By Leticia Velasquez, Co-founder of KIDS (Keep Infants with Down Syndrome)
Editor’s note. Today is World Down Syndrome Awareness Day.
I spent an hour today helping my 16-year-old daughter get ready for her day at the local high school. Then I spent fifteen minutes cajoling Christina to get in the school van, while battling an insistent administrator via email on my smart phone.
We won this time. Christina emerged from her room wearing her backpack, avoiding my efforts to put her coat on. I put it in the bus with her aide, who never loses her patience and sense of humor, and a little out of breath, wished her a happy two hours. They have early dismissal at her school today.
All that struggle for two hours of school!
Whenever I do a live interview on radio, callers who love people with Down syndrome (usually not their parents) call in to say what angels they are. They can be. But these people do not see some of the daily struggles with stubborn personalities. And that’s just the school administrators!
People with Down syndrome are unique in many ways, and we who raise them like to say the extra chromosome in their genetic code is the love chromosome. But, truth be told, when we’re alone, we quietly snicker about an extra stubborn chromosome. They are as loving as they are intransigent, and they require us caretakers to grow our capacity for persistence and patience.
But isn’t the real question this? Don’t all children do that?
Dr. Janet Smith complained in a recent talk near me that she took longer than her siblings to mature because she never married and had children, and thus was not stretched to give of herself beyond what she was comfortable with, she did not learn self-sacrifice.
I reminded her after the talk, of her loving care for her mother, whom she nicknamed BAM Blessed Angel Mother, or BAM. BAM had dementia and her behavior was challenging at times and outright hilarious at others. I said, “You expressed a wonderful love and patience with her, tempered with a sense of humor about some of her escapades.”
I reminded Dr. Smith that her constant care for BAM was much like mine for Chrissy, maturing her ability to give with an open heart. She laughed, “But it took till my sixties for this to happen!”
Life with a child with Down syndrome is frustrating, funny, wonder-filled, and stretches your capacity for love, creativity, patience and self-deprecating humor. (Don’t ask me about the time she kicked a CBS executive during a swanky movie premier in Manhattan!)
There is no doubt in my mind that it made me a much better person.
That’s why I feel sorry for countries like Iceland and Denmark, which see those with Down syndrome as a threat to the good of society, who openly pine for a country “free” of Down syndrome. I feel sorry for moms like the deputy editorial page editor of the Washington Post who opined that if either of her children had been diagnosed with Down syndrome, she would have aborted them. After all, “this was not the child I wanted.”
Christina was not the child I planned for, very few of us are that generous. But the most beautiful people in this world are those who give freely of themselves without counting the cost. Think of Mother Teresa.
Thanks to Christina stretching my capacity to love, (and for those unexpected bear hugs!), I’ve become a little bit more like them.
A little earlier than my sixties!
Editor’s note. Leticia is the author of “A Special Mother is Born.”