A few nights ago Mason came out of his room, after I tucked him into bed. He wanted to talk, just us in the quiet, after everyone else had gone to bed. This doesn’t happen often, because he’s a kid of very few words, especially words that aren’t related to Minecraft or Roblox! I relished in the fact that he wanted to chat. We sat together and talked about all sorts of things. He told me all about his dreams for his life, and the jobs he wanted to have. We talked in detail about the house he wanted to have, and the amount of children he hoped him and his spouse would have one day. I loved hearing his little mind work, all the things he thinks about. He also reassured me that he “would never put us in a senior center, he would take care of us!” I had no idea he even knew anything about those parts of life!
Then he said “Mom, its ok that I have Ehlers Danlos Syndrome, it makes me special, and I like that!” I squeezed him so tight, and told him how special we all truly think he is. Then he said ” Mom, will I get worse..?” I wasn’t sure what to say, other than I just don’t know. “Mom I just remember when I used to be able to run really fast, so fast that it was hard to see me. Now I can only run at a slow jog. I was just wondering if one day I won’t be able to run at all?”
I sat their in shock. My heart was hurting. I told him I wasn’t sure, that I hope he can always find a way to do the things he loves, and wants to do. That we loved him, whether he could run super fast or not. “mom, its ok if I can’t run, at least I got to run fast when I was little.”
To have that kind of outlook, to be that thankful for the things he has done, and has been able to do. He is just thankful to be able to still do the things he loves, whether it’s quickly or not.
That’s the thing about Ehlers Danlos Syndrome, there aren’t any answers. There are so many questions, so many unknowns. You have to constantly guess, worry, and hope that you are making the right choices. In the mind of Mason, it seems so simple. He’s special, and even if he can’t do the things he once did, he at least got to do them before.
Some days, I feel like I’m so heartbroken, and wish I could change everything for him. Now though, Im trying to remind myself of the things he can do, the things he has gotten to do, even if he can’t continue to do them. He’s a wonderful, smart, kind and caring kid. He has the most gentle little soul. He isn’t Ehlers Danlos, he’s special because he has Ehlers Danlos.