Osteogenesis Imperfecta: A Happy Life

Posted by Vicky Martin on 5th May 2017 Additional Needs, Advice & Support, Disabilities

Sometimes people are curious as to why Isaiah is in his wheelchair, amazed that he is completely independent in it, or sometimes to ask, “what’s wrong with him?”.

When they first hear about Osteogenesis Imperfecta, and what it’s most known for (bones that fracture easily), most people are typically pretty astounded.

There’s usually some cringing. Replies vary between “I am so sorry”, “Will he grow out of it?” (OI is a life-long condition.), “that is awful”, “God bless you!”…

There’s usually some shock typically followed by “but he’s so…….HAPPY!?!”

Isaiah is truly one of the happiest children you would ever meet.

With everything he has endured…respiratory failure, four surgeries so far, and multiple fractures, he has chosen joy.

OI is a part of his life, but it’s not his life.

There’s so much more to a person with Osteogenesis Imperfecta than their Osteogenesis Imperfecta.

Isaiah is an amazing big brother. He holds Jacob’s hand every chance he gets.

He watches his 8 month old brother with such pride and cheers him on when he reaches a new milestone.

They share laughs and conversations only they understand. He loves reading Jacob books. He is even learning to share his toys…at his discretion…

Isaiah asks to go out every day. He enjoys evenings on the swing at his local playground, on our deck blowing bubbles, or rolling around the neighbourhood in his little blue car.

He loves rolling around local stores. He is very into playing with cars. He is a big lover of music- whether he’s playing, singing, or listening.

He’s been to Disney World twice already and although it’s been almost a year since our last trip, he asks almost daily to ride certain rides or go to certain parks.

There are rough patches, painful days, scary moments….but who doesn’t experience rough patches, painful days, and scary moments in their lives?

It’s how you respond to those experiences that matter.

We are trying our best to raise Isaiah to choose joy as much as possible.

When he fractures, it hurts just as much as someone without OI. In most situations, we splint him ourselves at home, he gets some pain medicine as needed, and sometimes he spends a few hours watching his favorite movie or checking out some fun stuff on the tablet, but then he goes on with his life.

If he’s due to go to preschool? He goes. If he wants to go to the park and swing? If his legs aren’t splinted together, we get him on that swing.

Typically, he’s back to smiling and laughing once he is splinted because it offers him comfort and stability.