Caleb's Story
I’m sitting in the park, watching my four -year old son Caleb, play. He climbs, and swings, and slides and his little face is lit up with joy. I am amazed as I see him walk across the sand by himself, for it was not long ago that something as simple as this, was so out of reach.
Caleb was born with PFFD. It was never detected when I was pregnant. I can still hear the nurse’s voice, as she cleaned off my newborn son. "It seems his right leg is slightly shorter than his left, it’s probably nothing." None of the doctors at the hospital seemed able to give us any answers, and thus began our journey, seeking out the right pediatric orthopedic surgeon.
We started out at the Schneider Children’s Hospital, and the doctor was so kind, but our insurance was not accepted, and so we kept looking. Three doctors later, we knew for certain that Caleb did have PFFD, and that we had basically three options. The Van Ness procedure, limb lengthening, or amputation of the foot, and fusion of the knee, creating one residual limb, that would be fitted with a prosthesis. All three seemed awful at the time, but we were hopeful that limb lengthening would work. Caleb was 6 months old when we took him to Baltimore to the Limb Lengthening Center. We were told to wait until Caleb was 18 months, to allow his bones to develop, and they would have a better idea if he was a candidate for the surgery. In the meantime Caleb was fitted with a lift for his shoe, and we began physical therapy.
Emotionally, my husband and I were drained, but we had and still have a remarkable support system. Our parents helped us in any way they could. The people in our church became an extended family, loving us unconditionally through our challenge.
As the months passed and I saw Caleb’s physical progress through therapy, my heart began to slowly change. I realized that my utmost desire to save Caleb from amputation, had been more about me, and what I could handle. I was terrified of something so permanent, so drastic, yet was it fair to just rule it out and not even consider that it might benefit Caleb? My husband and I took a step back, and asked God for direction.
There were two things I was certain of by May of 1999. The first was that Caleb was a fighter. I was given the opportunity to really sit back and watch each week as Caleb’s therapist worked with him. He would utterly scream through most of the sessions, but at the same time, he did what he was supposed to. With every painful exhausting step came the cry of a warrior. Seeds of confidence were planted in his spirit with every session, and they began to grow. Caleb’s world began to open up; he was more willing to try the stairs on his own, more willing to join in with other kids at the park. He had a taste of freedom that came with walking, and he wanted more. This confirmed the second certainty in my heart; limb lengthening was not for Caleb. I knew that the necessary consistency of surgeries, and obvious limitation of activity during each lengthening, would hinder Caleb from the confidence I was just beginning to see. Caleb has an all or nothing personality, and we knew we had to do what was right for him. Amputation was a one-time surgery, he’d be fitted immediately for prosthesis, and his activities would be limitless.
Suddenly, we were filled with such hope. After much prayer we decided the doctor we were most confident with was Dr. Burke, from Hospital for Special Surgery in New York City. There was no indecisiveness with him, he was certain this was the best way to go, and had performed many of these operations. He assured us that Caleb would have a very full, functional life. He even put us in contact with another parent, whose daughter had the same operation, and is now a flourishing soccer player. The next MRI confirmed that the discrepancy between Caleb’s legs had grown, and that the anticipated difference in length was too great a risk for limb lengthening. It felt as though God had already prepared our hearts for amputation, and the surgery date was scheduled.
July 20, 1999. The hardest part of that day for me was to put Caleb in the car, and to see the innocence in his little face as we drove to the hospital. Without a care in the world, he looked out the window, and when he saw me staring at him, he smiled. He wore red socks that morning. The last time I put his favorite sock on that chubby little foot. I keep those socks in my dresser drawer.
The first time I saw Caleb after the surgery is forever etched in my mind. The huge metal crib, all of those tubes, and his sleepy eyes staring up at me. I looked into those eyes for a long time, wanting him to understand that mommy was with him. When my eyes made their way to where his foot once was, I felt my spirit gasp for just a moment. A part of my baby’s body was gone, and I felt the loss. The cast was the whitest shade of white I had ever seen. It was plaster, and covered all of the right leg, half of the left, and came up to just above his ribs. After an hour or so, the nurse let me hold him, it was awkward, and very heavy, but any parent knows, that when your child needs to be held, you don’t feel the weight.
The first night was the hardest. There are few things under the sun more difficult than seeing your child in pain. The nurses were wonderful, and really did their best to manage his medicine, and keep him comfortable. The hospital is honestly the most beautiful, cleanest, and comfortable hospital we’d ever seen. The staff accommodated us, making sure we had everything we needed. If you ever have to stay over in a hospital, this is the one you want to be in. I really cannot say enough good things about the professional, elite establishment it is.
