The Cerebral Palsy Network

This page is exciting for me because it is about my Special Angel Amanda!

Amanda is 19 years old. She was born with what was described to me as immature muscles. She has always been a bright fun loving lil' Princess. When she was very little my mom nicknamed her " Amanda Janey Cake's miss baby pitch fit". Of course the Amanda Jane stuck. She was milk intolerant so needless to say there were many sleepless nights. We really started to notice that something wasn't quite right around 6 months. We had finally convinced her Pediatrician, there may be a concern. He scheduled an appointment at Loma Linda, then they had to cancel and we were getting ready to relocate to a different state. When we arrived in Grand Junction, Colorado, we scheduled another appointment with a new Pediatrician, Dr. John Pelner. He took one look at her and looked at me and said : "I think she has Cerebral Palsy". Wow! To this day I have the utmost respect for him, he wasn't afraid and he had the consideration to be honest with me. I want to thank him where ever he is no, for being and inspiration in Amanda's and my life. We proceeded to our next steps. All those tests. The hardest one for me was the chromosome testing. I couldn't stand watching them stick that LONGGGG needle in her. To make the beginning history short. The results showed that Amanda had Schizencephaly. This how ever wasn't what they told me I did not find out actually that she had Schizencephaly till she was 14 yrs old thanks to the worlds greatest Dr. alive. Dr. John McLaughlin who requested a copy of her testing. The diagnosis we received was Microcephaly and Moderately severe spastic Quadriplegia Cerebral Palsy. They also called her a "floppy baby" and that one side was worse than the other. My only thoughts then and now were making her life the best that it could be and doing all I could to make that happen. I loved her before her disability and I love her more regardless of her disability. Why? Because she isn't her disability. Amanda is witty, funny, adventurous, loving, tender, intelligent, beautiful, very social and a very very sweet spirited child. She expresses her mind in whatever way she can and doesn't stop until you get it. One of the things that they told us when she was diagnosed was that the intelligence part of her brain was intact and functioning, they of course wouldn't give a prognosis of how much she would know or if mental retardation was a factor. I didn't care and still don't. I as a fellow human being do not feel that it is my right to decide. Especially when they say a special needs child can't and that child will usually try and do exactly what they have said that child couldn't do. I believe that our children grow as much as they do because of our determination for them and because history is showing that individuals with a disability can lead very productive lives. We have had our ups and downs, but this is a statement that many people have misunderstood. Those ups and downs were never Amanda. When you look into those eyes and see that someone whom is full of life and total understanding, it is frustrating when someone else doesn't take the time to notice it too.

Today Amanda attends High School. She has many friends that she likes going to the mall with. She loves being a young lady right down to the perfume, fashions, nail polish and BOYS. Her favorite color is purple. Her hobbies are computers, going for walks, collecting porcelain dolls, trolls, angels and Teddy Bears. Her favorite perfume is Tea Rose. She loves music, ALL kinds, she doesn't care. Especially Grammies classical. She loves making people laugh and with her contagious laughter it doesn't take long to have a whole room laughing. She loves children, the babies really make her happy. She has watched her 4 siblings as they grow up and I have always thought of them as the babies she may never have. I think that they too, have a very special relationship with her. They get really upset when someone babies Amanda. They comment "She doesn't like being babied". No matter where she goes she brightens someone's life. I don't think that they ever get her out of their mind, she has such a powerful effect every one especially on this mom. She refuses to let me be discouraged. When I am sad she starts that laughing until I am laughing right beside her. If that isn't intelligence and wisdom then I don't know what it is except love.

* An Update*

In the past several years since I wrote this story Amanda's life has gone forward in many wondrous ways. Amanda now has a Baclofin pump which helps her tremendously. She just recently got her new chair which has helped greatly. She has done swim therapy as well. So many wonderful things are happening in the disability world today, that gives us great happiness but it is only the beginning. Amanda just had a spinal fusion done in Nov 2001. We have gotten to the point in her life where we no longer have a choice. I have one word of advice to any parent dealing with Scoliosis and CP. If your gonna do the spinal fusion do it early when the curve isn't as bad as Amanda's is now. Though she did really well with her spinal fusion they were only to get a 60 degree correction.

You too can make a considerable difference When you see someone who is "different" than you please don't stare or turn away. Take the time to say "I don't know about what you go through or about your "disAbility" can you tell me a little bit? Be true about it. If your in a professional position take the time to know your clients or patients (and their parents). Put yourself in their shoes, if it was your child wouldn't you do everything you could, wouldn't you hurt if someone considered you an "unreliable reporter"?? The facts are showing that Parents are a valuable voice in the care of our children. We don't get paid for it but we still deserve the credit due. We do it out of love can you say the same?

Amanda has helped through her love and determination to help make this site what it is today as have the hundreds of parents and children, and individuals with CP that are now a part of the Cerebral Palsy Network. This dream has become an International Vision and together we will see a change in the way the Disabilities world is perceived and treated.

This story is about Amanda, the inspiration in my personal life, whom helped breathe the existence of life into " the Cerebral Palsy Network. In the following months we will continue to have features on all the friends of Amanda's here at CPN. Your special angel deserves to have his/her voice heard too. We also look forward to hearing from our Capable individuals with CP to tell their stories too.

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Please visit this wonderful artist you will be truly delighted!

This page was last updated 12/19/01