Just over 3 short years ago, our second child was born. She was born small having suffered in-utero growth restriction and the first of many diagnoses she would receive was “Failure to Thrive”.
She wasn’t getting enough nutrition and wasn’t growing as she should. It was heartbreaking. From there, she was developmentally delayed, had hypotonia, was socially delayed, tongue tied, had mild pulmonary aortic stenosis, was found to be missing 28 genes on chromosome 7 consistent with a diagnosis of Williams Syndrome. She had high calcium, poor mouth control, vision issues, hearing issues, digestive issues, sleep issues, suspected neuro issues (never confirmed), more feeding issues, ear issues, gross motor delay, sensory issues, repetitive behaviours, speech delay and so on. It’s a lot.
Despite her Williams Syndrome, many of these challenges are resolving, most importantly her cardiac issues, and of course, she no longer has failure to thrive. In fact, she’s a wonderful little girl who steals hearts and sings with gusto.
It’s me that’s not thriving.
When I entered the NICU three years ago, I clicked into survival mode. I did everything I needed to do. I learned everything. I met with everyone and I faced every challenge with my eye on the prize. To ensure she will reach her full potential. To do this, I had no choice but to put some things on hold. But now…
But now I’m pretty sure “survival mode” isn’t something anyone can survive forever.
So this year I hope to open the door to some of the things that I left behind the day the small one was born.
Don’t worry, I’m realistic. Ensuring Alma reaches her full potential is no less important today than yesterday. And I know that you can’t actually “make time” or “find time”. There are only so many hours in a day. Still, the rest of us need to reach our full potential too.
So here are my personal hopes for 2016:
I want to read a book.
I want to spend time extra time exploring the wonder of the world with my boy.
I want to knit something. Sew something.
I want to go one place I’ve never been. Maybe it’s a corner of the city. Maybe it’s a country. Just somewhere.
I want to eat food that makes me feel well, and strong and that tastes really good. I hope to have seconds, maybe thirds.
I want to experience one of those amazing moments that you couldn’t describe, no matter how hard you try.
I want to do one thing that’s daring, one thing that’s scary and one thing that I probably shouldn’t.
I want to raise a little hell.
I want to get better at something.
I want to laugh till I snort.
I want to feel my body moving and my heart pumping and my mood lifting.
I want to get to know some people better. Sit down, make I contact and talk about them for a change.
I want to breathe. I want to see something that takes my breathe away.
Life is short so this year, I want to do more living.
I want to stop surviving and start thriving.