The Next Day

School. We’ve been at it for what…eight days now? Yes…Eight. Whole. Days. And I found out yesterday that N’s been to ‘room 101’ (detention) seven times already. Most of which were this week. Last week was good. It was soooo good. Like, I was wondering who kidnapped my son and exchanged him with a look alike, good. That kind of good. I was so excited at the possibility of a new experience in school for N. Once that leaves him feeling lifted and confident, capable and normal. Yes, yes. I know. What is normal anyway? In this case, I reference normal as the ability for him to fit in with his peers, to not feel singled out or labeled a “Problem”.  And after the first week of school, I was thinking this was a real possibility. Maybe he’d ‘turned the corner’, as they say.

But it didn’t last. Many have asked me, “So how’s school going? How’s middle school? It’s a big change!” Yes. It is. And I was terrified for him. Because the last years have not been good on his mind or soul. And so, throw in a school triple in size from his last, with kids the age where they mercilessly tease and compare, add the expectance of independence and self control…and well, I was hopeful, yet simultaneously preparing for the worst. Up until last Friday…I would’ve said, “Middle school is REALLY good! He’s doing really well! He’s coming home each day with a smile, going right to the kitchen island and starting his homework. I don’t know who this kid is! I realize it’s only the first week of school…but wow! This is a better start than we’ve had in the last several years!”

And then, yesterday. Calls from school. Finding out this week has been one of extraordinary struggle for him. Lack of focus. Impulsive actions. Blurting out. Being disruptive. My heart cracked, like a thin sheet of ice, as I watched that possibility disappear. School is just plain hard for this kid. The sensory input. The chaos. The expectation to sit still, be quiet, no blurting out, keep your hands to yourself, no laughing, stop smiling, go here, stay there, grab your book, no more kleenex, sharpen your pencil before the bell rings, you should’ve done this, why did you do that…good. grief. I start to feel panicked for this kid, when I think of all the messages he’s internalizing daily. The messages that all say he’s wrong, bad, not good enough, not organized enough, not…normal.

Parenting is already hard. Right? It’s tiring, selfless, stressful, and so on. But parenting a child with special needs? Needs that aren’t easily defined nor agreed upon by his specialists? Well dammit, some days, it’s downright defeating. Some days, I’ve got nothing left. Actually, let me correct that. Many days, I’ve got nothing left. Many days, I wonder if this is it. If this will be my breaking point. How much more can I handle before I too collapse? And then what?

I get quiet. I stop answering my phone, returning emails. People may start to think I’ve moved on from them, don’t have time for them. When the truth really is that I’ve stopped moving altogether. My mind fills up with fear and worry. My heart fills with sadness and feels too heavy to carry around. Sometimes I sit in my blue chair, and just stare out the window. And think about all that is happening out in the world. Much of it heavier than the burden I hold. Yet, my burden is still that. Mine. To be clear, the burden I refer to is not my son. But…it’s his illness. The stupid brain chemicals that can’t balance themselves and wreak havoc on his brain and body. The burden is the extra weight he’s been forced to carry since he was nine. And then, the burden becomes all that follows after that. The endless appointments and tests. The phone calls from teachers and school. The anticipation. Ugh. The anticipation of what will happen next. THIS IS THE BURDEN. And what do you do with that?

With good intentions, many say, “Oh, he’s a boy. He’ll grow out of it,” or “Ha! My son got in trouble once too,” or “It’s okay, all kids have a bad year in school, it’ll get better.”

You guys. That’s just not what this is. Sometimes, I just want to fall to the ground like a toddler, cover my ears and scream, “Noooooo. Stop it! Stop it! Stop it! Stop talking!”

Because this is not a phase. Or a bad year. Or a ‘he’s a boy’ situation. This is years of kids not wanting to play with him. This is years without getting invites to birthday parties. This is never knowing what comes next. This is hope, trapped in a balloon, tied down with one of those weights. This is always predicting the next thing. This is people thinking you worry too much. This is helplessness and fear. This is wondering how bad it will be this time. This is wondering if he’ll survive it all. This is constant stress on the family and all the relationships that entails. This is continual managing his behavior, and assignments and activities. This is predicting cause and effect and intervening when you can. This is never resting. Always waiting. Hanging on by fingertips.

You may even be reading this and thinking, “Hey…he’s at a new school. Middle school, at that. So he’s probably just adjusting!”

And you know what? You are right. It could just be that. Or it could be worse. It could be like the last several years where things escalate, things happen and before you know it, we. are. in. crisis. Yes, I know. I shouldn’t go there. yet. And it’s true, we aren’t there, yet. But once you’ve been there, it’s hard to stop your brain from packing for the next trip.

I try to not spend a lot of time wanting what others have. I try to focus on being grateful for the blessings in my life. But sometimes, you wonder what it would be like to have the kid that has never struggled to find and keep friends. Sometimes, you wonder what it would be like to have a child who doesn’t struggle at school in these ways. What would it be like to go to conferences and receive glowing reports on their performance and progress. What would it be like, if your child was loved by their teacher? What would it be like if you could send your child off to school, and not worry ALL the minutes. Not be afraid ALL the days?

What. Would. It. Be. Like.

I can’t spend too much time here. It’s not good for anyone. Because that’s not our story, that’s not our path. And it’s okay. Somehow I manage. But today, today I feel broken and hurt. I feel bitter and angry. And that’s okay too. Because grieving is a part of this process. I’m not sure if any parent of a child with special needs ever finishes with the grief. They may cope, make some peace with it. But then, something happens and you’re reminded of what you don’t have. And you grieve for it. I try to limit my time spent in this space. But when I do, sometimes I need to be allowed to stay in there for a bit. Let the tears drop, and hope that with them, I shed some of that heaviness that sits on my soul.

I don’t know what comes next. Yet I do. Meetings with the school, advocating for his rights, therapy, crying, stress. Questions, neurological testing, medication exploration. And so on. Hope comes too. It does. It always fills the gaps. But the spaces between…when it’s in the shadows…those are hard times.

But we keep moving forward. Many days, it doesn’t feel like we are getting anywhere, except to the next day. But then, when your child lives with mental illness, getting to the next day is often the very best, most blessed thing that can happen. And we cut the weight off that balloon and let it rise. Free, weightless and filled with hope.