On the Things I Don’t Tell You

Sep 29 2015

I don’t write a lot about my kids with special needs. Partly because handling the I.E.P.s and the quirks, the delays and the frustrations, the joys and the surprises, seem, well, ordinary for us these days. Mundane. Ho hum. Like handling any of my kids’ personalities, I guess, because it turns out we all have needs in our family — we’re very, very needy around these parts — and every need takes time and is, technically speaking, somethin’ special.

I don’t write a lot about my kids with special needs because I don’t trust myself as a competent enough writer — all blah, blah, blah as I so often am — to convey the depth of love I feel for my kids who have to navigate this curious world, and the immeasurable respect I have for their relentless, courageous pursuit of life and learning. I never want them to look back here to re-read what I’ve written and misinterpret it as angst directed at them, because they are precious people worthy of endless love, like all of us, and I want them to know their mama’s always in their corner.

But I also don’t write a lot about my kids with special needs, if I’m going to be as truthful as possible, because it seems like too much. Too Big. Too difficult to wrap inside one blog post. To tricky to pull off just one piece to examine and package and stack neatly on the bookshelf, labeled correctly, and cross-referenced by topic. And so I make the occasional reference to my kids who experience delays and disorders, and I don’t follow up to tell you I’m sometimes breathless with worry about what their futures hold.

I don’t tell you, in general, about how we don’t sleep through the night around here. But we don’t. We don’t sleep though the night around here, and sometimes it’s for the usual reasons parents don’t sleep; the bloody noses and wet beds, the nightmares and the thunder storms. Those are the good reasons we don’t sleep. They’re my favorite reasons. But we also don’t sleep through the night because of the screaming and the panic and, worse, the keening that comes from my son’s bedroom because he doesn’t believe — can’t believe, deep down — that we won’t leave him, too, like he’s been left before.

I don’t tell you about the doctor visits and the counselor appointments and the brief respite my sweet son got when the meds we refused for 10 years were finally used and worked for a little while, and I don’t tell you about the guilt I have for not using the medicine sooner.

I don’t update you to let you know that a dog named Zoey, whose name means Life, gave us back a piece of ours by giving our son comfort he can’t receive from us.

I tell you about my younger daughter’s developmental delay even less than I tell you about my son’s, because her needs, while significant, pale in comparison to her brother’s, and so she draws the short end of the attention stick, both in public and in private, and I fret about whether she gets enough from us. She does and she doesn’t, I suppose, like all our children; getting enough and too much and not at all enough from her mom and dad, but I can’t help but feel we should give this 8-year-old stuck in a 13-year-old body more, somehow, you know?

I don’t tell you that I’ve cried myself to sleep watching the status updates of friends with daughters my daughter’s age who play and laugh and sleep over and bake and craft and make memories of girlhood together. I don’t tell you that because it’s unfair to my friends and to their kids and even to my own child to burden them with my grief and steal from their light-hearted joy. My daughter isn’t sad, after all. She’s not lonely. She has no sense of missing out. The other girls? They’re kind to her and gentle and sweet at every turn. Anti-bullies, every one. They include her when she’s around. They write her special notes. Every year for 6 years now, they champion her at camp, and give her a soft space to land, and meet her where she’s at, and engage her as much as she is able. What more could we possibly ask when there’s no more she wants or more to give?

There are no villains in my daughter’s story; she has thousands of sword-wielding, horse-riding heroes and heroines, instead. The people who would slay a dragon for this kid are legion.

It’s not my daughter who is sad or lonely. It’s just her mama is for her sometimes. Because even now — even 13 years after this precious little one came into my life and I realized she’s her own, unique, very different soul — I can’t help but think about what could be. What her childhood could have been like. And I mourn the loss of it for her. Right or wrong, I do. I mourn what she doesn’t want and will never have.

And gosh, I realize I sound so down. So terribly sad. And I want to lighten that. Lessen it. But it’s a window to a dark piece of my heart, and I don’t know how to wave from the dark and let you wave back unless I let you see it, so there it is.

But I will leave you with this, because as many little dark corners as there are in my heart, there are more places that are light and bright, and Karen Pugsley is one of the many reasons why:

Karen Pugsley is my daughter’s principal. She is noble and wise, and, more importantly, kind, and when my daughter was hurt at school last year, Karen sat with my kid and me for what seemed like hours and days until my kid felt ready to go back to class, as though my daughter feeling comfortable and supported and loved was the most important thing Karen had to do that day. Ridiculous, right? Because what kind of a message do people like Karen send to our kids, you know? 

Well, I’ll tell you what message my kid got; she believes Karen’s got her back. She believes Karen’s worthy of her trust. And she thinks — get this — that Karen is her friend.

This week, my kid smuggled her Newest, Most Favorite, “She Is, Too, Alive,” stuffed animal, Quick Silver — a wolf, of course — to school in her backpack.

Please sit with me a moment and think about what might happen to an 8th grader who brings “She Is, Too, Alive!” stuffed animals to school.

IMG_1153Ugh, right?

And DREAD.

Except not for my kid. Because I got this message in my email box yesterday from Karen:

Your kid sent Quick Silver home with me tonight to meet new friends. They had a party. I chaperoned. We had a good time. Please show her the pix. I’m bringing the cool fox to work tomorrow to hang out.

I cried, you guys. Cried big, sloppy tears.

Because as much as Karen’s care for Quick Silver was an expression of love for my daughter, it was a reminder, again, that we don’t walk these roads alone. THANK GOD. We don’t walk these roads alone.

In conclusion, KAREN FOR PRESIDENT.

……….

Listen friends, I don’t know what today is like for you. I don’t know if you’re stuck in a dark corner or if your heart is happy and light. I don’t know if there are things you don’t tell because they’re Too Big and Too Much. I don’t know if you sit sometimes, sure you’re alone and dreading what the future holds.

But I choose to believe this — we are not alone. We’re not. And that’s enough for me for now.

Sending love to you, friends, and hoping for a Karen in your life,

Signature

 

 

 

IMG_1154