Parents, you’ve got questions, we’ve got answers.

Or just as likely, we’ve got questions and you’ve got answers.

Challenge: Life Changes

Unexpected Changes

Vote up!
Share on Facebook Share on Twitter Email this article

I fell in love with my baby as soon as that second faint pink line appeared. My love grew more and more as I first heard his heartbeat and saw him hiccup on the ultrasound screen. I imagined how different life would be as a mom: chasing our child through the backyard, playdates, figuring out the pick-up/drop-off of daycare when I’d go back to work... but all of those visions changed at our 20-week ultrasound. We went in to find out if it was a boy or a girl and left with that as the last thing on our minds. “Does dwarfism run in your family? … It could be lethal.”

It was back in those days that I went from not only loving my baby but to believing in him. Doctors soon told us they saw he had so many fractures — his entire left side of his rib cage, his arms, his legs, his clavicle — that it did indeed look to be lethal or “very very very very severe and not compatible with life.” Those words echoed in my ears as my baby kicked me harder than he’d ever kicked me before. It was like he was saying, “Don’t listen to her, mama; I can do this.”

It looked like Isaiah had a very severe form of Osteogenesis Imperfecta (OI). We were educated by the doctors with what they knew from what they studied in school. It felt hopeless from what they were saying, but when I searched “Osteogenesis Imperfecta” on Pinterest (I searched it everywhere), I came across a video of a little girl with OI who was dancing, smiling, giggling… and just so happy. Everything about that video showed the opposite of what I had been envisioning and it gave us hope and a stronger belief in Isaiah.

We found parents just like us in a group on Facebook, so many told their baby’s condition was lethal or the baby would have "no quality of life." Those very kids were defying those predictions. Instead of just thinking about learning how to change diapers and swaddle, we were given tips on how to splint fractures at home and how to know when’s the right time to get to the hospital. We also learned about hospitals with doctors who understood the uniqueness of OI and wanted to give our kids the best lives possible. We quickly switched care to one of those hospitals and it was the best decision we could have ever made.

Thankfully, Isaiah became another baby with OI who defied the odds. He is now almost 3 years old. His beginning was tough but he fought through every challenge thrown his way. He is little (at just 26 inches since OI can cause shorter stature), but he is fierce. He is so joyful and doesn’t let his OI hold him back. He is always singing and laughing. He uses a wheelchair to get around and is just learning to scoot on his back to get from one place to another in our house.

Life is different from what I imagined in those early days of pregnancy. I stay home to care for Isaiah instead of sending him to a daycare (but he will be going to preschool in the fall!). We have therapies (physical, aqua, speech, and occupational) and hospital visits to help Isaiah get stronger, and I liken Isaiah’s fractures to skinned knees on typical toddlers his age, but like those skinned knees where the skin heals, bones do too.

People often tell me how sorry they feel for Isaiah and for us as parents — but I have never felt sorry, not for one second. Isaiah has made it and defies so many predictions. Yes, some days are tough, like when Isaiah fractures, but who has an easy life? Everyone faces challenges; it’s how you respond to those challenges that makes or breaks your life. We don’t let those challenges bring us down. We persevere with smiles on our faces.

This post comes from the TODAY Parenting Team community, where all members are welcome to post and discuss parenting solutions. Learn more and join us! Because we're all in this together.