While sitting and watching Texas Children’s perform physical therapy on Ashlyn this week, I had time to reflect. My daughter Ashlyn is graduating High School this year and then pushes on to Texas A&M. She was going to OU but has decided that with her disorder, she needs to be closer to home. But believe me, she is an Aggie through and through. Nobody understands how much this means to our family unless you know the physical and mental struggles Ashlyn has been through in her short time on Earth. We are extremely proud of what she has accomplished and where she is going.
Let me tell you Ashlyn’s story…
Yes. Ashlyn is a professional model. She has been on television many times, got to chat backstage with lots of famous folks, has been in the Miss Teen Texas pageant, has modeled for Visible Changes, Academy, Oakley, and numerous others. She was on the drill team at school, has danced competitively, was in the school band, Superintendent Scholar, National Honor Society, was a state finalist in the Texas DECA competition and she is graduating with honors. And at the same time, has maintained excellent grades so she could get into Texas A&M.
All with a debilitating disorder which I will now describe:
Ashlyn has EDS (Ehlers-Danlos Syndrome). EDS is a disorder of weaken connective tissues. Connective tissues are proteins that support skin, bones, blood vessels, and other organs. EDS affects your skin, joints and blood vessel walls. There are different levels of EDS from mild annoyances to life threatening. She also suffers from Dystautonomia which was caused by her EDS. Ashlyn started to show signs when she began rapid height growth. Yep, she is 5’11” last time we measured. Often she couldn’t get out of bed in the morning, fainted more than usual, had painful joint issues (after dance and lengthy band marching drills), had frequent back pain and got migraine-type headaches that would last for days. Naturally, as parents, we told her to toughen up and be with your friends and forget about the growing pains. Her friends and family didn’t understand what was really going on with her body. It took years before her pediatrician finally said she had figured it out. This was the first case that the doctor had ever had in her office in 35 years of practice.
As I sit here watching a therapist realign her hips and reposition discs in her back that have slipped around, I am truly amazed at Ashlyn and her tolerance to pain and her perseverance to succeed. The therapist is amazed that Ashlyn is doing so well with the looseness of her joints. There are lots of folks with EDS that can’t get out of bed due to the severity of the connective tissue disorder. We are truly blessed that Ashlyn has the ability to get out of bed, that she has the drive to keep pushing everyday and has the personality to make friends easily. I think back at how she was ridiculed by her classmates and close friends. I think about how many friends she lost over the years because they thought she was making up stories to get out of doing things with them. As a parent, we thought it was laziness, growing pains, rebellion…you know…the typical teenager stuff. After the diagnosis, the school system gave her special allowances to lay down at the nurses office at any time during the day, to keep pain meds with the nurse, etc. Also, as a parent, we still have friends that don’t believe us because Ashlyn looks perfectly normal on the outside.
So, if you were one of her friends that dissed Ashlyn, you should take this as a life lesson. You never know what other people are dealing with. You never understand their daily pain to get out of bed and carry on with life while succeeding and carrying out their dreams.
I am proud of you Ashlyn! You and incredible person and someone to look up to. I admire you everyday for getting up and getting out there and succeeding! I admire your kind heart and your loving attitude. I love you and Gig ‘Em Aggies