Soon after my diagnosis my parents began peppering other parents with questions and reading any printed materials they could get their hands on. One piece of advice they were given was that they should choose a place to live and remain there permanently so that as I grew up I would not have to constantly be introducing myself to new people and explaining to them my disease (especially my short stature). Thus my parents began to pray, asking the Lord where He would have them move, since they knew they did not want to stay in the Bay Area of California, where we were currently living. They had friends who had recently moved to Spokane, Washington and were very impressed that was they place they should go. So, our family of four moved in just a station wagon pulling a small U-Haul trailer and set out for a place over 1000 miles away that we had never seen, although we knew friends that we could stay with temporarily.
By the time we moved to Spokane and I was 4 years old my parents had somehow found another family who had a child with short stature, though not Morquios, living in the approximate area and so decided to make a visit to them and use that time to reveal the diagnosis to me. I vaguely remember the visit. This family had built a house specifically adapted for their son’s height while he was a child (at the time of our visit he was in high school) but soon learned this was not a good idea. I think that made an impression on my parents. What I remember about the visit was the extreme, at least in my eyes, height of the older sister. That night when I was told I would always be short, I evidently shrugged it off.
I remember my childhood as being just like anybody else’s although I am sure that could be argued but I don’t have anything else to compare it too!
At age six I started going to the Children’s Hospital over in Seattle (the other side of the state) for six-month checkups so my medical history could be tracked. At the hospital we were blessed to find genetic specialist, Dr. Judith Hall, who had trained with a colleague of the foremost authority on MPS and Morquios. This indeed was a blessing as usually when I see a doctor it is my parents or me that has to inform them of my condition! She was able to get us on the right track as far as specialists I needed to see and what we could expect medically for the future.
At age 7 I had my tonsils and adenoids removed and at age 9 my neck was fused at C1, C2. This spinal fusion was recommended as a matter of course for people of short stature to prevent damage to the spinal column which could happen more easily than in most people. For that surgery I wore a halo cast for 133 days (the whole summer of 1982). The halo is secured by four bolts into the skull and a cast covers the entire torso. It does look a little strange and even painful to most people but the bolts themselves don’t cause any pain because they are all set at equal pressure. I remember that it took me some time to get used to sleeping in this contraption, my dad made me a bed of pillows on the living room couch and my mom helped me turn 13 times that first night, and of course it was very hot that summer, but I do not remember any pain outside of the initial few days out of surgery. At the time I had hair down to my thighs and though they had to shave some of it, it was long enough to be pulled together with a clip so the shaved portion did not show. My ever creative father rigged a way using a reclining wheelchair and covering me with protective towels that my hair could be washed. To bathe my skin he used crochet hooks to pull stocking knit material dipped in alcohol underneath the cast. He also painted my cast with Gesso paint so it would absorb odor. These things were done daily along with care to the points where the bolts entered my skull. I was able to wear sleeveless sunsuits and dresses since my cast made it look like I had a white blouse on! At the time of the surgery I met a little girl who came to the hospital to have the same surgery but unfortunately hers had to be done as an emergency procedure. She had many more problems with her halo cast than I did. She would often fall because it made her top heavy and after the surgery it was discovered that her body absorbed the bone used for the fusion which was taken from a bone bank. My bone was taken from my pelvis. We were able to schedule our cast removal on the same day, which was fun. They had to give us Demerol as they took the bolts out so we were told we looked like "The Spirit of ‘76"! For a time gauze bandages had to stay on each of the bolt points so I used cloth headbands to hold those in place. I still have little indentations at my temples but they are virtually unnoticeable. I believe we were advised that plastic surgery was available if the indentations became detracting. I was fortunate that the scar down the back of my neck did not become a problem either.
