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Archive for December, 2020

merry christmas

From our family to yours, with humble thanks for your support and encouragement throughout this and every year. It means more to me than you’ll ever know.

A special thank you to Briana for the wonderful photo of Boo!

Love,

Amy & Jonah

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the newest normal, part 2

The story has a better ending than beginning, fear not.

After talking to Briana, I scheduled both a zoom call for Wednesday the 16th and a campus visit on Friday the 18th at the visitor center. When the time for our zoom call rolled around, however, Jonah didn’t want to talk and of course we didn’t want to force him. I began to question the wisdom of the in-person visit and was further distracted by a huge snowstorm that dumped more than 2 feet of snow Wednesday night into Thursday.

But then I decided to try it. Nothing ventured, nothing gained. I knew I’d need someone with me – someone relatively strong, reasonably brave, willing to be attacked, and ready to sacrifice half their day to this endeavor. The list of people fitting this description included two obvious choices; when the first couldn’t do it, the second stepped up. And so it came to pass that on Friday, December 18th at 2pm, I arrived at Jonah’s house armed with my companion and a 2-cheeseburger meal from McDonald’s. Briana brought Jonah out and escorted us to one of the village center’s second floor “apartment” doors. As she unlocked the door and let us in, Jonah immediately threw his coat on the floor, but she wasn’t having it. After her admonishment, he picked up his coat and put it on the couch. Briana gave a thumbs-up and left us to our visit.

The mock apartment included a spacious living room area, complete with a large TV and DVD player, a couch, loveseat, and some single chairs. At one end was a window, and by the window a small table and chairs. Behind that was a kitchen, complete with microwave and dishwasher, garbage can, sink, and cleaning supplies. Across the room from the kitchen was a large bathroom with a swinging door.

When I tell you it was the best visit I’ve had with Jonah in recent memory, I don’t mean to paint an extravagant picture. Jonah ate his McDonald’s and watched Jungle Book. I did not give off the please don’t flip out vibe. I brought a large deck of cards, part of a game he wouldn’t care about. He grasped and tapped them throughout our visit.

Every so often I asked him if he wanted to go back to the house or if he wanted more video.

“Video,” he answered each time, calmly. When he wanted more drink, he asked “black soda?” and at one point he said “bathroom” and walked past me through the swinging door to pee. We hung out in the same room. I understood his words. It was beautifully mundane.

He moved once from the big couch to the love seat, content to hunker down and hang out. We’d reserved the room from 2-3pm, but as 3pm approached, it became apparent Jonah was settled in. I texted Briana to ask if we needed to vacate at 3, and when she said yes, I started a 5 minute countdown for Boo.

(He’s holding the cards I gave him)

He did great. I cleaned, packed everything up, and we trooped down the stairs. “Walk,” he said, so I took a side path to extend our time a bit. Back at the house, Briana came out to get him; I managed a quick hug before he went inside.

When the door shut behind my boy, I felt a rush of relief. We’d done it, somehow, incident-free. Maybe Jonah had been in a particularly good mood. Maybe all the stars were aligned, or Divinity intervened. Maybe we just got lucky. Whatever the case, I’m amazed and happy. I reckon I’ll try another zoom call soon, and aim to visit in person again sometime in January.

One note about Andy: He called today and apologized to me, offering a clarification: When he said Jonah didn’t care if I visited him, he meant we. As in, Jonah doesn’t care if we visit. Fair enough. I wish Andy happiness and only the best of everything. I hope we can visit Jonah together someday.

I’ve been crafting with the rocks again, making some into magnets for Christmas gifts. I painted a bunch more to hide in the park.

One day before the snow, I was walking Jack through the park right when the school kids were on recess. Most of them came over to say hello and pet him, and I asked if any of them had seen painted rocks around. They got all excited and started talking at once. Yes! I got an alien! I found a fish!

One girl asked if I was the one who leaves them. I smiled behind my mask and answered yes – and I tell you those kids went freaking nuts. Jumping up and down, running to tell their teacher. One serious lad looked at me in earnest. “I’ve been trying to figure out who it was for weeks,” he said, like he’d just discovered Santa mid-chimney. I was so happy. I’ve been thinking about opening a shop on Etsy, but honestly I don’t need the money and I enjoy the idea of making random people’s days a little brighter.

Before I left the kids that day, I asked them if I should keep putting rocks around the park. YES! YAY! they all shouted in affirmative chorus. So I managed to leave 5 or 6 more before the storm buried everything. I figure if I make more magnets, I can put them on the basketball court fence or street sign poles, high enough to stay out of the snow but low enough for kids to see.

For now I’m just resting in the knowledge that I can see my son successfully. It’s possible for us to forge a path ahead. And really, that’s about all I can ask for from the remainder of this crappy-ass year.

Happy holidays, my peeps. Bring on 2021!

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the newest normal, part 1

Somehow it all fell apart.

We were visiting Jonah and driving “slow on the driveway” and managing okay. Then he started attacking in the car, so we stopped driving him around. Instead, we brought him lunch and did a campus walk together.

Then he started attacking on the walks.

As the situation deteriorated, so did Andy’s attitude toward me. Visits were merely awkward at first. He was quiet, even for him – only speaking to answer my questions, a sharp yes or no. Just before Thanksgiving, I told him I’d be bringing food down for he and Jonah.

“Just bring it for him,” he said.

“You don’t like it?” I asked.

“I. Don’t. Want. It.” he answered icily.

