Weak Bones, Strong Wills: The Stories of XLH by The XLH Network Inc

Author:The XLH Network Inc. [XLH Network Inc., The]
Language: eng
Format: epub
Publisher: The XLH Network, Inc.
Published: 2017-09-13T03:00:00+00:00

Then and Now

by Rachael Jones

When I was growing up, there was little research and information readily available about XLH, and even less was known when my mother was diagnosed in her childhood. My mother (a spontaneous case) passed it on to both of her children (my brother and I). Other than the many doctor appointments, XLH was not something that we talked about in my family.

As a child, I didn't understand much about XLH other than that it caused me pain and kept me from growing very tall. My shorter stature is really what caused me the most frustration. I hated going into public places and having people stare and laugh at me. School too was awful at times. I couldn't participate in physical education classes like the other kids because I was either in too much pain or was much slower than the others. It was difficult dealing with physical education teachers who just assumed that I was making excuses and that I wasn't trying very hard, because they couldn't "see" anything wrong with me.

I desperately tried to separate myself from XLH. I wanted to be known for more than my aches and pains and short stature. I worked really hard in school because it was something that I could control and could actually do well. I also really loved dance. Even though I could never be a professional dancer, it didn't keep me from dancing. I started when I was two and have been dancing for fun ever since. However, I have injured my knees many times while dancing and have had several knee surgeries as a result. I have since learned to do different types of dance that are less strenuous on my knees, and I have learned how to listen to my body and to rest.

Once I became a parent, the way I viewed XLH changed. It was something I could no longer ignore. My husband and I decided that we needed to learn everything we could and to work to give our children the best medical care possible. I began researching XLH and was so happy to find The XLH Network, Inc. It was such a blessing to find research, information on XLH, and a group of people that knew what it was like to live with XLH.

As a parent, I am vigilant about keeping up on the latest research, finding qualified doctors with knowledge of XLH, and making sure that my kids do not miss medication doses. Most importantly, I hope to teach my children how to deal with the teasing they will experience throughout their lives. When I go to pick up my kids from school, there are children who laugh at me and call me names because I am short. My children are watching how I deal with it. When they look at me, I hope that they see someone who stands with grace amid adversity. However, I also hope that I can be honest with them that though I don't focus on the teasing, it still hurts.

Download

Copyright Disclaimer:
This site does not store any files on its server. We only index and link to content provided by other sites. Please contact the content providers to delete copyright contents if any and email us, we'll remove relevant links or contents immediately.