25 August 2010

The Waiting Game

Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.
Elizabeth Stone

It was 12 weeks ago yesterday that the Tetralogy of Fallot diagnosis was confirmed at Children's Hospital -- for 12 weeks now, we've known this was coming. For 12 weeks, we've been preparing and waiting. With 6 more weeks until our due date (and no signs of early labor, despite what the general public may think) and no reason to expect that he will come earlier than that, that means there is more waiting to do.

Waiting. And ... waiting.

That's where we are right now: just waiting -- waiting for the time when it's right for Ewan to be born. Like any expectant parents, we are over-the-moon excited to meet this little guy. I can't wait one day to get to kiss and cuddle him, to see his face, and find out if he has my nose or his daddy's hair. His spunky in-utero activity gives us glimpses into his personality. I can't wait to know him outside the womb.

But any heart mom who had the advantage of finding out ahead of time knows that this waiting period is bittersweet: the day I get to meet him -- the day I've anticipated since I found out I was pregnant -- is the day it will get tough for him. He's in such ease now: warm and well-fed, growing and kicking away. But when the time comes for his birth and first breath, this will be the beginning of his struggle to live and thrive -- when we find out what kind of heart story he's going to have, when we watch, when he fights, when we entrust him to an amazing team of doctors and surgeons and ultimately, to the Providence of God.

Waiting and wondering. Praying.

As I see other heart stories play out, I cannot help but wonder about ours. I immerse myself in details, familiarize myself with the ups and downs of the families waiting on their little fighter babies -- following stats, praying for functioning kidneys. Like them, I can only watch and pray. Just like they did, I have to wait until it is time. And just like they did not know, we will have no idea until the story plays out before us what will happen in the days and weeks immediately following Ewan's birth.

And so I find that within myself I hold the tension of two equally-weighted truths: I can't wait for him to be here, and I want him to stay in there for as long as possible, shielded and protected.

I know the waiting will be all worth it. I know it's necessary. And I want to give that time to him.

Every day I wait is a gift -- another day we are connected, where I get to feel his movements (which have been hard and frequent lately), where I can play a role no one else can play in sustaining his life. I need to remember to breathe through those times where I get anxious about what hasn't happened yet and where I attempt to imagine what nobody can know. I'm finding it increasingly difficult to live in the moment, even though I know that this is what is best for the both of us.

I know that one day soon, my heart will be walking around outside my body.


Sarah said...

That quotation is so true . . . so true. And waiting is so hard, especially when you're anticipating something difficult. I wish I could make it easier for you guys. I run out of words to write to you here, but know that I'm praying and hoping and am so excited for your journey to unfold.

Stefenie said...

Waiting is never easy. I guess you could look at it this way....all of this waiting for him to get here will prepare you for all of the waiting you have to do after he arrives. Waiting for a diagnosis, waiting for a cath to finish, waiting for news from the OR, waiting for news that it was a success and waiting for the day they let you take him home. CHD is one giant waiting game.

However for the most part a lot of times that you do spend waiting are good ones....like when you get to come home and love that little baby until it is time again for another surgery.

Have you heard the song "While I'm Waiting" by John Waller? I listened to it over and over again the day I waited for Logan's surgeon to call with his surgical date this past January. It was an incredibly long and emotional day. I was not ready to hand over my child yet again for another surgery. I was scared because he was no longer my baby. He was my child, the one I had snuggled for three years, said I love you to each night, played tickles with and shared such an incredible bond with. Honestly the thought of losing him was almost too much for me to take. This song provided peace at a time when I felt out of control. It reminded me that it is never easy to wait for anything but God teaches us to be obedient to His word. Remembering the promise that He has made to us.

Here is the link to the song....


Praying for you while you wait! {{{HUG}}}

christianne said...

Gosh, I can so feel the tension in your words: wanting so badly for him to be here and yet wanting so badly for him to stay safe and cocooned in your protective space made just for him.

It's an amazing thought to realize you are sustaining his life in a way nobody else can right now. WOW. Just, WOW.

I'm also blown away by the thought of "finding out what his heart story will be." Something that can't be known until he arrives. Something that will be completely unique to Ewan.

Praying for you so much. I'm with Sarah that I don't often have words, but I'm listening and I'm praying as much as I can.

Love you.

Baby Hung said...

Hello, my husband stumbled upon your blog and this is hitting home a little to much. I'm in my 19 week and just found out our baby has either Tetrology of Fallot or Truncas Arteriosus. We have a few more weeks before we can find out which one of the two she has, so it's also a waiting game for us too. I'm curious to see your blog going forward what you will experience. I'm also curious to what you have learned and discovered up to this point. Is there any way for me to reach you via email? I know we're not in the same city, but I'm sure the experience will be similiar.

kirsten said...

@Baby Hung
I hope you see this!! I tried to access your Blogger profile, but wasn't able.

Thank you for stopping by and saying hello; I am so sorry to hear about the diagnosis for your little one. We received the same two possible initial diagnoses as you: Tetralogy of Fallot and Truncus Arteriosus. I know well what a blow that can be.

I'd love it if you would e-mail me: you can e-mail me at:
kirsten116 [at] gmail [dot] com
team.ewan [at] gmail [dot] com

I look forward to hearing from you.

Pink (AKA Lucia) said...

I love your latest baby belly bump picture! Your belly is starting to look like a basketball ball, so cute and so beautiful! I hope your baby will make it and that he gets the opportunity to live and grow up and be your son and everything. I know that you and your husband are so nervous about this birth. I will be thinking of you and your child when he is born. I have no idea what it is like to have a child with ToF let alone any CHD child, but I want to wish you the best of luck and that I will be hoping for the best. Be strong, hang in there, and don't give up! Ewan sounds like he has a spunky personality and THAT will be helpful in his fight for life when he is born. He will be a little fighter, I can feel it. *hugs* I will continue to read your blog.