melissa061105's Blog

Cerebral Palsy

 created on: 10/28/08

This is my beautiful daughter Brooklyn. She is three years old and was diagnosed with Cerebral Palsy. As a mother of a child with a disability, I know in my heart that I would do ANYTHING, yes ANYTHING to help improve her condition. Our journey to get her where she is today, walking in this picture, was long. I fought for answers to my questions, and no one could answer them. As a baby she cried and cried, and I was only 18 years old when she was born, so her pediatrician didnt believe me that her crying was so bad. She replied to me " thats what babies do, they cry". I was so frustrated that she was a doctor and was supposed to give me answers, and she didnt. Month after month I kept telling her doctor, something is wrong, I know something is wrong because she isnt even rolling over (not to mention the crying continued). The doctors words were harsh, "She will do it when she is ready, all babies do these things when they are ready". I finally switched doctors when Brooklyn was a year and a half. They sent us to a specialist. Lots of tests were ran. She had blood draws, an MRI, and therapy evaluations. But the only thing they discovered was part of her brain was damaged. So she got a diagnosis of CP. And that was it. No answers again. Not why it happened, not when it happened, not anything. Just because they ruled out everything else, they diagnosed her with CP. It was like a "last resort" to me. Brooklyn was receiving therapy, and we had to switch therapists too. Her first one just wanted to dress her and change her diaper. Finally the new therapist was helping. In the midst of all this I had another child, another girl, Kassidee. Kassidee is 19months younger than Brooklyn. As Kassidee started to accomplish all of her milestones on time, Brooklyn wanted to follow. Her ambition was CRAZY. Anything Kassidee did, Brooklyn tried. I believe Brooklyn is better today not only becuase of her therapists, but because of her sister. Brooklyn's journey isnt over. I have tried to get her disability money. Once they determined that she is disabled they took our income into consideration. And then we hit another BRICK WALL. Now over government wont give my daughter money to help with her care because her dad makes too much money. ARE YOU KIDDING ME???? He only makes $15 an hour. And we are a family of five, yes we had another child. And we own our house and we pay our bills and we dont make a lot of money. But they dont factor your bills in. Crazy to me. Im so frustrated. How could the government say sorry you make to much money, when my daughter is DISABLED regardless of how much money her dad makes. She still has doctor bills and medicines, and no we receive NO help from the government.  I dont think our journey will ever come to an end. Brooklyn is doing so much better now. She walks with her walker and attends special needs preschool. Again Im frustrated because the school system will only provide her with 20 minutes of therapy a WEEK, ugh. Some people would want to give up, but I cant. Not for Brooklyn. She deserves THE BEST care she can get. And you dont have any idea how many people have told me, "but she looks so normal". Well she isnt and dont say that she doesnt know what it is like to be anything but what she is because SHE DOES. She watches her sisters grow everyday and her struggle continues everyday, she knows that she cant do the things that her sisters do. But she is very ambitous, and I  know she will contnue to do better! I love her so much and I wouldnt have her any other way!!!

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japertilla

  I would not have it any other way either

carrie022

I had no idea that my post would cause this,  what can I say but sorry. I never meant to upset so many people with this post, it's just that growing up as a CP child I know what it's like to see kids my age doing things that I so wanted to do but my CP would not allow it or my development was slow and I couldn't learn it faster and it did make me so flustered and I tried even harder just so I could be like my friends and I did it. I graduated from a regular school with my friends, and I learned to tie my shoes and ride a bike and roller skate. Doctors' and others' told my family I would never do anything because of my CP but we (my family and I ) were determined to prove all wrong. And it seems as if your daughter is so determined to prove all wrong as well,good for her.

My comment about not knowing any other way was meant as to say that we were born with disabilities we don't know what is is like to be without them and then to suddenly be unable not to do the things that we did before without the struggles. I guess my point was lost some somewhere in the translation and I am so sorry for all those I offened. I know your daughter will also continue to defy those who say can't, won't or never. I hope everyone whom I upset will not forgive me presay but understand that sometimes my points in what I post may get lost but I mean no harm or mean no offense.

  Your daughter is very pretty and I'm sure will to grow stronger and better each day.

                                        Carrie

DeborahK

Hi Melissa, my name is Debbie, I have two grown daughters Terra who is almost 33 and Erica who is 26. My daughter Terra has cerebral palsy, microcepalic (small head). I had Terra when I was 20, I had to learn to be an advocate for my daughter.

I don't know what state you live in but here in California we have Regional Centers that are seat up to help families that have children with disabilities. When Terra was little I also took her to United Cerebral Palsy. I don't remember if I paid for the services or not. Just a few ideas.

You are doing a great job with your daughter.

Debbie

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