That moment when a parent finds out that their baby has Down syndrome is etched in their memory forever. For me, isolated images are razor sharp. What I remember is my baby being whisked away to the NICU after delivery; a doctor with curly hair rattling off the symptoms of Down syndrome … something about a crease in the palm, folds in his eyes, and extra space between his toes; my 23-year-old husband crying for the first time since his mom died; and a gentle woman bringing me a book and photos of her son with Down syndrome the next morning.
When we launched the Sevenly campaign on Monday, I shared that the original inspiration for the Lettercase books was the parent support coordinator at the hospital who showed me a picture of her son on a bike. What I didn’t share was that Nancy’s son passed away from leukemia when he was 15. Josh was an anchor for his parents and brothers and sisters, and he was the inspiration for me on the day after my son was born with Down syndrome. He was funny, adventurous, loving, outgoing, impish, compassionate, and perceptive, and his death left a hole in their family.
On Monday afternoon, Nancy called me to say that her daughter was pregnant and just found out from an ultrasound that the baby has soft markers for Down syndrome. Despite the pain of losing Josh, they were thrilled at the prospect of having another baby with Down syndrome in their family. But, she wanted to make sure her daughter was prepared, just in case, so she asked if I could send her a copy of the the Lettercase “Understanding a Down Syndrome Diagnosis” book and Down Syndrome Pregnancy’s “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”
Thirteen years ago, Nancy shared a vision of the future with me by giving me a book and a photo. She and Josh inspired me to do the same for other expectant parents with our books, and now I have the opportunity to support her daughter. This is the full circle of moms, and it’s just one of the legacies of Josh Boldt.
It’s true that sometimes life with Down syndrome can be downright hard. Almost all of us grow emotional callouses: the first time we see our friend’s baby take their first step before our child; the first time we have to look a teacher hard in the eye at an IEP meeting and tell her our child will be included in a regular classroom and that it can be done; and the first or fiftieth time we hear someone casually toss around the word “retarded.” For a small minority, like Nancy, they cope with health challenges that can be all-consuming.
And yet, 99% of parents say they love their children with Down syndrome, and Nancy and her daughter were excited to find out that the baby has soft markers for Down syndrome — even after battling leukemia for years with Josh.
The thing is that, most of the time, life with Down syndrome is remarkably ordinary and includes family vacations, sibling squabbles, outings with friends, and school activities, with a few extra doses of therapy, annual IEP meetings, health insurance battles, and medical appointments thrown into the mix.
What I’ve learned is that people with Down syndrome are unique individuals with their own strengths and challenges, and this has given me a greater appreciation for the individuality of all people. My son truly struggles with reading and math, but he’s an amazing photographer, an avid mountain biker, and tech wiz like his dad. I’ve also learned that people need information and support right away in a moment of crisis, and the compassion of others can change our lives in profound ways. For that, I’m grateful for the extraordinary full circle of moms, especially Nancy and Josh.