|Photo by Brandon and Joy|
See, I have been going through my calendar for the upcoming weeks and man - is that sucker full. Just this week we have a cardiology appointment for Quinn in GR, and play practice, and then they both get braces in Traverse City, and conferences for the elementary school kids, and then a performance, and webinars, and half days, and Quinn thinks he might have a choir concert on Wednesday, and both kids need haircuts and...
Then I took a look at the calendar a bit closer and I realized... it was a year ago this week, on a dark, rainy, windy night much like this one, that I received a phone call from one very animated neurologist. See, Dr. DeRoos had never seen Moyamoya much outside of a text book and he couldn’t quite contain his excitement. And since I didn’t react with questions like, “What the HELL is Moyamoya disease?” but instead asked, calmly, how quickly could we get Claire into surgery - he thought I was handling the news better than I was. I sometimes wonder if he thought I was a medical professional of some kind, not knowing that I had researched the word “Moyamoya” when he mumbled it, quite under his breath, at our appointment the month before.
It wasn’t until the end of the conversation when I asked what Claire’s prognosis was and my voice cracked that he seemed to realize that he’d just delivered some pretty devastating news to a mother. I don’t blame Dr. DeRoos - he’s a wonderful physician and he’s taken fabulous care of Claire. It’s just, as his nurse practitioner told us, you don’t want to be the patient that gets the neurologist excited - it usually means they’ve found something really weird.
One year ago, on November 12th, our world changed forever. One year ago this week, I heard the words, “Claire has Moyamoya.” It seems like forever ago. It seems like yesterday. It seems like I still hear those words in an echo in my head.
In that year I have seen the true spirit of my daughter and she is a warrior. I don’t just call her that to be cute and supportive - that chick is one badass fighter. She’s tougher than anyone I know. She has been through more than most adults, let alone children, and she still has a smile for everyone.
In this year we have been through surgery, and recovery, and strokes, and ambulance rides, and tests and tests and tests and even today it feels like that is never going to end. But Claire still smiles. And she still fights. And she just... carries on.
At therapy yesterday, I was called in to speak with her and the therapist - which is unusual. Typically, I go in and let the therapist know what’s been going on - if there’s anything new she should know about. Then Quinn and Claire decide who gets to go in first. Yesterday, the therapist came out and got me after talking with Claire. So, off I go into the room to find out what’s up. And Claire had wanted to tell me that, going forward, she would prefer not to be in the room when the doctor’s start discussing things like “options” and “prognosis” and “failure rates”. She prefers that I handle those pesky details and she remain in blissful ignorance. I don’t blame her a bit. I wouldn’t want the shit scared out of me if I could avoid it either.
In one year we have dealt with emotional ups and downs, and friends who have disappeared because we’re just not as much fun as we used to be, and strangers who have come up to us in the grocery store to tell us they are praying for us, and daunting poverty, and surprise fundraisers, and the ridiculous antics of one abominable behemoth who just doesn’t get that Claire doesn’t have something called “Meow Meow” but that she has an incurable brain disease that’s terrifying.
In one year I have been angrier than I ever thought possible.
In one year I have been happier than I ever thought possible.
In one year I have been shown so much love and support by the people who matter that the people who don’t are slowly becoming more and more insignificant with each passing day.
In one year I have fallen in love with my daughter, more than I ever thought possible.
In one year I have seen the man my son will be, and am prouder than words can say.
I don’t know what the next 365 days will bring. I know we have more tests with more acronyms and more consultations and more drives back and forth to a hospital that I both love and loathe. I know that we have the possibility of another surgery looming over us. I know that Claire will keep on smiling. And Quinn will keep on making ridiculous jokes. And we will keep on living until we don’t - and we don’t know when that will be.
In one year I have realized that I don’t know if Claire is going to live to be 13 or 103 because life doesn’t come with a guarantee and we are going to take the days as they come and enjoy them. Or not. Because some days you just can’t. But we will try to get up the next day with the same warrior spirit and fight on because after all...
We’ve already made it one whole year.