Monday, November 3, 2014

Yes. Really.

There's a certain question that, when we are approached (which is often given how Isaiah's eyes sparkle and he giggles and waves) that everybody asks me when out and about with Isaiah...

"How old is he?"

When I smile and reply, "He's 14 months now, almost 15 months!", it's so very hard not to look away from the person inquiring as most of the time they look shocked, and ask "really?!?!?"


Sometimes I want to reply "Yes. REALLY."

Sometimes I want to huff loudly and run away, ignoring their question.

Sometimes I want to educate those asking.  "Yes. He has a condition called Osteogenesis Imperfecta.  There's a lot to it but basically his bones are fragile and break easily.  Some of them are curved, see?  Since it affects his bones, he'll always be smaller but he'll always be happy because he still knows how to love and enjoy life."

I imagine if I said all of that, those inquiring would run away.  (pssst, sometimes I do say all of that! and they do. ha.)

Most of the time I just reply "yup, he has a condition that makes him a bit smaller than a typical kiddo his age."

I let the person asking about Isaiah then decide how the conversation will go.  Sometimes, they just smile and talk about how cute he is, and work on making him laugh.  Sometimes, they ask what the condition is.  Sometimes the questions continue...

Will he ever walk? 

Before he was born, I used to think "YES!" Now, I know it is up to Isaiah.  It is up to how hard he wants to push himself and how well his body handles the FD rods that will be surgically placed in his leg bones sometime in the future.  It will be up to his bones and if they can bear weight with the rods inside of them.

How do you not just keep him in a bubble?
"It wouldn't be fair to him to live in a bubble.  Would you want to live in a bubble?"

Will he ever be normal?
"Will you ever be normal?"
It was really hard not to say that.  When asked that, I smiled, looked at Isaiah smiling up at the woman wondering, and said "He is normal.  He is a normal little boy.  A normal little boy who has OI.  But...he will always have OI.  His bones will always be fragile, if that's what you're referring to, and he'll always be smaller, but that's ok.  He's alive. He's happy."

Do his bones just...break? 
"Well, Isaiah has only broken a few bones since being home from the hospital, but as he gets older and more mobile, yes, possibly.  His bones can break from sneezing or even coughing too hard.  But they heal. They always heal."

Sometimes it's hard, but most of the time I prefer the questions over the stares, the elbow nudges, and the "oooooooh my"s.  The questions bring a possible understanding, an open dialog, and the possibility that the inquirer can see past the fragile bones, the visible veins, and his size - see past the OI to see the little boy who doesn't know that he's different...the little boy who wants to play the drums, eat Cheetos and yogurt, be tickled, love, and be loved.

I do wonder if I will always prefer the questions.  Sometimes I can't help but get defensive when I see people stare too long...but I don't want Isaiah to grow up and feel defensive like that.  I hope that he will turn curiosity into acceptance, inquiry into respect, and questions into answers.

Because he isn't his OI.  He is Isaiah and he is amazing.  Really.

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