Thursday, July 19, 2012

A Boy Frozen In Time & Liver Recipient Update

I've been trying to attempt to describe the change I feel about Jack now that Grace has arrived. It wasn't as though I actually think he's "imaginary", but rather I think it's about how he will always be a tiny infant to me... He'll never be more than 8 days old.

In my memory, in my mind, in video, and in pictures- never more than 8 days.

On the night he was born

I hate that.

As I watch his sister grow out of her 0-3 clothes (because OMG, she weighs like 30lbs now? A slight exaggeration, but honestly.. My husband commented I have definition in my arms... I wonder who I can hold responsible for that?), I am getting further and further away from him. I can't go back, I know I can't go back, but still. 

He's still there, just frozen in time. January 9th... January 11th. Dates he was declared, donated and gone. I know he's "here" with me the same way I now understand how it's possible to feel my heart burst with pride and adoration for the little suckling baby on my breast while simultaneously grieving the little guy who I wish would have done the same.

Just before we packed up and moved a couple weeks back, we received some unexpected mail. There was the Trillium Gift of Life envelop and contained within it was a cover letter letting us know that attached to this paper was a letter from Jack's liver recipients mother.

Over the past 18 months, I wondered about this little boy. We knew so very little about him, and while I would be lying if I said I hadn't "Google-investigated" to see if I couldn't locate more information about him (anyone reading this that I work with would laugh about this... I Google EVERYBODY!), we honestly didn't know whether he had lived or not.  I eventually convinced myself it didn't matter either way... Because I was terrified that perhaps that other little guy wouldn't have made it either, and I would feel even worse somehow that my little boy wouldn't be considered a hero.

But he is a hero. The other little boy? He made it. He turned two whole years old on July 4th. He was born healthy, and then a few days later he wasn't. Not unlike my own son.

He lives with my son's liver within him, and he's doing well. A miracle in it's own right.

As thrilling as it was to know the recipient lives, it actually brought out some suppressed feelings. First, I wasn't expecting the letter- mere days before what would have been Jack's 18th month of life, had he made it. I'm still pissed we didn't get some forewarning- a phone call, a letter in the mail letting us know that a letter was coming. Because it likely wasn't something I should have received and opened alone. Because it brought me to my knees with anguish and tears.

My husband was angry. I was angry. For irrational reasons: the other parents? They were 22, unmarried and the baby unexpected. None of this matters- there are worse formulas for parents than that. (Side rant: I actually don't care whether people are married or not, makes no difference to me.) But it's the irrational part of my brain which thinks we deserved to keep Jack because we played by all the rules- we were married as society tells us we should be. We have well-paying jobs. We are nice people, I swear we are! My husband is the happiest person and people love him the instant they meet him... I took my prenatal vitamins. We planned for him. I diligently went to every appointment... Gleefully vomited nearly every day. All to ensure the best possible outcome. And it all went to shit anyway. What is it they say about the best laid plans?

You know what it really is? It's not anger. It's jealousy. We did everything as we were meant to and still can grasp that we lost him. But as I tried to explain to a friend last week, it wasn't like it was their baby or our baby. It was never one or the other. Jack was going, and on his way out his liver was donated. It just happened to be a perfect fit for the other little boy. There are no rewards for good behaviour, nor punishments either.

It's just so damn hard to accept that my perfect life went to hell in a hand basket, and yet there are some people never touched with this type of grief. Some people who think it only happens to other people... Those same people who told me in the early days that Jack was in a better place? I'd like for them to feel for just a second what it feels like to be me. To experience life after the death of your child, to experience a liquid, thriving daughter in my arms while my son exists only in memories frozen in time. Preserved for all of eternity.

I'll write more about the letter later. I'm still processing it.



Melissa said...

So perfectly said! So very perfectly said!

I sat in the waiting room today, little girl kicking in my belly, furious at the innocent Mom's around me. Sure, I do not know for sure that they do not know the pain of burying their child...but I can say some things are a give away (Ie complaining in public that you want a certain type of birth despite risks to your unborn child.)

It is not right that your baby died and theirs lived. The only thing that is right is that your little boy is a hero. That your little boy lives on. That he is held in everyone's hearts and never forgotten. What a precious son you have. I would be mad too. Mad at the injustice and unfairness of it all, mad that my child is not there and mad at the world for telling me it was going to be different.

Caroline said...

I have had a lot of these same thoughts really - just wrote about something similar. I still (and realistically probably always will) struggle with a bitterness of "why us?" because like you said we played by the rules, but none of that mattered.

And while it never was the other boy or Jack - it wasn't ever one ore the other. . . .yet for that boy, it was life or death. And it just happened to be your Jack who saved him.

I'm sure that's a lot to digest. It will be forever.

Veronica said...

I'm not one for segregation - but most days I feel it would be easier to function through life if I only had to interact with baby lost parents.
I know I've said this before - but it's like they're all living an untouchable life... and I'll never be understood in their reality, and their lives will never fit along side mine.

I know I'm not an outcast, because more and more of us pop up on my radar every day... but we're very much out numbered.
I've never been one to walk around with a green eye... but man, what a life that would be... no dead children... wow

that's crazy with the letter. You should have somehow been given a heads up.. a call! Just so dont have to find it mixed in on your kitchen table with your local flyers. Being a little prepared (and not alone!) would have been nice.

Rose said...

Oh LauraJane,

I think we can read each other's hearts. I can feel your pain- that letter is a grief bomb for sure. It is the unexpected ones that hurt the most, like stepping on an emotional land mine.

I am thinking of you and your little one today.


Renel said...

Jack is a HERO! How amazing. It is so sad that Jack had to die...but your family gave an amazing gift for life.

