My son is on my mind today, as he is most of my days. Six years and two days ago, we had the church service to celebrate the 22 years of my son’s life. Shane had spinal muscular atrophy type 1, he was ventilator dependent, he had limited ability to speak, and he took in all his nourishment via a g-tube and food pump. He never let all this define him. He was his own person with his own ideas. He was never afraid of anything (except maybe a colonoscopy without sedation).
Today, I went with my husband to the dermatologist, and I found myself remembering some of the experiences we had taking Shane to the doctor’s office. Most of the time, my husband was either out of town working or otherwise occupied, and going to the doctor fell to one of Shane’s nurses and myself. Most of Shane’s appointments were on 21st Street near downtown Tulsa. We had to drive on a congested freeway that goes from Broken Arrow to downtown, and it was full of short ramps and shorter tempers and reckless drivers.
Traveling a congested freeway driving a handicap Dodge caravan with my young man in his power chair could be nerve racking. The nurse rode at his side, but I could read his face better than any of the nurses. I frequently checked his face in the rearview mirror, so he could non-verbally let me know if he was having troubles. Reacting to any distress on his part entailed taking the next exit to the next parking lot to do some suctioning or repositioning. To calm my frazzled nerves, I would put on James Taylor’s October road CD to mellow my mind. James Taylor’s voice had an instant calming effect on me, but Shane always griped at me; he hated what he called “old people music.” I always quipped back, “I have to have James on to deal with the traffic! We’ll go back to Mix 96.5 when we get off this road.”
If I turned the wrong way, Shane would make a loud sound that we described as a “hoot”. I’d say, “Am I going the wrong way, Shane? And he’d make the single sound that was a short “un-ha” for “yes.” This happened more times than I like to admit. My son had his father’s sense of direction. You could blindfold them and spin them and they still knew which direction was north. This was very advantageous for me as I have the directional sense of a loon not a goose. Having Shane with me kept me on the right track.
We’d arrive for the appointment. I always called to make sure the doctor’s office was running on schedule, but on the rare occasion that we ended up bored in the waiting room, Shane would scowl at me with a big eyebrow frown. In response, I would go up to the office window, and ask, “Should we reschedule? You all seem too busy for us today.” One time, they did reschedule our appointment due to some emergency that stole our doctor’s attention. Most of the time, the staff would move us to an exam room, and they would remind the doctor that Shane’s ventilator had a short battery life.
I learned early on of the importance of having doctors who know SMA and agree with doing everything possible to make life good. Shane’s doctors were all on our side, they all knew Shane very well, and they spoke directly to him asking yes-or-no questions. When Shane was seventeen his neurologist offered him a sticker, and Shane just rolled his eyes to say, “Really?” The neurologist said, “I need better prizes for teenagers right?” I said, “Maybe some photos of the Olsen Twins.” To which Shane smiled and indicated, “Yes!”
This gave me an idea, and I attached a picture of the twins to a pencil that we took to the next eye doctor appointment. I said, “Try this to check his eye tracking this time doc.” The doctor laid down the stuffed dog he used for this purpose, and found that Shane’s eye tracking was fine given the right motivation. Maybe the stuffed dog was insulting to a man his age, and Shane loved to ignore anyone who was insulting or condescending toward him.
After appointments, we’d go to Chuck E Cheese when Shane was little and to the Mall when he out grew childish things. Doctor appointments were easier if we had something fun planned for afterward. I’m rambling here, but inside I cherish all the memories I have with my son. I miss him very much. There’s no one to keep me in check anymore, and now listening to my James Taylor CD makes me cry and I get lost easily without my guy.
My husband’s doctor was running very late. We rescheduled. **Hint: 1st appointment of the day or 1st one after lunch is the best time to schedule a doctor’s appointment.
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