So I’m sitting here finishing up the telethon, and I have a lot going on in my head. This has been really hard to watch, but also, it has been encouraging and amazing. There are many stories of kids with SMA, which is a disease that can instantly bring me to tears. We don’t yet know what Harry has; it’s not likely Duchenne’s or SMA, but they aren’t ruled out yet and that scares the hell out of me.
I feel so much for the parents speaking on this show. In their clips they show the spectrum of emotions that we go through almost daily. First, they’re proud of their child and beam when describing their child and what they’re good at, what their hopes and dreams are, etc. Then, they’re sad. They’re sad for the children and what they’ve lost and will lose. They’re sad for themselves and their family. They’re just sad. Finally, they thank everyone for donating and helping fund the cure. I felt like I was standing in each of their shoes.
We need a cure. We need TREATMENT.
We, the parents, have to deal with this horrible realization that there is almost nothing that can be done for our children. Often we are forced to watch them deteriorate. I feel like it’s my duty to donate, raise funds, and raise awareness to help every bit of research there is out there.
Sorry I’m feeling sad and sappy, but the telethon broke me tonight! In other news, Harry man is continuing to walk a little with encouragement. We have to hold on to those victories!
Thanks to everyone who listened to my pleas and watched the telethon, and thank you so much to those of you who donated. It means the world to me. You may never know how much this support helps.