Wednesday, November 21, 2007

The pit

The day my child died, I fell into the pit of grief. My friends watched me struggle through daily life, waiting for the person I once was to arise from the pit, not realizing "she" is gone forever.
The pit is full of darkness, heartache and despair, it paralyzes your thoughts, movements and ability to ration. The pit leaves you forever changed, unable to surface the person you once were.

Some of my pre-grief friends gather around the top of the pit, waiting for the old me to appear before their eyes, not understanding what’s taking me so long to emerge. After all, in their eyes, I've been in the pit for quite sometime. Yet in my eyes, it seems as if I fell in only yesterday.
Not all of my pre-grief friends are gathered around the top of the pit. Some are helping me with the climb out of the darkness. They climb side by side with me from time to time, but mostly they climb ahead of me, waiting patiently at each plateau. Even with these friends I sometimes wonder if they are also waiting for the pre-grief me to magically appear before their eyes.
Then there are the casual acquaintances, you know the ones who say, "Hi, how are you?" when they really don't care or really want to know. These are the people who sigh in relief, that it is my child who died and not theirs. You know...the "better them, than me" attitude.

My post-grief friends (and a rare pre-grief friend) are the ones who climb with me, side by side, inch by inch, out of the pit with me. They are able to reassure me when I need reassurance, rest when I need resting, and encourage me to move forward when I don't have the strength. They have no expectations, no memories and no recollection of how I "should" be. They want me to get better, to smile more often and find joy in life, but they also accepted the person I've become. The "person" who is emerging from the pit.

Author Unknown

Sunday, November 18, 2007

Bitter old hag

As I've been sitting here for the past little bit reading some caringbridge sites of kiddos we either knew when we were in the joint, or who we have come to "know" through those we knew I have been reflecting and thinking about me, my positions on things...

I notice I've been bitter lately. Lately being the past couple years or so. Alex would be coming up on turning TWO now you know. TWO! It astonishes me that 2 whole years have nearly gone by... anyway back to my point.

I've been bitter, I've been angry, I've been downright pissed off. But you know what? Who wouldn't be? I have to talk to people, see people, and hear about people who take what they have for granted. They go about their day. They go to work and spend 2 hours a day with their families and somehow that is ok. They just don't realize how quickly EVERYTHING can be gone.

I'm simply sick and tired of people who take it all for granted. Every single morning I wake up and nearly cry because my kids are still here for one more day. Every night I go to bed begging God to give me another day. I have learned the hard way that people don't stay here forever. So many people don't think they take it for granted but they DO. You can see it in their day to day lives.

I guess I get so angry about certain issues because I know what it feels like to just wish you had that 1 more day. I wish I didn't need to sleep during those 7 weeks, I wish I didnt' leave him for a second to eat, use the bathroom, whatever. But I did. Those things I really did HAVE to do. People walk away from their kids every day for things they don't HAVE to do and I can't fathom making that choice.

People worry about such stupid shit. They worry about sports games and shopping and if their dry cleaning will be ready by 5. Why? What the hell does any of that stuff matter? It consumes people's lives and I can't figure it out. WHO THE HELL CARES?! Is your home standing? Is your heat working? Is your family safe and healthy? Then get down on your damn knees and thank the lord above.

It's just really frustrating. Yep I'm angry and bitter and all that other stuff. But I'm grateful and happy too. I don't take one minute for granted anymore. It's been said that I am a changed person since Alex died. Well of course I am! I'm a whole lot different than I use to be. I know I've become a lot less tolerant and likeable. My mission in life isn't to make everyone else happy, i'm sorry to say. It's to make my life and that of my family the most rewarding it can be.

I'm still learning. I'm learning who I was, I'm learning who I am, and I'm learning who I want to be. Forgive me if I confuse or anger you in that process but it's a ride you can't join me on. It's a ride that won't be over for a long time and maybe I'll never figure things out. You have the choice to ride it beside me or to stray away. I don't have any choice in the matter but you do, use it. Don't pretend, don't patronize, and don't make my grieving/learning/growing process about you, it's not. It's about me and it's a very difficult path to follow because there's never a straight line........ the path zig zags, loops, and sometimes just simply turns around and goes back where it came from. All I know is that for right now I am sorting things out and I am keeping those close to me as close as I can.

