When my youngest son was four years old he lost all his hair
to an autoimmune disorder called Alopecia Areata. Over the course of a month all
of his beautiful red curls fell out, then his eye lashes and eye brows. My
heart broke on a daily basis. But he was four, and hair to a four-year-old is
not necessarily a concern. When a classmate at the snack table in preschool
asked if he’d gotten a haircut, he looked confused until another classmate
spoke up and said, “Nah, Ian’s hair fell out.” Everyone went back to their
juice and animal crackers unalarmed.
As a parent you begin imagining your child’s life when you
first see those two pink lines, perhaps even earlier if you’re a true romantic.
I couldn’t imagine what elementary school would be like for my newly bald
child. Or maybe the problem was that I could imagine it – teasing, bullying, heartbreak.
For a few months we stayed in, but then it became obvious that the hair would
not be re-growing so we resumed our life with our three kids, but I hovered
close to my youngest ready to defend him at the slightest provocation.
While my husband was traveling, the kids and I ventured out
for dinner one night at the local pizza shop. We snuggled into a booth and I
tried not to notice the obvious stares of the other patrons. The kids were
oblivious to anything odd and happy to be out to dinner for the first time
since Ian’s diagnosis. When it was time to pay, I left the kids in the booth
and went to the cashier. She told me not to worry, our check was already paid.
I didn’t understand, but she assured me another patron had taken care of our check
and wished my little boy well. I stumbled back to collect my children and made
for the exit. Driving home it finally dawned on me that the kind person who
paid our check must have thought Ian had cancer.
That night I called another parent in a distant state who
had reached out to me on a message board for parents of children with alopecia.
I related our story and told her how badly I felt that this person thought my
son had cancer and paid our bill. I wanted to find him or her and explain that
it wasn’t necessary because Ian is not dying. To my surprise, the parent on the
other end of the line asked, “Why would you do that?” I told her I felt badly.
To which she said, “If you corrected the kind stranger, he’d feel badly. If you
let him think he did this nice thing for this kid with cancer, then he feels
good.”
The next week Ian and I traveled to Hershey Pennsylvania for
a doctor’s appointment. After the doctor visit, we stopped at the Hershey
Chocolate World. We had brought our lunch and after the tour we made our way
through the crowded lobby to a bench to eat. As we passed by a security guard
he called out, “Hey young man, come here. I need to see what’s in that lunch
box.” Ian and I were both alarmed and handed over the lunch box. The guard
carried it over to his desk, popped open the lunch box and said, “Just as I
thought, you’re missing something!” At this point I saw the twinkle in his eye
and knew we weren’t in real trouble. He opened a drawer and pulled out a giant
one pound Hershey bar. Very seriously, he handed it to Ian. “I guess it
wouldn’t fit in your lunch box anyway.” He smiled and told us to have a nice
day. Ian was over the moon. He couldn’t wait to go home to tell his siblings
that the policeman gave him a giant chocolate bar! I held my tears until the
drive home and as Ian napped, I quietly wept.
More experiences just like these followed. Strangers would
help Ian on the monkey bars at the play ground. The women at the fudge stand
offered him free pieces of fudge. We camped at the beach that summer and spent
an evening at the boardwalk. Ian loved skeeball and we blew at least twenty dollars
in quarters trying to win a giant stuffed bear. There was a young couple at the
lane next to us who were obviously very much in love. The handsome young man
quickly won the giant bear and presented it to his girlfriend. They began to
walk away, but then turned and approached me. They asked if it would be okay to
give their bear to my son. All I could do is nod because the tears were already
rolling down my cheeks. An hour later Ian and his sister Addie were in line to
ride the bumper cars. My older son and his friend who tags along on most of our
camping trips, waited less than patiently on the other side of the rope for the
two younger kids to get their turn on the ride so we could go get dinner. When
Ian reached the front of the line, the attendant pulled the rope across and
told him they’d be next. I watched as this overly tattooed young man puffed on
his cigarette, and I worried about the second hand smoke my children were
inhaling. I shuddered at the giant ring in his ear which had stretched the lobe
to inhuman proportions.
When the bumper car track was cleared the young man asked my
older son and his friend if they wanted to ride too. They told him they didn’t
have tickets, but he said not to worry and lifted the rope for them to duck
under. Then he opened the gate and let my four kids on to the track before
pulling the rope back across and telling the waiting customers they’d be on the
next ride. He proceeded to allow my kids to have the bumper car track all to
themselves. They shouted and laughed. When Ian got stuck the tattooed attendant
jumped up from his chair, sprinted across the track and leapt on to the back of
Ian’s car. He helped guide him back into the fray and aimed squarely for his
brother’s car. I was awestruck. And humbled.
Most days Ian chooses to wear a skull cap to protect his
bare head from the stares and the sun. But whenever he goes out without it, we
experience an amazing grace. Again and again, I am blown away by the kindness of
strangers. If they ask, I assure them that Ian is healthy but has Alopecia
Areata. It’s an opportunity to educate people about Alopecia. But if they don’t
ask, we accept their kindness and figure there should be some perks for living
with this unpredictable and untreatable condition.
Ian is in fifth grade now. My earlier fears have not been
realized. Most of the students and staff know he has alopecia and don’t notice
his baldness anymore. It’s just like any other physical feature such as ears
that stick out or curly red hair. It’s just who he is. People do comment to me frequently
about how friendly and chatty Ian is. He loves to talk to people. He’s cheerful
and assumes the best about the people he meets. I have to wonder if this has
anything to do with the fact that he is so often treated to the good side of
people. When he was four he had no idea why a complete stranger would help him
on the playground or give him a candy bar. The only logical conclusion he could
come to is that people are nice. And so that’s what he expects of people.
I’ve often thought of these strangers who reach out to my
son. After one experience, a young friend who was with us asked, “Why did Ian
get the treat?” I told him that the person thought Ian had cancer because of
his bald head. To which he replied, “But he doesn’t, so that’s not fair.” He
has a point. Watching the kindness extended to my bald child has made me wish
that we could all treat each other like cancer victims. I am blessedly ignorant
of the real experience of cancer, but I think it is a shame that we require
something so awful to happen to motivate us to kindness. I can’t help but dream
of a world where we all treated each other with such a reverent kindness.
Imagine a world like that. Imagine if every kid grew up like my son – being handled
gently and respectfully, offered generosity and grace on a daily basis. Imagine
if we all treated each other like cancer victims.
Note: For more
information about Alopecia Areata check out The Children’s Alopecia Project(CAP) or the National Alopecia Areata Foundation.
Aw Cara, this is so wonderful!
ReplyDelete