A Letter from a Mom

Dear Parents,

Hi! My name is Karen, but I answer much more frequently to Mom because that’s what my six children call me. I have one husband, Ron, and he calls me Karen, but he is way outnumbered - so Mom is my name most of the time. Of those who call me Mom, two, our youngest two, have Down syndrome.

Steven, the oldest of our DS children, was born in 1996. And although it’s been a while, I still remember the day of Stevie’s birth very, very well. His entry into this world was even more dramatic than the entries of his three older brothers and sister - and those all were pretty exciting in my opinion. But Steven, well goodness, his entry was even exciting in other people’s opinion too. The 911 operator, the fire department, the police, the TV news crew. They all seemed pretty excited! Steven was born in our van on the way to the hospital on a bitter cold, six-degree-below-zero Michigan winter night along a lone country road. Babies arrive when they need to arrive. At the moment of his birth there were no doctors, no nurses, no monitors, no soothing ice chips in a cup, just Mom, Dad - and God, He was definitely seeing us through, seeing Steven through, of that we are absolutely sure. And once Steven was born and Ron and I had successfully cleared Stevie’s air passages and heard his new life cry, Ron called 911. That baby of ours made it, our Steven made it, safe and sound, 10 fingers, 10 toes, brown eyes, the familiar Meier round face. We consider his safe passage into the world on that cold winter night a miracle, we consider Steven, himself, a miracle.

Ron and I have learned many things since Steven’s arrival. In those early days, the most helpful, useful, and positive things came in a haphazard, hard to find manner. And we felt that was not right. Information, support, and help should be easy to come by, easy to find; parents of newborns simply don’t have time to do research. There are diapers to change and midnight feedings and laundry and supper and a million other tasks involved in the daily lives of parents of a new baby. Boy, did we know about that!

So having helpful, useful, and positive information is vital, having it early on is… well, so important that it became our mission. We felt all parents, all families, facing Down syndrome should have the upside, the hope, and the bright future of what they are facing in hand and in mind from the very start. And so we formed the UpSide of Downs, to help families get the helpful and the useful and the positive information that’s scattered around out there early on and in a neat little package - this little book, Bright Horizons.

Speaking of neat little packages, let me tell you about our youngest child, also born with Down syndrome.

Tommy was born in a hospital (not in a van!) one early January day in 1998. And twenty-five days later we brought him home to his four brothers and one sister. That was a noisy celebration!

On that late January day Ron and I had flown in four airplanes and ridden in five shuttle buses and rented one car and gotten lost in a big east coast city in getting Tommy home, in taking custody of our adopted baby. Tommy, our youngest, is our adopted son who I forget is adopted since he’s been with us before he weighed even 6 pounds, before he was even a month old! Even though I didn’t go through the back pain, breathing pattern type of labor with Tommy, I guess you could say there was "labor" of sorts involved. Instead of doctors and nurses, there were pilots and stewardesses and bus drivers, and instead of a stork with feathers flying above the treetops, Tommy’s stork was made of metal and flew above the clouds. And at the end of it all, a tiny baby was welcomed into the arms and the hearts of his family and there was joy and celebration into the wee hours of the morning, and what once was a family of seven had become a family of eight.

Tommy was only three and half weeks old when he "arrived." His birth parents are people we’ve never met nor spoken to. That’s the way they wanted it. They hadn’t expected Tommy to be what he is and so when he was born and the doctors told them about Tommy, they were afraid, more afraid than they’d ever been with their two other children. Their baby, the doctors told them after the birth, had Down syndrome. Tommy’s parents were afraid of the label "Down syndrome," of the incredible burden they perceived it carried. It was that fear that drove Tommy’s original family away from him.

Karen Meier, Executive Director of the UpSide of Downs and Mom to Tony, Carmen, Joe, Jack, Steve and Tommy