.
They didn't have a choice you see
nor the strength to yell.
Ask my parents how they are,
We're fine, we're well or we're coping...
For God's sake guys, just tell the truth
just say your heart is broken.
They'll love me all thier life,
I loved them all of mine.
But if you ask them how they are
they'll lie and say they're fine.
I am here in Heaven.
I cannot hug from here.
If they lie to you don't listen,
Hug them and hold them near.
On the day we meet again,
we'll smile and I'll be bold.
I'll say, You're lucky to get in here guys,
with all the lies you told!
They say this gets easier. I'm not sure who 'they' are, but that it gets easier doesn't help me NOW. I'm dealing with today, today.
I'm frustrated because people don't know how to react to me, and I don't know how to react back. I hate it when people try to avoid the subject because I love to talk about my son and quite honestly, not much else at this point in my life is worth talking about. Don't avoid me because you dont' know what to say. Ask me about him, about his life, even about his death..... but dont' act like he was never here.
I'm still trying to wrap my head around the fact that this is it, Alex is never ever coming back. His little body will be in the ground, in that cemetary forever. I will never again hold him, see him, none of it. How can something so wonderful just be gone just like that? In the blink of an eye it seems?
I'm really trying to be normal. Trying to appreciate what I have. I find myself short tempered with the kids and I hate that. It's not them i'm mad at, i'm not mad at anybody. They are hurting and dealing too and I'm not making it any easier for them and that sucks. This is a huge turning point in thier lives and my response to them can make it or break it, how's that for pressure?
It seems Jack must be reminded daily that Alex isn't coming back. Everytime he sees anything relating to a baby he will say 'that's for baby Alex, baby Alex in the hostible' and I'll say 'no Jack, baby Alex isn't in the hospital, he's in heaven, up above the clouds with Jesus' and he'll say 'baby alex get better and open his eyes' and I have to say 'no jack, baby Alex can't get better, he's gone forever and ever' Every day we have this conversation. I don't want him to forget Alex, but it just hurts me to have to say those words over and over again. Almost like I'm not only telling him, but myself as well. It's really emotionally draining.
I know I should go to counseling, we all should. But I have yet to make the appointment because I'm afraid. I'm afraid because I don't care how many years of schooling you've had, you DON'T understand and I'm afraid that I woudl be completely unreceptive to them because I would always be thinking that. Always be bitter about it.
I got on the scale for the first time the other day and realized that I have lost exactly 23 pounds, I gained exactly 23 lbs during my pregnancy. I had this though that it's like it never happened! Yet it did, and I don't have anything but pictures and memories to prove it.
Here's a poem I like
My parents, they tell a lot of lies
they never did before.
From now until they die,
they'll tell a whole lot more.
Ask my parents how they are
and because they can't explain,
They will tell a little lie
because they can't describe the pain.
Ask my parents how are they,
They'll say, we're alright.
If that's the truth, then I say,
why do they cry each night?
Ask my parents how they be,
they seem to cope so well.
They didn't have a choice you see
nor the strength to yell.
Ask my parents how they are,
We're fine, we're well or we're coping...
For God's sake guys, just tell the truth
just say your heart is broken.
They'll love me all thier life,
I loved them all of mine.
But if you ask them how they are
they'll lie and say they're fine.
I am here in Heaven.
I cannot hug from here.
If they lie to you don't listen,
Hug them and hold them near.
On the day we meet again,
we'll smile and I'll be bold.
I'll say, You're lucky to get in here guys,
with all the lies you told!
Friday, April 7, 2006
Slow and steady
It's been a while hasn't it. I really feel again like I am starting to normalize. For a while I cried all day long, then it was a few times every day, now it's more like a few times a week. I feel guilty for that but I remind myself that Alex really woudln't want us to be sad, but to celebrate his life and celebrate his eternal life. some days it's easier to remember than than others.
We are trying for another baby an that gives me some of the hope back that I felt I had lost. I don't expect it to happen right away and I'm sure that we will have a hard time if months pass without it happening. But it really is all in God's timing. He was patient with us when he so much needed Alex back, we will be patient with him.
I find myself meeting so many people I otherwise wouldn't have. Parents who have lost children, all with thier own special wonderful and sad story to tell. It's like this secret club that no one wants to be in, yet we are and we rely on each other to get through.
Craig and I are planning another trip to Minneapolis, not this coming week but the following. We want to deliver some teddy bears and there's a woman I met on a heart babies board who's son is having another surgery this coming week so we will get to meet him and his mommy.
