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.
Friday, April 28, 2006
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
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