A Train Ride to Holland - Part 5

By ExoticHippieQueen ©2011

We took a short break before scheduling TJ’s right hand surgery. It was agreed that we all needed a breather, but in short order we found ourselves in the queue for the second finger release at Jackson. The orthopedic surgeon made the wise decision to forego the partial body cast, but every other aspect was virtually the same. This time, though, his skin grafts did not suffer the moisture damage that the left hand had suffered, resulting in a much better outcome. Other than a few croup episodes, his recovery progressed normally.

At the age of eight, TJ needed to have an upper face advancement. In this procedure, the upper half of his face would be skillfully moved slightly forward to improve his profile, and at the same time, his protruding eyes would be recessed more deeply into his face to prevent any future damage to his eyes. Now an experienced surgery pro, T was old enough to understand and dread the upcoming surgery. We bought a stuffed Alf and a Superman balloon for emotional support and made rash promises about ice cream, new toys, anything to assuage his fears. We had moved to Hinckley, Illinois, following our disastrous year trying to homestead 9 acres in Live Oak, Florida. All surgeries would be based out of Children’s Memorial Hospital in Chicago, an excellent teaching facility, as well as a leader in innovative treatments for children’s health issues. TJ’s roommate was a cute little boy who was at Children’s because of undescended testicle issues. They bonded immediately and made the stay there more enjoyable. As always, TJ endured the agony of the staff's attempt to get a pre-surgical blood draw. His veins lie deep and are difficult to access, requiring multiple, painful jabs. This problem has followed and haunted us through all of his procedures. The surgery again, thank God, went very smoothly. We found a different looking T when we were allowed into Recovery. With his eyes repositioned and his forehead advanced, he looked completely different. Within a few hours, his face began to swell and discolor, and it would be more than a week before we were able to see how his face would look when healed.

Other additional surgeries were considered. TJ’s index finger was slowly curving to the side, and for cosmetic purposes, I suggested that it be repaired, but the plastic surgeon explained that while gaining cosmetic appearance, he would lose function in the juxtaposition between his thumb and index finger. That did make sense, though we did make the decision to widen his gripping area so that he could pick up a drinking glass with one hand. That was a quicky same-day surgery.

We passed on separating his toes. By this point in his life, we were weary, and TJ was now able to voice his opinion about his health. He did not want anymore surgeries unless absolutely necessary, and who could blame him? Additional cosmetic repair could have improved the appearance of TJ’s hands, but if the risk was to lose function, then what was the point? He was able to pick up a dime from the floor, and now drink from a glass with one hand. He also could button up shirts, zip up zippers and do other fine movement activities. The need for braces required many trips to the far north side of Chicago over the course of two years, as well as a few tooth extractions, but now TJ had reached the endpoint of his young life of surgeries.

As the years passed, T experienced uncommonly good health, enjoyed a small group of close friends, rode his bike, raced around on a go-kart and grew into a teenager, a young adult and now, a 31-year old man. TJ is employed full-time, lives with a roommate in a house not far away, and has many friends and interests, which include off-roading and hiking. Gratefully, he is very healthy, but still does not like to see a doctor and seldom does.

In retrospect, I am thankful for all of the gifted surgeons who did their very best for TJ. We experienced many kindnesses along the way from nurses, patients, friends and family. Without their support, I really don’t know how we would have survived emotionally. We hope that others who are experiencing challenges that seem insurmountable or impossible will be encouraged to take each day as it comes, one step at a time, and use all of the many support networks available to them. Visit http://www.apert.org to learn more about TJ's syndrome and http://www.faces-cranio.org/Disord/Cleft.htm to learn more about the cleft palate condiiton. Thank you for reading TJ's story.

Finally, thank you, TJ, for graciously allowing me to share these photos and glimpses of your very personal story. You endured with such stoic bravery, even as a tiny baby, while projecting a loving and positive attitude, bringing joy and teaching life lessons to us..........in this we found the unexpected gifts. I love you.....................