I use to really long to be there, at the hospital, the RMH. It was like we left so much behind. Now that is starting to fade. I miss everyone, but I don't have this need to be there. In fact I hope that for the rest of my life I never need to be there again.
We are trying for another baby an that gives me some of the hope back that I felt I had lost. I don't expect it to happen right away and I'm sure that we will have a hard time if months pass without it happening. But it really is all in God's timing. He was patient with us when he so much needed Alex back, we will be patient with him.
I find myself meeting so many people I otherwise wouldn't have. Parents who have lost children, all with thier own special wonderful and sad story to tell. It's like this secret club that no one wants to be in, yet we are and we rely on each other to get through.
Craig and I are planning another trip to Minneapolis, not this coming week but the following. We want to deliver some teddy bears and there's a woman I met on a heart babies board who's son is having another surgery this coming week so we will get to meet him and his mommy.
I use to really long to be there, at the hospital, the RMH. It was like we left so much behind. Now that is starting to fade. I miss everyone, but I don't have this need to be there. In fact I hope that for the rest of my life I never need to be there again.
Saturday, April 1, 2006
Sharing the gifts we are given
If you are visiting Alex's site because you received a Random act of kindness or a giving box, please sign the guestbook! We like to see how far Alex's love is reaching. While your here, take the time to read Alex's story, the journal, and browse his pictures.
Some people are born with special hearts, the rest of us have to work at it;)
Don't know what I'm talking about?! Read on!
Facts about congenital heart defects:
1. Congenital heart defects are the #1 birth defect in the U.S
2. It is estimated by the American Heart Association that nearly 1.2 million Americans are living today with a congenital heart defect, some of them don't know it until it is to late.
3. An estimated, on average, 1 in every 100 babies are born with a congenital heart defect (In comparison to Down Syndrome, 1 in every 900)
4. In the U.S nearly twice as many children die each year from congenital heart defects than all forms of childhood cancers combined, yet, funding for pediatric cancer research is 5 times high than for congenital heart defects.
5. Congenital heart defects are the #1 cause of birth defect related infant deaths.
6. Of the children sticken with Congenital heart defects, 1 in 10 have fatal birth defects.
7. Currently, there is no known cause, cure or prevention of congenital heart defects.
8. On average, 40,000 babies are born each year with a congenital heart defect.
9. Currently, there are over 35 known types of CHD.
10. You CAN help to save the Heart of a child! Visit http://www.kidswithheart.org/
Also, when youre done here, grab some tissues and take a look at Alex's montage at http://www.onetruemedia.com/shared?p=42c59bc2e1dbedd5a18bd
A request in honor of Alex...
At the bottom of this post a little message Please copy and paste it into a wordpad or word document, duplicate it to use up the whole page, print off a few copies, cut the messages apart and participate in our effort to make the world a little bit better in honor of Alexander. All you have to do is what most of us should be doing every day, little random acts of kindness. It might be paying for the person's food behind you in the drive through, helping a little old lady carry her groceries, When your at the gas station for a coffee, buy a lottery ticket and hand it to someone in the store, buy a small toy for a child in the store, bake some cookies and bring them to the local city hall, goodwill, or police station....just the things that we all should do but rarely take the time or effort to.
Everytime you do one of these random acts of kindness, please give the person one of these messages. They have Alex's website on them so at the same time as we help others, we can raise awareness of congenital heart disease as well!
Please also forward this to your friends!
Thank you!
Kathleen and Craig and the kids
____________________________________________________
This random act of kindness was done in
memory of Alexander Evertsen who passed
away March 16,2006 at the age of 6.5weeks
from Congenital heart disease. Pass this on and
keep the kindness going!
http://www.caringbridge.org/visit/alexanderevertsen
Some people are born with special hearts, the rest of us have to work at it;)
Don't know what I'm talking about?! Read on!
Facts about congenital heart defects:
1. Congenital heart defects are the #1 birth defect in the U.S
2. It is estimated by the American Heart Association that nearly 1.2 million Americans are living today with a congenital heart defect, some of them don't know it until it is to late.
3. An estimated, on average, 1 in every 100 babies are born with a congenital heart defect (In comparison to Down Syndrome, 1 in every 900)
4. In the U.S nearly twice as many children die each year from congenital heart defects than all forms of childhood cancers combined, yet, funding for pediatric cancer research is 5 times high than for congenital heart defects.
