Whether it's a quick run to a local craft store or a family get together 2 hours away, Isaiah's really learning to enjoy our trips. I am constantly learning when on these trips with Isaiah; recently I've started to really take note as to how others perceive Isaiah and how they interact with him.
One of my biggest fears for Isaiah is that people will treat him like he has some kind of contagious disease or like he's in some invisible bubble.
Although I know people want to protect Isaiah, he's still a little baby boy, with normal little baby boy wants, needs, and interests.
He wants little kids to come say hi to him.
He wants them to play with his toys with him.
He likes when others stroke his head or hold his hand.
He loves when people make silly faces, laugh in goofy monster voices, and sing songs.
One of my biggest fears for Isaiah is that people will treat him like he has some kind of contagious disease or like he's in some invisible bubble.
Although I know people want to protect Isaiah, he's still a little baby boy, with normal little baby boy wants, needs, and interests.
He wants little kids to come say hi to him.
He wants them to play with his toys with him.
He likes when others stroke his head or hold his hand.
He loves when people make silly faces, laugh in goofy monster voices, and sing songs.
Like your child, he has two eyes, a (loud) mouth, and a belly button. He smiles and laughs, like your child. He's also unique, like your child.
Yes, he has OI. He also has a beautiful smile, a contagious laugh, and an obsession with toys crashing.
Yes, his bones are fragile, but your child touching him won't automatically break him.
Please know and understand that.
Please know and understand that if you tell your child "not to touch him", I worry that the stigma that people with disabilities are trying to extinguish will continue.
We know that's partly our fault (in regards to Isaiah). We don't even let others hold Isaiah off of his mattress. When new kids come up to meet him, we're on guard because we do want to protect Isaiah. We're on guard out of instinct, but we still want the interaction for the sake of everyone involved. We're on guard because we're his parents and it's our job to protect him, like it's your job to protect your child.
In our eyes, we liken it to a skinned knee on an active little kid. It's going to happen because we want Isaiah to be an active little kid. I've thought long and hard about how I'd explain Isaiah's OI to little ones. Maybe I'd tell them that Isaiah has special bones. I'd definitely say that we have to be gentle. I'd show them by example. I'd recommend you show them by example.
Please, don't be afraid to have your child interact with Isaiah. We will be there to facilitate and play too.
OI is a condition that Isaiah has, but it's not who or what Isaiah is. We are going to raise Isaiah not to be afraid...we're going to raise him to enjoy life to the fullest.
If you have a moment, please watch this video that a fellow OI mama put together. Look at the beautiful children in this video (Isaiah has 2 cameos at the end!). You will see some of them riding bikes, climbing trees, dancing, playing in the snow, doing gymnastics, playing sports....They all have OI and they all live life to the fullest.
With every broken bone, I swear I lived.
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I'm adding Dave's thoughts on this.
"The tough thing is we know this is mostly our fault. We are still discovering how fragile Isaiah is and although we needed to prepare for the worst, we don't want to keep him in a bubble either. We are going to ask others for an unreasonable amount of patience and understanding with this as I'm sure there will be plenty of times we are talking out of both sides of our mouths (be careful, but not too careful)."
In the beginning with Isaiah, we were scared, most times we still are, but the fear is less. I don't know how to fully explain my feelings on this topic as I know we will say things like "he could break a rib sneezing" (which is scary and true) but now I want you to let kids play with him.
It is confusing. As much as we want everyone to be careful with him, he's developing into a little boy and little boys wants to interact with the world. We want to protect him, but not shelter him. We want him to begin experiencing life. It wouldn't be fair to him to keep him away from others because of the "what ifs".
Lydia and I are looking forward to seeing the three of you on Sunday at Kate and Sal's. I plan to make silly faces at your son and perhaps a little peek-a-boo. I may even tickle the end of his nose.
ReplyDeleteBeautiful video!
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