Sunday, July 02, 2006
And then there are the other times. They are rare, but they do happen.
The times when, just for a moment, I can see her as the world does.
It breaks my heart.
I struggle with the acceptance process during these times. You would think that the diagnosis of a disability would be shattering and then get better or easier over time. The reality of living with that diagnosis for the rest of your life, day in and day out, is often like riding a faulty elevator. Things seem to be easier for months at a time, but in reality you have simply grown used to what ever it was that caused the initial shock. You develop emotional calluses that protect you from that particular pain. And then the elevator shudders to a stop and suddenly begins to plummet towards the bottom floor again. You gasp for air as your stomach suddenly jumps into your throat making it impossible for your scream of terror to squeak past your lips. You cling to anything familiar praying for time to freeze before you crash to the bottom yet again.
Samantha is having such increased drop seizures that she is in danger of breaking bones in her face or head. I KNOW that she needs a helmet to protect her, but this is a callus I have not developed yet.
I knew for six months before she got her first wheelchair that she actually NEEDED one, but even that took an adjustment period.
It isn’t that an extra accessory or two changes who she is or how I see and love her. But I know that the more equipment she needs will change how others see her. I don’t know why ignorant people bother me so much after six and a half years of dealing with them on an almost daily basis, but they do. I want so badly for people to see her through my eyes instead of seeing “that kid in the wheelchair and helmet that doesn’t talk”. It is hard for most people to look past those THINGS and see my daughter for WHO she is. They see the equipment and the diagnosis while totally missing the phenomenal little girl they are attached to.
And I hate them for that.
My daughter is a fighter. She has survived TWELVE operations in SIX years. She has fought through more seizures daily than most people even OBSERVE in a lifetime. Her smile can light up a whole room and take your breath away at the same time. She has the ability to look into your eyes and see straight into your soul. She makes you notice the little joys in life all around you. She is a miracle.
I only wish I could make the world know that like I do.