Where’s Chuck Woolery When You Need Him?
“John and Susan Smith you’ve just won a brand new baby!! Come on DOWN!!” A game show announcer excitedly booms from the middle of the stage, “Charlie, tell them what they’ve won!”, the game show host adds.
So John and Susan walk excitedly to the stage, carrying a little bundle wrapped in blankets, unsure exactly why they’ve been called out in a room full of brand new parents.
“John and Susan”, Charlie booms through his mic that fills the auditorium, “You’ve just been chosen to be the parents of a very special baby. This baby is just like all the other 692 babies in this auditorium, except this one has a little extra”. John and Susan look puzzled at each other. “Extra what?”, John asks. “Well John”, Charlie begins to explain, “Your baby has what’s called an extra chromosome. But it’s not a bad thing at all, it just means that some things in your life are going to be a little different because of this extra genetic stuff. And don’t worry, your baby’s not the only one out there with this extra chromosome! No, no, not at all! Just take a look at this slide show on the screen on the stage, you’ll see that all different kinds of babies, of all colors, from every country in the world, have been chosen to have this extra chromosome. There are thousands of them around the world, and look at how they live! They’re just like every other baby; they eat, they sleep, they giggle, they coo, they smile, they sleep, they sit, crawl, stand, and motor all over their homes. They have big brothers and sisters who carry them everywhere and dress them up with the dog. They go to parades, play in the mud, eat sand, swing on swings and play hide and seek just like every other baby out there. They have GREAT lives and love their families very much, just like every other kid!!”
John and Susan watched the slide show carefully and they immediately saw that there was something different about all those babies from all over the world, and that was in how they looked. “But Charlie, those kids all looked a little “different” than the other kids. Their eyes were slanted, almost almond shaped, even if they were Caucasian. And they seemed to look a little, I don’t know how to say this, “squishier” than their brothers and sisters at similar ages.” John questioned, “You’re absolutely right John! They often do have a different appearance than their same age peers, and at first their muscles are a little “squishier”, for lack of a better term, and that’s a direct result of that extra genetic material, but don’t let their looks fool you, these kids are incredible: they have very strong personalities, they learn how to walk, crawl, run, ride bikes, ski and play soccer in their own time. And they seem to have an intrinsic ability to overcome any obstacle, and many of them have the uncanny ability to read what’s on your heart before you even have the words, and will come to you with a quiet hug, or will know when to reach for your hand even if it seems out of the blue to you.” Charlie answered. Then he paused and used a more somber tone, “I don’t want to say these kids have magical abilities but we’ve been watching these kids for years now, especially since families all over the world stopped putting them in giant brick and mortar buildings where they died at very young ages (shocked gasps rippled through the auditorium), and what we’ve seen is that for the families who choose to look at these babies as the precious prizes they are, something transformational happens in the very fabric of their family structures.. Moms and dads come together and somehow get stronger. Like, even if they were happily married before, they somehow get more joyful, more resolute, and more grateful for the little things in life. They learn to appreciate the smallest things, that the rest of us don’t even see. If these babies grew up with brothers and sisters, often times the brothers and sisters became really nice young people and grew into adulthood with a maturity and a vein of unselfishness that’s often not seen in many Western societies. We’ve also seen rocky marriages get better in the presence of these babies. We have no idea what it is exactly, because every family is different, but for the parents who choose to be a parent to these special ones, they become calmer, their waters begin run deeper. It’s almost as if these special babies give their parents a new lease on life, a new found purpose for living, even if the parent thought everything was great before the baby was born.” There was a long pause of silence in the building.
“Excuse me!! Excuse me Charlie!!”, a voice rings out from the back left of the packed auditorium. It’s a woman in her mid-30’s. She’s given her newborn bundle to her husband sitting beside her. “I know what you’re talking about!”, all heads turn toward her, “My best friend in high school had a brother who looked like the boys in that slide show. He was a little shorter than the other boys and sometimes he had to say things over and over so you could understand him, but he was a great kid. My best friend and her siblings were VERY protective of him and made sure that he played in all the games we did out on their front lawn. If any of the neighbor kids would tease Brett or try to make the game so Brett couldn’t play, my best friend’s brothers would go ballistic all over him!”, she continued with a winsome smile in her voice, “Brett made us laugh with all the funny things he used to do. I loved being around him, but I don’t know exactly what it was, it was just something special about his heart. It just made me want to be a better person…..”, she paused for a few seconds, “After growing up with Brett I’ve always made sure that I look for people who look they might need some extra help.”
