Stand, Stand, Stand By Me

 Recently, we traveled to St. Louis for Kyra’s two-year spinal fusion surgery check up.  On Wednesday morning, we left Kyra’s puppy, 11-week-old Kida, with some friends (hoping their dogs would teacher Kida some manners); we left our 8-year-old yellow lab Anya in charge of the house and the indoor cats; we left the barn cats, horses, chickens, and ducks in the hands of co-workers, friends, and the construction crew doing some work on our house; and we drove the 7 or so hours to St. Louis.

Kyra’s appointment was on Thursday at 8:00 am, at St. Louis Children’s Hospital.  Her surgeon showed us the x-rays that were taken earlier that morning.  The fusion was healing well, all hardware was intact, and Kyra’s scoliosis result is about 3% off center.  Compared with her pre-surgical curve and rotation, pretty much a miracle.  Dr. Luhmann didn’t quite release Kyra from care, though.  He said he’s happy with the way the bones of her spine are fusing, but the strength of those bones could be better. The purpose of spinal fusion, he explained to us (probably for the 100^th time, but he was patient anyway) was that new, fused bone growth would take the place of the surgical hardware (the rods and pins in Kyra’s back), so that Kyra’s spine would hold her upright independently of the implants. At that point, the implants remain in her body simply because the surgery that would be required to remove them would be more risky than leaving them in place.

When we discussed why Kyra seems to be in some pain now, he said that many children with severe neuromuscular-skeletal disorders don’t exhibit pain in their back, hips, knees, etc. until adolescence or early adulthood, when our bones naturally begin to harden and joints begin to contract.  He explained that as humans age, the need to strengthen our bones with weight bearing exercises increases also.  He said that the spinal fusion will have relieved any pain in her back, but pain in Kyra’s hips or knees may be showing up now.  So, we’re returning in a year for another check up. In the meantime, he referred us to 3 trusted hip specialists for further evaluation, and Kyra is supposed to stand, stand, stand as much as she can.  (Yes, Dr. Jan, another advertisement for standing!)

After Kyra’s appointment, at approximately 8:45am, we went to the lobby of the hospital’s main entrance to decide how to spend the rest of the day.  Soon after sitting down and explaining to multiple security guards why we were there, a man standing near us nodded toward Kyra and said, “She’s got Cerebral Palsy, has she?”

The Mennonite man that approached us lifted the cuff of his crisp peacock blue shirtsleeve to reveal a silver-gray wristband, similar to the Joyful in Hope bands we had made for Kyra, and that Trac wears constantly.  After talking with the man for a few minutes, we learned that his daughter had been born with Cerebral Palsy, with symptoms very similar to Kyra’s, but had passed away in 2006 at the age of 13. “Sometimes, it’s just too hard to be here,” he remarked.  By then, I had noticed his laminated PICU badge.  At St Louis Children’s Hospital, this badge is required for admittance to the PICU (Pediatric Intensive Care Unit) ward.  When you will be there for a short time, as we were two years ago, you are issued a stick-on paper badge each day. This man had the dreaded laminated badge.  He was there for the long haul. The man told us his 11-year-old son had been in a very bad accident involving a horse-drawn farming implement.  The doctors at St. Louis Children’s, after 14 hours of surgery so far, had been able reattach the boy’s leg, but the man was unsure whether his son would walk again, or even wake from his coma.

When the man left to check on his son, we decided to go to the free St. Louis Zoo, along with a few hundred children from several area summer day camps.  Our timing was perfect. We arrived just ahead of the busloads of energetic youngsters.  We found a free handicapped parking spot just down the road from the zoo. We started our tour right after feeding time, so the animals were more active than we usually see.  We entered the butterfly enclosure after a day camp group had exited, but before the insects had calmed down. Our visit coincided with the internships of several undergraduate animal science students exited to share their insights. And we were ready to leave just before the thunderstorm hit.

What we learned on this trip:

• Stand! Stand! Stand! Your bones will love you for it.
• Being the parent of a disabled child hurts every day, for the rest of your life, despite your culture, demographic, socio-economic standing, religion, or other boundary-related nonsense.
• Zoos are most fun when the animals are awake.
• If you want to be in St. Louis when it rains, ask us when we will be there.

Hopefully, that’s all Joyful in Hope will have to offer for awhile. Stand, and be present now.

Peace to all.

Sara & Kyra