If you spotted my family in a crowd, you wouldn't think
anything was different about us—let alone that one of our kids was disabled. We are hiding
in plain sight but that's about to change very soon.
While my 4-year-old daughter is exactly what a child at that
age is supposed to be—opinionated, full of energy and a complete, utter
maniac—my 2-year-old son, Holton, is often mistaken for a sleeping baby. The
problem is, he's not a baby, he's a toddler, and he's typically not sleeping. He just doesn't move very much.
Our perfectly born son was severely hurt under the care of a
caretaker when he was 11 weeks old, and while we just assumed he'd be "caught
up" with all the other kids by this point, he couldn't be further from that
goal. He's been diagnosed as a spastic quadriplegic with cerebral palsy. Just
rolls right off the tongue, right? While
he does smile, he's yet to achieve any other milestone. I'm not exaggerating—that's all he can do. But what he lacks in motor skills, he certainly makes up
for in lips and hair.
I can't lie. When I first read the hospital discharge paperwork
that Holt's doctor had diagnosed him with CP, I thought it was a mistake. I always
thought it was something you were born with, not something that could "happen." After
a little light reading, I learned the truth: Technically,
cerebral palsy is a "neurological disorder
caused by a non-progressive brain injury or malformation that occurs while the
child's brain is under development." Basically, if the brain is damaged while
it's still growing, you end up with the palsy.
It's important to note that no one calls it 'the palsy' but I'm trying to make it a bit more hip. #thepalsy
Even though my child has
this devastating diagnosis, we cart him around in a standard stroller, so it's
hard to tell right away. Often people will harmlessly peek at him and gently
whisper, "Aw, looks like somebody is wiped out, eh?"
I used to reply with a bitter, "Well, no, he's totally awake. He's handicapped. Someone hurt him. He's two and doesn't move."
As you could imagine, that
was typically met with an odd silence, followed by a lower-lip bite, a head
drop and a resounding, "Oh my god, I'm so sorry." After a few months of this
absurd response, I realized I was being a complete and utter d-bag and making
things really awkward for a couple moments between me and numerous strangers.
Now I just respond, "Yep," and comically put my finger to my mouth as if to say, "Shhh." Sometimes
I toss in a friendly wink to really drive it home. Totally normal. Nothing to
see here. Moving along.
However, things are going
to change very soon because our "baby" is in the 95 percentile in height and he's
quickly growing out of all commercial strollers. Soon, he'll need a special
chair that will be akin to a handicap flare gun shot high into the air any
place we go. No more hiding behind fake sleeping monster-size babies in
It's going to be an
interesting transition because we will soon be met with curious eyes at almost
every turn. No longer can we hide behind a standard-issue baby stroller as we
make our way out for dinner or … well, that's all we really do outside of the
People will steal quick
glances of my picturesque boy-baby in his new specialized whip and wonder, "Hmm, he just looks like he's
out cold. Wonder what he has?" And I will loudly answer their internalized thought
with, "He's just sleeping!"
And, once I'm done
projecting my hang-ups on everyone I pass by (about 3 to 4 months later), I
will come to my senses and invite people in.
I used to think there was
nothing scarier than having a handicapped child. I thought the work that went
into caring for a medically fragile child would prove unbearable. I thought the
success of my child's life would be measured only by the work he accomplished
as an adult. I thought that life wouldn't be worth living.
Then my son became handicapped due to someone's cruel act and proved me wrong. Life is certainly worth living, now more than ever. I can only hope to achieve the same level of success my son has accomplished during his short time on this planet. He's inspired thousands without saying a word.
We are ready to be seen
for exactly who we are: a strong family with two amazing children that are more than likely awake.
If you want to learn more about Holt, you can follow his journey here. And if you want to purchase the doll he's holding—Holton the Elephant—you can purchase one here and help other families dealing with pediatric brain injuries through our nonprofit Holton's Heroes.