“Excuse me!! Over here!”, another voice, a man’s, popped up from the other side of the auditorium, “Charlie, I remember my mom telling me about her special sister when we were growing up. I remember my mom saying that when her sister was born the doctors almost refused to let my grandma and grandpa take her home from the hospital. They wanted to send my Aunt Ginny directly to an institution because the doctor said that she had NO CHANCE of living any kind of life: that she would be sickly all of her life, that she would most likely die before the age of three, that she would never learn her name, never recognize her own parents, and never be able to learn ANYTHING, EVER. In short, they said, it would be better for everyone if my mom and dad just left the baby at the hospital and then tell everyone the baby died at birth. I guess my grandparents were really, really stubborn people because they raised such a stink at the hospital demanding to take their baby girl home that doctors didn’t feel like they had a choice, so they let them take her home. My mom says my aunt Ginny did have some health problems at first,” he paused, “You have to remember, this was in the early 1950’s, so medicine was nowhere what it is now”, he added, “But my mom said Aunt Ginny was the BEST thing that could ever happened to their family. My grandma refused to let anyone talk down to Aunt Ginny and she refused to let anyone, especially my grandpa, “baby” her in any way, just because it took her longer to learn things. She insisted on teaching her how to read at home, because she wasn’t allowed to go to public school. She taught her how to do everything around the house: sorting and folding clothes, my mom said she would make up counting games as they folded the towels and washcloths, she taught her how to sort by putting away the dishes and the silverware, and she taught her how to make all the beds. But it wasn’t like she was turning Aunt Ginny into the family maid….No, they played TONS of games. My mom says Aunt Ginny used to beat everyone at Gin Rummy, Hearts, and her favorite game of all was Monopoly. I guess my grandma thought it was really important that Aunt Ginny know what money was so they spent hours and hours playing Monopoly so Aunt Ginny would be able to buy things for herself in the stores”. He continued with a catch in his throat, “My mom always says that she wouldn’t be half the person she was if it weren’t growing up with Aunt Ginny. She said everyone could have their Captain America or Superman, she had her sister Ginny as the best hero anyone could ask for”. He sniffled and sat down.
“Well there you have it, John and Susan”, Charlie said, “You’ve got a very special baby there!”
“But wait!”, Susan interrupted, “You’ve told us this baby has an extra chromosome, we’ve seen that kids with this extra chromosome do look a little different, someone said doctors used to not even let these babies go home from the delivery room, and that they had massive health problems. We need to learn more about this!! Who’s going to help us with this whole thing?”
“Susan, I’m SO GLAD you asked that. I was hoping you would!”, Charlie chimed in, still as enthusiastic as ever, “It just so happens that when you leave this stage, there’s a door with a star on it in the back hall and it’s packed with people who want to answer your questions. Most of them are parents of these kinds of kids, but there are few really sharp doctors, and therapists who can answer your questions. ” “And don’t worry”, he added, “These are the kinds of doctors who believe that every child can achieve great things and that all children are learning all the time, at their own individual developmental levels. You’ll find great support in that room, and I have no doubt that you’ll be making all kinds of new friends in no time at all!” John and Susan looked visibly relieved and everyone in the auditorium gave John and Susan a standing ovation as they went through the curtains on the back of the stage.
It was the kind of meeting where people didn’t just rush out the door, even though they all had newborn babies to attend to. Many were standing around in small circles talking with one another, when suddenly John and Susan appeared back at the microphone at the center of the stage much to everyone’s surprise. “Charlie? You there?”, John spoke into the mic, “Yes, John, I’m up here in the booth, what can I help you with? Did you not find the room with the star on the door?”, he asked. “Oh yes, we found that just fine. And we even went in and met a few people, but then we wanted to ask you about this while we had the chance: As we were finding that door, we passed one with a sign that read “Hope” on the front of it in glittery and shiny lettering. What was that door for?” “Ah yes, the door of Hope”, Charlie paused, “That, John and Susan, opens up to a packed room of the 300 plus families here in the United States who are anxiously waiting to adopt a baby just like the one you are taking home today. You see, there are enough of these kids around who are enriching the lives of our neighborhoods, our churches, our little leagues and Girl Scouts, and schools, that it seems everyone wants to be chosen to be the mommy or daddy for one of them. In fact, being a parent to one of these special babies is apparently SO life changing and SO miraculous, that many families have adopted more than one of these precious children. So inside the door of “Hope” you’ll find parents who would give ANYthing to be in your position today: getting ready to embark on an incredible journey.”
The auditorium fell to silence and stayed there for a few seconds when all at once 50 families stormed the stage and exited stage left to go find the door of “Hope”.
Fact or fiction? Obviously the scenario is of my own design. But the facts are facts:
*This “thing” we call Down syndrome is just extra genetic material on a gene (on the 21st for those of you keeping score at home). It’s not a disease, it’s a life long condition. It’s no one’s “fault”. In many cases of Down syndrome the extra genetic material happens at the first stage of cell division.
*Doctors used to (and some practicing neanderthal medicine still do–stay FAR, FAR away from these ignoramuses) give a death sentence to babies born with Down syndrome and they WERE whisked forever away from the loving and yearning arms of a now-brainwashed mother, to be forever warehoused in institutions. (These institutions still exist today and we as a society should be gravely ashamed. I’ll save that for another post.)
*The life expectancy of people with Down syndrome, until the 1980’s was somewhere around 35. Now people with Down syndrome who grow up in families where they learn to set the table, dress themselves, vacuum their own rooms and take out the trash on trash day, grow up and get jobs of their choosing, volunteer in their communities, teach Sunday school, and do just about anything they want until the ripe old age of somewhere in their 60’s-70’s.
