Can you point to the moment(s) in your life that have defined you? The inciting incidents that started you on your own personal character arc? I’ve been reading Joanna Gaine’s book “The Stories We Tell,” in which she encourages us to look into our own personal origin stories. Parents of kids with Down Syndrome seem to do this naturally. When meeting one another someone inevitably asks the question, “How did you find out?” referring to whether their child was a prenatal or birth diagnosis. Even within the two camps of “pre” or “post” there is such diversity of stories. I always marvel, for example, at the healthy birth stories. The parents whose babies were perhaps, like ours, diagnosed at birth—there’s nothing that can prepare you for that amount of shock or the emotional rollercoaster that follows—but were then able to leave the hospital with their newborn in tow & commence a somewhat-different-but-mostly-normal bonding experience with their baby at home. And then there are the medical families, whose weeks & even months post birth involve NICU stays, oxygen machines, feeding tubes, surgeries, & other unexpected interventions.
At the risk of oversimplifying but for the sake of considering origin stories, I’ve tried to put into words here some “lessons learned.” I have come to appreciate the different but defining moments of different life experiences. That said, no one has a monopoly on any characteristic; & life certainly has so many incredible lessons to teach us all, no exclusions applied.
In the families whose children have always been healthy I see such amazing cheerleaders. Parents who fearlessly accept their child as they come, & do not accept any limits. So often these parents show us all how to raise our expectations, not take no for an answer, & believe the sky is the limit. Raising a special needs child always has significant challenges, but so often these parents empower all of us by simply showing us that our kids really can do & become anything with support, work, & love. They are always broadening my perspective & encouraging me to be brave. I’ve needed & relied on them so much!
Our beginning was rocky & laced with fear. Not only did we receive a birth diagnosis, but less than a week later we received terrifying news about Lydia’s heart. The first year of her life was marked by weeks of hospital stays, complicated medical equipment, life-saving medical surgeries, & one very expensive medical bill after another. The first several years of her life our theme was literally survival. I have wondered, then, what our contribution to this community is. If we don’t bring the hype, what do we medical families bring? I will tell you: We bring the heart. We bring the fight. We know what it is to dig deep when you are OUT. To face the low, low odds. To scrape up your hope from the bottom of the barrel. To empathize & wrap your arms around your peers when they are breaking in their turn. You want empathy & tears & midnight meals & pillows brought to your hospital room at midnight? We’ve got you because we’ve been there & we cannot leave you on your own. We’re not always the party, but we are the soul.
***
These are my people. And man are we ALL needed. The ones to teach us how to fly & the ones to catch us when we fall. This is what makes up our beautiful community, focused on these beautiful children & their magical extra chromosome. So many different life experiences. So many inexplicable emotions. So much incredible love. 💛💙