Sunday, October 7, 2007

Life aint always beautiful

Isn't that the truth. 2 children who's websites I frequent died yesterday. They both had a brain tumor called a diffuse pontine glioma. It is inoperable and treatment is aimed at slowing it's growth. The average life expectancy is 6-12 months.

This morning Hailey and I were talking about hard subjects, as we frequently do. We talked about Alex and how he fought so hard to be here and how people aren't always perfect but sometimes the least perfect have the most to give. I wonder sometimes what the greater plan is for us all. The why's are so difficult to deal with sometimes. I don't think I will ever understand why Alex died. I don't know that any parent who loses a child ever gets that moment of clarity.

I think about all the children who are simply denied the chance. The babies who are lost to "medical termination" upon their parents finding out they have down syndrome, or some other abnormality that makes them "less than perfect" in the eyes of the world. It makes me angry. I wish I had my disabled child, I WISH I could push him in a wheelchair, I wish I could hug him, kiss him, and sing him to sleep.

I am comforted in the fact that we did everything we could. He was in an amazing hospital and every medical opportunity was available to him. We could have "let him go" as some would have. HE chose when it was time to go, I'm grateful for that.

Every one of us is less than perfect in some way. If we ought to abort a baby because it's not "normal", where is the line? Aborting one who has a cataract? who will need a brace for scoliosis? And when is the line drawn? If they are taken before birth it's ok, but when will we start moving on to sacrificing 2 year olds who contract a disease? I just don't understand how we think we have the right to decide who lives or dies. It doesn't make sense.

I was once reminded that God gives us free will, but he also gave us a brain. But did he intend us to use that brain to make decisions best left to him? Where is THAT line? You have to draw it somewhere.......... so where?

I struggle with these questions. A few days before Alex died I finally broke down completely and relinquished control to the lord. Right there in front of the dormatories of the University, in front of the busy hospital. I'm sure I looked like a lunatic but the weeks of what felt like running through water finally caught up with me and I had nothing left to give, I had no fight left in me. I told God he wins, I give him control. It was then that the put my son out of his misery. I never gave up on Alex but I gave up my selfish fight for him with God.

Some people don't understand the decisions C and I make regarding our family. It's difficult sometimes because it would be senseless for us to learn the lesson we did, to give up control, and then try to take it back now. But what does God intend for us to have control of, and what does he solely take control over? I just don't know.

To some people it's all so simple. It's just not for us. I don't think things will ever be simple again. Things use to be so simple even though we didn't realize it, now the seemingly smallest things just aren't anymore.

It's exhausting sometimes. This post probably makes no sense either hehe, it's one of those that I'm just typing as I'm thinking so I apologize for that. It's one of those more for me than you kinda posts.

Sunday, September 16, 2007

Post traumatic stress

Why do some kids get thier miracles and some don't? I don't know that I will ever understand that. I find myself envious of people who get it. It's very strange to read the story of a kid who made it back from deaths door and have this strangely sad feeling. Most people read stories like that and feel better about life, I do not.

I've been trying to get myself back in my "happy place". I tried to find a counselor to talk to and none are taking new patients that my insurance covers...... it figures.

Many people don't really know this about me but I've had Obsessive Compulsive Disorder since childhood. (I know, if you've seen my disaster of a house you are really surprised huh?) And it's really flared up again. I almost don't even notice it until I'll be instinctively making all the vents in the car perfectly straight or something and Craig will just mess them all up and tell me it's OK if they don't all face perfectly forward...... no it's not! hehe We joke about it a lot because it's really just stupid things like that, but it's just the overwhelming need to have certain things perfect. Hard to explain.

It's not just silly things either, the obsessive thoughts are what is debilitating. The "death monster" that I spoke of before. It's like if I don't do the "rituals" then something bad is going to happen. You'd think people with OCD would live in immaculately clean surroundings. That's not really true. The silly rituals get in the way of things and some days you can spend hours just making sure every sock in the drawer is folded the right way, that the other stuff doesn't get done. So while my house may be a rat trap, there is something that is perfect....... dumb eh?

