Frontline Initiative Supporting Families

When I was young, I remember dreaming about what I would wish for if I found the magic lamp. If offered the proverbial three wishes, I would often dream about what I would wish to have, what I would wish to do, and where I would wish to go. But what I would have wished for when I was eight, is not what I would have wished for on the day that my daughter, Kristina, was born with cerebral palsy and “significant” cognitive delays. Today, I am thankful that I did not have access to the magic lamp on that evening eleven years ago, because, what I would wish for now is not what I would have wished for then. After learning a great deal from my daughter and the rest of my family over the last decade, today…

1. I wish that Kristina will be treated as an individual — not pigeon holed as the end result of batteries of tests taken over the length of her life. I wish for her doctors, therapists, teachers, social workers, and aides to see that she is more than numbers on a graph or points on a line — that her tests measure what she may do, not what she will do. I wish that they would see the person that she is — so different from the dozens that they see every day, or the thousands they see every year. I wish that they would see the freckle faced, bony kneed, giggling little girl with all opportunities ahead of her, not patient/client #xxxxxxx with all her limitations bound to her like shackles.
2. I wish that Kristina will have the tools she will need to live her life to the fullest. I wish that she will have an adequate education to prepare her for her life ahead, that she will have the equipment — computers, walkers, wheelchairs and braces — that she needs to function, and that she will have the community — friends, teachers, therapists, and aides — she will need to grow and develop to her greatest potential.
3. Lastly, I wish that Kristina will be cared for as long as she lives — by parents while we are alive, and by a loving circle of friends when we are gone. I wish that she will be prepared to live in the community — wherever that might be, and able to make a contribution to society in a meaningful way to her. I wish that she will be prepared financially and emotionally to live her life fully, not to be dependent on her brother and sister, but able to have what she needs without worry to anyone for as long as she lives.

Some may question why I would not wish to change Kristina into a “normal” child. My other wishes would be unnecessary if I made that one wish. To those I would answer that I have grown to know that Kristina is normal. There is no other Kristina and could never have been. She was born just the way she was intended to be. No amount of wishing can ever change that, even if I wanted to. I cherish who she is now and what she will become, just as any proud parent would.

Reprinted with permission from www.fathersnetwork.org