If you’ve had the chance to look around on the sire, then you have probably already read about my disability. I’m here to speak about it again:
This past Saturday, on May 6, 2017 I had the opportunity to go back where it all started, Shriners Hospital for Children. A therapist that has worked with me since I was a tiny baby, asked myself and two other girls I met back in ’09 (Shoutout to Izzy and Dawn ❤) to speak on this panel. The panel was for an event they were having called, “Living With and Learning About Arthrogryposis.” The stars of the event were kids with Arthrogryposis Multiplex Congenita also known as AMC. The plot twist of it was that a lot of their parents had never met another kid with AMC before. Let alone young adults and that’s where we came in. The topic of the panel was, “Teenage Transitions-Driving, “Adulting” what’s next?” During the panel, and throughout the day parents asked us questions about us getting to where we are today. Some of the questions were based on special accommodations in school we may have had, being bullied, boys, driving, and more.
There’s over 300 diagnoses of AMC and I’m very blessed because mine isn’t one of the severe ones. Looking at those kids, made me think about myself at that age. In my mind, I just kept thanking God, my family, friends, Shriners and all the other support I’ve had to get me this far. I can only imagine what my grandparents were going through at the time. I know they are just as relived at the progress I’ve made over the years. Let me tell you, some of those kids had the coolest wheelchairs and leg braces I’ve ever seen. I’m sure none of that existed when I was born, which probably made things a little more overwhelming.
Overall, it was just a humbling feeling. Everyone that’s everyone should have had the opportunity to be there. It would remind you not to take the things that you’re able to do for granted. It even reminded me of that. All those kids inspired and motivated me. Ever since I’ve left, the wheels in my head has been spinning non-stop.
One thing I do want to say, on behalf of all the kids out there with AMC. You’ll have good days and you’ll have bad days. Don’t let it define you, it’s not who you are. AMC is a blessing in a disguise and it won’t be until you get older that you really see that. It’ll be hard, but don’t let anyone limit you to what you can do. Just like all the regular non-AMC people out there, sky is the limit. The world is yours too.
For the parents, keep holding on. Days won’t always be easy for you either, but you can’t give up. Your child will be someone amazing one day and you quickly realize that all the tears, surgeries, therapies, etc were worth it.
#stillRising 