Anyway. I'm working on it. I go back and forth with it getting bad and then it becoming nearly nonexistant. Now that i've realized that's what this is I just have to recognize it and deal with it and get it to regress again.

But for now, don't mess with my vents! hehe

Tuesday, September 4, 2007

When reality isn't

In a wierd way, i've spent the past almost 18 months in a sort of denial. To ask me I would have vehemently swore that I was not in denial, I was coping the best way I could. But I was/am.

I don't think i've ever taken the time to totally process. When Alex was born and got sick, those weeks were such a constant roller coaster. There was never any downtime to think. I never had the chance to really say "Ok, my child was born gravely ill, this is our reality"

After he died, we threw ourselves into things, we got pregnant with Nathan, again, never taking the time to process. To really accept that our child died.

Now that things are leveling out. I find myself realizing that my child was born, he was critically ill, and he died. HE DIED! I read stories of other kids who have died and I feel such a deep sympathy for thier families, it's like I don't realize sometimes that I am one of them.

I remember the Monday before Alex died, the day when the inate "knowing" took over and without being told, I knew he was going to die. I remember making the kids lunch and crying that whole day. Hailey asked what was wrong and I just blurted out "I think Alex is going to die"..... I felt SO bad about saying that, watching the tears well up in her eyes. Yes he had taken a turn for the worse but there had never been a time when anyone said to me "you know, Alex probably isn't going to pull through". I started to question myself. Why would I say that to her?! A child!

That afternoon at the hospital I talked to the child-family life specialist and I didn't tell him that I had told Hailey that, but he said something to me that made a ton of sense. He told me that the worst thing I could do is hide from my kids. They KNOW when something is going on without being told and if you don't say anything, they get scared and upset. If you say it, then at least they know what's going on. You see, kids have a great way of making other people's problems about them. Not that they are selfish, they just always think that if an adult is upset it's somehow thier fault. So by saying what I said, Hailey knew that I was upset about Alex, and it wasn't her fault.

This grieving process. It's hard to get a handle on. There is no right or wrong way to do it and that makes it extremely difficult to know if the things I do, my coping mechanisms, are they normal or abnormal? Am I grieving in a "healthy" way, or not?

I suppose I'm greiving in my way. And that makes it the right way. I just wish someone would come along and tell me how I can put this behind I can understand.

He's been on my mind a lot more than usual lately. It struck me odd the other day when I saw a kid who had a feeding tube and the mom was tending to his needs. I got sad and thought how I wish I had the opportunity. Who WISHES for a sick child? It's so strange, like I was robbed of being mom to an Alex who would have been normal and healthy, but then I was robbed of an Alex who was sick and needed such indepth care. I had prepared myself for spending the rest of my life tending to his needs with medications, doctor visits, surgeries, procedures. And I'm grieving THAT too. I guess anything you prepare for and dont' get is a loss.....

Wednesday, August 8, 2007

The death monster

Today I'm struggling. I'm fighting back the tears. I have sat here all day feeling like there was something I needed to do but I can't figure out what it is. Slowly it has crept up on me, the sadness.

I feel like I missed my opportunity to grieve. I shoved it all away for so long and now the people who were once there don't even know I still struggle as much as I do. I can't bring it up to Craig,. I can't make him sad.

So I deal with it alone. It isn't fair that I have to live every day in panic. Have you ever had a panic attack? Try having one for a year and a half straight and not telling anyone. I really don't know how physically I can keep going on like this, honestly. Stress isn't good for anybody and the constant unrelenting stress all day every day............ oy.

Yesterday we were at the grocery store. Nathan was in his new shopping cart cover (I've become a germ-a-phobe) andhe got tired so I laid him down it in on h is little matching pillow. Craig was pushing and I looked over from my shopping list and in my mind....... he was in a coffin.

I feel like there are these death monsters beating down the door all the time. Just waiting for a chance to come in and steal me, Craig, or one of the kids away forever. Nathan is sleeping.... is he breathing? Jacksen has a leg cramp.... is it cancer? Christian is tired today...... is he gravely ill? I have a headache...... is it a tumor? I have to go to the store, but I can't go because it's Saturday evening and there might be a drunk driver. I need a filling, the lidocaine makes my heart race..... will I have a heart attack? Craig has a cold....... is it lung cancer?

