The Teacher and the Dragon By Douglas A. Sharp, from his book NIGHT BREEZES It’s fair to say you taught me. There are some things I’ve learned A gift that is freely given often cannot be earned. I’ve seen you take the world on With nothing but a grin And whenever that was not enough You’d take it on again. I watched you face the dragon That filled me full of fear I saw you climb onto its back And whisper in his ear. I saw the dragon look at you Much as I have done It seemed to me he smiled a bit Before he ambled on. I don’t know what he heard from you Or what it meant to him But there’s never been a dragon I have feared since then I indicated in Post 8 - Ashley and Henry, at 18 months my daughter, Ashley, lost use of her hands, her face became pale, and she quit vocalizing. She sat on the floor rocking in her own world and would not make eye contact. She had one screaming episode where she grabbed her head. Rett Syndrome is a developmental …
Post 9 – Grief
Grief has to be the least sought after aspect of this worldly experience, yet it hits us all. In A Grief Observed, the Christian writer C.S. Lewis documents his emotions and thoughts after the loss of his wife. The book documents his journey through his initial anger and grief to thankfulness for the time with his wife. My cousin and his wife lost their daughter in a car wreck when she was a junior in high school. I saw then that losing a child is the worst. In my last post, I told you about Ashley Fry and Henry Engel, and their unique positions in the Rett Syndrome community. Due to Richard Engel's presence on television, the public shared in the Engel's Rett Syndrome journey. Mary paid honor to this public by communicating her experience at the loss of Henry in document that is as emotionally charged as it is well written. I am sharing Mary's text with you. Grief is powerful when love is powerful. If you have not done so already, please first read the post about …
Post 8 – Ashley and Henry
Post 8 - Ashley and Henry Two “famous” people in the Rett Syndrome community are my daughter, Ashley, and the late Henry Engel. On August 15, 2019, Judy, Ashley, and I joined Richard, Mary, and Henry for an afternoon visit in Houston. The Engels were in Houston for research involving Henry. There is a bond between parents of children with Rett Syndrome. This meeting, however, had another element to it. It was a special celebration of two individuals with the dubious honor of being among the most well-known people in the world with Rett Syndrome. Judy and Richard Engel with Ashley Clifford, with Mary, Richard, and Henry Engel Judy, Mary, and Richard with Henry and Ashley Ashley Ashley was the first person in Texas to be diagnosed with Rett Syndrome, and one of the first in the nation, after Rett Syndrome became known in the U.S. Ashley …
Post 2 – Ashley in History Class
It is heck of thing to have to start out Post 2 correcting something in Post 1, but it is what it is. 😊 One must beware of quoting by memory. In Post 1 I quoted Yeats incorrectly. I am grateful to Lane Rawlins for pointing out that the correct Yeats writing is “I spit into the face of Time that has transfigured me.” The correct quote provides a much different message than my post, which said disfigured me. Yeats conveys that he is elevated by time, not brought to a negatively implied physical state of being. Yeat’s expression reminds me of what Frank Sinatra sang in “It Was A Very Good Year”. “But the days are short in the autumn of the year And now I think of my life as vintage wine from fine old kegs From the brim to the dregs it poured sweet and clear It was a very good year” I did not relate to Frank Sinatra much when I was younger. Now I relate. 😊 If you have not heard the song in awhile I invite you to …
RAISING A HAND books Vol. 1 & 2
Kevin Black, a Houston-based musician and older brother of Clint Black, had a daughter, Courtney. Courtney had the debilitating disorder, Rett Syndrome, and she died at 16 years old. Since that time, Kevin and Dave Clements, who also serves as Kevin’s manager, have raised money for Rett Syndrome research, donating the results of their fundraising to the U.S. based International Rett Syndrome Foundation. Their biggest and latest project involves their books RAISING A HAND, volumes 1 and 2, available at Raising a Hand for Rett | Music Greats Supporting Rett Syndrome. They are available at https://raisingahand.com/ These A+ quality books are for sale for dirt-cheap prices because Dave and Kevin donate all their time and a good bit of money, as well. The book contains wonderful photos. Dave and Kevin photograph artists in concert at the time they naturally raise a hand in their show, then they contact the artists later for permission to use their photos in a fund-raising book …
Rett Syndrome
Dr. Huda Zoghbi, who discovered the gene that causes Rett Syndrome, presents Ashley with a gift shawl. Dr. Zoghbi credits Ashley with inspiriing her to search for 16 years for the cause of Rett Syndrome. My wife, Judy, and I have considerable experience with Rett Syndrome. In this section, I will share some of these experiences. Rett syndrome is a developmental disorder that seen almost always in girls. It is caused by mutations on the X chromosome on a gene called MECP2. Rett syndrome strikes all racial and ethnic groups, and occurs worldwide in 1 of every 10,000. Rett syndrome causes loss of the ability to talk, loss of hand use, problems cognitive, sensory, emotional, motor and autonomic function. Rett Syndrome potentially could be cured. It has been proven in animal models that lost function can be restored regardless of age, but much research needs to be done to find out how to do this in afflicted people. …