The month of October was Down Syndrome Awareness Month. I’m a bit late for that, but am pretending I can make a virtue of my lateness by extending the awareness into the month of November. I’d like to make everyone aware of two special moms in particular, women who saved my life in the beginning, when our son was so new and his diagnosis so scary.
One is Ursula, the first Down syndrome mom I met — we had the same wonderful obstetrician, Dr. Jacqueline Worth of Village Obstetrics in New York. Ursula came to visit me when our little boy was just a few months old, and with her she brought optimism and wonderment and peace. It was like a breath of crisp country air in my little city apartment. She has continued to be a rock of strength and wisdom.
Then there is Dena, who just always showed the most unconditional love and affection for her beautiful little boy with Down syndrome, who is now 20 months old. We became virtual friends over e-mail and met in person this summer. She reassured me that my hesitations and doubts about my son were normal and that in time I would come to appreciate everything about him. She has been a model for me of what maternal love looks like when the very earth below your feet is in danger of crumbling. Her son has endured heart surgery, operations for Hirschsprung’s disease — a very painful disorder of the intestines — and most recently, leukemia coupled with multiple infections. She and her husband haven’t had a minute to relax since he was born, yet she remains a beacon of joy and her son the most charismatic little charmer, despite his many hospitalizations. We all go through times when we feel helpless, like we have nothing to offer because we are so overwhelmed ourselves. But this is rarely the reality of things. I think often of Dena and all that she has given me, even as she experienced some of the worst things life can throw at someone. Her little boy is on the mend, but please keep them in your thoughts.
These extraordinary women are just a small part of my family’s special village — the village that it takes to raise a child with Down syndrome and his two feisty sisters. Of course we couldn’t do it without the unconditional support and serious amount of help we’ve been given by family and close friends. Then there are our son’s hard-working and truly caring therapists. And the trusted babysitters and mother’s helpers who give us much-needed respite.
On top of that, though, we have been blessed with a most fabulous set of neighbors here in our adopted home city. These are the kind of people who cook food for new moms and would run out of the house in pajamas to help a neighbor in distress. They are the kind of people who would take one baby into their home when the other has to go to the hospital. The kind of people who invite your kid over for a playdate so you can get a break. Who care when a fire truck unexpectedly shows up in front of your house. (Um…that would be me ruining dinner yet again — our smoke alarm I guess gets upset by burning chicken fat.)
Just in case you thought it was possible to do all this alone, it isn’t. More on that next time.