A Little Look Inside My Head

On Thursday, I drove D. to therapy and sat in the waiting room, sorting through my box of paperwork, adding things to my to-do list. In the chair next to mine was a woman I’ve seen there many times.

“Is your son with SuperSpeechTherapist right now?” she asked, and when I said that he was she asked when his session ended.

“At 1:30 she hands him off to Mrs. Block,” I said.

“Oh, great. I really need to grab her for a few minutes. I want to see if she can take over speech for us. I’m freaking out. I just found out that my daughter’s speech therapist is moving away the same week the OT is going out on maternity leave.”

“Yikes.”

“I know, right?”

“But don’t forget that she’s also going on maternity leave for the summer.”

“No, that’s fine. I’m just going to be without therapy in two weeks. Not a good place to be.”

“Definitely not.”

“Well, SST is terrific. She’s been really great with D.”

“Yeah, from what I’ve seen she’s amazing. I just can’t deal with all this transition. And it’s right before our visiting day here.”

“Oh. Well, we failed our visit last year.”

“So did we!”

“And I swear, I’m going to hang myself if we fail again this year. I’ve looked, and there’s nowhere else to send my kid. I just don’t know what I’ll do.”

“I know, right? I’m just barely keeping it together these days, and that would just push me right over the edge.”

“Totally. Yeah, Someone told me recently that ‘God only gives you what you can handle’ and—“

“That’s bullshit!”

“That’s exactly what I said! I mean, LOOK at me! NOT HANDLING.”

“You know what it is?” she said thoughtfully. “What choice do we have? I mean, we can’t just abandon them, so we HAVE to get up in the morning and put on a brave face in public, but at home? COME ON.”

“I KNOW. I’m a freaking MESS at home.”

“Yeah, I read something once about grief, about how the better people LOOK like they’re doing, the worse off they actually are.”

“I can believe that,” I said.

And the more I think about it, the more true I realize it is. Look, if I left the house with unbrushed hair, mismatched shoes, and dirty clothes, people would stare, and they would KNOW that I am not handling it well. I don’t know how they would react, but I’m pretty sure that’s the part where you find out who your friends are.

The ones who are there for the long haul show up at your house with food, spend six hours cleaning the cereal off the side of your kitchen island and another two hours just letting you cry. The ones who really love you take your special needs kid for the day and tell you, “We’ll be fine. Just take a nap.”

And probably the reason I keep it together in public is that I suspect that most of my friends, while they like me a lot, might not love me that much. They’re probably the kind who would look a little embarrassed to see me such a mess. “Is everything OK?” they’d ask, but they’d ask it with car keys in hand and an over-the-shoulder glance meant to imply business, meant to inspire me to laugh it off as a bad morning.

Don’t get me wrong. I don’t think my friends are bad people. I think they are human, and I think in a sense we all see what we want to see. I think that if I were actually dying and in the hospital, they would all be there for me and my family. But that’s because dying is a short-term thing. This, my life, is long-term. And really, who wants to take on that burden? Who wants to be the person who says, “Listen, the third Tuesday of the month is mine. I’ll take D. that day. Every month, for as long as you need it, so that every month you know that you’ve got that day.”

And no one wants to ask me the really hard questions because the answers are really hard to hear. What are my long-term plans for D? Who knows? Yes, right now we have a college fund (although the 529 people did not appreciate that our last contribution consisted of several partially eaten lollipops, a piece of gum, and thirty-seven cents in pennies), but it may one day be more of his long-term care fund. No one really wants to think about the fact that D. may always be different, always need help.

No one really wants to hear YET AGAIN that every financial decision we make comes down to, “Do we do this, or do we pay for X hours of therapy?” No one wants to know that giving up my housekeeper to pay for speech was one of the hardest things I’ve ever done and that there isn’t ONE DAY that I don’t resent that I’m doing my own laundry and washing the damn floors AGAIN.

The camp forms came out the other day, and we figured out that if we send the boys until 2 and the girls until 4, it’ll cost us $6,000. But then, one of my friends asked me last night, “Will you need to have a shadow for D.?” And it was like a truck hit me, because I had completely forgotten that NOTHING is easy, and that the real cost would wind up being more like $8000, and camp just became a luxury we can’t afford.

So I get dressed in my funny t-shirts and my denim skirts with funky embroidery and my tall boots, and I laugh when people ask if we’re going away for winter break or summer vacation and I tell them, “It’s all good,” when they ask how I am. And I hide in the closet in my office so my husband won’t hear me crying and I make jokes about the chaos when people call or stop by, and I let everyone think that I am handling things.

Maybe I underestimate my friends. But I don’t really think I’m brave enough to find out.