Last week, Rick Santorumand
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.
Sarah Palin with her son, Trig., Jack Kurtz / ZUMA-Corbis
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.