Osteochondromatosis

I had a conversation with one of Alex's therapists recently about his bone disease.  She had noticed some tumors on his body and asked me about them out of concern.  She said, "I didn't want to mention it to him for fear it would frighten him."  Alex laughed and said, "No, I was born this way.  I'm not frightened."

I have recently had a lot of people ask me about my boys and their bone issues.

All three of our gremlins have a rare bone disease called Osteochondromatosis.  It is a disease caused by a mutated gene that can be passed down through generations. It causes tumors to grow on the skeleton and affects growth. We have been told that most children who have this disease are smaller than other children their age.

All three of our gremlins have had two surgeries to remove tumors and they will endure more surgeries as they grow. It has helped make them the little toughies they are now!  Alex had one arm in a cast and the other in a sling after his surgeries. We had to do everything for him and he HATED it, but (as is his nature) rarely complained.

I have had people say (in regards to Alex having this bone disease as well as Apraxia and Ataxia), "That poor boy didn't have a chance."  While he did seem to get the short end of the stick, it has helped shape him into the awesome kid he is today.  He knows life isn't perfect and things aren't easy.  He has to work harder and take twice the amount of time it takes other children his age to do simple tasks.  It has helped put things into perspective for him, and us as his parents.

Life is what you make it.  People say that God knew what He was doing when He gave Alex to us.  While I appreciate the compliment, I have to point out that Alex has taught us so much about life over the years. All three gremlins have helped make it so easy to not only find the bright spots but to also appreciate them (each and every one).

So often our bright spots are blocked by a tiny bit of negative.  We take that negative and we feed it, making it larger than it really is (larger than it needs to be).   Our gremlins remind us that those little negatives aren't worth our time.  It's all about the positive and finding those bright spots!

Here's to healthy, happy gremlins (and to appreciating those bright spots)! How blessed we are!