By Joan Cronk
Conceiving a child isn’t all that complicated. The sperm meets the egg, 23 chromosomes come from mom, 23 come from dad and bingo, a child is created.In 799 out of 800 births, this process comes off without a hitch and a typical child is born. It all turns out just as expected. Except when it doesn’t. In one of those 800 births, in the 21st chromosome, one extra chromosome pops up. That child is born with Down syndrome.
That is what happened in our family when my grandson, Maxford, was born in 2004.
His birth was eventful from the get go. My daughter-in-law underwent an emergency Cesarean section but after she was out of the woods, we were all excited to have a boy to go with his older sister.
My son was the first to hear that his child had been born with Down syndrome (DS). The doctor steered him into a little room where he sat on a tiny stool and listened to the words that would shape his life. I wish I had been there to hold his hand.
The rest of us heard about Maxford an hour or so later, as we stood willy-nilly outside my daughter-in-law’s hospital room.
The doctor said the hospital would perform a blood test to verify that Maxford had indeed had been born with DS. The results would take about 48 hours.
Children born with DS have an upward slant to their eyes, and a single, deep crease that runs across the center of the palm of their hands. Later I heard about a father who spent the 48 hours waiting for the blood test results rubbing the palm of his daughter’s hand, trying to erase that fine line. I could relate to that.
Blood tests confirmed that Maxford had been born with DS.
As a grandmother, I suffered twice, once for my grandson, who would never have the life I had hoped for, and secondly for my son and his wife. Seeing their pain was agonizing.
Well meaning family and friends assured us we would adjust, that Maxford would be a wonderful child and all would be well with the world.
I felt the need to gather information and began at the hospital library while Maxford and his mom were still patients there. That was too soon. My quest found me at the library counter, head in hands, sobbing.Later I picked myself up, dusted myself off and began again.
The internet was a safer place for me to search. In the quiet of my own home, I began.
Maxford and his mother began attending school at the Universityof Washington Experimental Education Unit(EEU http://www.haringcenter.washington.edu) inSeattle shortly after his birth. I went along a few times to observe. It was there, with experienced and loving teachers and therapists, that we began to feel some hope.
The EEU welcomes children with diverse abilities and helps them to develop functional skills. Their program includes special needs children and typical children, tossing them together in a wonderful salad bowl environment. The EEU, which began in 1960, runs classes from birth through kindergarten.
Now at five, Maxford still attends EEU daily, strapping on hisElmoback pack and getting himself on the school bus. He is part of the team.
The National Down Syndrome Society website says many feel that soon researchers will be able to improve or correct many of the problems Down syndrome folks face. We can only hope.
Maxford has mastered many skills. Fortunately, he was born with no medical issues. Many DS children are born with heart problems that require complicated surgeries and lengthy recovery times. Maxford is potty trained and has been for some time. He can blow his nose (a skill many DS kids cannot do). He can jump. He plays with his younger brother and older sister, and sits for long periods of time “reading” with his short, little legs crossed. DS kids seem to have an amazing ability to bend.
However, Maxford looks different than the other kids. Children born with DS resemble each other and look like they are all part of the same big family. People stare and sometimes whisper behind open hands. It hurts to see their brows knit together as their eyes sweep over our family.
But Maxord is fortunate. He will have a happy life. My guess is he will never rob a bank or shoot a gun. He will not fight in a war. He also will never drive a car or father a child. He may at some time live independently.
Maxford’s mom buys him the nicest clothes, no hand me downs for this kid. When you have a child with special needs, you can’t afford to look shabby. His eyesight is compromised and so he wearsHarryPotterglasses that give him a preppy look that we all love.
When Maxford walks down the street with his family people may still take a second look, maybe even shake their heads and say they are glad their kids are “normal”, but I’ll bet by the time they turn the corner they realize something that we already know. Maxford was born into a loving, caring family. He is one lucky little boy.
National Down Syndrome Society – e-mail at info@NDDS.orgor write to NDSS, 666 Broadway, 8th Floor,New York, NY 10012.
Photo ofMaxfordBrown, taken byJoanCronk.