We had waited for four months to get this appointment, but really I had been waiting for years.
My daughter was an easy baby. She slept great, ate great, and cried rarely.
I knew that something was “off” around the time she turned eighteen months old. My easy baby became an extremely challenging toddler.
“Oh, she has just hit the terrible twos early,” friends would say. “She’ll grow out of it.”
“She’ll grow out of it,” I kept telling myself. But as I listened to others talk about the challenges they faced with their own children, my “mother’s intuition” told me that she might not. Now she’s almost six, and many of my fears were grounded.
The longer I struggled to parent my child, the more I retreated into myself. I got tired of hearing well-meaning people offer parenting tips and embarrassed as others openly condemned our parenting style. We had tried it all and were grasping at straws.
Over the last year as we have had children from the foster care system in and out of our home, I have been somewhat blind to the needs of my own daughter. I thought that maybe she was doing better, but the reality is that she continued to struggle, and I continued to be unavailable to her. I recognize all of that now that we are four months removed from fostering and our lives are back to “normal”. (Well, a new normal.). So in January, once I could see more clearly, I made an appointment with a team who had come highly recommended as a last-ditch effort to figure out what is going on with our sweet girl.
As five doctors sat around a table and talked at me, I tried to drink as much information from the fire hydrant of information as I could. I came away from the evaluation with a stack of papers, a plan, and, for the first time in years …
I hated hearing them say all of those things about her and I hated reading those bold words at the top of the first page they gave me: her labels. I hate that this issue isn’t something that will resolve itself or go away with time. I hate the diagnosis, but I’m also extremely grateful to have it. As with cancer, the disease is truly terrible, but ignoring it or being in denial doesn’t somehow make it less terrible. These things can’t be treated unless their presence is known.
It felt strange to be on the receiving end of these life-altering conclusions about my daughter. Having taught special education for years, I was often part of the team of professionals who would sit down with parents for the first time and explain the results of evaluations to them. I’ve seen all sorts of reactions to this information, ranging anywhere from quiet tears, to “deer-in-the-headlights” looks, to refusal to sign the paperwork, to leaving the room. I always prayed that I would have an appropriate reaction if I was ever in a similar situation but never dreamed that I actually would be.
I cried all kinds of tears in the days following the appointment.
Angry tears because watching her struggle behind the glass that day was just one of the many times I’ve watched her struggle in ways that many other children don’t.
Sad tears that she will deal with these things, to some extent, for the rest of her life.
But also, tears of relief. I’m not crazy! The doctors all validated what I’ve seen for years, but unlike me, they know where to go. Those words at the top of the page, they’re just words. And yes, words are powerful, but these particular ones aren’t powerful enough to defeat us or her. Now I just know how to fight.
You know what other words are powerful, more powerful than her labels? “You’re a good mom, and I’m glad she has you.” Those came from my husband. I’ve felt many things in regard to the challenges of parenting a child with these needs, but “good mom” hasn’t been one of them.
More tears. This time, tears of gratitude. All of those times I have beat myself up for wondering where we went wrong and not knowing how to help her … her diagnosis is not my fault!
Does this all change how I love her? It absolutely does. I don’t love her more or less, but I can love her better. I can start giving her what she needs. I wouldn’t change a thing about her. She’s perfect and exactly who God intended her to be. But now I can have more compassion and grace for her (and myself!), and I can find her help.
This “invisible disability” doesn’t define my daughter. It is a part of her, but it isn’t her. When she introduces herself to other people, this thing won’t be the first or second, or probably tenth thing she tells them about herself. She’s still the little girl who asked to visit our sick elderly neighbor this weekend. She still loves gymnastics and reading and babies and her dog and being outside with her sister. She’s still one of the best readers in her class, and she is still crazy good at art. I couldn’t be more proud.
I’m grateful for her label because those little words open doors for her, and she’s too stubborn to let the words win.