My next major surgery occurred four years later at age 13. Approximately 2 years before I had been diagnosed as having osteoarthritus and had been experiencing pain in my hips as well as unexpected falls. Upon X-rays it was found that the osteoarthritus had eaten away virtually the entire shelf of my hip joints. At Children's Hospital was a doctor named Lyn Stahli who had written the book perfecting the surgery to rebuild those shelves. In October of 1986 I was scheduled for surgery. Before that October surgery I had a total of five minor diagnostic surgical procedures in a period of four months which psychologically broke me. Up to that point I did not seem to have a problem with medical things but all of that now changed in a very unexpected and unexplainable way for me. This surgery required that I be in a full body cast (from shoulders to ankles with a bar between the legs) so I was very much isolated to home. Again, my parents rented a reclining wheel chair and did their best to keep me active. Because this surgery took place at the end of October my mom had to return to work (she is a Public School Elementary Teacher) so my dad took over my care which was pretty extensive since I had to be in diapers. I soon learned to flip myself to put my legs up against the wall, which was a big help since movement is always necessary to keep the body healthy. Before the surgery my physical therapist gave me exercises I could do while in the cast to keep my muscles from atrophying as much as possible. At that time I had started attending a small Christian school where all the lessons were on videotape so the plan was that I would continue my lessons at home. Logistically we realized this was impossible, since I needed so much help to do everything. Instead, I began to learn counted cross-stitch which became a life time hobby. Four months later when the cast came off I had to learn to do a lot of things over again, starting with sitting up, since my muscles did atrophy so much. I wasn't supposed to bear weight on my new hips for about a month but my therapist got me into frequent water therapy immediately and that really sped up my progress of learning to walk again. I was so excited and thankful to be able to move again!
I thought time would heal the psychological paranoia (characterized for me by nightmares and a fight or flight reaction to the smell of alcohol or a siren sound) I now found myself in but this was not the case. Seven years later a psychologist suggested that I begin to be allowed to be in charge of my body and what was done to or with it. This seemed to be a real key to healing for me. For more details on this journey please go to the section on Joni and Friends by clicking here.
In the 9th grade the Christian School I was attending closed so I began using the same video curriculum at home. I was still having problems with being tired a great deal of the time so it was suggested that we have my oxygen levels tested at night and that I start on supplemental oxygen at night. This was medically a good thing, but it was quite frightening for me when they wheeled that oxygen tank into my bedroom. Eventually I got used to it and I used supplemental oxygen for about five years, though we never did come up with a satisfactory way for me to receive it. We began with the cannula, wrapped it in foam, used a tube with the oxygen turned up to full volume, and finally found a way to get an oxygen tent. I was very glad when that struggle was over and I could give up the oxygen all together.
When I was 16 I briefly had contact with the organization Little People of America because of their national convention which was held that year about 50 miles from where I lived. Two of my friends, who I had met through a summer camp sponsored by Children's Hospital, who were also little people, came from the Seattle area and we had a blast. It was there that I first realized that my body was OK just the way it was and I could have a normal life as I became an adult. The major thing I became excited to find out was that I could drive a car. I went over to the University of Washington twice where they tested me to see what kind of adaptations I would need to drive. Both times they actually took me out to a vacant parking lot and allowed me to get behind the wheel.
In May of 1991 I graduated with other homeschoolers in Washington State in a full cap and gown ceremony. I officially finished my highschool courses on December 31st and began at a local Junior College a few days later. By this time my original three-wheeled vehicle had worn out and so we were able to get a second one graciously donated by the Kiwana's Clubs of Spokane. The Department of Vocational Rehabilitation paid for my coursework as well as transportation. While I attended the Junior College I looked at various private schools. The first one we looked into as a real possibility was in Pensacola Florida but they were discriminatory based on the fact that I used supplemental oxygen so I chose not to persue them. A few months later I found a school in El Cajon California, which is just south of San Diego, that I liked very much. The facilities were not the best for my physical needs, but the support I got emotionally from the faculty, and most of all from the students, more than made up for that. People were often times amazed by my ability to do things but I just did what I had to do. I graduated from Christian Heritage College in May of 1996 with a Bachelor of Science in Counseling/Psychology.