Can you imagine living life like that? That's an ALL DAY thing for me.

I'm tired. Physically tired, emotionally tired.

UPDATE a few hours later:

I think I just need to continue to use this journal sometimes just to rant and vent and cry. Then I can pick up and dust off .I have felt a lot better since I posted this entry. I am going to make an appt in the morning with a counselor. Maybe they can't help me, maybe they can't understand.... but maybe I need one place where I can just be REAL for an hour a week..

Friday, June 29, 2007

A new beginning

I stopped by to check the guestbook entries and saw Trista's entry and cried. Some days I yearn for that moment of healing........ that moment that the hole in my own heart closes just a little and then I realize that it closes a little every day. I don't have a "superman" scar that people can see, but some days the scars are covering my entire being.

I always knew that our experience was for a reason, I think that I thought that one day someone would just knock on my door and tell me what I was suppose to do with it. God and I have many conversations about that. I have trouble reading between the lines and seeing the rainbow for the clouds sometimes.

Every day that I have lived since the day Alexander was born has been a new day to do something with my life. In the past year and a half I have had to rebuild myself and I still sometimes wonder if I ever will be a complete person again. I have gained confidence, I have gained tremendous knowledge and compassion, yet I have lost such a part of me that I can't get back. I am just now realizing that maybe I don't need it back. Maybe Alex's illness and death was my rebirth. Maybe I got the opportunity to start new in life, that's a very liberating idea.

I'm different now. At first I resented the stares, the saddened looks as people glanced my way. Now in a way I cherish that. When Alex died all expectations that I put on myself of what I thought I needed to be melted away and I was given a chance to become anything I wanted to be.

I think I have come a long way in that venture. I think I'm a good person now. I didn't always feel that way. I can look at myself in the mirror and although I've aged physically this past year, I like what I see. I see a woman who has finally become something. I have finally gotten my career where I want it to be, I have finally become the mother I wanted to be.

I don't think I've dealt with it all in ways that were expected. I think you have a choice, you can lay down and die or you can realize that quite honestly the death of your child is the worst that life can do to you..... I've survived it and that means I have the strength to do anything. I refuse to lay down and let my spirit die.......

Tuesday, June 26, 2007

Every mother's nightmare

Every mother pushes the thought from her mind. The thought that something could happen to her child. It wakes us from our sleep, we think we would fail to survive it.

Some of us have for whatever reason have to live it. Somehow we do survive it but how much of our soul is still intact isn't always certain.

It started with the vasectomy, kind of strange isn't it? Then the reversal. Then by the grace of God the positive pregnancy test. An uneventful pregnancy, perfect in every aspect until at 36 weeks my water broke.

He was born in January 2006 at 2:32am. A petite 4 lbs 14 oz. The next 16 hours were pure exhausted bliss. Until he stopped breathing...

That night we heard the dreaded words that would change our lives. Heart defect. We traveled to one hospital to stabalize him, then another to fix him.

We lived in a Ronald Mcdonald house for over 6 weeks.
Our lives turned on it's nose. Normal became a thing of the past. Our lives were dictated by every breath of a ventilator, every blood test, every ultrasound, CT scan. They say it's a roller coaster. It is. Imagine that feeling as you are going up the track.... the anticipation. Then imagine going over the hill to the first big drop. The track could well derail and hit the ground.... or it could be fine and climb another hill only to drop again. There is no certainty. So many days and nights I would sit in his room, 3 or 4 chairs aligned in a row with doctors and me just sitting there with baited breath waiting for Alex to show us all what to do next.
Alex showed us strength far beyond anyone's comprehention. So many times he pulled through from deaths door. He taught us to live in the moment, because you never know what the next may bring.

Alex showed us patience. He endured so much to stay with us until the moment we were strong enough to live without him.

The day he died changed my already changed world. My children now knew that children die. My husband and I now completely understood the uncertainty and precariousness of life. We learned to take each day as the gift that it is and never let one day go by where you are not happy with the way you lived it. It might be your last.
The day we put his tiny body in the ground made me realize that in an instant, life is over. It's that quick. You live, you die, you are put in the ground, and people walk away. All that really matters is what you do between the day you are born and the day you die. How many lives you touch, how many lives you make better in some tiny way.