5. Congenital heart defects are the #1 cause of birth defect related infant deaths.
6. Of the children sticken with Congenital heart defects, 1 in 10 have fatal birth defects.
7. Currently, there is no known cause, cure or prevention of congenital heart defects.
8. On average, 40,000 babies are born each year with a congenital heart defect.
9. Currently, there are over 35 known types of CHD.
10. You CAN help to save the Heart of a child! Visit http://www.kidswithheart.org/
Also, when youre done here, grab some tissues and take a look at Alex's montage at http://www.onetruemedia.com/shared?p=42c59bc2e1dbedd5a18bd
A request in honor of Alex...
At the bottom of this post a little message Please copy and paste it into a wordpad or word document, duplicate it to use up the whole page, print off a few copies, cut the messages apart and participate in our effort to make the world a little bit better in honor of Alexander. All you have to do is what most of us should be doing every day, little random acts of kindness. It might be paying for the person's food behind you in the drive through, helping a little old lady carry her groceries, When your at the gas station for a coffee, buy a lottery ticket and hand it to someone in the store, buy a small toy for a child in the store, bake some cookies and bring them to the local city hall, goodwill, or police station....just the things that we all should do but rarely take the time or effort to.
Everytime you do one of these random acts of kindness, please give the person one of these messages. They have Alex's website on them so at the same time as we help others, we can raise awareness of congenital heart disease as well!
Please also forward this to your friends!
Thank you!
Kathleen and Craig and the kids
____________________________________________________
This random act of kindness was done in
memory of Alexander Evertsen who passed
away March 16,2006 at the age of 6.5weeks
from Congenital heart disease. Pass this on and
keep the kindness going!
http://www.caringbridge.org/visit/alexanderevertsen
Thursday, March 30, 2006
What is normal?
What is normal? We are really trying to figure out what 'normal' is for our family now. It seems like the past year is just such a blur, trying to conceive Alex, the pregnancy was so boring and uneventful (haha, little stinker) and the roller coaster ride that has been 2006.
I feel like we are adjusting well. I feel like we have really grabbed ahold of the lessons we've been taught and are starting to implement them into our lives and you know, life is really a whole lot less stressfull when you stop trying to direct it and just LIVE it. Things that use to seem like such issues are now just so trivial although Craig still is in his 'must worry about the little insignificant things so I don't have to consume myself with the big ones' mode of thought, but he'll come around.
Some days are good. Some days not so much. Sometimes we'll have a day that seems good and then something out of the blue will smack you upside the head and send you spinning for an hour or two until you work through it, shed your tears and find that place in your soul where it's ok again. I don't like being knocked out of my 'happy place' I must say. But I know that these moments are needed, they are part of the healing process and if I don't have them now, they will come back to haunt me later.
People have started asking THE question. You know the one, the one you are thinking right now....
Are we going to try again? Then answer to that is that it is not for us to say whether or not God has more children planned for us. I figure if I can leave my precious sons life in Gods hands, I can leave a lot of other things there too. So, who's to say what the lord has in store? We aren't rich people but the old 'Ask and ye shall receive' hasn't failed us yet and I don't think God intends to start. So many people dwell on what they can't provide and tend to forget that children aren't expensive, lifestyles and keeping up with the Jones' is what will get you.
Are we afraid of repeating the process? Terrified. But that's not our call to make. We have faith in God's almighty plan and he alone knows what is best for us in our lives.
I've been told by a couple of different people that I should write a book about the lessons that Alex has taught. Someday I might. I plan to keep updating this site and getting it all out as it comes and then someday I'll see what I'm called to do with it. I know Alex's life has and will continue to impact many people, I just need to find the direction that I am suppose to go with it.
Yesterday Craig, Jack, and I stopped at the cemetary on our way back from grocery shopping. As we were leaving I said 'bye bubba' Craig said 'bye buddy' and so Jack says 'bye bubbie' it was rather cute. Jack seems to have a better handle on it all now. He told us that baby Lex is sleeping in heaven with Jesus. We've been talking a lot about heaven and God and things and I really think he's beginning to understand.
The other kids seem to be doing remarkably well. Shaylin I've noticed has regressed a bit. She's now afraid of the dark and gets frustrated very easily, she's at that age where she is just beginning to realize that she is an independant person from us and Alex's death I think has made her realize her own mortality, that it's not just old people that go to heaven, sometimes children do to. What a hard lesson to learn at her age.
I feel like we are adjusting well. I feel like we have really grabbed ahold of the lessons we've been taught and are starting to implement them into our lives and you know, life is really a whole lot less stressfull when you stop trying to direct it and just LIVE it. Things that use to seem like such issues are now just so trivial although Craig still is in his 'must worry about the little insignificant things so I don't have to consume myself with the big ones' mode of thought, but he'll come around.
