Blog Down SyndromeOne year and 354 days ago, Christian and I found out that our newborn daughter had Down syndrome.


It is news to make you reel. It was more than an hour before we caught our balance enough to start thinking who we needed to call. I’m not even sure we started with our parents. I think the first phone call was to our pastor, because we knew there were families in the parish whose children had DS, and he could tell us who they were. Msgr. must have gotten busy right away, because that was Friday morning, and on Monday when we arrived home from the hospital, there was a letter in our mailbox from Gene.


Gene was a hospitality minister at the parish, someone I knew by face and name and ministry, but nothing else. I didn’t know he had a grown daughter with Down’s, the 3rd child of four. I did not know, although I might have guessed if I’d ever thought about it, that he was one of those unprepossessing, soft-spoken people who stand in the background, emerging only to touch a person in their moment of greatest need, and make all the difference.


That was what Gene’s letter did for us. Multitudes had offered, “My (fill in the blank) has a (fill in the blank) with Downs, and I’m sure they’d be happy to talk, if you want to.” He just stepped in and did it.


Dear Kate and Christian,


Congratulations to you on the birth of your daughter. With loving parents as co-creators with God, she has to be beautiful. Because she is born with Downs Syndrome, you may cry a bit (I did when Meghan was born), but I can assure you that your tears will turn to joy. All you have to do is return the love to her that she gives to you.

Trust in God, your co-creator. He will take care of you. He assures us of that by telling us that “even the hairs of your head are numbered.” Believe in Divine Providence. As Pope John Paul II said, “In the realm of Divine Providence, nothing happens by chance.” I certainly found that to be true in my life. Everything turns out for the good, though at the moment of happening one may not see it that way. God has blessed you; He will continue to bless you—that is my prayer.


“She’ll be the love of your life,” he told us the next weekend at church—and over and over again during the last two years. Since Julianna came to us, Gene has become a weekly fixture in our Sunday mornings, seeking us out in the church, the gathering space or the parish hall. “How are you doing?” he would ask, his lined face crinkling into a smile infused with serenity and absolute certainty that we were all doing just fine. It was a totally different question than when anyone else in the world asked it, lacing it with deep solicitude and sympathy. Several times in those early months, I nearly broke down, just hearing his faith in me pouring through those words.


The next question was always, “How’s my girlfriend?” He would hold her, snuggle her, even in the early months when she cried if anyone but Mommy or Daddy touched her. He pronounced her name the Spanish way, with an “H” replacing the “J,” and he called Alex “Allejandro.” I never knew why…he was as Anglo as could be…just assumed he had some connection with the Hispanic ministry. Several times, we talked about having another child. “I’m so glad you want more children,” he said. “So many people are afraid, and there’s nothing to be afraid of.”


Frankly, we were afraid, but there was something so peaceful in the way he spoke that I felt my tension ease. I asked how old Meghan was when her younger sister was born. “Twelve months,” he said, and when my jaw dropped, his face crinkled again. “So you two better get busy!”


Over time I began to seek him out instead of waiting for him to find us. It was as if he and our family became gifts to each other—gifts that stayed with us throughout the week in between those encounters. We never took time to get together outside of church, but we spoke of him often between ourselves.


This past Sunday, choir warmup ran late, and we had a prelude and a piece to re-teach to the assembly before Mass began; Sunday school was not open, and so Alex, Julianna and I ran back and forth several times trying to find out what was going on. My third trimester hips were buckling beneath me, my lower back spasming, and although I think I saw Gene in passing, I didn’t have time or energy to stop and talk. It never occurred to me that I might be missing my last chance.


Gene passed on unexpectedly last night, and the world is a poorer place for it. But Heaven is richer. May God grant me the grace to pass on his legacy of love.