So, from that day forward, I have tried and will continue to try to make each day count. I will try to live without regret. I will try to teach others the lessons that my son taught me. I learned more in 6 weeks than I will teach in a lifetime

Friday, March 16, 2007

That day

I always thought that today, the first anniversary of Alex's death that I'd have something extremely profound to post here. I don't. So I'd like to just remember for a moment. Remember a day that will be hard for me to remember and hard for you to read.

I knew. I knew days before. I don't know how I knew but I did. I talked to my friend Brandy on Monday about it. I kept telling myself that I was being stupid, he'd be fine.

I saw so many other babies get better. I saw their chests closed, I saw thier mothers hold them.

I felt the need for the other kids to come and see Alex. That didn't happen because they got sick. I so badly now wish they had.

That day, that phone call. Hearing those words "Alexander has taken a turn for the worse, please come" I knew then. There's something strangly frightening in those things you know without being told.

I ran. I ran through the snow until I couldn't breathe. I ran some more. I ran into the hospital and waited for an eternity for those stupid elevators. I ran through the halls....... I wanted to run the other way. I got to the unit and I took the back way to his room, subconciousely I knew if I ran past the desk someone would try to stop me. I needed to go in there, I needed to see.

I ran into the room and saw 2 of our doctors standing on either side of Craig. I'm not sure if the room was silent or if I just wasn't hearing the chaos that was going on, I don't remember hearing anything. It must have been loud though because I had to holler Craig's name 3 or 4 times before one of the doctors heard me, I was standing right next to him.

I didn't look at Alex's bed. I asked if he was coding and was told yes. I had always envisioned breaking down hearing words like that, I was running on pure adrenaline I guess because I was very matter of fact about it.

They wanted more tests. We all knew it was futile. I'm glad we did those tests though.

We go back into Alex's room. The nurse is doing chest compressions. I look down at his little body and see his chest ripped back open. I can see the metal clips holding his sternum together. The mama bear in me took over, stop hurting him! I looked at the nurses teary face and told her to stop, she looked at the dr who nodded his head and lifted her hands off his chest. I kissed Alex and told him I loved him, so did Craig. He was already gone, his soul was gone to heaven long ago. Someone turned the monitor off. That monitor had been my lifeline for so long, my information station. The only real consistant thing I had, that was probably the most real thing, seeing that monitor go black.

I sat down and she put Alex in my arms. The most primal emotions took over and I cried like I have never before in my life. I wailed, I couldn't breathe. So many thoughts filled my head and then were replaced by new and sometimes conflicting ones in seconds. I was strangely relieved. I kept saying in my head "it's over, it's finally over" and then guilt for thinking that would come. For once his peace didn't come from a medicine pump, his chest didn't forcefully move up and down in the unnatural way a ventilator breathes. He was at peace, for the first time ever.

they asked if we wanted a private room. I couldn't bear to move from HIS space. I felt like if we moved then that started the change and I wasn't ready for the change just yet. I needed to do it slowly, one step at a time.

Telling the kids was excrutiating. Watching their hearts break in two. Watching them hold his tiny body. Shaylin's words "momma he's cold" will ring in my head forever and ever.

I wanted to stay forever and hold him but I coudln't. The physical changes were setting in and I didn't want to remember him that way. I said goodbye and laid him on the bed that he had laid on for the past 6 weeks, in his little blue pajamas and hat, the only clothes he'd ever worn. I turned around and walked away. I walked away from him. I had always refused to leave the cities without him, and now I had to.

I left a peice of my soul there too.

Saturday, January 27, 2007

Happy Birthday Alex

One year ago at this very time my body began the process of birthing you. As I sit here holding your brand new brother in my arms I still hold a hurt in my heart. All the hope and joy we felt one year ago still haunts me. We had no idea what a roller coaster ride we were in for and today it's all very surreal.

Thank you Alex for helping your brother into this world safely. We can see your spirit and determination in him already. Thank you for the gift that you and god gave us. A part of you lives on...

Happy birthday sweet boy. I love you and miss you to the depths of my soul.