“I don’t know how you do it.”
“I can’t imagine.”
“Your child is so lucky to have you.”
“You’re so strong.”
As parents of children with disabilities, there are certain phrases many of us hear over and over again. I don’t mean to belittle the people saying them because these people are simply trying to express sympathy and support in the best way they can. I’ve always taken the phrases in the spirit with which they were intended and never been bothered by them. All except the last phrase, that is. You’re so strong. I never liked this one—probably because I have never thought of myself as a particularly strong person. I was a nervous, shy, anxious child and have grown into a sensitive, worried, cautious adult. From the outside, I’m nobody’s idea of a hero.
At first, I merely brushed the phrase off. They don’t know what they’re talking about, I thought. These people hadn’t seen me in tears at the gym. In the car. At the dentist’s office. In Panera. Someone who cries so often and feels so much can’t possibly be strong. I’m not tough. I’m just someone trying to get by.
But the more time I have spent in the special needs parenting world, the more I have come to realize that we all have different ways of being strong. One person’s way might not look like another’s, but that doesn’t mean it isn’t valid. Every strong parent helps their child learn, thrive, and grow in some capacity.
One of the best things about being in this world is the people you come across. As I’ve thought more about the word strength and what it means, I’ve enjoyed trying to puzzle out the different ways in which the parents I meet are strong. I think it’s important for us to notice and appreciate the different kinds of strengths that are at play all around us because he larger world contains so much anger and derision based on the ways in which people differ from each other. We don’t need to bring that dynamic to our own little corner of the world. We need all the kindness, grace, and understanding we can get. If we are different from each other, then let’s celebrate it. It’s what we celebrate about our children, after all.
Once I began looking, the first type of strength I noticed was probably the one all of us would spot first: stoic strength. This probably best fits the ideal of what most of us think it looks like to be strong. Stoic people are impassive, calm, self-controlled, and unemotional. It’s at the opposite end of the spectrum from the vision most of us have of female caregivers, but this type of strength is not limited to men. In fact, some of the most stoic parents I have come across have been mothers. One of them sat across from me at the first parenting support group I ever attended. This woman suffered from MS and was raising two boys on the autism spectrum. Her husband had to leave the workforce to care for her children, so the family’s financial burden rested entirely on her shoulders. Year after year she had to continue working—through pain, stress, fear, and illness. Yet her manner was one of unflappable acceptance and quiet calm. As she explained her situation, she never once complained. Since this first meeting, I have come across many other people like her. Single mothers and fathers bearing their children’s burdens by themselves. Parents with serious health issues. Parents who have more than one special needs child. Parents who have little money or no insurance. These people have so many obstacles and struggles, yet shoulder their responsibilities with good grace and without complaint—the way the rest of us only wish we could.
Other special needs parents have strength that lies elsewhere—in their ability to focus on the positive and find the hope hidden in any situation. No matter the setbacks or struggles they face, these mothers and fathers are able to get up the next day filled with faith that things will get better and that the future will always be worth living. These people aren’t deluded, however. They have a clear-eyed view of the obstacles at play in their lives. They simply don’t accept that those obstacles are permanent or large enough to obscure the good that can be found in the world. I have a profound respect for people who can continue to view their lives in this way after receiving a diagnosis that has upended all their plans and expectations. The rest of us benefit from their unshakeable hope and good cheer, especially when times seem dark and the everyday burdens of our lives feel particularly heavy.
Other strong parents harness their voices, energy, and power to advocate for their children. They act as a force for change in the world. These people aren’t afraid to speak out whenever it is in the best interest of their child or their community. Many scientific advancements and seismic shifts in cultural understanding have come about because of parents like this. Without mothers and fathers willing to fight—for dignity, equality, and support for their loved ones—we might not have things like special education programs or IEPs. There are decades, if not centuries, of inspiring examples to choose from. I’m sure every disability community has its own set of strong, vocal, driven parents who are moving important issues forward. Mine is no exception. In the world of Rett Syndrome we have seen first-hand the powerful effect passionate, outspoken mothers and fathers can have on research and medical advancements. For example, the Rett Syndrome Research Trust, an organization focused on finding a cure and backing gene therapies, was founded by a Rett mother who had no scientific background when her daughter was diagnosed. Sometimes it feels like there’s no limit to what strong parent advocates can achieve once they really get going.
And then there’s me—someone full of tears, dark moods, and doubts about the future. It’s taken an embarrassing number of months to recognize that I, too, am strong in my own way. There’s a lot to be said for dependable people—the ones who show up and do their duty, day after soul-crushing day. Despite my worries and grief, I get up every morning (and sometimes every night), ready to care for my daughter. I don’t always feel hope for the future or a passionate need to change the world, but I will continue to work to find the best care for the most beautiful and complicated little girl I have ever met. I do this because I can’t not do it, because I’m her mother, and because it’s my job. That’s my kind of strength. I am the person you call when you want someone you can count on. I am the one who always shows up.
In the end, we are all strong in our own way, and no way is better than any other. What’s most important is that we recognize and celebrate our own kind of strength and harness it for the sake of our child. So the next time some well-meaning person tells you that you’re strong, please don’t do what I did. Don’t dismiss it. Instead, try to smile and say thank you. Because these people aren’t simply saying it to be kind.
They’re saying it because it’s true.
What is your particular type of strength? How does it serve your child? Who are the other strong parents you admire? Why do you admire them?