Some days are good. Some days not so much. Sometimes we'll have a day that seems good and then something out of the blue will smack you upside the head and send you spinning for an hour or two until you work through it, shed your tears and find that place in your soul where it's ok again. I don't like being knocked out of my 'happy place' I must say. But I know that these moments are needed, they are part of the healing process and if I don't have them now, they will come back to haunt me later.
People have started asking THE question. You know the one, the one you are thinking right now....
Are we going to try again? Then answer to that is that it is not for us to say whether or not God has more children planned for us. I figure if I can leave my precious sons life in Gods hands, I can leave a lot of other things there too. So, who's to say what the lord has in store? We aren't rich people but the old 'Ask and ye shall receive' hasn't failed us yet and I don't think God intends to start. So many people dwell on what they can't provide and tend to forget that children aren't expensive, lifestyles and keeping up with the Jones' is what will get you.
Are we afraid of repeating the process? Terrified. But that's not our call to make. We have faith in God's almighty plan and he alone knows what is best for us in our lives.
I've been told by a couple of different people that I should write a book about the lessons that Alex has taught. Someday I might. I plan to keep updating this site and getting it all out as it comes and then someday I'll see what I'm called to do with it. I know Alex's life has and will continue to impact many people, I just need to find the direction that I am suppose to go with it.
Yesterday Craig, Jack, and I stopped at the cemetary on our way back from grocery shopping. As we were leaving I said 'bye bubba' Craig said 'bye buddy' and so Jack says 'bye bubbie' it was rather cute. Jack seems to have a better handle on it all now. He told us that baby Lex is sleeping in heaven with Jesus. We've been talking a lot about heaven and God and things and I really think he's beginning to understand.
The other kids seem to be doing remarkably well. Shaylin I've noticed has regressed a bit. She's now afraid of the dark and gets frustrated very easily, she's at that age where she is just beginning to realize that she is an independant person from us and Alex's death I think has made her realize her own mortality, that it's not just old people that go to heaven, sometimes children do to. What a hard lesson to learn at her age.
Monday, March 27, 2006
God is in control, like it or not
Some days are harder than others. I've found that Alex's life has brought me so much closer to God than I was. I remember on that Monday walkingn to the hospital just feeling terrible about things after Alex's rocky weekend when I just stopped in the middle of the sidewalk in front of the hospital, threw my hands in the air, looked up to the heavens and said out loud 'I give up God, I quit trying to be in control! Let's do this your way' 3 days later he called Alex home. Now I could get angry about this, that I gave God control and he took my child from me..... but instead I feel like rather than taking my child from me, he ended Alex's suffering and took him home. My fight for control with God was only harming my son.
We are going to try to get a copy of Alex's hospital record. I'm sure it will raise a lot of questions but I really feel the need to know the answers to some of the questions I was too afraid to ask while things were happening. I also feel like we need to know as much as we can about Alex's condition, for our sake, for the sake of people we might be able to help in the future, and for the sake of any children we may have yet unborn.
I've had a lot of people ask me what was the main issue with Alex, the issue that he could not overcome. Although we declined an autopsy, we are quite certain it was diastolic heart failure caused by his hypertrophied ventricle (small and stiff). Which caused something called Diastolic heart failure.. Here is a bit of info on it
'Diastolic heart failure occurs when the heart is unable to receive blood normally. The cardiac cycle is divided into two parts - systole and diastole. During systole, the ventricles (the heart's major pumping chambers) contract, thus ejecting blood out of the heart and into the arteries.
Sometimes, however, due to various medical conditions, the ventricles become relatively 'stiff.' Stiff ventricles cannot fully relax during diastole, and as a result the ventricles may not fill completely, and blood can 'dam up' in the body's organs (mainly the lungs). An abnormal 'stiffening' of the ventricles, and the resulting abnormal ventricular filling during diastole, is referred to as diastolic dysfunction. When diastolic dysfunction is sufficient to produce pulmonary congestion (that is, a damming up of blood into the lungs), diastolic heart failure is said to be present. '
Also, people have asked what Alex's heart problem was. I may have explained it early on in his life, as I understood it but now that I understand more, I can give you a better explanation.
Tetralogy of Fallot, pulmonary atresia, absent pulmonic valve
Alex had the most rare and most severe form of TOF. The traditional definition of it is the 4 anomolies:
Pulmonary stenosis- a narrowing of the pulmonary artery and/or valve
VSD- Ventricular Septal Defect. A hole between the 2 lower chambers of the heart, the ventricles which allows oxygen rich blood and oxygen poor blood to mix together before being pumped to the body, giving the telltale 'blue baby' symptom.
overriding Aorta- The Aorta, the artery that pumps blood to the body, is positioned centrally over the VSD
Right ventricular hypertrophy- Stiffening of the right ventricle caused by thickening of the muscle wall
Children with TOF have a boot shaped heart.
