Idle time.

For the past fourteen years my life was consumed with caring for my autistic, epileptic, ID kid. The paperwork, the appointments, the applications. All this was a lot. And then there was his actual care. Theo is a lovely child, but he is relentless. From the second he wakes up (usually around 5 am) till the minute his beautiful head hits the pillow he is a frenzy of questions, requests, demands and a complete and utter inability to entertain himself even for a minute. Oh, how I sometimes prayed he was like those autistic kids who would stare at an ipad all day. We were lucky if we got five minutes.

It has always been challenging parenting Theo, but puberty took things to a whole new level. There started to be behavior problems. At home yes, but then school. This started to become a problem. Even at his out-of-district school for autistic kids, behavior problems are little tolerated (there are other, less-desirable schools for these kinds of kids). We were getting desperate, the situation was escalating. Our home life centered completely around Theo. The stress was intense and there was never a moment of respite. Never.

We started to explore boarding options last spring. This seemed like the only solution for us all. For us to keep our sanity and our wits about us. For his brother, to undo some of the home stress. And for Theo. He needed stability. A schedule. To be entertained. And he needed friends. His brother and the neighborhood friends, four years his junior, were outgrowing him. The situation was unsustainable.

I am yet unable to describe in detail the heartbreak of this situation. I am still facing it every day. So I cannot properly convey the emotional component of all of this. I will stick to the facts. The fact is we found a school in upstate New York for special needs kids. He was suspended after nine days. For behavioral issues. He then went to a treatment center in Utah for six weeks. We hoped to get his meds adjusted and we simply couldn’t be the ones to oversee that process. While there we found another school for him. This time in Tennessee. He’s been there since November. I got diagnosed with cancer in January.

Last year was the worst year of my life. Full stop. Dealing with Theo was a relentless stress that likely took years off my life (?!). Saying goodbye to him was even worse. Missing him I feel a literal hole in my heart. And thinking about what if’s…I hardly let myself go there.

When he left last fall, though, there was also an awakening. We had been living in a constant state of fight or flight for fourteen years and suddenly, overnight, the situation drastically changed. Our house was quiet. I could wake up gently, sip my coffee, and read the paper on a Saturday. We could have a conversation with our younger son over dinner. We could look forward to the evenings as a time for relaxation, and not as the hardest fucking part of our day. We could invite people over without fear of some sort of incident. In return we could go to the houses of others without stress over what could possibly happen. Or knowing that we would be able to have a conversation without constant interruptions and requests.

I got diagnosed with cancer in January. I must admit that my initial reaction was one of self-pity. I had just gotten my life back. And now this. Although in some ways I wasn’t surprised. I keep reading that stress doesn’t actually cause cancer, but I put little faith in this suggestion. In any case, I do still have moments of self pity, but truth be told, the most prevalent feeling is one of relief. Relief that this diagnosis came AFTER Theo left home because if he had not been sorted this whole situation would be hell. A hell that likely none of us would have survived intact. Because I cannot for one minute imagine going through cancer and its treatment with Theo in tow. It’s completely and totally unfathomable.

On some days I even saw my new diagnosis as a welcome distraction. The distraction from missing him. Missing the way his smile renewed my faith in a god, for how could something so beautiful not be sacred. Missing his particular way of calling me “mommy” and his awkward but completely sincere hugs. Missing the way he loves to host, loves a party and how much he just adores being around people.

With a new cancer diagnosis one goes into action mode. Finding doctors, appointments, scans, loads of paperwork. Cancer took up where Theo left off. I had years of training for action mode.

But for now that frenzy is over and I am in unfamiliar territory, with way too much idle time on my hands. Theo left, then cancer filled the void before I could feel it. And now I feel it. The discomfort in this is disquieting on the best days, despairing on the worst. And I’m torn between trying to fill this void or sit with the discomfort, though the latter…