Its Not in My Chart or my Declaration of Independence

The following document is something that I got from a great friend. He gave the bare bones and I filled it in with information that I think is important. The information below is intensely personal and real. It was written over the course of 2.5 years and contains a lot of information that is not public knowledge; until now. Comments are always appreciated but please be gentle with my life. Please feel free to take components of this and make it your own. Parents reading this, consider creating something smaller and similar for your child. It can be as simple as your child's likes and dislikes. Whatever you think physicians, nurses, respiratory therapists, other therapists, etc need to know that isn't in a medical chart.
 

I want you to know...

To all the SMA kids growing up now, here are some things that I want you to know. I want to tell you some things that have helped me to live a great life despite SMA. I’m going to give you some bullet points that I hope help you live the extraordinary life I know is waiting for you.

• Don’t let your SMA define you. It will impact your daily life, yes, but don’t let it be all you are. You are smart, beautiful, talented, and sassy already at age two. I know that you have so much more inside of you that is just yearning to get out. Yes, you HAVE Spinal Muscular Atrophy but you don’t have to BE Spinal Muscular Atrophy.
• Your abilities are far greater than your disabilities. You can do so much more than you cannot do. Sometimes it may seem like your limitations are greater but I know that the challenges you have and will face will make you a stronger person. You will get frustrated by your uniqueness from time to time but remember that we are all talented in different areas. You may not be able to walk but I know that you are so smart. You can teach the world so much. With a bit of imagination and some help from your family and friends, you can master just about any activity. Embrace your differences, for they are what will keep you going!
• Never give up! Your mother and father have given you a fantastic starting point by loving you unconditionally and giving you the best chance to succeed in life, both physically and emotionally. But you know that a lot of this is up to you and your tenacity. You have so many choices to make now and in the future. You can decide, every day, whether or not to be limited by what you can’t do. If you can, be excited by the potential of each and every day. You have so much to show people, don’t give up!

Thank you for letting me be a small part of your life. I can’t wait to see all the things you have to teach us.