An Open Letter to You From a Mama of Kids With Special Needs

Oct 22 2014

An Open Letter to You
From a Mama of Kids With Special Needs

 

Dear You,

Dear You, my friend,

Dear You, my neighbor,

Dear You who have kids without special needs… kids with just, you know, the usual slew of bottomless needs,

Dear You who are kids,

Dear You who were once kids,

Dear You,

I want to tell you about my son.

Just for a minute.

And about me and what it’s like for us who live full-time here in this world of kids who are different than normal, whatever normal is. 

I want to tell you about my son.

My son who is beautiful.

My son who is sensitive. 

My son who is compassionate, funny, and kind.

My son who loves Doritos the way some people love the sunrise or the rain on the roof or the majesty of the ocean, with a sense of awe and wonder and bliss.

My son who’s a total butt nugget and says GEEZ, MOM and WHATEVER and FINE and who also says I love you, Mom, and means it as fervently as he does the Geezes.

IanMy son who experiences developmental delay, pronounced anxiety, and expressive and receptive language disorders — meaning he can neither speak nor understand speech as easily as others — and who lives, therefore, every minute of every day trapped inside his own brain, unable to communicate well; at once imprisoned and also more free than we’ll ever be because he hasn’t learned to hide himself the way we so often do. 

Sometimes you ask me how my son is doing. You who know us well, and you who know us just a little. You ask because you care and because you’re curious, and I want you to know both are OK. I appreciate your kindness, and I understand your curiosity. It’s OK to want to know. It’s good to ask.

Sometimes I give you an answer. Sometimes I can’t find the words. When I do respond, it’s usually short. 

How’s school going? you say. How’s Ian and how are you? And I don’t know what to tell you, because, even though you’ll listen to my whole answer — even though I believe you actually, really want to know — I don’t know how to access the complexity of my grief and my longing and my hope in order to find a whole answer to give.

My son is a child who will, on some level, always finish last when measured by the standards of success the worlds gives us. He will always be an outsider. Always be different. Never belong. And so we work to create the safe haven. The place of belonging. The soft place to land. The true meaning of family. Which, it turns out, is hard, because families are made out of humans and we’re fallible. Imperfect. Messed up. And we’re the ones he’s stuck with, poor kid.

It’s hard for my son to be different. He knows. He can tell. And it’s hard for me, too, because I grieve that which cannot be. The same life and opportunities the other kids have. The limitless potential to DO. I must wrestle with myself most days to remember my son has the limitless potential to BE. To be loved. To be valued. To bring joy. To be my son. To be enough as he already is.

Grief and hope make for awkward companions. Awkward lovers, never quite sure where to put their hands. Always bumping teeth. And yet, because the grief abides, I work to make room for hope, for without hope we are lost at sea, adrift and alone.

While I’ve learned to live inside this new reality — while I’ve learned to look for hope and to cheer victories of every size and to regroup when we’re forced to fall back — I have neither “gotten over” nor “come to terms with” my son’s disabilities like I expected I would by now. Instead, I’ve learned there are new phases of grief. New sorrows. New things he can’t now and will never do. New realities that are mine with every new age of his.

So you ask how he is. How I am. And I want to answer you. I do. I want to champion my son. I want to spread awareness. I want to hand you my heart. But I don’t know how.

I stick with facts for my longer answers. School’s going well, I say. Or, He got to play a sport this year! First time he’s played a season. I might even tell you, The counselor is AWESOME — she is, it’s true — or say, The medication is really making a difference, and I mean that, too. Even though medication isn’t right for everyone, I wish we’d given him that relief earlier.

But I more often give you a chipper Fine! or a cheerful Good! or, when I’m overwhelmed and can’t muster my optimism, an Ugh! or a Pfftt! or Well, it’s hard right now, but we’ll figure it out.

And there’s a whole world of things I don’t say.

About what it feels like when it’s dark outside and I wonder about his future.

About how hard it is to tell him again, day after day, sometimes hour by hour, that I don’t understand what he just said and I need him to say it again.

I don’t tell you he didn’t sleep through a single night for the first 11 years we had him.

I don’t tell you about the panic attacks that leave him flailing and breathless.

I don’t tell you what it’s like to hear the sounds of my son crying in his sleep and to revisit what his first 3 years must have been like, abandoned and alone. 

I don’t tell you about the guilt I carry for not being with him, even though there’s nothing I could have done to change his early life.

I don’t tell you about the family vacations, for which we try to be grateful, which are raw and agonizing because he is outside his routine and his safety net and therefore bewildered and afraid.

I don’t tell you about the ways my body tenses when he bursts into our room in the middle of the night and the door bounces off the wall while he yells, “DAD? MOM?” because he needs to make sure we’re still there.

I don’t tell you how fragile he is. Or how fragile I am. Or how much I’m afraid we’ll all break.

Instead, I give you an answer, a Fine! or a Good!, and it’s a true one, but it’s also incomplete because my brain is short-circuiting. Stuttering. Blanking. There’s just too much to say, and I don’t know where to jump in.

guatemala 014When Ian was three (and four and five and six and probably seven), he used to throw himself on the ground and play dead whenever he felt overwhelmed by the world around him. I took this picture of him at age three, in the airport in Guatemala City, just after we adopted him, when we were bringing him home for the first time. 

Frankly, I think it’s a pretty good strategy. Very effective. 

It’s also an excellent visual aid for the route my brain travels when you ask us how we are. How are we? We’re… good… we’re… fine… fizzle, fizzle, kerthunk… PLAY DEAD

And so I take this long route to tell you this: I’m a mama of kids with special needs. I’m hopeful and I grieve. And I need you, my friends, rather desperately, even when I don’t know what to say.

I need you to keep me on the side of hope.

I need you to whisper in the dark that it’s going to be OK.

I need you to keep asking how we are, even though my answers are pathetic.

And I need you to know I remember every kind thing you say to me about my kid. Every compliment. Every ounce of compassion. Every time you try to include him in your games and in your parties. Every time you inconvenience yourself to bring us in. 

For every kindness to my child, to my family and to me, I’m nearly unbearably grateful. And I’ll ask you to please, keep being gentle with us. 

Yours Truly,
A Mama of Kids With Special Needs