Alex's diagnosis was a little varied from this. He didn't have his pulmonary artery, so of course he didn't have the valve either. The PDA or Patent Ductus Arteriosis that fetuses use to circulate thier blood until they are born and thier lungs begin to work is the main, sometimes only way to get blood where it needs to go. This PDA closes normally within the first week or two of life, as the lungs do thier job which is why we noticed Alex having trouble 14 hours after birth, his PDA began to close. Some children have 'collaterals' which is extra arteries the heart grows when it detects an error in design. From what I know, Alex didn't have any, or only a few of these that didn't help him much.
There are some chromosomal abnormalities that can be associated with TOF, and are more frequently associated with severe forms of it. Alex did not have those chromosomal abnormalities so chances are, his heart problem was a fluke and won't repeat itself in siblings or future generations. However, since science hasn't yet uncovered a specific gene for heart defects, it is possible there is some genetic tendancy so our risk of having another child with a heart problem are 2-3% as opposed to 1% which is the risk of the general population.
We are going to try to get a copy of Alex's hospital record. I'm sure it will raise a lot of questions but I really feel the need to know the answers to some of the questions I was too afraid to ask while things were happening. I also feel like we need to know as much as we can about Alex's condition, for our sake, for the sake of people we might be able to help in the future, and for the sake of any children we may have yet unborn.
I've had a lot of people ask me what was the main issue with Alex, the issue that he could not overcome. Although we declined an autopsy, we are quite certain it was diastolic heart failure caused by his hypertrophied ventricle (small and stiff). Which caused something called Diastolic heart failure.. Here is a bit of info on it
'Diastolic heart failure occurs when the heart is unable to receive blood normally. The cardiac cycle is divided into two parts - systole and diastole. During systole, the ventricles (the heart's major pumping chambers) contract, thus ejecting blood out of the heart and into the arteries.
Sometimes, however, due to various medical conditions, the ventricles become relatively 'stiff.' Stiff ventricles cannot fully relax during diastole, and as a result the ventricles may not fill completely, and blood can 'dam up' in the body's organs (mainly the lungs). An abnormal 'stiffening' of the ventricles, and the resulting abnormal ventricular filling during diastole, is referred to as diastolic dysfunction. When diastolic dysfunction is sufficient to produce pulmonary congestion (that is, a damming up of blood into the lungs), diastolic heart failure is said to be present. '
Also, people have asked what Alex's heart problem was. I may have explained it early on in his life, as I understood it but now that I understand more, I can give you a better explanation.
Tetralogy of Fallot, pulmonary atresia, absent pulmonic valve
Alex had the most rare and most severe form of TOF. The traditional definition of it is the 4 anomolies:
Pulmonary stenosis- a narrowing of the pulmonary artery and/or valve
VSD- Ventricular Septal Defect. A hole between the 2 lower chambers of the heart, the ventricles which allows oxygen rich blood and oxygen poor blood to mix together before being pumped to the body, giving the telltale 'blue baby' symptom.
overriding Aorta- The Aorta, the artery that pumps blood to the body, is positioned centrally over the VSD
Right ventricular hypertrophy- Stiffening of the right ventricle caused by thickening of the muscle wall
Children with TOF have a boot shaped heart.
Alex's diagnosis was a little varied from this. He didn't have his pulmonary artery, so of course he didn't have the valve either. The PDA or Patent Ductus Arteriosis that fetuses use to circulate thier blood until they are born and thier lungs begin to work is the main, sometimes only way to get blood where it needs to go. This PDA closes normally within the first week or two of life, as the lungs do thier job which is why we noticed Alex having trouble 14 hours after birth, his PDA began to close. Some children have 'collaterals' which is extra arteries the heart grows when it detects an error in design. From what I know, Alex didn't have any, or only a few of these that didn't help him much.
There are some chromosomal abnormalities that can be associated with TOF, and are more frequently associated with severe forms of it. Alex did not have those chromosomal abnormalities so chances are, his heart problem was a fluke and won't repeat itself in siblings or future generations. However, since science hasn't yet uncovered a specific gene for heart defects, it is possible there is some genetic tendancy so our risk of having another child with a heart problem are 2-3% as opposed to 1% which is the risk of the general population.
Saturday, March 25, 2006
Why?
Yesterday was a bad day. They 'why' demon crept up on me and stuck around most of the day. I know I can't give in to they 'why' because there isn't an answer to that question that I can know until the day I see God and Alex in heaven and then i'm not sure it will matter.
