It happens every year. Attending an ASAP Chiari & Syringomyelia Conference renews the spirit and breathes new hope into what seems like hopeless situations. This year was no exception.
My daughter just celebrated her sweet sixteenth birthday. All she wanted was to attend the conference- her one chance to see and talk with other kids who face the same challenges she does. So I packed her up and brought her to Austin, TX. No small feat since she is home bound at this point. For the past several months she has spent day after day lying in bed, unable to sit up for more than an hour at a time before the pain gets unbearable.
She wasn’t able to participate in most of the youth activities- her pain levels kept her in the hotel room most of the time. But still she said it was great, and can’t wait to go again. And mom? Well, I left with all kinds of great information that is going to help me get my daughter functioning again. For the first time in months, I feel hopeful and confident that help is out there. Now I know what to look for and where to go.
My daughter will be up and functioning again. She will lead a fulfilling and productive life.
Maybe you are feeling as downhearted as I was when I stepped off the plane in Austin. If I can share one thought with you- it’s this: don’t give up. Stay connected to ASAP and keep reading and searching and asking questions. Together we can do this! We can improve lives and find the help and hope we need.