I figured he was in a bad mood, so I let him be. But the next Saturday was worse. My father fell the day before Thanksgiving and was hospitalized, and I’d had a tiring week. Now Andy seemed to be in a bad mood again. On our campus walk he admonished me as an angry parent would a small child, emphasizing the words in a cruel, mocking tone. “Stay AWAY from him. You’re going to get HURT, and then you’ll CRRRYYY.”

Wow. What? Tears sprang to my eyes from his words alone, no attack from Jonah necessary. I’ve never heard Andy use that tone since the day I met him. Never. If this hadn’t happened to me, I wouldn’t have believed it. Andy doesn’t have a mean bone in his body; everyone knows that. And yet here we were.

The next Saturday I arrived in town a little early and called Andy to tell him so, because it was raining and I didn’t know what kind of visit we could manage. Anderson has a visitor center with mock apartments and you can reserve a room, but I wasn’t sure whether or not it had been reserved for us this day.

When Andy answered, I apologized for calling him so early and asked if Briana had reserved a room at the visitor center. He said “I don’t know, you’ll have to call Briana.” I asked if he could please call, because I was still driving. When I arrived at Anderson I parked where Andy usually does, waiting for him to call me back. When he didn’t, I called him again. He was in the drive-thru line at McDonald’s, getting Boo some breakfast. “Did you get hold of Briana?” I asked.

“I left her a message,” he answered, clearly annoyed. Then suddenly he kind of exploded.

“Jonah doesn’t care if you visit,” he told me coldly, almost yelling the words. Then even louder, each word a punch: “He. Doesn’t. Care. The words stung, even as they rang true. I tried to stay calm. The meditation I’ve been learning came in handy just then. I’ve been working on creating a PAUSE between what is happening to me and my reaction to it.

“Okay, well, be that as it may, I’m here now,” I said. “I’m parked over by the dumpster behind the house.” He hung up.

I sat in the rain in my car and watched for him, trying to keep it together. After another 15 minutes, I got out of my car as Briana was pulling in. She was returning from a meeting and had just hung up from talking to Andy. “We don’t have the visitor center room,” she said, “but we’ll make something work. Andy is already here.”

For some reason, Andy had parked up by the visitor center and walked straight to the front of the house while I was parked in the back. Was he even going to tell me he’d arrived? Clearly his intention was to not find me.

By now I was frustrated, cold, and annoyed. Briana told me she’d get Jonah ready and would meet me out front, so I walked up to where Andy was standing on the porch. He said nothing to me. I said nothing to him. We stood waiting as a full five minutes stretched out torturously. The wind blew cold and the silence, colder.

When they finally brought Jonah outside, there wasn’t much for us to do but let him eat his food on the ledge by the porch, under shelter from the weather. We hadn’t planned this out very well, obviously; both Andy and I share the blame for that. Briana tried to help, offering to bring out some chairs. Before any of us could consider this, though, Jonah said “walk” and turned to go. The rain was only spitting by then, so Andy and I followed him.

I tried to talk and engage Boo as best I could, but he was walking so fast I could barely keep up. We’d only walked about 100 feet when he turned to hit me and I dodged away.

Andy looked over at me and screamed GO HOME!

No PAUSE this time. I yelled back. “I don’t like this any more than you do, but you don’t have to treat me like shit.”

And I left. And yes I cried and no he’s not going to mock or shame me for it – or anything else – anymore, because this time it’s mama who is all done. Later that awful day I texted him.

I’m going to schedule zoom meeting visits with Jonah once in a while, instead of driving down. I will call the house each night myself to see how he did each day. When I do visit Jonah in person, I’ll set up the appropriate accommodations with Briana. I’m done speaking to you and being around you. Don’t contact me until you can treat me with respect.

He hasn’t contacted me since, so I guess he can’t.

And just like that, POOF he is gone. Before December 5, we had spoken at least once a day since always. As recently ago as this summer he was joking and laughing with me, reading me the (excellent) mythology he has been writing, gifting best friend Erin and me with hand-crafted mugs for Mother’s Day.

It was not necessary for us to speak once a day, but it was nice to touch base – because he is my son’s father but also because he is my friend. I’m over being angry and hurt; clearly it’s Andy who is hurting. For now, I can hope my absence from his life is a source of peace.

Later that day, Briana and I spoke on the phone about what happened. I tried to keep our discussion about Jonah, not Andy and me. Briana was professional and kind. She reminded me that Jonah hadn’t had a single aggression for the whole 3 months+ when we couldn’t visit because of the Covid lockdown this past spring. That’s true, I admitted. He did do well.

She said maybe we could try Zoom visits and less frequent in-person visits. That worked out nicely before. That’s true, I said. It did.

Later, I thought about what Andy had said: he doesn’t care if you visit. That’s true, I thought. Andy might have told me so in a nicer way, and maybe it’s not entirely true, but yeah. He probably doesn’t.

And then I remembered what it was like to go away to college, almost exactly the same distance away from home. I sure as hell didn’t want my parents up my ass every weekend.

My son is 18 – but because of his disabilities, it’s been easy to treat him like a perpetual child. Maybe I’ve been doing him a disservice this whole time, both in the way I regard him and in the way I inflict myself upon him. I’ve been so doggedly determined to drive to Rhinebeck and visit for the smallest amount of time under the crappiest circumstances – and for what? For him or for me?

Or for others – relatives and friends and the imaginary judgmental society watching to see what kind of parent I am. If I am a mother who visits her child regularly.

Do I care so much what others think that I’d adjust my own logic to fit their expectations? Do others expect anything of me at all? Does Jonah?

My mind goes in circles. I am reminded I am mentally ill.

I tell myself I’m thinking and

attempt to

rest again in the breath.

And then came a solution.

To be continued…

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