One of the blessings of childhood is that you never really understand how hard it is to be an adult.
I’ve made no secret of my child’s health concerns. And we have done what we can to raise awareness of both congenital heart defects and her pain condition, reflex neurovascular dystrophy.
I belong to online message boards, support groups for other parents whose children suffer from the same condition. It’s tough to read their messages. So many children have it so much worse than my own.
That isn’t to say my daughter’s life is easy; far from it. We have to plan in advance not just for a day out or a vacation, but also for the possibility of her getting weak or sick during that outing.
Do we have room in the vehicle for her wheelchair should she need it? Are we going someplace where wheelchairs can be rented or borrowed? Do we have all of her medication? Do we have a light jacket to cover her arms if the wind starts to hurt her skin? Is it a heavy enough jacket to protect her from the rain should the weather change?
Does everyone in our group have her list of medications in case of emergency? Are everyone’s cell phones charged? Where are the closest hospitals? Does everyone have her cardiologist’s phone number?
My daughter is 20 now — the age where she’d rather not have her parents and family fussing over her. Yet her illness inhibits her freedom.
All she wants is to be “normal.” To be able to use her wheelchair or a handicapped cart in peace and without judgment from the ignorant.
“Aren’t you a little young to be using that?” we hear. Oh, how we wish that were the case, that illness had age limits. “Leave those carts for people who really need them,” we hear.
Scorn, disdain, ignorance show through so often when one dares to be handicapped in public.
As an adult, it’s difficult not to launch into a tirade against these people. Instead, I try to smile and walk away.
While we hear ignorant comments, we are often met with shining examples of the kindness humanity has to offer. My daughter’s wheelchair is heavy. Often, when I am taking it out of my vehicle, someone will stop to assist. Some stores in larger areas, like Jamestown or Buffalo, N.Y., have staff who actually pull racks out of the way to allow for easier passage of a wheelchair. We’ve even had salespeople who will offer to take things down for my daughter to examine as she shops.
Recently, here at the Era, we put together a special section on people who live lives of distinction. It was very easy, but very hard, all at the same time. It’s a wonderful feeling to be able to say we live in a community where there are so many shining examples of kindness and generosity.
One of the questions we asked those recognized was who they would choose to honor and why. We weren’t able to use all the responses for a lack of space, but it was wonderful to read.
I’ve thought a lot about who I would choose to honor, and I have decided it’s my daughter, Emily.
She has led a life that not many could. Surgeries and pain, being misunderstood and shunned because of her health — none of it keeps her down. She is a pleasant, intelligent, kind and funny person. She smiles through the pain, laughs through the tears, perseveres through the misunderstandings and continues to be the best person she can be.
Along with Emily, I choose to honor those who are handicapped and persevere. It’s a tough path that not many understand.
Long ago, I was interviewing a man running for public office. He had been off work for some time because of a health issue. Knowing some might make an issue of this, I asked him what he would say to the doubters. I will never forget his answer.
“I would rather sit with the handicapped than stand with those who would hold a handicap against them.”
How right he was.
Schellhammer is the Era’s associate editor. She can be reached at marcie@bradfordera.com.
