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.

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.

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

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

How am I suppose to do this?

I can't figure out how I'm 'suppose' to act or feel. As a mother I think a lot of us think about losing a child, about how that would be and how we would feel but so far I'm just in a fog. Sometimes the emotions come strong and I'm left sitting on the floor sobbing and feeling physical pain in my heart, other times I'm laughing and remembering those long weeks in the hospital.

Today I've been calling everyone a 'bad egg' remembering nurse Lori and how she'd point her finger at Alex and say 'your a bad egg mister'. It made me giggle then and still does. People must think i'm crazy, off my rocker.

I miss Alex, I miss the people at the hospital that we had come to know and feel like I've not only lost a son, but an entire family. I've been running at mach 20 for 7 weeks and now that were home without him there's nothing to do, I feel lost.

Just like always, Craig and I are opposites. He cannot stand to read Alex's guestbook, or look through the things from the hospital. I on the other hand have thrown myself into it all, organizing his things, researching heart defects, posting on message boards.

Even though Alex gave us signs for days that the end was near, and I saw those signs and I think without realizing, prepared myself somewhat; his death still came as such a surprise. It was so fast. It's so hard to beleive that 4 days ago he was here, and then in the blink of an eye he is gone.

I think about the night before he died. I was at the hospital and I spent more time than usual at his bedside ( I tended to spend a few minutes touching him, then sit in the rocker and watch him, and repeat this process over and over) . I touched every part of him that I could through that evening. He seemed so at peace. A little tiny speck in my mind thought something wasn't right. His sats were bouncing around and I thought his fingers looked duskier than normal, his fingernails were a deep purple. It didn't occur to me that the next time I would see him would be to see them doing chest compressions on him.

I feel a lot of guilt. I regret that we didn't bring the video camera to the hospital and videotape every moment of his life. I regret that we didn't take more pictures. I feel guilty that he was born 4 weeks early, maybe if he had those last 4 weeks to grow he would have been stronger and better able to fight. So many things I would have tried to do differently had I only known.

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.

Yesterday we made funeral arrangements, tomorrow we pick out his stone. It is so surreal. The pastor told me we haven't begun to grieve yet, we are still in shock and that scares me. It scares me because the emotions are so strong, the pain is so raw that I don't know what Ii'll do if it gets worse.

I feel at peace in some ways. When I was running to the hospital that day I knew he was passing. When it happened the pain I felt was so extreme I thought my own heart would stop beating then and there. Then as the day went on I felt this overwhelming sense of releif. Releif that he wasn't huring anymore and I still feel that. I feel him all around me but no longer have to see him hurting, see his wounds and the constant oozing of blood from one site or another. He isn't hurting anymore. All he knew in life was pain and that has finally ceased, I'm grateful for that.

This peom will be on his memorial...

God saw you getting tired
and a cure was not to be

So he put his arms around you
and said 'Alexander come with me'

With tearful eyes we watched
And saw you fade away

Although we love you dearly
We could not make you stay

A special heart stopped beating
Your body it did rest

God broke our hearts to prove to us
He only takes the best

Fly high little bubba, fly high.