Reflections is a series we are resurrecting from the archives with articles old and new, chronicling our journey with Down Home Ranch and our new venture with Point Rider. We hope you'll join us on our new path.
Jerry, Kelly and I signed up for the National Down Syndrome Congress Convention held last week in Dallas. This is a terrific chance for parents and professionals to get the latest information on the medical, educational, psychological issues affecting our kids. I signed up for the conference and Jerry as an exhibitor for Point Rider. We were anxious to introduce our new project to the people it would mean the most to.
Kelly brought her friend Kristen and they attended the Youth and Adults track at the convention, loving it as always. They enjoyed our nice hotel and especially the pool too. I must say they were model citizens the whole time.
Also very exciting was seeing our friends Nurmat and Dina, with two little ones with Down syndrome, and three and 11-year old boys. They have a Down syndrome outreach in Kyrgystan, where people traditionally have believed that people with Down syndrome can do nothing more than sit in a corner and drool. Precious few families will take their babies with DS home, shunting them off to orphanages where they rarely survive for long.
We also saw our friend Dolores Zarate who began and runs a wonderful program in Brownsville called Down by the Border; Dolores is a parent also. We saw friends from Guadalajara with their little one.
It put me in mind of when our second-oldest daughter Martha, then a junior at the University of Texas, Austin, and I left baby Kelly with the grandmas and headed to San Antonio for the 13th Annual Convention of the NDSC in 1984, five weeks after Kelly was born.
Our family had been wonderfully supported by our pediatrician, Dr. Ana Garcia, but Kelly’s condition was a big blow to us nonetheless. On top of the diagnosis, Kelly’s blood showed suspicious cells typical of leukemia, so in addition to trying to recover from childbirth and the DS diagnosis, we soon found ourselves in the pediatric oncology suites of a local medical center. Still reeling from Down syndrome, we were devastated at the idea of losing our already much-loved baby girl and heartbroken at the pain she had to endure from the marrow harvest and blood tests.
We’d only just received Kelly’s karyotype, which showed her not to have the expected Trisomy 21 but something even our doctor had never seen: Tetrasomy 21! This meant she had not one, but two extra 21 chromosomes. Surely this could not be a good thing.
We loaded up the car and headed south. I had been reading every book I could get my hands on and had learned that the keynote speaker was to be Dr. Jerome Lejeune, the French physician who discovered the cause of Down syndrome in the extra 21st chromosome a few decades before.
Once at the conference we were amazed at the sight of so many energetic, happy families and their kids of all ages with Down syndrome. The first workshop I went to was given by a doctor from the City of Hope in Duarte, California. It was titled Leukemia and Leukemoid Reaction in Down Syndrome. I sat through the presentation, learning that leukemia is indeed overrepresented in the Down syndrome population. However, chatting with the doctor afterwards about Kelly’s condition, he reassured me warmly that it would most surely go into remission, and she would face no greater odds of developing true leukemia than any other child with Down syndrome.
After the keynote speech by Dr. Lejeune that evening, I stood in line clutching Kelly’s karyotype, desperate to speak with him. Reaching the head of the line at last, I said nothing, but handed him the paper.
Dr. Lejeune studied the report carefully for a minute, then looked up at me with a big smile and said in his strong French accent, “Zis worries you very much, no? But not to worry. I have seen zis, and it make no difference! Very rare yes, but make no difference! She will develop as any other child with Down syndrome.” (I desperately wanted to grab his hands and kiss them but I restrained myself.)
The rest of the weekend was spent in one gigantic sigh of relief, after, of course, with many calls home to relay the good news to Jerry and the grandmas. I often wonder if the people who run the NDSC and work so hard on our behalf have any idea of the tremendous impact it makes in our lives.
I know everyone there has a story to share about the NDSC Convention. We all soon each other the convention as we did from the formal workshops, and the Exhibits Hall is a treasure trove of creative responses to the challenges we all face.
And it was a joy to meet older parents, like us, at the convention. We face head-on the implications of the question we have asked ourselves every waking moment of our lives since our children were born: “What will happen to my child when I am gone?”
Several people stopped by to thank us for Down Home Ranch and our work with Point Rider—as we continue to work to create affordable and attractive communities for people with Down syndrome and other conditions.
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