At last, after four days, we came home. Caleb’s crib was moved into the living room, and we slept beside him every night for eight weeks. My mother came over every single day to help me and keep Caleb smiling. My in-laws helped with all the practical things; arranging for a wheel chair, doing laundry, just always being available. Friends from church brought home cooked meals. Sometimes, we just needed to laugh, and friends came to tell us funny stories, my girlfriends came to take me out shopping, or for coffee. We felt like we were covered, and taken care of.
The most difficult part of those weeks was caring for the cast. Keeping it clean was hard, because Caleb was only 22 months, and not potty-trained. I spent a lot of time using the hair-dryer to dry the cast. I tried every suggestion given to me, and nothing worked. Soon, the dampness of the cast caused a rash on Caleb’s stomach like nothing we’d ever seen. It was impossible to care for because it was under the cast. Eventually, the nurse made a paste for us using some diaper rash ointment, that proved magic. After 5 weeks, I was ready to rip that cast off with my bare hands. It smelled, and was always damp, Caleb was frustrated, and we were anxious to move on to the next step. All in all, he handled it so well, and although he was cranky sometimes, it was always easy to make him smile.
What a glorious day when that cast came off!!! We were scared to see Caleb’s leg without it’s foot, and nervous at his reaction. It was so small and delicate looking. Caleb didn’t even seem to notice he was so happy to be held, and cuddled again. Holding him felt like holding a newborn after the heaviness of that cast.
A few weeks later, we went for our first visit with the orthotist. His name is Erik, and he sat down with us, and explained the steps involved in making a prosthetic leg. It was thrilling to think that in just a few short weeks, Caleb would have his leg. We were able to pick out a pattern that would be laminated under a clear shielding, we decided on Winnie the Pooh. Each time we went for another fitting, I was overwhelmed to see all the other patients. Some were children just like Caleb, some were adults. There were teenagers, and elderly people. It was amazing to me, to walk into this place, a place I would have never known existed, and to exchange looks of hope, and compassion with people I had never seen before. There was a profound understanding between everyone in that place, the understanding of survival.
In early October, Caleb was given his first prosthetic leg. Words could never do justice to the sight of Caleb standing on two feet. His jeans resting evenly on the rim of his sneakers. Two beautiful legs, one extraordinary boy. It was a dream come true, Caleb walked immediately. We all laughed, and cried with joy. We went home and played with a push toy in the back yard. I’ll never forget the unseasonable warmth of the sun that day. I remember the sky was a deep blue, and everything just looked really bright. There were an unusual amount of butterflies flitting about, as though they were rejoicing with us. It was like when Dorothy comes out of her house and she’s in Munchkin land and everything is in Technicolor. That was our Technicolor day.
Two and a half years have passed, and Caleb is doing great. There are realities we deal with, of course. For awhile, Caleb’s mind was ahead of his body and he’s hairline fractured his right leg three times. As a mother of a physically challenged boy, it’s hard to learn the rhythm of letting go, yet still being watchful, and aware that he can fall a little easier than other children. My husband and I so desire for Caleb to continue to gain independence and confidence, and it’s sometimes complicated because Caleb was more physically dependent on us than your average toddler. When children begin to walk, usually by a year old, they see the world differently. They communicate differently; they reach a new level of independence. For two years, we were Caleb’s right leg. There were times, like in social situations when he couldn’t run around with the other toddlers, and his level of playing was limited. He became very attached to me, and so when he was actually able to walk around it was a long process of letting go. I am thrilled to say that he now goes to school, and sometimes forgets to even say goodbye to me! Learning that it’s okay that we are on a different journey than most of our friends was also hard. I struggled to gain the ability to be content and not compare our life, and our problems to others. Especially when you hear other people complaining or placing such importance on little things, it’s difficult not to get resentful. I have ultimately learned that everybody has a different reality, and that God doesn’t make mistakes. He isn’t unaware of our challenges. He created Caleb, and has a wonderful plan for his life.
I am honored to be Caleb’s mother. I cannot think of a greater gift, than the gift of seeing victory in your child’s smile. Victory does not only come with the first steps, or the physical accomplishments. Victory is there when we see the character in our child, when we see the compassion in their spirit. These are not ordinary children; these are children who will understand the meaning of real perseverance. Children who will be able to reach out and comfort others, and inspire others. There is a tendency in some of us parents, to want our children to conform, to be "normal". We wait expectantly for our lives to go back to the way they were, before we had all these decisions to make, and doctors to see. I encourage any parent who is in the beginnings of this process, don’t make the decision based on who you think your child ought to be. Make the decision based on who they already are.
Laura E. Giordano
Soapytea@optonline.net