*Do people with Down syndrome have health issues? They certainly can: that extra chromosome CAN be tricky: our babies do have a higher incidence of heart anomalies as a result of the extra chromosome. The GREAT thing is there are fantastic pediatric cardiologists all over the country (particularly Boston Children’s Hospital) who give every ounce of their energy, expertise, and wisdom to working with our kids. They DON’T treat our babies as less-than-human or “disposable”. But, yes, there ARE still doctors out there with that archaic and criminal mindset. Watch out. Our babies can also have a higher incidences of ear infections, and issues with tonsils and adenoids, due to the very small “plumbing” (sorry for the highly technical medical term) in their eustachian tubes and sinus cavities. Is Down syndrome a death sentence? Hardly? Does it mean your child will never be able to run, jump, swing, ride a bike or swim? Not even.
*There are parent groups all OVER the country who are waiting with open arms to talk with you and answer any and all questions you might have. There are NO “dumb” questions when it comes to bringing home a baby with an extra chromosome. There ARE things that our kids do at different times than their peers and having someone “who’s been there/done that” is at times, the only thing that keeps you sane. Regardless if you’re an extravert or profound introvert, it will serve you on every level of your life and mental well-being to seek out other parents along the journey. We ALL need each other, it’s just that having a child who’s different can often magnify that need.
On a side note: If you run in a highly competitive “mompetition” type crowd, now would be a good time to evaluate what’s really important here on planet Earth. If having the first baby on the block to sit up, walk, read the Gettysburg address, or recite “El Capitain” is a deal breaker for you, congratulations, you’re about to learn what life is really all about. It may seem scary at first, but believe me, it’s worth it to learn what really matters is believing in someone no matter what. No matter what. If you thought the Filene’s Basement Sale was worth fighting over, you’re going to LOVE getting up into someone’s grill when they tell you your child can’t start school on the same day as his Kindergarten buddies because the Special Ed staff doesn’t start for three more weeks. And don’t worry, if you’re not that kind of person, there are plenty of people like me around who will gladly educate you on your child’s educational and human rights.
*There are over 300 families in the U.S. alone waiting to adopt a baby or child with Down syndrome. If you want more information go to the National Down Syndrome Adoption Network at http://www.ndsan.org, or Reece’s Rainbow at http://www.reecesrainbow.org. These are two fantastic organizations that work tirelessly to match waiting families with children from all over the world.
*There IS something special about the way our kids love those around them. But NO, they’re not always happy. Collies are always happy. Westies are always bossy. Newfoundlands are always sleeping. You get the idea. People are multi-dimensional, which by definition, means that no one is “always” anything, ever. But I digress. Back to the love………I’m 15 years into this and part of me wishes I had the answer as to what’s different about my son’s “love” as opposed to being the parent of a typical child. The other part is happy to bask in the mystery, but there are times (okay, a few times a week) that I just look at our son and get completely verklempted. He is a MARVEL: he’s endured ten ear surgeries, fought through life threatening ear infections (including having a central line installed in his chest which eventually went sepsis, because eventually all ports do; welcome to “Infectious Diseases 101”), an infant seizure disorder, has verbal apraxia (which means the muscles in and around his mouth just plain don’t work at all on some days….on top of being deaf), and he STILL has a bubbling joy about him. He is by FAR the strongest human being I’ve ever met. And not only that, there IS something special about his love. He “chooses” people. Sometimes he’ll reach out and grab the hand of a total stranger and smile. The other day at a Special Olympics fundraiser at a local restaurant he was heading back to our table after being in the front of the restaurant, but he veered off and went and sat with an entirely different family. Strangers. They were gracious and he didn’t want to leave their table. He knew where our table was. Indeed, he had been trying to get back to our table ever since we sent up to the front of the restaurant to greet people. No, he knew EXACTLY what he was doing. Maybe they needed something extra that day. They were nice people, maybe they just needed to share their warmth and understanding with someone who wasn’t going to judge them. I thanked them for their kindness as I was peeling him from their booth. They laughed.
Lately his attachment to us, his parents, is deepening, almost like he’s circling through another level of development where he’s telling us that we’re his anchor and that he’ll only trust new situations and unfamiliar people if we’re nearby. He’s been crawling up into our laps a lot more lately (he weighs 105 and is almost as tall as I am–good times!!). He’s snuggling with us in bed (‘course it probably helps that it’s no longer 147 degrees outside). And yet with people he knows, in familiar surroundings like church, or a good friend’s house, he walks in like John Wayne and doesn’t need us for anything.
*He is the best of us and we are truly blessed. If you’re already on this journey with us, it’s nice to meet you, we’re glad you’re here! If you just found out that the baby you’re carrying may have Trisomy 21 (the fancy term and more scientifically accurate term for Down syndrome), we’re really glad you’re here and I will do everything in my power to make sure you have the best information and connections to a parent group in your area. Please leave your comments and questions. Together we’re better!!