Why I Am Grateful for My Daughter's "Label"

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 …

hope.

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. 

labels

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.

The Words That Change Everything

I realized I wrote this post several weeks ago and never published it. I hesitated to publish it now, as our little guy left us this week and we are grieving his loss. But the words are still true. “Thank you” still changes everything.

***

No one is ever short on things to say when it comes to foster care.  Because foster care (and life in general) is hard, well-meaning people love to offer phrases like the ones below, which are supposed to make you feel better but really kind of don’t.

”I could never do that.”   (Yes, you could.)

”That kid is so lucky to have you!”   (It’s not lucky when a child is removed from his or her parents.)

”You must be a saint!”   (Um, have you seen this chaos that we call our home?)

There have been some helpful things too, though. 

”God sees you.” 

”I’ve been where you are, and it does get easier!” 

“I’m here to help if you need anything.” 

If you’ve said any of those things, bless your soul!  I have clung to your words more often than you know.

Do you want to know the words that have changed everything for me?  They’re so simple.

”Thank you,” 

and,

“We will never forget what you have done for him.” 

These words came from my foster son’s biological parents.

I know, I know.  Foster care isn’t about me.  I should be willing to make sacrifices and care for this human, expecting literally nothing in return.

But in addition to caring for a human, I am a human, which means that affirmation is life-giving.

thank you

Prior to Little Man, we had another K for several months.  Her mom would tell us things like, “I’m glad she’s safe”, but she never said, “Thank you”.  I don’t hold that against her; she didn’t owe us anything.  But every single day from January through May while K was with us, I wondered if what I was doing mattered at all.  We were only a brief stop along K’s path, and due to her young age and special needs, I feared then (and often continue to fear today) that my daily “dying to self” would be forgotten.  Maybe it already has been.  As much as that shouldn’t matter to me, it does.

I thought that Little Man’s parents would hate us, and I would understand if they did.  I would struggle to love, like, or even accept whoever was taking care of my children if they were removed from my home.  Perhaps they have struggled with those feelings, too, but they’ve never let them come across in our interactions.  They’ve shown us nothing but kindness and gratitude, which makes showing kindness and gratitude to their son infinitely easier. 

I’m tired The days begin far too early and end way too late, and I consistently feel overwhelmed and unproductive at the end of them.

Those words, though ... when I wake up with them ringing in my head ... I can pursue this often thankless calling for another day.  I’m reminded how much words matter and I’m challenged to be generous with mine.  Because in foster care and in everything else, “thank you” can change everything.