Every Monday for eight months, Susan has come to our house for the evening. Her official title is Behavioral Management Specialist. When we agreed to this service, I was reluctant. I didn’t think she could help us.
This is the one where I think I’m so damn smart that I’m pretty much a world expert and it comes back to bite me in the ass. That’s kind of like saying, “This is the Three’s Company episode where they have a misunderstanding.”
And in spite of myself, Susan taught me. Tips and techniques? No; I did, in fact, know those. My philosophy was in line and appropriate; my knowledge was extensive. My attitude, though?
Susan walked into our house and looked at our boy and saw…a boy. She peeked underneath the raging cauldron of illness and symptoms on the surface and saw Carter. By watching her, I learned to do that, too. She repeated a mantra with me: If he could do better, he would. She repeated a mantra with Carter: Attitude is everything!
Both of those mantras were really for me.
I watched her noodle around and find ways to get Carter invested, to get him fired up and excited about things he could accomplish.
I learned to do that, to be on Carter’s side. Brian and Carter and me, a team, fighting against the illness and its symptoms. One for all and all for one!
We “graduated” from behavioral management services this week. I’m less smart now than I was when we started. That’s a relief.
* * * * *
Yesterday, when I picked Carter up from school, one of his teacher’s said to me, “He had a really, really good day! He’s doing so well; we’re all amazed at how fast he’s learning!”
Carter, on the way home, spoke almost without breathing, “Mom! I’m so far in my math book, I might have to start a new one soon! I just sit at my desk when it’s time to do math and work super hard, and if I need help? I just ask, quick as a wink! I get so mad when I have to sharpen my pencil because that means I have to stop and I hate when I have to stop! I like math even better than recess. Can you believe that? And I read a whole book today! Well, not a regular book. It’s this thing on the computer and you click to get to the next page and I read every single word! Can you believe that? And we’re learning about reptiles and amphibians and mammals and…and…shoot! I can’t remember what the other one is. What’s the other one, Mom? Oh, yeah, fish! I like the reptiles the best except we couldn’t have one as a pet because Lolly might eat it. Hey Mom, I’ve been working so, so hard at school and aren’t you amazed? Can you believe it?”
I hear, in his voice, not the pressure and confusion of mania but the excitement of a child who is experiencing success. He’s proud.
There is no greater joy in my life than to see my children feel proud of themselves. Carter has infinitely more to be proud of than most kids, but far, far fewer opportunities to feel that pride.
In the past year and a half, when other kids his age were learning to add and subtract, to read books and write stories, to play basketball and ride skateboards, Carter was learning to live with monsters. He was learning ways to manage his anxiety and where he can feel a rage start in his body. He was learning how to tell doctors and therapists what they want to hear so he could get out of their boring offices faster (not a lesson we’re happy about). He was learning (Please, God, he needs to have learned this.) that his dad and I are in this with him, no matter what.
* * * * *
In the past 20 months, I have seen the best of myself, and the worst.
I’ve seen the best of Brian, and the worst.
I’ve listened to my little boy beg me to kill him, or to let him kill himself.
I’ve refused to do either, repeatedly.
I’ve thwarted a suicide attempt.
I’ve watched him struggle with monsters.
I’ve adjusted to new diagnoses, added to the many that he already had.
I’ve administered over 6,000 pills.
I’ve stayed awake with him dozens of times because he couldn’t sleep.
I’ve stayed awake by myself dozens more times because watching my child suffer is an agony that sometimes refuses to take a break.
I’ve met some people. Wonderful people who love me and who I love. Some understand how I feel; some do not and yet they add something extraordinary to my life.
I’ve found my way back to the practice of using letters to make words and laying the words down in lines until there are stories.
I’ve learned to revel in every tiniest joy.
I’ve become accustomed to living at alert level red.
And now? I have to re-learn regular(ish) life.
You know that feeling, after you take off a very heavy backpack and you feel like you might float away?
I feel like that. Free and joyful but also disoriented and a little dizzy.
I’m finding my way back to the ground.
* * * * *
Carter is not cured. He has a severe, chronic illness. Everything could fall apart next week, or tomorrow, or later today. There are more crises in our future; adolescence looms like a hulking monster just a few years away. But what if the next few years were quiet?
That could happen.
His illness is not in remission. The little guys are here; his emotions are more volatile, fluctuate my widely, than for other kids. He’s afraid of so many ordinary things.
And yet? Quiet. Calm. It’s all relative.
I expect catastrophe. This is me, telling you that I am trying to learn to expect nothing, to walk around on the ground grateful for the many gifts and unsurprised by the many pains.
It is what it is. It can never be anything else.
* * * * *
“Why, babe? You don’t have to catch up to anyone; you get to be Carter, doing Carter things.”
“But Charlotte and Sean sent me all those presents and I didn’t write thank you cards to them! If I was sad or upset that day, they didn’t know that was why. They still sent me the presents, right?”
“Yes, they did. We’ll make thank you cards after school, OK?” My breath, caught in my throat because this boy? Whether it is because of his baptism by fire or because that is just who he is under his illness, this boy understands kindness and gratitude.
He crawled into bed with me this morning, scrunched right up against me with his face in my neck and we both went back to sleep. He was late for school.
That’s OK because we have lots of catching up to do.