I got a wonderful card today from the social worker we worked with at the hospital, it really warms my heart when people say that they could see our love for Alex and I hope that he felt that too. Apparently Alex was her first PICU kid and she said that her experience with him taught her a lot and will always influence the way she deals with families in her work, and the way she is with her own family. It's amazing how many people such a little guy influenced.
I'm still struggling with my feelings, as is probably to be expected. Most of the time I am just so grateful, I'm sad that he died but I'm grateful that he lived. Some of you know that Alex was the result of a successful vasectomy reversal, he was a miracle from the start. Sometimes that makes the WHY demon come out thinking about it, because he was so loved, planned for, and wanted.
I think one of the big things I've learned is that the people in our lives aren't ours to keep, they are on loan for a while, some of them many years and some only minutes, days, or weeks. Appreciate them and let them know how much you do. And take all of the lessons they are here to teach and learn them. And when they are gone, be grateful that you had the opportunity to know them. After all, it's better to have loved and lost than never to have loved at all.
My Dream
If I could have some fairy dust
To make my dreams come true
I'd take it with me in my sleep
So I could dream of you
I'd dream I were an angel
If only for one day
So I could be in Heaven
Just to spend the day with you
I'd tell you how I loved you so
And miss you oh so much
And how just for a little while
You were mine but not to keep
I'd hold you oh so very close
But then I'd have to go
You see my little Angel
You were my gift but not to kep
I have to say night night now
It's time for me to go
But this feeling in my heart for you
will never go to sleep
I got a wonderful card today from the social worker we worked with at the hospital, it really warms my heart when people say that they could see our love for Alex and I hope that he felt that too. Apparently Alex was her first PICU kid and she said that her experience with him taught her a lot and will always influence the way she deals with families in her work, and the way she is with her own family. It's amazing how many people such a little guy influenced.
I'm still struggling with my feelings, as is probably to be expected. Most of the time I am just so grateful, I'm sad that he died but I'm grateful that he lived. Some of you know that Alex was the result of a successful vasectomy reversal, he was a miracle from the start. Sometimes that makes the WHY demon come out thinking about it, because he was so loved, planned for, and wanted.
I think one of the big things I've learned is that the people in our lives aren't ours to keep, they are on loan for a while, some of them many years and some only minutes, days, or weeks. Appreciate them and let them know how much you do. And take all of the lessons they are here to teach and learn them. And when they are gone, be grateful that you had the opportunity to know them. After all, it's better to have loved and lost than never to have loved at all.
My Dream
If I could have some fairy dust
To make my dreams come true
I'd take it with me in my sleep
So I could dream of you
I'd dream I were an angel
If only for one day
So I could be in Heaven
Just to spend the day with you
I'd tell you how I loved you so
And miss you oh so much
And how just for a little while
You were mine but not to keep
I'd hold you oh so very close
But then I'd have to go
You see my little Angel
You were my gift but not to kep
I have to say night night now
It's time for me to go
But this feeling in my heart for you
will never go to sleep
Friday, March 24, 2006
Everything is blurry
It's been 8 days. I can only be thankful for the fog I've been in because it has made time pass quickly. I'm still throwing myself into everything, I've researched every medication he was on, every symptom he had, the thank you cards are finished and either mailed or sitting on my desk waiting to be mailed.
We packed up the baby things yesterday. It wasn't as hard as I imagined. The fact that he never came home to use any of those things has spared me some because I can convince myself that since he didn't use them, they weren't his. The house appears so empty now though, aside from the plethora of flowers and plants in every room to constantly remind us that he isn't here.
We visited the cemetary yesterday. Oh how I can't wait until the grass has grown and his stone is laid. To go out there and see the dirt and the peice of wood laying over where he lays disgusts me, like he was thrown in the ground and covered. We brought his big tigger that was won for him at bingo by a little girl at the Ronald Mcdonald house, Autumn. It melts my heart how she won it and gave it to Alex.
I still wake up every morning and think of my walk to the hospital. I retrace the route in my mind, feel the snow under my feet and the wind from the river on my face. I see the university students rushing to class and the huge buildings of the hospital and it's ajacent medical buildings. I remember the smell of the place, that distinctive hospital smell and hear the sounds of the elevators. I remember walking into the PICU and seeing all the familiar faces, walking into his room and saying my usual 'good morning bubba, I love you' and rubbing his fuzzy head. I still feel the fuzz of his hair.
Then my mind wanders back to today and I realize that all I have left is pictures, pictures in my mind and on the wall. He will never be forgotten but I feel those precious memories slipping away every day and it makes me sad.
