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Caleb's Story

Caleb's Story 

  • Location:       New York
  • Born:             1997
  • Diagnosis:      Unilateral PFFD

  • Treatment:      Syme's Amputation / Prosthesis
  • Told by:          Laura E. Giordano
  • Date written:   February 2002

  • Last Update:   February 2002

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

Write to Author: SoapyTea@aol.com