I decided to write a letter to my parents. These are the words I would tell them if I could have as they watched me over 20  years ago in the hospital incubator, unable to hold me and terrified of what will happen.

It's not your fault. It's not my fault. It's not anyone's fault, but can I just say this anyway? I'm sorry. I'm sorry for all those hours of worrying, crying, and having the weight of your tiniest child's unknown future constantly on your shoulders. I cannot begin to imagine what it will be like to try and provide everything for me and then watch me get hurt unexpectedly, inevitably, and knowingly - hundreds of times over. What will it be like to take eight steps forwards with me and then watch me get forced into taking ten steps back? I think about that a lot as an adult and sometimes I wonder if I could ever be as strong as you guys and raise another human being in that similar process.

But what I am about to say is probably the most important thing for you to know: You will get through it and I will be fine. 


My body has many deformities and limitations but I wish I could have been aware when you guys realized my brain is "normal." Was it like someone had thrown you a life jacket in the middle of a raging and darkening storm? Such hope! You will raise me to appreciate hope and to pummel every crumb of its existence out of every situation. Thank you for that. And thank you for pushing me in school, not just pushing me but demanding that nothing other than perfect would be acceptable. This would drive me insane in high school, I will push you away, be confused, even be angry with you but I will come to understand why you did it. Education and the advancement in medicine are the two sustaining aspects of my life that I know I will always be able to count on. Those gifts are priceless and literally life changing.

I will learn how to play the piano, walk, swim, jump, read, write, dream, and have empathy. Then I will learn how to help others, listen, respect, admire, envy, comprehend, and problem solve. I'll always learn how to communicate, work together, be patient, love, build stamina, rehab, heal, think critically, and be innovative. These and so much more will be the bones of my life, the skeletal system to my future - the scaffolding that is more iron tight, forever unbreakable and the stuff that my faulty collagen will never be able to affect. Thank you for all of that.

Me, being observant and critically watchful as usual.

The sometimes clumsy dance you would do between caring for me and giving attention to my "normal" brothers is how I understand what it is to be human. No one is perfect and we can only try with our best and most genuine intentions at heart. Don't ever think that I don't know you are trying your damnedest to help each of us discover what we are capable of, pushing us - sometimes to the point of failure - but then always forcing us on-wards. There was always such little time to feel sorry, to take pity, or to stop and dwell in our faults.

Today I am not so great at accepting my limitations and realizing when I need help, but I am learning slowly. I don't regret the decisions you have made for me, medically related or otherwise - I trust that you know what's best, and at times now I will hear your voice in my head when I need to make a decision on my own. I am fortunate and forever thankful to be able to embody all of the successes you have armed me with, able to keep in mind the lessons from failures, and now I do not shy away from taking a stab and discovering more of the potential that you first instilled in me so many days and tireless nights ago.

With love & utmost appreciation,
Sandy