Last week, Rick Santorum and his family offered us a reminder of what really matters. When his 3-year-old daughter, Bella, born with Trisomy 18, was hospitalized with pneumonia, Rick left the campaign trail to be by her bedside. In the middle of this very heated campaign season, many of us prayed through tears for Bella’s health and added prayers of thankfulness for a public example of someone’s sacrifice made with the right priorities.
It’s a sacrifice every parent and caregiver of a child with special needs sympathizes with. Families of children with special needs are bonded by a shared experience of the joys, challenges, fears, and blessings of raising these beautiful children whom we see as perfect in this imperfect world.
During the 2008 presidential campaign, on rope lines at rallies across the country, my husband, Todd, and I met so many of these families and caretakers, and I’ll never forget them. There was an instant connection—a kind of mutual acknowledgment that said, “Yes, these children are precious and loved. Yes, we face extra fears and challenges, but our children are a blessing, and the rest of the world is missing out in not knowing this.”
Every parent struggles with juggling the commitments of work and family. Women, especially, know this well. Over the years, I’ve learned that women can “have it all,” just not all at once. For me, it was a lesson learned through the school of hard knocks, but it was one my own mother made me aware of when she calmly told me that as a working mom in the rough-and-tumble political arena, I would have to make tough choices. We all do. In making decisions about my career, I’ve put my family first, and I’ve never regretted it, although it has meant periodically putting particular pursuits on the back burner.
When I discovered early in my pregnancy that my baby would be born with an extra chromosome, the diagnosis of Down syndrome frightened me so much that I dared not discuss my pregnancy for many months. All I could seem to muster was a calling out to God to prepare my heart for what was ahead. My prayers were answered beyond my shallow understanding of what true joy could be. Yes, raising a child with special needs is a unique challenge, and there’s still fear about my son Trig’s future because of health and social challenges; and certainly some days are much more difficult than if I had a “normal” child.
Many everyday activities like doctor’s appointments and social gatherings and travel accommodations and even mealtimes and a solid night of sleep are that much more difficult, but at the end of the day I wouldn’t trade the relative difficulties for any convenience or absence of fear. God knew what he was doing when he blessed us with Trig. We went from fear of the unknown to proudly displaying a bumper sticker sent to us that reads: “My kid has more chromosomes than your kid!” He may not be the next Wayne Gretzky, but our hearts are filled with so much pride watching Trig giggle with his sisters’ puppies, or sway to the rhythm of his Little Angels DVDs, it’s as if he were hoisting the Stanley Cup.
Granted, I know I may be more fortunate than others to have loving friends and a big, supportive family I call on to help, including a husband who spends many sleepless nights with this restless little one. (And Todd actually makes Trig’s puréed baby food!) Others aren’t so fortunate, and in our thankfulness I am made more compassionate toward others who have less.
I often think now, what would we do without Trig? He’s our “everything that really matters.”
Trig is almost 4 years old now, and every morning when he wakes up, he pulls himself up, rubs the sleep out of his eyes, looks around, and then starts applauding! He welcomes each day with thunderous applause and laughter. He looks around at creation and claps as if to say, “OK, world, what do you have for me today?”
My family knows that Trig will face struggles that few of us will ever have to endure, including people who can be so cruel to those not deemed “perfect” by society. The cruelty is more than made up for, though, when someone simply smiles at our son. Nothing makes me prouder. As I explained in a Thanksgiving article, I notice it happens often in airports. Travelers passing by will do a double-take when they see him, perhaps curious about the curious look on his face; or perhaps my son momentarily exercises an uncontrollable motion that takes the passerby by surprise. Perhaps, as an innocent and candid child announced when she first met Trig, they think, “He’s awkward.” But when that traveler pauses to look again and smiles, and maybe tells me what a handsome boy I have, I swell with pride. I am so thankful for their good hearts. They represent the best in our country, and their kindness shows the real hope we need today.
My family understands that up ahead, some days will be better than others. We will adapt and juggle things and work through it. But Trig applauds the day. And that’s what he teaches us. That’s our priority, and we’re blessed by it.