“It isn’t as bad as you sometimes think it is. It all works out.” – Gordon B. Hinkley
I still remember listening to the voicemail my OB doctor left over and over again. He called to let me know that he was referring me to a high risk specialist because the ultrasound technician failed to find my baby’s left fibula during my 20 week scan. As a nurse myself, I knew that the odds of it being just a simple mistake were fairly low, otherwise he wouldn’t be referring us to a specialist right off the bat.
I remember finally building up the guts to google what a missing fibula’s impact would have; Fibular Hemimelia. I never remembered hearing of this before, but it is a term I have now become quite familiar with. Through our own research, my husband and I gathered as much information as we could about the implications and treatment options. When we found that the most favorable treatment for this condition was amputation of the affected limb, I was beside myself. Fear of the unknown, anger, and denial began to set in as I began to contemplate what this would mean for my child and their future. I didn’t want my child to struggle more than necessary.
A week went by before we met with the specialist who would confirm the condition of our baby. I remember sitting in the bed as the nurse turned down the lights and the image of my baby again appeared on a monitor; instead of laughing as I watched her wiggle around like the week previous, I draped my arm across my face trying to hide my tears and steady my voice as I asked about the baby. After a few moments of measuring on the sonogram machine, the doctor confirmed that she had Fibular Hemimelia, and that she was also missing a metatarsal and a toe. I gripped the sides of the bed and braced myself as the tidal wave of emotions crashed down on me and knocked me back. The nurse patted my leg and tried to reassure me that, “It could be so much worse”. She was right. I knew this, but it didn’t console me in that moment. My husband crawled onto the bed next to me and held me as we cried, and that was our first real moment as a family of 3.
Shortly after Carmen’s birth we met with an orthopedic surgeon to discuss a plan. The doctor determined that the best time for amputation would be at around one year of age, and then we would have her fitted with a prosthesis and put her through physical therapy to help her learn to walk. We would meet only a few more times in the next year before her surgery at just 13 months old. During that period of time I tried not to focus on the amputation itself, but the outcome; this would allow my daughter to walk, possibly run, and to have the best quality of life. We discovered along the way to our decision to amputate, that many parents struggled with the loss of a piece of their child. Initially, I felt untouched by these emotions, but in the weeks and days prior to surgery, I found myself painting her four little toenails and showering that chubby little foot with kisses.
Two days before her amputation, I finally worked myself up to casting her foot. I bought a kit at Hobby Lobby and brought it home. We tried to make a fun experience of it, but she was a wiggly 13 month old, and I discovered the next day that the casting didn’t work. I frantically called my mom who was in Utah at the time to find another kit, because they were all sold out at my local craft stores. We got to Utah the evening before surgery, and tried for another casting. That was the first time I had vocally cried since her diagnosis. This was it. It was happening. I wouldn’t be able to count, kiss, or tickle those perfect-to-me toes ever again. There was a sense of urgency, as I needed to feel like that piece of my child wasn’t gone forever. I could sense that the family around me were saying silent prayers as we held that wiggly girl for one last shot. Miraculously, it worked.
I didn’t sleep for even a minute that night. Our daughter had major stranger danger, and I kept replaying heart wrenching scenarios in my mind over and over again, of her reaching out to me and crying as she was taken into surgery. Finally, morning rolled around. I woke my husband and we headed to the hospital. It was early, and the hospital was still quiet. The time finally came for us to enter the pre-op room to meet with the surgeon. A calm washed over the room, and I could see it was felt by everyone there. Then, the most miraculous thing happened; instead of reaching out for me like I had feared, Carmen reached out for her surgeon. Her surgeon took her into her arms, and we walked alongside them down the hallway to the OR doors, and watched in awe as our daughter went through the doors without even glancing back; it was a tender mercy.
Just a few hours after surgery, we were relieved to see her dimply smile beaming once again. In the weeks and months following surgery we got to witness so much resiliency in our daughter as she learned to walk with a prosthetic almost unphased. Her persistence to stand and walk after each tumble inspired us in so many ways. She has continued to be an example of resiliency, and shows more empathy, compassion, and acceptance than I have ever seen in a child her age. The struggle I had worried so much about has become a strength. We are so grateful to get to be her parents.
What was the hardest thing you went through during this time
The fear of the unknown, and having to part with a piece of my child.
What advice do you have for people going through a hard time
If you’re religious, pray. Look for tender mercies, because they’re always there. Also develop a sense of humor. 🙂
What helped you the most during your trial
Connecting with others going through the same thing was so helpful. Being able to talk about our feelings with individuals who could empathize and offer perspective or advice brought us a lot of comfort.
What Quote or Motto got you through this difficult time
I have come to find that Gordon B. Hinkley was right when he said, “It isn’t as bad as you sometimes think it is. It all works out. Don’t worry. I say that to myself every morning. It will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. He will not forsake us. If we will put our trust in Him, if we will pray to Him, if we will live worthy of His blessings, He will hear our prayers.”
Share an update on your life now
Carmen has since gone on to learn to walk, run, jump, skip, and do most things other kids are able to do. She’s now a kind, empathetic, funny, smart, and wise-for-her-age 7 year old
Although I know there will be more obstacles throughout Carmen’s life involving her condition that she will have to face, I have great confidence in her strength and determination to overcome. I hope that during times of hardship she will know that she can turn to others and the Lord for help, and in doing so, that she will learn to recognize others struggles and come to their rescue in times of need. One of the greatest gifts we receive through enduring trials is the opportunity to then understand and comfort others. Christ suffered all so that “he may know how to succor his people”, and he expects the same from us. Thank you to Coco’s Caravan for this opportunity to hopefully relate to or comfort others going through difficult times on this platform
Read more stories like this HERE.
Follow their journey here @bekahwilkey
Megyn E Pike says
Amazing story, great advice. Thank you for sharing.