This week's common topic..."If I Knew Then What I Know Now"
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If I knew then - as a new mom, just starting out in the world of Down Syndrome - what I know now, above all, I would just relax.
When you begin the Down Syndrome journey, it's like busting out of the starting gates, running hard, and running frantically. You read book after book in between feedings and diaper changes, trying to learn all that you can about this little person in your life, as fast as you can. You scour websites looking for "facts" about Down Syndrome, and stumble upon numerous online support groups with mothers just as obsessed with learning this information as you are.
You memorize milestone charts for both typically-developing children, and children with Down Syndrome, and spend a good part of your day analyzing your newborn's every move and sound, trying to track his progress on a chart to determine if he's "on track" or "behind". While your child is awake, you worry about providing enough tummy time, enough stimulation, enough language exposure, to ensure that he doesn't "fall behind".
Doctors become your most frequent social interaction, and you very quickly learn the medical terminology necessary to understanding your child's health. Your heart skips a beat at every squeak, every cough, every longer-than-usual nap, wondering what is "normal" and what could be a sign that something is wrong. And when you decide that those signs do warrant a call to the doctor, it's not the pediatrician that you're calling...it's a cardiologist, a neurologist, an otolaryngologist...ologists who you didn't know even existed before you entered this world.
Looking back, if I could go back and repeat this journey with my current knowledge and experiences, I would just relax. I would put the books down and turn off the computer. Instead, I would let the little person in front of me be my source of education. I would let him teach me about Down Syndrome, rather than relying on others' descriptions of who my son was.
I would throw out the milestone checklists, and let my son reveal his own personal timeline. I would realize that no matter what I do, some things he will just do in his own good time...but he will do them. I would spend much more time snuggling and sniffing that sweet baby smell, and playing with him because it's fun...not because I'm "supposed to" do particular activities.
And the health thing...well, sometimes there are certain aspects of this journey that are what they are. As scary as it is, medical complications are real, and you do have a heightened awareness that most new parents don't have to experience. However, in the medical world, I would trust my own knowledge of my child more than I did. I wouldn't be afraid to question a doctor's recommendation, and would seek a new doctor when I no longer trusted ours. I would have more confidence in my abilities as a parent to manage my son's healthcare needs, and to make the best decisions for him.
Down Syndrome is a journey, not an event, and you don't need to "do it all" right at the starting line. It's okay to just relax and enjoy parenting that little child of yours, because the rest will eventually fall into place.
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I love what you said about throwing away the milestone chart and letting your child reveal his own schedule. Every child is on their own schedule regardless of the number of chromosomes. Our job as parents is to help our kids develop into the best version of "them" possible. I have found that it is very easy to get so focused on the Down syndrome diagnosis and helping our kids that we forget to enjoy them for the gifts that they are. Thank you for your blog post!
ReplyDeleteGreat post! I would love to have chucked all of the charts and books.
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