–Before I jump in, I want to ask everyone’s thoughts, prayers, good juju, positive thoughts, whatever you can spare for the Texas coast from Victoria to Houston. We have a lot of prayer warriors there and we are thinking of y’all! —
I want you to imagine for a moment that you’re expecting a child. Whether you’ve lived through these emotions or not, you can probably imagine the thrill of each parent at the idea of a beautiful creation coming from your own genetic makeup. You imagine what they’ll look like, what kind of personality they’ll have, will they have a good sense of humor, will they excel in school, will they be a bookworm or a social butterfly. There’s a constant stream of “I wonder” in a dreamy sense and wishing and praying for all the best possible things for your child. It’s only natural, right? Now I want you to imagine that someone tells you there’s a chance your child will struggle. There’s a chance there will be a need for one or two medical operations, and possible cognitive and social development delays. Would that change how you feel about your child? Take a step back for a moment. Did you experience any kind of struggle in your life? If you are a parent, has your child struggled at all? I imagine that most of y’all would answer “yes” to some sort of struggle or hardship you’ve faced in your life. Did that struggle make you reevaluate your life in some way? Did it make you reconsider your decision to have children or consider your parents’ decision to have you? I sincerely hope that your answer to the last questions is a confident “NO”, because isn’t this just all part of life? In short – if you knew your child would struggle, would it make you decide to not have children? I realize there are times in life that are significantly more difficult than others, but it all becomes a part of our journeys, our paths, and a part of who we are.
I ask you these questions because there was a recent CBS news story regarding the “eradication” of Down syndrome in the Icelandic society. A large part of the reason for this is the encouragement of pregnant women to receive a screening (similar to the one I received) which is a blood test that provides a probability of your child having a chromosomal abnormality. At the time of this report, 100% of the women who received test results that indicated a likelihood of Down syndrome chose to terminate their pregnancies. This makes me so sad for Iceland.
I realize this is a polarizing topic, but regardless of your feelings my hope is to give my readers a more accurate depiction of Down syndrome. Are there hardships and struggles and milestones we’ve not yet reached? Absolutely yes. My purpose is not to sugarcoat our life. No life is always sunshine and rainbows. But my friends let me tell you, there are a lot of rainbows over here.
The pamphlets on Down syndrome while full of accurate statistics and sometimes scary figures on probabilities of heart defects, cognitive delays, cancer diagnoses, even Alzheimer’s and lifespans, don’t speak on any of the fun things. They don’t tell you that Down syndrome babies tend to be more snuggly because of their low muscle tone, or that they tend to be awesome sleepers, even in infancy. They don’t tell you that Down syndrome children tend to adapt more easily than most, that they tend to “go with the flow”. They don’t tell you that above all, your child is simply a child, and your role as a parent is the same—to raise your child to be kind, strong, smart and independent. They don’t tell you that the developmental milestones will become even more significant and special because you know how hard your child works to achieve them. They don’t tell you that your child will make you see the world in a whole new light, full of appreciation and discovery. They don’t tell you that your child will bring out kindness and joy in a world that often seems dark.
In Iceland’s defense, I wouldn’t have known what I was missing if I never experienced it. I feel sad that there are less than five children born with Down syndrome each year in the whole society. Imagine if some trait your family has was being eradicated – a great sense of humor or brown hair or a knack for science. That’s what makes you who you are. I recognize that these traits don’t also accompany learning delays or heart conditions, but what a time we live in! We have skilled surgeons who can almost always correct a heart condition and fabulous teachers and therapists fully capable of assisting those with learning or physical delays. As someone who’s seen the rainbow side of Down syndrome, I can tell you that any struggle Regan faces will not diminish her worth in this world.
Yes, a part of Regan’s genetic makeup shows that she has Down syndrome. But she also has a great smile with two teeny dimples just like her Daddy. She only laughs when something is really funny. She has slept through the night since her surgery with only a handful of exceptions. She babbles and talks ALL day. She blows raspberries when she’s done eating. She grabs for Walter’s ears whenever he gets close enough. She’s trying to sit and crawl but we’re still working on it! She has a dramatic pouty lip that can make you laugh out loud. She loves to roll and always sleeps on her tummy. She’s the best little buddy and happy to go anywhere with us – she’s been on four flights already and (knock on wood) has done awesome on each one, including a SIX HOUR DELAY on one flight. Ok, now I’m just bragging, but you get the picture.
I hope all the lives that Regan touches will have new found appreciation for that extra special chromosome she has, and I hope one day Iceland can experience for themselves, too.