In many ways, it had flown by, but in others it seems such a long time since I last saw him getting blue and puffed.
His buggy is languishing in the garage (I can't quite bring myself to get rid of it... just in case) but he hasn't been in it since we took him for a ride out the front of the hospital when he still had his chest drains in.
Life has settled down to a happy normality again.
We are used to his pacemaker and his warfarin now.
I was so worried about the warfarin pre-op. I thought it was going to ruin the 'normality' of our life.
I remember thinking that life pre-Fontan was the most normal it was ever going to be for Chas, and that once he had this new circulation - along with the warfarin and the pacemaker - things were never going to be the same again.
Well - in one way I was right. Things have changed beyond recognition... but for the better.
Charlie takes the pacemaker and warfarin restrictions in his stride, along with the INR testing. (And I was SO scared about that!!)
It's amazing how quickly new things become the norm.
And he is loving being able to join in with his friends. Even though it has been nearly a year, being able to keep up and take part still brings him so much joy.
He still isn't the world's fastest runner, but he can kick a ball around the playground without gasping for breath.
He'll never be on the cross country team, but he can walk and walk and walk without struggling or needing a carry.
He can't do rugby or judo, but he can scooter at speed with the best of them.
His breathing is quiet and measured now - I can't locate him just by listening for the puffing and panting.
He is pink and warm to the tips of his fingers and toes.
He is a wonderful, empathetic, sensitive, funny boy who lives his life to the full.
I wish I had known this time last year, just how big an impact the Fontan would have on our life, so I needn't have been so terrified.
But I doubt I could have understood properly even if someone had told me. Until you're on the other side of it, you can't fully appreciate what a wonderful thing it is.
Yes, it was scary and stressful, but it was been worth every moment of fear and frustration.
It gave our boy a new life.
3 comments:
Wow! I can't believe it's been a year either! That means I've been following your blog for over a year now!! I'm so glad you posted this today. We are two weeks away from Aly's Fontan and...well... you know how I'm feeling all too well I'm sure. I really needed to read this encouraging post today. Thanks so much!!
Read this before work but didn't have time to comment, was thinking earlier what a fabulous post for any pre-fontan families to read and the comment from Jenny is proof of that, a whole year, wow, where did that go? it's such a pleasure to have to tell him and Seren to "please just slow down"!!! k xxxx
So beautifully described, I have both a tear and a big smile. xxx
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