When the words, “Chiari Malformation and Syringomyelia” came out of the neurologists mouth I couldn't believe my ears. I had him repeat it several times, and then I had him write it down. Now it runs of my tongue with ease. Whenever I tell someone that Hailey has this they have the same reaction I did. It’s funny how that happens. I like to compare it to my three year old. When I hear him speak I understand everything he says. It’s very clear to me. Why? I am around it every day, and have learned to recognize his dialect. I often become frustrated when other people don’t understand him. It is wrong of me to expect them to recognize what he is saying. His speech is unclear and many of them are hearing it for the first time. That’s how it is when we begin talking about our children’s medical conditions.
It is important that we as parents be able to give a simple and clear explanation of what we are talking about. The best way to do that is to educate ourselves. Though often hard to find when first looking, there are many wonderful web sites to aid in our gaining knowledge of both of these medical conditions. At the bottom of this post you will find a few links that I have found useful in gaining knowledge.
If you or your child or family member has just been diagnosed you may find it helpful to order this free information packet from the ASAP. I just received my packet and found it very helpful. You can request your packet from HERE. It is easy to get overwhelmed as you learn more. Make sure that you get involved with a support group. It is so comforting to hear from people that are dealing with CM & SM on a daily basis. There are a few great groups on Yahoo Groups. I personally enjoy the pediatrics forum on the ASAP site.
Web sites I find helpful
*The American Syringomyelia & Chiari Alliance Project, Inc. (ASAP)
*The Chiari Institute
*Chiari Connection International (CCI)
*Chiari One
*National Institute of Neurological Disorders and Stroke
*Mason's Mission
1 comment:
My daughter (also named Haylei) was born with a mild Chiari also. It is hard to know exactly how it will affect her as she gets older. Currently she exhibits no signs, but has occasional headaches. She's 5.
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