The Never Normal

I’ve been watching a live feed of an eagle nest on YouTube. The nest is about 145 feet up in a Jeffrey Pine within the San Bernardino National Forest near Big Bear Lake, California, and is currently occupied by a mated eagle pair, Jackie and Shadow, and their two eaglets, just hatched this past weekend. This is all I want to do lately – watch the eaglets, who look like little miracles to me. I want to sit and watch the eaglets feed and grow, and then to fledge and fly away.

I can’t help but be reminded how my friends and peers and cousin’s children grow and fledge their nests, live independent lives and write their own stories. I am as much of a spectator to their lives as I am watching the birds; it is all as foreign to me as the miracle eaglets…for Jonah will simply never fly. This is not meant as a complaint, but a reality – sometimes an isolating one. I don’t know many mothers who relate.

He’s struggling right now. I haven’t wanted to write about him. I’ve been busy staving off my feelings and carving ways to fill my life with something more. I try so hard to stay afloat while still managing meetings, doctor appointments, care coordination, life plans, goals – every aspect of his life assessed and evaluated, with my input being as important as it is limited. Thank God for Briana, who lived and breathed Boo for years, who was with him every day and learned him inside and out, who can provide content and context and all the details of his life so we can define a baseline from which to form his future. I need to unravel the mystery of Medicaid, as a lot of specialists won’t take it. The care coordinator is supposed to help me figure out whether a managed care plan would be any better, and I’ve added Jonah to my dental plan at work. I’m working on it all in perpetuity.

Tomorrow the 5th individual with the most extensive needs will move into the house. I’m hoping once the 5 people are all there with a regular staff who know them all, things will settle into some sort of normalcy, weird and different as it may be from any other “normal” in any home where you or I have ever lived. In the house at any given time someone is chirping, yelling, pacing – there are thumps and bangs and slams, staff changes and behaviors, dicey bathroom trips and broken things.

Jonah’s room was painted a soothing blue for just a few days and now it sports patches of white on the walls where staff has spackled, smoothing over all the holes where his kicks or thrown objects landed. The windows and one part of a wall are covered with wide panels of plexiglass. The bed is nailed down and a drawer-less nightstand sits secured as well. He has peed all over the floor on purpose and thrown tables, chairs, food, and garbage cans, both at his day program and at the house. He broke the showerhead and his closet shelving and God knows what else. When I was in Florida for work in March, a staff member had to pull over twice while driving him to a dance for developmentally disabled adults because he was kicking the back of the seat so hard she was afraid. When finally they arrived, he grabbed her cell phone and ran into the gym, throwing and breaking it. After that we added a two-person protocol to his plan (which really should have been there in the first place).

Then one of Jonah’s housemates attacked him, hitting him, on two different occasions and for no reason, prompting another plan addition whereby a staff member is always between them. And two times so far I was called, and the Justice Center sent certified letters, notifying me of alleged misconduct at the day program, though the infractions seemed minor to me – one staff person pushed another or staff left the building when they weren’t supposed to – nothing like abuse against a kid, at least, I tell myself.

Then this morning the house manager called to tell me Jonah tried to run away three times yesterday. I had visited for about an hour in the late afternoon, bringing music and headphones. He was fine with me, though he cycled through his usual litany of requests for walk and ride and different kinds of food. About an hour after I left, he ran down the stairs and out the door. Staff followed him, but he’s really fast, and managed to get into a neighbor’s yard and down a side street before they caught him and got him back to the house safely. Two more times he tried to elope, but I guess he was thwarted those times and never made it out the door. This is not like him at all. I can’t remember him running away ever, not since he was two or three and took off through the yards in my father’s neighborhood. (Even then he was wicked fast).

Then the house manager called again – I see the number on my phone’s display and my heart goes pounding to my throat – but they were just calling back with some more detail. I guess Jonah was laughing and pausing while he ran, perhaps testing the staff person, who was not part of the regular crew. I’m not sure they’d catch him if he really wanted to escape.

This is not at all what I expected from my son. Here I thought he’d be physically attacking left and right. I envisioned they would have to call the cops. So I tell myself at least it isn’t that. The staff all seem capable and resigned to the craziness, though it seems they sure do earn their pay.

What next?

I lay in bed at night and unwillingly rehearse scenarios where they call to tell me he is gone. Hit by a car, brained by the housemate, dead in some incident. Always the call comes in and in my dreams there is a voice and the voice always tells me he has been killed. I wake up scared, shaking and sweating and somewhat relieved it hasn’t really happened, but at the same time afraid to try and fall back to sleep. It’s wearing on me.

This is my life lately, and there is way too much going on this week. I work both jobs during days full of anxiety, attend meetings and planning sessions while stifling all the emotions to the best of my ability, provide support for my father, a cousin, and a friend who are struggling, manage concerning physical symptoms I don’t want to talk about today, attend extra Rock Voices pre-concert rehearsals, participate in celebrations, and somehow still have energy for all of Jonah’s meetings and doctors and to keep answering the phone calls telling me about his behaviors, when all I want to do is curl in a ball and hibernate. I know better – for I will enjoy the singing and the celebration, and I will find meaning in the working and supporting those who need me – but still I’ll be glad when it is time to visit Boo again – even if all he does is wear his headphones, hold my hand, and walk the downstairs hallways of his house.

Despite his erratic nature right now, being with him always, always brings me joy. And in the meantime I escape for long moments to watch the eaglets feeding, magical performances to behold around the clock, limited-time-only.

I am grateful for the view.