Someone reached out on social media the other day and asked why Callie had a prosthetic leg.
First, I love the way they asked. It came from a place of curiosity and acceptance. I wish more people would feel comfortable asking questions and engaging with differently abled children like that!
But it gave me the idea for this blog post where I could explain a little about Callie’s history and catch our new readers up to speed!
Callie was born 6 weeks early via C-Section. When she was born, the doctors whisked her away before I could even see her. I knew something was wrong when we didn’t hear her cry.
I sent James to follow the doctors because I was terrified something was terribly wrong. When he came back into the room I could tell instantly by his face that our world was about to be turned on its axis.
Callie was born with a heart condition called Tetrology of Fallot. She would need immediate open heart surgery to repair one of her valves and repair a hole in her heart. The cardiologist also explained that she would need a few open heart surgeries over her lifetime as she grew in size.
At three days old, our baby girl, our miracle, our saving grace underwent open heart surgery. We would spend the next 90 days in the NICU while she recovered and we could show the doctors that she was well enough to go home.
During our stay in the NICU, a specialist came in to exam Callie because they discovered her left leg was markedly shorter than her right leg. At that point, we had not even come up for air to think about that fact. We were more focused on making sure she was healing, eating enough, gaining weight, and beginning to thrive.
The orthopedic doctors hit us with another heavy blow. Callie was born missing one of the large bones in her lower leg. She also was missing some of the connective pieces of her ankle bone and would not be able to walk. Ever.
We had an impossible decision to make–do we try to do several bone lengthening surgeries that probably would be very painful and not have a high success rate to try to save her leg? Or do we amputate her leg midcalf and get her fitted for a prosthetic leg? So she could have a shot at a normal life? How do you even make that decision for your child? How do you get over the guilt that you might be the one to blame for her conditions? How do you pick the right choice?
We made the decision to amputate her leg–in the hopes that she would grow up with her prosthetic leg and that would be normal for her. She would learn to walk, run, and do everything else other children would but…. with a prosthetic. She wouldn’t spend her childhood in a hospital or a wheelchair. She wouldn’t have to undergo countless painful surgeries that couldn’t even promise that she would eventually walk one day.
To say it was a hard decision is an understatement. To this day, I hope we made the right choice. But seeing our warrior flourish like she has, I’m comforted by that fact. I’m reassured when I see her handle questions from strangers with kindness and grace. I’m inspired by her when I see her continue to push herself and reach new milestones. I’m brought to my knees by her strength and courage.
Thanks for reading!