Showing Some Skin - Part 1

Dresses have not always been a go-to choice for me, but, with the summer Austin heat, they’ve become an essential item. When considering the purchase of any new summer dress, I can guarantee it will be worn.

In my past, I shied away from dresses for three reasons:

1.  My style was never described as ‘girly’ growing up. I wore mostly jeans and tee-shirts until my senior year of high-school when my best friends would beg me to put on a dress.
2. Even when I wear a dress, I love my dresses to be black. Black will always be my go-to for dresses over any other color.
3. I was hesitant to show off my legs too much. Here’s why:

Rickets

I was born with the genetic children’s bone disease, Rickets. Rickets means having a vitamin D deficiency, which causes a lack of absorption of calcium and phosphorus. My type of rickets is X-linked hypophosphatemia (XLH) which causes bone softness, short stature, and bowed legs. Luckily, my parents knew to watch for rickets when I was a toddler because my mom also has rickets.

Treatment

I started receiving treatment at age 2 at the Shriners Children’s Hospital in St. Louis, and I was treated by my doctor and nurses there until I was 16. Part of my treatment was taking 2 different supplement pills together between 2–4 times a day. When I was young the number of pills per day was low since my body was small. In my teens, when my body was finishing growing, I was taking 6+ pills per day. One supplement was to provide the vitamins my body was lacking and the other was to help my body absorb them. Quarterly, I would need to complete lab tests (blood and urinalysis) and send the results to Shriners, so my doctors could assess if my medication was being absorbed correctly. If I was not getting enough, the doctor adjusted my medication as needed. Yearly, usually in the summer, my family and I would road-trip from Oklahoma to St. Louis where I would stay at Shriners hospital for one week.

During my week stay the doctors and nurses would run different tests on me to track my progress. I was required to be on the same diet every day of that week, because I was doing a week long urinalysis test so the doctor could monitor my nutrition. The other tests included measuring my bone growth, testing my muscle strength and flexibility (which I loved because as a competitive dancer and I knew my muscle strength would impress my doctors , running lab tests, blood tests (which happened every Thursday morning starting at 5am and ended at 7am), x-rays, bone density test, ultrasounds on my bladder and kidneys to be sure that calcium wasn’t building up in either place, and I took yearly photos to track my physical appearance. (I loved the photo session because, as a confident little girl, I imagined this was my swimsuit modeling opportunity. The photographer never wanted my model poses though… ha!) Between the tests, I would entertain myself with movies, games, and writing in my journal. I would do dance performances for the nurses, who took care of me every year in my hospital wing. And, I’d join the other children in the hospital in the recreational therapy center to do art projects and play team games or hospital wide games, like Bingo (a favorite for my mom and me).

When I turned 4, my doctors decided to have me wear leg braces. So, while I was in preschool, from October to April, I wore leg braces. I had a brace for each leg and they were attached to white, ugly tennis shoes. They allowed me to bend my knees enough to walk, but I couldn’t bend my knees very much or very well. I remember trying them on and trying to walk for the first time down the hallway of the hospital. My mom and one of my nurses were helping me grip the hall railing. I remember giggling at the preschool coloring table because no one could sit across from me. My legs had to be straight up on the sit across from me.

Beside the ugly, white tennis shoes, the worst part about having leg braces was that the well-loved movie, Forrest Gump, was released two years before I had my leg braces. In the movie, Forrest also had leg braces and several mean kids mocked him for it. So, occasionally people would joke with me and relate me to the movie. (Why anyone thought it was a good idea to mock a 5-year-old with a disability is beyond me.) Thankfully, I was young enough I couldn’t remember watching or understanding the movie. My parents did a great job keeping me away from the movie and the immature adults making jokes about my childhood disability. To this day, I still haven’t seen Forrest Gump. 

Being in the hospital was routine for me. I can’t remember it ever fazing me that I had a disease or needed to be in the hospital yearly. I was just positive and happy, because I always had fun playing at the hospital. Each year I made new friends with the other children in the hospital, who almost always had conditions worse than mine. I don’t remember pitying myself for being so physically different. I was too focused on dance and being a kid.

(Read part 2 here.)

(Day 65)