One year ago today, my sweet baby had her first cranial surgery. The first of many necessary, terrifying surgeries to come. Surgeries that will keep her alive, keep her functioning at her best level of health, and keep her appearance as close to “typical” as possible.
I have had a difficult time expressing my thoughts as of late. Words aren’t coming that could suffice to explain what this life has become. It is not just today, one year post-op, that I sit and remember the weightlessness in my arms as a stranger carried my precious Poppy off to surgery. Not just today that I feel the hollow left within when I walked away from those double doors – knowing I had no choice. It is not only now that I see each and every stitch placed to close up something, someone, that wasn’t meant to be opened.
Since her surgery, a certain sadness has moved in next to unimaginable fear – and I am full.
So full that, though there are VERY important things for me to initiate and follow-through with, I find myself feeling too stunned to move. I need to make progress and be proactive and schedule appointments and therapies and fundraisers and find a source of dependable income – but instead, I run around in circles, AWAY from the reality of it all.
Because I want time to slow down. I want to enjoy every single minute with my beautiful children. I don’t want to spend my days worrying about how I’m going to pay the bills, or find the right surgeon. I want to lay out on a blanket in the sunshine, just me and my babes, and be.
There are many appointments in the near future. A sleep study, a second opinion from a different cardiologist, an ENT evaluation, a check-in with neurosurgery, a meeting with the geneticist, and so on and so forth until always…
Poppy grins through it all. She makes me laugh. She discovers new skills and means of communication daily. She went from a few wobbly steps – to walking all over in a matter of days. She truly takes it all in stride.
My emotions have been erratic the last few months. Amidst some illness and more than one tragedy – my heart has taken a proper squashing. I feel cornered by Apert Syndrome. Bullied by my child’s needs. And ultimately, I feel alone. The support I have is tremendous. I am ever-grateful for those around me who lend a hand when times are visibly tough – but times are invisibly tough, too. Sometimes the last thing I need is for someone to hold my baby – and other times I pray for five minutes alone to take a hot shower.
I want more than anything to be able to take my children away for a week. Just us. A little summer vacation somewhere sweet. Creeks and rivers and ocean and hills and rocks and snakes and bugs and campfires – but it’s too far from the hospital. Still too risky, for this mama.
Her hand surgeries are on hold for now until I hear what cardiology says about her heart and anesthesia (and, I suppose, until I raise the remaining mountain of cash to pay for it). Fingers can wait. She does everything just as well as if she had 5 fingers, in my opinion.
Dr. Fearon (in Texas) said that she would need another cranial surgery by 3. That in mind, its nearing time to schedule another Texas trip. After the summer we will be back to routine, but for now, while the sun is shining and the days are long and full of light, we celebrate what we have survived.
The unthinkable, that’s what. And here we still are, (mostly) intact.