Session Fourteen: Walking Toward Hope

Travels with Our Trachie

Session 14: Walking Toward Hope

We had logged plenty of miles traveling with our trachie, but now we had turned our focus to walking with our trachie. Our girl’s rare form of dwarfism included more than just a shortened stature and a floppy airway. She has many complex limb deformities. Her arms are fused at the elbow due to an incredibly rare condition called radiohumeral synostosis. (Which means she can’t bend or straighten her arms.) Her legs have a litany of issues from her tiny little hips all the way to her toes.  

Her bilateral clubfeet had been the primary focus of her ortho doctors up to that point. She had a couple of surgeries to lengthen tendons and fit for AFO braces, all of which had failed to correct the condition. As our daughter aged and her determination to be mobile had become apparent, we noticed that her right knee would buckle when she attempted to put weight on it. She could pull herself up on furniture and even walk with the use of a medical walker, but it would make us cringe each time we would see that knee pop.

Her orthopedic surgeon determined that our daughter lacked an ACL in her knee. Later in the year, we would surgically intervene, but in the meantime, she was fit for a KAFO (a brace that extended to her knee.) Our girl was not a fan of the molding procedure and would only wear the brace during PT sessions at first. It looked wildly uncomfortable, but it succeeded in providing the needed support for walking practice.

We knew that one day our girl would walk on her own, but we also acknowledged that walking long distances would likely always be a challenge for our daughter, so during that time, we also ordered a power wheelchair. There were some exciting changes happening, ones that we hoped would improve her quality of life and aid in her independence.

In my own journey as a medical mommy, I was still attempting to pray our situation away. From the very beginning, I struggled with accepting our new life. My heart was drowning in fear and my faith foundation had crumbled so many times. I was desperate for our daughter’s healing and had allowed my hope to turn to obsession. Finally accepting that our daughter needed a wheelchair was a turning point for me. My heart was finally ready to embrace a life different than the one I had planned.

It’s hard for me to admit my inner struggle. I had perpetuated the façade of strength for so long. Although my mind was constantly in medical momma mode, and I had become an expert on all things pertaining to our daughter’s condition, my broken heart was still longing for a return to the life I had planned. The catalyst to my surrender was my heart being touched by a calling from the Holy Spirit. I had been on a journey of faith ever since we received the fatal diagnosis of our unborn child. I had prayed and pleaded for God to see our plight. But even more than that, I had been searching for my place in God’s kingdom. It was during those first few days of the Lenten season of 2019 that I heard the Lord’s call to convert to Catholicism.

Our family was on the precipice of an exciting adventure, a new path filled with renewed hope and the assurance that God was with us on our journey.