It's coming up on the two year mark for Winston's last repair surgery and I've been thinking a lot about the first two years of his life. I recently joined a couple of Omphalocele support groups (
Mothers of Omphaloceles and Babies Born with Omphalocele) to offer my encouragement to others going through the same experience we did with Winston. Reading through their stories, their questions and their fears has brought back all the old feeling and emotions I went through with more force than I'd anticipated.
At the time it was hard for me to express how I was feeling and share what we were going through - I tend to internalize things. I guess now that we're a few years removed from the experience I've been able to put all the worry and heartache behind me and had even somewhat forgotten the anxiety I felt back then. Reading other's questions and sharing my experiences with them has made those feelings (minus the anxiety) resurface and I'm reminded how fragile Winston's life was at one time. He's such a miracle and is so very blessed to have made it through so much already in his young life. I remember that one of his nurses called him our "little trooper". He's always been one tough little guy.
I drove up to the hospital every day while he was in the NICU, would stay there all day and only leave at night to come home to sleep. On these drives, I spent my time praying, thinking and listening to the radio a lot. Something I've meant to write about was what I wanted for Winston. I wanted so much for him to be healthy and to have a normal childhood without restrictions on his activities. I remember there was a Rascal Flats song out at the time called My Wish that really hit home with what I was feeling. To this day, every time I hear this song it reminds me of those drives to and from the hospital and hoping and praying for the best. Here's the lyrics:
"My Wish"
I hope that the days come easy and the moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep on walkin' till you find the window,
If it's cold outside, show the world the warmth of your smile,
But more than anything, more than anything,
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
I hope you never look back, but ya never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
And you always give more than you take.
But more than anything, yeah, and more than anything,
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
This was and still is my wish for him - that his life becomes all that he wants it to be.
This was Winston at 5 weeks old after his 2nd surgery. He was in a lot of pain at the time and I couldn't even hold him to try and comfort him All I could do was sit close by and sing to him
This is Winston at 7 weeks and doing awesome. He looked so peaceful this day I remember just sitting and watching him and feeling so grateful for how far he'd come.
Another angle shows the mirrors the nurses would put in the cribs for the babies to see themselves. Winston loved the mirror and would lay there just studying his face. I think he must have fallen asleep looking at himself.
