Monday, April 17, 2006

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.

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!

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.......

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.

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!

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.

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