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I was so thrilled to find this site. I have a ten-year-old who has CP. I had a difficult pregnancy and traumatic birth experience with him. Since he was our first, we celebrated every milestone and didn't realize how late each one came until a friend gave birth 9 months after I did and her son was walking before ours was even trying.

We're grateful Jamie's condition isn't severe, but it's heartbreaking nonetheless and I'm not handling the situation evry well these days. We have yournger children who are now more physically able than Jamie and it angers him to see his lacking abilities. He is hypotonic ("floppy"), so he can't walk or run effectively and his torso muscles are so weak he has trouble even sitting up some days. He's incredibly brilliant, but each movement he makes he thinks through and that doesn't leave a lot of brain space for homework, so his grades are suffering. He gets help at school, but we feel we're just trying to get him through each day rather than equipping him with skills to live beyond that day.

Today I'm so sad because I'm hearing about how the kids at school are now noticing his differences. Up until the last few months the kids have enjoyed Jamie's friendliness and kind manner. Now, however, he is teased, he can't keep up in gym, other's view his weak muscles as ADHD (he has to be constantly moving to keep himself from collapsing), and he has few friends. My heart is breaking for him as I see his lonliness and pain. As a mom I can hardly take it.

I have good friends I can talk to but, ten years into this, it's not a topic most want to listen about anymore and I understand that. I know he won't get better since there's not a cure, so I don't have exciting breakthroughs to report; it's just an ongoing monologue. Each stage of life brings new victories and new heartaches that I've just started to keep to myself. Tonight, though, I cry and cry and wonder what will become of my child.

Any suggestions? Have any of you experienced this? I don't even really need answers, I just need parents who are familliar with this emotional ride and can relate with this. Thanks for listening! :0)

Elle M.

My son is only two years old had has most of his body affected by cp he suffers from extreme spasicity in all for limbs ,but has a fantastic mind. Hayden often becomes fustrated with his physical limiations as he seems to be like any two year old in mind but his body is about 4 months old. He can not sit indepently yet and really only has control over his right hand. Despite all these problems Hayden is a boy to be admired he has battled to get here when given only a 1 in 10 chance of survial when his twin passed away in the womb at 28 weeks. since birth he has battled many chest infection each one almost claiming his short but amazing life and yet he still manages to smile and laugh much more than any other child I have met.
I read your post and my heart went out to you as although our son is young we two have come up against the harsh world who does not understand our beautiful children. Many times we have experienced cruel words from others in the street and as for friends all but a small few of rock friends jumped ship when we had our son to scared to stay and be part of his wonderful life. Please stay strong you are blessed with the chance to entre world of children like ours most people will never know there children as well as we will.


sam