I sat there alone in the examination room in a chair in the far corner. Should I be on the table? Should I leave my shoes on? I’ve been in these rooms so many times with my kids, it’s hard to think what I’m supposed to do for myself.
My back is firmly pressed against the chair. My legs are crossed. One hand is holding my phone, checking email, quickly switching to see my son’s blood sugar. I go to turn off my ringer — that’s polite I think, right? What if I turn it off and it happens again? One day last year, I turned my phone off for an appointment and no one had gotten the message that I would not be available. It was the one time since Henry’s diagnosis that I didn’t answer the phone. It ended badly.
I turn my ringer up instead.
Texts start to come in. I look to the clock on the wall, look back to texts, and then reply with what the bolus should be bumped down to for snack. I check my email again.
I’m probably dying, I think. The doctor is going to come in here, I’m going to tell him what I am feeling, and he’s going to be like, “Wow, you are dying.” Or, “Yup, you are crazy.” It’s one of those two, I think, very confidently.
The doctor enters the room, sits down and asks how I’m feeling. It’s my yearly physical that I manage to make it to every two to three years. I’m here, though. That’s a big deal for me. I automatically start to feel defensive. I don’t know why. I’m annoyed with myself.
I haven’t been sleeping, I say. Words begin to spill out of me and across the beige floor. I can’t even look up at him.
Sometimes, I say, when I’m standing in the middle of my house there’s something I want to say and I can’t get the words out. By the time my mouth starts to move my mind forgets what was happening. It was so important, I think, the thing I had just wanted to say. It’s gone. My hands, they go numb, my legs feel like they might fall out from underneath me. I feel like sometimes I’m just floating above myself. I wake up at night and my chest is tight. I think that I am allergic to something. Pollen? My pillow? My dogs? The air?
I shift my knees toward the door, my hands on the arms of the chair, almost pushing myself up and out. I want to take everything I just said back. I want to leave the room. I don’t want to look at the doctor … I don’t want any of this.
He tells me that I should sleep.
I tell him I can’t.
He asks me why.
And as I begin to open my mouth, I can feel my eyes starting to water. I can feel that tightness in my chest and I cough. I try and clear my throat, but it still feels tighter. I move my finger towards one of my eyes to hide the fact that I am about to break open.
I’m just tired. I’m sorry. I think there is a lot of pollen or something.
I run the palms of my hands on the tops of my thighs.
You need to sleep, he says again.
I tell him I can’t again.
He asks me why again.
Then I break, wide open. Like those slow starting cracks in the earth in the movies. Then everything splits in two.
I can’t sleep because I’m scared my son might die. I can’t sleep because alarms go off all night, lights are turned on in the halls to get to his room, then lights are turned off to keep him asleep. I squint in the darkness to get that one tiny drop on the strip, I muffle the beep of the BG reading so it won’t wake him. My heart falls when he’s so low he can’t clasp his mouth around the straw of the juice box, I cradle his head in the crook of my arm to drink. Sometimes I smell his head and remember when he was a baby without T1 — the idea that he was safer then. He wraps his arms around me and pulls me down toward him; he whispers from his deep sleep, in the dead of night, “What’s my number?” I say don’t worry, you are perfect; I love you. I leave the darkness of his room and into the shock of the hallway light. I descend the stairs to the bedroom and with each step my mind begins to race around about everything that is wrong, everything I need to fix, all of the people waiting to hear an answer from me about something.
I lay back down and I breathe in, I breathe out, my mind tells me I won’t be able to fall back asleep, and when I do, the alarm goes off again. It feels like I never closed my eyes at all.
You know that feeling when your child runs out into the street? Almost getting hit by a car? It’s like that when he drops. Sometimes it happens five a times day.
It’s fine, I tell the doctor. It will pass. Then it will come back. It never stops.
My husband? He’s amazing. We trade off. If one of us is really tired, the other one takes the whole night. But you still hear the alarms. Even when it’s not your turn, you wake up; you wait until the other returns and whisper, “What’s his number?”
When you hear the other one running fast upstairs, you cringe because you know that they’re running for sugar — that we already used up the juice on his nightstand. You wonder if it’s true — that this diagnosis is not your fault. You know it’s stupid, but you feel it. How can you not about the person you grew inside of you? He didn’t ask for this. You asked for him and it feels like your body failed him.
I’m crying, with deep breaths talking to the doctor. I go on about my symptoms, peppering it with “I’m sorry” and “I’m not normally this upset; I’m just tired.”
There’s just so much pollen.
I’m still checking my phone even while I’m talking, checking his BG, it’s a compulsion. He’s stable right now, but me? I am not.
It’s been 4 weeks since I slept through the night.
The first night after in two weeks he was stable all night, no alarms went off but I woke up with a start at two in the morning, 100% convinced that he was dead. Does his CGM still read if he’s dead? What would his blood sugar be if he were dead? I get trapped in these grim awful thoughts until I pull myself out of bed and go up to his room anyway and place one hand on his cheek and one on his chest just to feel him being alive. I don’t even deserve this beautiful child I think. I descend the stairs, think about what I did wrong. I know this has nothing to do with me but in my heart I can’t shake it. I’m not sure I ever will.
Well, the doctor says, I know what’s going on with you.
I’m dying? My face is red and I’ve given up on wiping away tears.
You aren’t dying. In fact, I’d take a year’s salary and go to Vegas and bet that you aren’t dying.
I hope you are a good gambler, I say. I’m sorry, I say again. I’m sorry.
Listen, from the moment I walked into this room I could tell that you were nervous. You are stretched very, very thin right now. I’m worried. You’re making me nervous, because you are so nervous. You need to sleep and take care of yourself.
What you have is really common, it’s called Caregiver Anxiety. You have a very extreme case right now.
That’s all, I say?
That’s a lot, he says.
I laugh this awful leftover ugly cry laugh. It’s all I have left.
That can’t be a thing, I think. God, I’m weak.
He wants me to sleep through the night. I swear every part of me folds inward, recoiling at the idea of not being able to wake up when I need to. When Henry needs me to.
You are exhausted, he tells me.
But my son is alive because I wake up, I tell him.
There are bigger problems than this, I tell him. People handle bigger things. I can’t handle this.
I don’t want anyone to know.
I want to help everyone.
I don’t want anyone to help me.
My body works but my brain cannot.
I’m letting everyone down.
So, I start to tell people. I make fun of myself, sometimes it’s all I know how to do. I feel sorry for myself. I feel like saying it out loud made me accept it. If a friend told me this, that they needed help, I would give everything I had to help them. I keep saying it, thinking maybe it will make me feel like less of a failure.
Like, maybe I’ll feel better soon.
Maybe I can make that happen.