My Dad held my one-year-old daughter Tammie on his lap with the familiar ease of a man who had raised seven children. She squirmed, so he slid her down between his knees, giving her a chance to practice standing while being fully supported. Sitting down on the couch across from him, I realized that no one had ever held Tammie that way before.
Tammie has TAR syndrome. (thrombocytopenia with Absent Radius) This is a rare birth defect. TAR causes low blood platelet levels which can cause bruising and bleeding. Radius bones in the arms are always missing, but the hands are fully formed. My daughter’s arms are elbow length. One syndrome challenge that we needed help with were her knees. They didn’t seem to have joints.
My husband sat down beside me and said, “Our doctor told us that if Tammie is ever to walk, she needs surgery on both of her knees.”
Nodding, I added, “He also said there isn’t a local doctor who can do the type of surgery needed. We’re taking Tammie to see a doctor at the Mayo Clinic next week.”
The three-hour drive to Rochester, Minnesota to the famous Mayo Clinic required us to leave home before daybreak on an overcast, early spring morning. Once there, Arnie and I were asked if we would allow interns to be present for Tammie’s exam because, “We don’t see many children with TAR syndrome.” During his exam the doctor demonstrated to several students how neither of her knees were functional.
That year Tammie had surgery on both knees and was fitted with cumbersome, full-length leg braces that were cable-connected to a belt buckled around her waist. She took her first steps when she was two and a half years old. Arnie and I weren’t sure if she started walking because of the braces or in spite of the braces.
We all recognized that without the delicate surgery Dr. H.A. Peterson had done, none of this would have been possible. He’d made workable knees out of the bones, tendons and muscles in her legs. That meant she wouldn’t need follow-up surgeries to replace knee joint prosthetics as she grew.
Even after her surgeries, our daughter’s knees were far from perfect. She was happy though, because they functioned well enough for her to get around.
It was easy for me to think of Tammie’s leg surgery as a high-tech tailoring job, because I’d been tailoring her clothing to suit her needs since birth. If I wasn’t able to find short sleeved shirts that allowed her fingers to be exposed, I’d cut off the excess fabric and hem the frayed edges. My daughter is short, so most pants were also too long for her. I gave them the same treatment as the long-sleeved shirts.
Coats with more than one layer taxed my low-level tailoring abilities. I dreaded working on them, worried I would make them unwearable. Along with their needing better tailoring skills, they were more expensive to buy.
I shudder to remember modifying a small pink winter coat of hers. Hoping I didn’t wreck it, I gritted my teeth and used my large sewing sheers to cut most of the sleeves off. Putting the coat on my daughter, my heart sank. When she reached forward, the sleeves were too short.
While mulling over what to do, I realized the sleeves needed a cuff to prevent cold wind from blowing up into her armpits. Jumping to my feet, I found a pair of her big sister’s pink fuzzy socks. I cut the toes off and sewed the raw edges of the socks to the raw edges of the sleeves. It wasn’t fancy, but it would function as intended.
The winter Tammie turned four, she wanted to play in the snow for the first time. Stretchy pants pulled over her leg braces made her legs look like over-stuffed sausages. I asked Arnie, “Will getting the ankle hinges on her braces wet from snow make them rust? They already squeak with each step she takes.” Then I realized that standard mittens didn’t fit her. Worried that the cold would damage Tammie’s small, delicate fingers, I took another pair of her big sister’s pink socks and tucked her small hands into them.
Tammie laughs about my pink coat story. But whenever she buys clothing, something is still sure to need shortening. She does her own small modifications, but now takes the more difficult jobs to a certified tailor. She recently joked, “I shouldn’t have to pay so much for my clothing. After all, I cut a lot of the material cut off to make them work for me!”
Laughing, I teased, “Thinking along that line, do you think your knee surgeries should have cost less, too, because Dr. Peterson used your own tissues instead of putting in prosthetics?”