It isn't fair. I wrote a blog post about feeling entitled to a healthy living baby. That feeling of entitlement is the source of my jealousy/why me? which I think I will always struggle with. There is a lot of judging of other people and their lifestyle choices amonst my feelings.

It must have been so hard to get that letter...and I know I would be jealous of the little boys living thriving self instead of Jack...but wow...Your unselfish gift of life is amazing to me...You saved someone's life, Jack saved someone's life!!!!

TanaLee Davis said...

On one hand, For me being someone who's "perfect" baby was suddenly in need of a liver it seems like such a blessing and gift for your son to help another sick baby. But on the other its "sucks" (understatement)that yours had to die to help another live. I think one way that might help you cope and quite possibly grow closer to that family is that YOUR son lives on in that other child...YOUR son is a HERO and gives hope to another family everyday- something they will forever be in debt to YOUR son and you for. NOT all family's make such a big decision to donate LIFE. There are far to many in need for organs that never get them due to low availability. You can be "happy" that your son DID great things even after his life was cut short. This blog breathes the challenges of grief and love and a giant hole that lives in your lives since Jacks passing but today's post radiates HOPE that lives on because YOUR son could help another- like he might have if he had lived to be older maybe risking his life for another. YOUR son is a HERO. I love that. I am sorry for these mixed feelings your having- I know all to well this hurt...mine however comes from the other side...loosing a baby to not getting that life saving organ when others got one. I adore you Laura Jane. May your heart find peace with this pain and possibly draw you closer to the donor recipient. Hugs mama- I hope this is received well... I certainly say these words in hopes to bring you some comfort.

Carol-Anne (Use the Good Dishes!) said...

As someone who hasn't lost a child, I so appreciate your articulate and honest description of your feelings upon receiving that letter. It never really occurred to me that it would be hard for you to get such a letter. I would only have thought about it as being a positive thing...but now that you've explained it, it makes me realize that OF COURSE you would have some mixed, somewhat negative feelings! How could you not?

Anyway, all of that to say that I am ever so sorry for what you've been through, but that you are obviously a good and decent person who is just trying to get through a terrible situation.

Bless you.

Kelly said...

I want to say so much, but I'll just say yes. So much yes.

B. Wilson said...

I feel like I already commented, but I guess I just commented in my head. Weird.

Jack is a hero. Even if that little boy hadn't lived, he would've provided the parents at least hours more with their child if not days. Weeks. Months. That's a whole lot more than we got with our babies.

I'm jealous, too. Jealous Andrew never had a chance to even need to be saved and jealous Jack never had the chance to be 2 weeks old. Two weeks seems like such a short amount of time and I can see why it feels like it was gone in a flash and almost was a figment of your imagination. As we grow these babies in our arms, it does feel like we're growing further away from them and that scares me, too.

Addi's mom said...

Playing by all the is irrational, but I'd be lying if that wasn't one of my biggest problems with our situations. My whole life I was taught do good and you will be rewarded. Watching so many not play by the rules and have tons of healthy babies with multiple fathers and on welfare...well I could go on and on, but that's not the point of my comment. I obviously have a lot of anger and jealousy with this as well.

Okay back to your post. As if you didn't get a warning that a letter of that magnitude was coming. Shame on them! Jack is a hero and would have been no matter what, but knowing this boy lived means a part of Jack is still alive. I wish it meant Jack was here with you, but what I would give to know a part of Addi was still walking around this earth. That is truly a wonderful thing.

Hoping the letter brought (or will bring you) more peace than anguish. Maybe peace isn't the right or just pride in your amazing boy.

LookItsJessica said...

I'm sorry they didn't forewarn you about the letter. I imagine it is something you and your husband would want to prepare for and open on your own terms, together with PLENTY of time to prepare. I agree with Brandy that Jack is a hero no matter what. Even if the little boy had not survived.

As a sidenote-- I was 23, Jordan and I weren't yet married and Liam was an unexpected baby. I believe we deserved Liam just as much as any 30+ married couple deserves their planned-for baby.

Melissa said...

I'm sorry that there was no warning for the letter.

I often feel *exactly* the way you do. ((hugs))

Paula said...

I have often said it seems so unfair. There are teenage girls having a baby after baby with different daddies and no money but the one I wanted so bad had to die. It makes me angry and I have found myself saying why me. I wish I didn't but losing a baby makes you irrational.

I am sorry that the letter caused you such pain. I wonder if maybe after a few years you will revisit that letter and be glad you received it.

Love to you.

Merry said...

I can utterly relate to everything here. Freddie is lost to me too, just a tiny memory of a boy who I was afraid for. Bene has supplanted the feel for him now and it is hard to admit that.

I had assumed Freddie couldn't donate because he was sick. We said no to a pm because his little body had been through so much but I found out later that everyone just decided we had also been through too much. I am a tiny bit sad about that. It might have helped. Or, as you eloquently describe, it might not.

As for the unfairness of the rules... Oh, my daughters face the day she heard about baby p. her rage. That people get to keep their baby boys alive and be cruel to them while we, a nice family, lost ours. Her rage is my rage. I cannot help but vomit fury at the unfairness of that.

Jen said...

You speak to me heart, and I am so sorry you were blindsided by what could have been a very deliberate and meaningful experience (or at least not a sucker punch to the heart).

I am grateful for your honesty and that you have said (so eloquently) what I feel we are not supposed to acknowledge after losing a child: Jealous, jealous, jealous. You bet I am. Doesn't matter if it's right or fair or justified. The truth is, every time I see a happy, oblivious new mom with that inevitable new mom pride, I just want to tell her that none of this is of her own doing. I want to ask why does this work for you and not for me? How do you go on oblivious to this kind of heartache when I have to muck through it for the rest of my life? You bet I'm jealous; I just wish there was room for that kind of honesty.

As simple as it sounds: here's hoping today is better than yesterday.

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