Ok, you know how weird it feels when you sit down on a waterbed? Now think about kneeling...or even standing on one? Feeling dizzy and disoriented already, right?
Yep, that is the daily challenge for Maxwell and his friends dealing with vestibular dysfunction. (And that isn't even adding in the sensory disorders, vision and hearing loss.)
I never knew how to properly understand how Max feels or how to describe the vestibular issue to others. But this weekend I was talking to a friend (of another child with CHARGE) and she said that is how one of the conference presenters approached the description. It totally fits.
Can you imagine? Can you imagine all day long...each and every minute struggling to keep your balance and understanding where you are in space?
How would you have energy or drive to do anything else?
Wow. Wow. Wow. Max and his friends continue to amaze me more and more each day.
3 comments:
That's a great description of vestibular dysfunction. Even though Katie has been walking somewhat independently for almost two years now, when she is standing still I can see her struggle to keep her balance...constantly! And when I'm holding her hand when she's walking, I can literally feel the gravity pulling at her body. It's amazing what our kids manage to overcome and all the progress they make despite their constant battle to achieve some of life's simplest actions.
That is wonderful I am going to use that from now on.
Thanks,
Crystal and Eva
what a wonderful description i have that feeling when sevsies mum puts the airmatress in her room and she wants me on other matress have to sit down to get there but when im on it dont reflux as much hmmmmmmmmmm
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