Although that was a wonderful four years, it really broke my health. For more details on my quest to gain back my health and find natural solutions to my various medical problems click here.
In May of 1997 I was privileged to be asked to be on an adult panel for the MPS Society and it was there that I met my first person that had Morquios. Then, that summer, I attended the national convention
of Little People of America in Atlanta where I met eight other people with Morquios ranging in age from 10 to 34. These were both great experiences where I learned a lot and understood that a lot of peculiar things I do aren't so strange after all but have a medical basis. I was blessed to find that my health really is pretty good.
It was confirmed to me that being caught up in a world of just small people is not really a very good idea. I did not learn about these two organizations until later in life because my parents wanted me to live as normal a life as possible and that was a blessing.
A few years ago, September 1998, a movie entitled Simon Birch came out in which the lead actor has Morquios (he was about 11 years old when the film was made). Although I don't think the fact that the lead actor has Morquios is a good reason in and of itself to go to see the movie, I have to admit that was the main drawing card for me. I enjoyed the movie because I could identify with it so much. I must add that the bad language and sexual stuff really irritated me. I have written out some of my comments on the movie and would really like to hear from others on their opinions or comments on mine.
I really identified with Simon physically, especially at the beginning. I also somewhat identified with him emotionally at the beginning, though I have never been treated as "roughly" as him (ie being held up in the air in Sunday School and then blamed for it and I can't recall exactly what else) I could see him struggling to be treated as a person his age. I loved the scene when the two boys were running to the lake because it reminded me so much of myself when I was younger.
The movie was a little unrealistic. I didn't like that Simon was on the baseball team. No one that was his size could be on a baseball team and in his case he was really used. I used to hate it when teachers would up my grades in say PE just to be kind. Why say I got a B when I couldn't play volleyball. I would rather them just waive the grade. Also, could someone his size really hit a baseball that could kill someone (I didn't catch this one since I have never hit a baseball in my life - my brother did). This is the thing that bothered me the most about Forrest Gump. I don't want to be "disliked" because of my disability but neither do I want to be made into a hero. Whether you like me or not should go way beyond my physical being. On the other hand, if Forrest Gump and Simon Birch make people stop and think then maybe they aren't that bad after all.
Simon seemed to have a personal relationship with God that was forged because of his disability and I was upset too about the low view that everyone seemed to have of God - like He is a duty. I loved when Simon took the armadillo to Joe, after his mother died, and talked about his mother's death being part of God's plan and that he (Simon) was His instrument. I saw it through the grid of Joni Eareckson Tada's excellent, tough, and thought provoking book When God Weeps. I felt Simon's indignity when he was forced to be the baby Jesus in that manger and those turtle doves sure were dumb (another example of a low view of God). I definitely don't agree with what he did to that girl during the Christmas pageant (and definitely agree with my brother that it should not be passed off by the film audience as something cute and OK because of his size) but I wonder if it was an attempt on Simon's part to prove that he was 12 years old. This is a struggle for many people with disabilities including me at times.
I don't think Simon's sense of destiny was wrong. I think it was God given and kept him going. I too agree that God has a plan for everyone's life if we will follow Him and I also have a sense of destiny. Not in the sense that I am going to be a big hero someday but that I can impact lives if I follow Him. I do believe that my disability and "suffering" has given me a special relationship with God and I wouldn't trade it for anything, including being "made whole" but this is an attitude that is not come to easily and I really hate it when people hold me up for others to emulate. The only reason I am where I am is by the grace of God. Many years ago a little girl came to my house (I think I was in high school then) and looked with big eyes at the 25-30 teddy bears I had hanging in a pet net. When she said "I wish I could have all those" I had to explain to her that I got all those teddy bears because of surgeries and hospital stays. I think that also apply to anything good or admirable people see in me.
Parents, especially those with a child that has been newly diagnosed with Morquio's (or any of the other types of MPS) may find the MPS Society site helpful. There you will find medical issues discussed as well as parental support. Another site that is good for parental support, and specific to Morquios, is a site by Mary Harings of Arizona.
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