Generally speaking, my health insurance company is pretty decent. In fact, where my daughter is concerned they have been over and above – up until she needed a wheel chair. I have been one of those Americans whose job choices were heavily weighted to staying with the same insurance company. When Lauren was 4, she was diagnosed with Legg-Perthes. The probable cause of this is from an active child falling hard enough on their butt to damage the head of one or both femurs – the ball that articulates with the pelvic socket. The circulation is damaged to the point that the head softens, changes shape and starts to cause problems for the child while walking. Lauren’s diagnosis was a fluke. She had broken her left pinky and while we were at the orthopedic office, I asked the Dr about the one leg that had always turned out. After a hip/pelvis exam he said that x-rays would be a good idea.
I’ll never forget standing in front of the light box after the tech put Lauren’s x-rays up. Nothing from my pediatrics rotation in nursing school was giving me a hint. When the Dr explained it, the treatment with a leg hip brace would allow the heads to reform and keep them at the proper angle in the hip socket. We had the brace custom made and for 18 months, Lauren showed her mettle. She wore it and did not stop moving. Learn to ride a bicycle without training wheels? No problem. Stop all her climbing and running and actively exploring the world? Not a chance. Ice skating she gave up on until out of the brace. Then the Dr finally said, ok, you can start tapering off. Her day of freedom was July 4th, 1990.
The complications started just before puberty. Her bones did not grow in the correct proportions, causing the pelvis to tip forward so that her tail bone is perpendicular to the floor. The lowest vertebrae started degenerating. The option is to fuse – but that will take the stress to the next vertebrae, and up until after the 5th, they have to stop. The years have not been kind. Going from an active, outdoor enthusiast to a ‘gimp’ with a walking stick has been nowhere near as hard as dealing with the numbness and pain from the nerve irritation. Towards the end of the last (college) semester, she commented that calculus is not that hard to understand if you aren’t studying with a pain level of 8 – 9 out of 10.
Lauren gave up on being a Physical therapist when she realized her disability would prevent her from being able to do the work. She became interested in wheel chairs and decided to go into mechanical engineering so she could adapt wheel chairs for individuals according to their needs. The primary goal being to make it possible for people like her to get out in the wilderness as far as possible. To be as active as possible – from a wheel chair. She researched and learned a lot over the Internet. Craig Hospital has an annual conference that attracts wheel chair manufacturers to demonstrate their wares. Lauren attended several of these, was given business cards to call when she was ready to get a job, and identified the wheel chair that she hoped for when the time came. Coincidently, one of those companies recently hired her to do outreach work. Her first job, at 21.
Last fall, her physician had agreed that a wheel chair would be appropriate for getting around campus and cutting down the wear and tear on her spine for long distances. Only one problem. She didn’t qualify for a self propelled wheel chair. The standard model was helpful – up to a point. After several months finding the parks she could use to wheel around for exercise – and losing 20 pounds, the wrists were hurting too much. Checking back on design information, she confirmed that the standard wheel chairs are not designed to be self-propelled. It can cause carpal tunnel. Back to the doctor, referred to a specialist, and everyone agreed she should be upgraded. Except the insurance company. Not covered. No waiver. Avoiding pain meds, carpal tunnel and back surgery earlier than it has to be, not in the calculation.
We had found a really good one on eBay 2 months ago. A bargain at $900 for a 2K+ wheelchair, it was still too much. And it sold.
Today I got a call. You realize how odd your life has become when the adrenalin surges hearing your child say “I found another wheel chair on eBay”. Good? Yeah. How Much? $500 on ‘Buy it Now.’ I was getting to the page while she explained that this is the chair she had identified as her ideal. The seat is the right size. It has been used for 3 months. And just to add the final touch: it’s the perfect color.
We were both excited; when I said “No point in bidding, I’m going to get it”, she was thrilled. With the new job, she will be able to pay for it over time and meanwhile, all the trails and activities she has held off from will be open again. On the COOLEST wheels. Check it out:
When arguments against abortion come up, I wonder if some of these people really understand what it takes to raise a disabled child. Aside from the medical, Lauren is also really and truly dyslexic. Both my children were planned and I never had any unplanned pregnancies. Had that happened after Lauren turned 4, it would have been a no-brainer for me to realize I could not make that 18 year commitment without taking too much away from hers.
Five years from now, I hope we will not have to search eBay for appropriate durable medical equipment, or fight for medical procedures that should be a matter of personal choice. And as many options as possible available to keep from ever having to make that choice.