"It must suck to be in that chair"

The title of this blog is "Living with Osteopetrosis" so I thought it was only fair to share all aspects of this disease. The thing about Osteopetrosis is that the patients 'look' normal. Normally, you cannot distinguish between an OP patient and a non-OP patient. Go to www.internationalosteopetrosisassociation.org to see 3 boys on the page, and try to pick the 2 that suffer from OP. It's a hard thing to do. With Kaleb, it's different because we have this bright red chair that goes along with us and makes many people STARE like they've never seen a chair before.

Kaleb is on Christmas break so yesterday my mother and I took him to the Newark square and went into many of the little shops. We haven't done that for a long time and thought it would be nice to 'get the stink blown off him' as my mom would say :) We went into a couple shops that we couldn't get any further than the front door so we smiled and left. It's amazing to discover the non-handicap accessible places and normally you wouldn't even think about it, if it weren't for that darn chair :)

We end up sitting down for lunch and a little boy (about 5) comes up to our table. He is staring at Kaleb's chair and he loudly states, "It must SUCK to be in that chair". It embarrassed Kaleb and he put his hood up on his head (as though that would make him disappear). I promptly say "well...at times I'm sure it does..BUT there are good things too...like when we go to the mall and I'm tired of walking, Kaleb is still rearing to go". This makes the little boy laugh and he then tells us that he would just LOVE to do wheelies in Kaleb's chair. This makes Kaleb giggle a little and finally his hood comes down. He and the boy talk a little and we go on and have our dinner.

I wasn't upset at all at this boy's revelation but was glad he left feeling like Kaleb wasn't living a life that sucked.

After 2 years of dealing with the chair, we are more 'accustomed' and it has 'become part of our lives'. But there are still stark reminders that the chair is noticed and it does cause some thinking outside the box. For example, how many parents would like to go to their son's Christmas program and never be able to see his face during the performance (actually, never see him) because they put the elves in the front row standing and dancing. And you know the sad thing, is I don't think one other person in that auditorium noticed other than me, my mom and Mark. Everyone else was happily smiling proud smiles watching their children dance, twirl and run across the stage. Oblivious.

This is just one example of 'living with osteopetrosis'. This doesn't mention the excruiating bone pain that is hard to relate to unless you've seen it in full action. That will be another post, another day.

Until then, we're going to Dresden today to pass out business cards and hope that we are able to make it through the aisles successfully.

Blessings to all.
Lori
www.loridaviswebsolutions.com