At the bible book store I found a card with his name on it, it says:
Alexander
'helper of mankind'
Have I not commanded you?
Be strong and of good courage:
do not be afraid, nor dismayed, for the Lord
your God is with you wherever you go.
Joshua 1:9
We packed up the baby things yesterday. It wasn't as hard as I imagined. The fact that he never came home to use any of those things has spared me some because I can convince myself that since he didn't use them, they weren't his. The house appears so empty now though, aside from the plethora of flowers and plants in every room to constantly remind us that he isn't here.
We visited the cemetary yesterday. Oh how I can't wait until the grass has grown and his stone is laid. To go out there and see the dirt and the peice of wood laying over where he lays disgusts me, like he was thrown in the ground and covered. We brought his big tigger that was won for him at bingo by a little girl at the Ronald Mcdonald house, Autumn. It melts my heart how she won it and gave it to Alex.
I still wake up every morning and think of my walk to the hospital. I retrace the route in my mind, feel the snow under my feet and the wind from the river on my face. I see the university students rushing to class and the huge buildings of the hospital and it's ajacent medical buildings. I remember the smell of the place, that distinctive hospital smell and hear the sounds of the elevators. I remember walking into the PICU and seeing all the familiar faces, walking into his room and saying my usual 'good morning bubba, I love you' and rubbing his fuzzy head. I still feel the fuzz of his hair.
Then my mind wanders back to today and I realize that all I have left is pictures, pictures in my mind and on the wall. He will never be forgotten but I feel those precious memories slipping away every day and it makes me sad.
At the bible book store I found a card with his name on it, it says:
Alexander
'helper of mankind'
Have I not commanded you?
Be strong and of good courage:
do not be afraid, nor dismayed, for the Lord
your God is with you wherever you go.
Joshua 1:9
Tuesday, March 21, 2006
Guestbook entries for 3/21/06
The following are entries made to Alex's Caringbridge guestbook on March 20, 2006
Kat:
Your strength is amazing! Thank you for sharing your story. My 14 month old son also has TOF with pulmonary atresia (missing his pulmonary artery all together as well) and a large VSD. I know we have a LONG road ahead, but I'm grateful for each and every day that we have with him. I will carry Alexander's story with me- what a brave little man!
Buffy Storm
Kat: I want to express my deepest sympathy for your loss. The Lord works in mysterious ways, as the poem you have written suggests. My wife, Buffy, showed me your website and I find myself tearing at work. You don't find many people with the same exact disease as your own son. If you ever want to talk about it, please feel free to email us. Again, I'm so sorry for your loss and wish you the best in dealing with everything and trying to move forward.
Bill Storm
Kat,
I can not begin to imagine your pain. Please know that you and your family are in my thoughts and prayers.
Tabetha Hodge
Kat:
Your strength is amazing! Thank you for sharing your story. My 14 month old son also has TOF with pulmonary atresia (missing his pulmonary artery all together as well) and a large VSD. I know we have a LONG road ahead, but I'm grateful for each and every day that we have with him. I will carry Alexander's story with me- what a brave little man!
Buffy Storm
Kat: I want to express my deepest sympathy for your loss. The Lord works in mysterious ways, as the poem you have written suggests. My wife, Buffy, showed me your website and I find myself tearing at work. You don't find many people with the same exact disease as your own son. If you ever want to talk about it, please feel free to email us. Again, I'm so sorry for your loss and wish you the best in dealing with everything and trying to move forward.
Bill Storm
Kat,
I can not begin to imagine your pain. Please know that you and your family are in my thoughts and prayers.
Tabetha Hodge
Monday, March 20, 2006
Guestbook entries for 3/20/06
The following are entries made to Alex's Caringbridge guestbook on March 20, 2006
Kat & Family,
I am so sorry to hear about your loss. My prayers are with you and family. Alex is such a darling and I know that you have a special guardian angel watching over now.He had been a great fighter and fought his battle so as to spend some more time with you. I know that nothing that I can say will make you feel better but I will always pray to God to bless Alex and to give you and your family strength to cope. Hugs ((()))
Aryan's mommy S
Kathleen,
I'm truly sorry to hear about you loss. You are in my prayers.Please remember that your not alone continue you remain strong.
P.S. Alexander is beautiful
Roxanne
I came across your story at Baby Center as well. Very touched by what you said ... "I am grateful for the time we spent. God was so patient with us, waiting until we had learned some valuable lessons before he took Alex home. Alex was so patient with us, hanging on until we were as ready as we ever could have been to deal with this pain. I know 2 months ago we were not strong enough to live through this, Alex made us strong enough." ... you said it all right there. You have a beautiful son, a beautiful angel! Thanks for letting me read your story and the best wishes for you and your family!
