Yesterday was the Pittsburgh Marathon/Half Marathon, which my mom has been running for 10 years now (you can read last year’s post here)! Even though it was rainy, the city really comes out and shows up on race day, and it’s really fun to see.

For the last 5 years or so, she and some of my friends/family have created a charity team for Cure SMA for the race. It’s been so great to be able to have a team running to raise money for the organization that funds the seed grants for so many SMA treatments that are making their way through the approval process.

The thing about my mom running the half marathon, though, is that it means she’s not around to help my sister and I get ready in the morning. And when we can’t get an attendant to come help, it means it’s all up to my dad. My dad definitely does help my sister and I, but he’s not used to having to do everything that we need help with, plus get himself ready, and get out of the door on time. And when you have SMA, you can’t exactly just rush and make it work and make it out on time no matter what. Things take the amount of time that they take – and they may take longer than they did last year, or the year before that.

All of this is to say that this year, we didn’t make it to the race until AFTER my mom and friend had crossed the finish line. It was certainly not for a lack of trying – we woke up VERY early – but it was just the reality of it. It’s frustrating for sure, and even more frustrating when you wish you could come up with one thing to pin the lateness on… but there really isn’t any one thing. It’s every single thing taking just a little too long, and each of those few extra minutes just adds up more quickly than you’d think. And I think this is one of the most frustrating parts of SMA. I’m used to using a wheelchair, that’s not something that I even really think about on a day-to-day basis – I’ve never known anything different. But the way that simple, everyday tasks get time-consuming so quickly – that gets annoying. It’s also the part that’s the hardest to explain. Not making it to dinner because the restaurant has a step makes sense. Being late because things just took longer than you wanted them to is something that is harder to understand until you experience it yourself.

So, we didn’t make it to cheer them on in the crowd, but we still did make it to meet up with them afterwards and congratulate them. It’s not what we hoped for, but it’s what we were able to make happen, and that’s okay.