It's hard to describe what it's like to be a parent to a kiddo with SMA.
In short, it's scary. But it's also kind of amazing.
I've found myself slowly coming down from my heightened state of fear and grief and anger. I know those feelings will never fully go away. I know that deep down those feelings will always be there. Some days they'll be more noticeable than others.
But I'm learning to find the joy in our new life. We celebrate everything. And Cooper is improving every single day. SMA has made us more grateful for the life we have. We realize now just how fragile life really is and we're determined to make each day count.
Do I still spend every day worrying about what our future looks like? Yep. Do I worry each day about Cooper getting sick and ending up in the hospital? Sure do. Do I worry about what happens when we start needing more and more equipment to make his life easier and give him as much independence as possible? You bet. But I'm learning not to dwell on those things. Most of the time it's a fleeting thought and then I force myself to focus on something positive. Like how much straighter he's able to sit and how his legs are getting stronger and stronger. And how ridiculously smart he is.
But every now and then, something happens or a thought crosses my mind that hits me like a wave and sends me underwater, struggling to come up for air.
The other night, the kids and I ran in to Walmart to grab a Thank You card for Dr. Goldstein. He's the pulmonologist who told us he was almost positive Coop had SMA. He's the one who saved our son. We were seeing him in person this week for the first time since that day in March when he validated my concerns and got us in touch with genetics. I wanted to make sure he knew just how thankful our family is for him and how much he means to us.
So as I'm looking for a card, Maisey asks me why it's taking so long and what I'm even looking for. (Fun fact: Finding a card to say thank you to someone who has had such an important impact on your family's lives is not as easy as it sounds.) So I explained to Maisey that we were going to be seeing Coopy's pulmonologist and I wanted to give him a card. She asked who he was and I replied with, "He's the one who first told us he was pretty sure Coop had SMA." And out of nowhere, my sweet, talkative, way too smart two year old says, "I have S-M-A."
It felt like the wind was knocked out of me. I couldn't breathe. I couldn't speak. I just stood there in the card aisle, looking at him, tears streaming down my face. It was almost as if, even after seven months, him saying that little phrase made everything real. Like he jolted me out of this alternate reality I had been living in. One in which I hoped one day I would just wake up from and have a typical two year old boy.
He has SMA and he knows it.
Something about him acknowledging it and acknowledging that he's different sent me into an emotional spiral that I physically had to bring myself out of. I couldn't meltdown in Walmart. I couldn't meltdown in front of the kids. I couldn't meltdown in front of him right after he said that. I never want him to look at having SMA as a bad thing. I want him to embrace his differences and work hard to achieve every single goal in life despite his medical diagnosis. I'll spend my life hating this stupid disease. But he shouldn't.
So yeah, I'm working at focusing on the positive and enjoying each moment. But sometimes all it takes is three little words to bring everything crashing down again.
"I have SMA."
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