Michelle Torgerson
I'm so sorry to hear about the loss of Alexander. I can only imagine the pain you are going through. He's a beautiful angel.
Maria Bennett
My heart goes out to you and your family! I am thinking of you the this time of sorrow! Alexander was a beautiful little guy, and I thank you for sharing his story with us!
Janelle Duplessis
Kat, There are no words to say how I feel in my heart. When I saw the pictures of your son my heart skipped a beat. He is gorgeous. Reading your story brings tears to my eyes as just 2 1/2 years ago, I too lost my baby. There are no words that anyone can tell you to make the pain go away. You will get to the point where "i'm sorry" starts to sound like pity instead of comfort. Then, the why's begin.. and what did I do to deserve this pain... While I was reading, I didn't cry until it came to what your pastor said, and he is right. The pain that you feel now is nothing compared to what is yet to come. I will be praying for you so that God may grant you all the comfort that you need. In a world where people take their children for granted, we will have to bury ours. For that I am sorry. For the pain that you feel when you see your son in the casket, Im sorry. But he is in a better place and without pain. So God knew you could take the pain, so he didnt have to. For that, God made you his mother... I will pray that My children in heaven watch over yours until you can get there to see how he is for yourself...
God Bless you and yours...
Samantha P
I am so sorry to hear about your little guy. It definetly brought back memories because just 4 months ago I lost my little girl to heart defects. You will find comfort with the little things...I'm so sorry
Jade Johnson
Your little Angel is SO gorgeous. He is a little tow-head. God Bless you and your family...you are in my prayers....
Tracy
Kat I wish I was close enough to hug you. I just want you to know if you need anything that a long distance friend can do let me know.
Shannon Schutz
Kat & Family,
I am so sorry to hear about your loss. My prayers are with you and family. Alex is such a darling and I know that you have a special guardian angel watching over now.He had been a great fighter and fought his battle so as to spend some more time with you. I know that nothing that I can say will make you feel better but I will always pray to God to bless Alex and to give you and your family strength to cope. Hugs ((()))
Aryan's mommy S
Kathleen,
I'm truly sorry to hear about you loss. You are in my prayers.Please remember that your not alone continue you remain strong.
P.S. Alexander is beautiful
Roxanne
I came across your story at Baby Center as well. Very touched by what you said ... "I am grateful for the time we spent. God was so patient with us, waiting until we had learned some valuable lessons before he took Alex home. Alex was so patient with us, hanging on until we were as ready as we ever could have been to deal with this pain. I know 2 months ago we were not strong enough to live through this, Alex made us strong enough." ... you said it all right there. You have a beautiful son, a beautiful angel! Thanks for letting me read your story and the best wishes for you and your family!
Michelle Torgerson
I'm so sorry to hear about the loss of Alexander. I can only imagine the pain you are going through. He's a beautiful angel.
Maria Bennett
My heart goes out to you and your family! I am thinking of you the this time of sorrow! Alexander was a beautiful little guy, and I thank you for sharing his story with us!
Janelle Duplessis
Kat, There are no words to say how I feel in my heart. When I saw the pictures of your son my heart skipped a beat. He is gorgeous. Reading your story brings tears to my eyes as just 2 1/2 years ago, I too lost my baby. There are no words that anyone can tell you to make the pain go away. You will get to the point where "i'm sorry" starts to sound like pity instead of comfort. Then, the why's begin.. and what did I do to deserve this pain... While I was reading, I didn't cry until it came to what your pastor said, and he is right. The pain that you feel now is nothing compared to what is yet to come. I will be praying for you so that God may grant you all the comfort that you need. In a world where people take their children for granted, we will have to bury ours. For that I am sorry. For the pain that you feel when you see your son in the casket, Im sorry. But he is in a better place and without pain. So God knew you could take the pain, so he didnt have to. For that, God made you his mother... I will pray that My children in heaven watch over yours until you can get there to see how he is for yourself...
God Bless you and yours...
Samantha P
I am so sorry to hear about your little guy. It definetly brought back memories because just 4 months ago I lost my little girl to heart defects. You will find comfort with the little things...I'm so sorry
Jade Johnson
Your little Angel is SO gorgeous. He is a little tow-head. God Bless you and your family...you are in my prayers....
Tracy
Kat I wish I was close enough to hug you. I just want you to know if you need anything that a long distance friend can do let me know.
Shannon Schutz
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