Thursday, March 10, 2016

A year of breathing

One year ago, Thomas came home a new kiddo! He had his airway surgery on Feb 18th, 2015 and he was taken out of sedation on March 6th and then we got to come home on March 11th!! I wrote about it last year here and more here. It seems like many lifetimes ago that he had his stridor and sounded like this...


People would stop me in the grocery store and tell me to go to the hospital. When we were at the hospital for a normal appointment, nurses and doctors would come from around corners and ask if we needed them to call the emergency team. I don't miss that.

Now he sounds like this...


It's been 365 days that he can breathe and he has come to life. He never really saw us when he had his stridor. He didn't smile, he didn't interact. He just struggled to breath and that was all he could do. Now he smiles and plays and lives so effortlessly. He still has some hurdles to overtake in front of him and when they seem overwhelming, all I have to do is look back and see how far he has come and it never ceases to amaze me what he can do. 

Here's one of my favorite pictures from when he woke up from his sedation last year...

7 months old and 7 surgeries


Thomas has been thrown some more curve balls since his last surgery, but as with everything that gets put in his path, he finds his way over or around it. A family that I know from our spina bifida circles calls it inch stones, isn't that lovely? Not as huge as a milestone, but still a stone, still a beautiful formation of his own, no matter what the size. He never makes huge steps, there is never this A-HA, Facebook posting, camera catching moment, he just always takes little strides, in his Thomas way, towards what he needs. Then one day it's like he's there and we didn't even realize it. So his inch stones are important for us to notice and cherish and that has been a fun lesson to learn!

I enjoy all three boys (most of the time, especially when caffeinated), but parenting Thomas has been something special. No doctor could tell us what his outcome would be and when they did take a guess it always seemed to be worst case scenario. So we have parented him with no expectations, no pre-conceived notion of how his path would lay out in front of him and there has been an incredible joy in that. Which is so ironic because that is what I remember grieving the most when we received his diagnosis. He wouldn't be a typical kid that runs and plays and climbs. He might not walk. He might have learning difficulties. Communication may be hard. How am I going to parent in this new world that he is bringing. Well, as Thomas always does, he taught me. My world grew. My heart grew. Thomas has just taken us on this ride and since we don't know the route we have to just enjoy it as we go and the freedom that comes with that has made me a much better mom and person. One who is happy to take deep silent breaths with my baby boy!



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