After a perfectly reasonable Christmas holiday and a “typical kid”-centric vacation to a warmer clime for a few days, the rest of the winter break has been utter trash.
“Trash” is how my fifteen-year-old describes anything that is annoying, disappointing, or ridiculous. It must be vocalized as though it is painful to even say the word. Trash.
The Utes offense in their bowl game was trash. Having to wake up before 10:30 am over Christmas break is trash. If there are no Oreos or vanilla ice cream in the house, you have pure trash.
We returned from our family trip and things began to go poorly. Decidedly so. Jack’s left ear is again infected and his behavior is temperamental. By temperamental, I mean he has flushed a pair of sunglasses down the toilet, broken the light fixture at the bottom of the stairs, tried to re-break his bedroom window, smashed some dishes, and repeatedly thrown his Christmas presents around the garage until they died.
Jeff and I generally enter a fugue state of our own when Jack is sick. We are constantly living with heightened awareness bordering on agitation. We don’t get enough sleep because Jack doesn’t get enough sleep. Nothing happens around the house other than mediating Jack’s messes and managing the destructive behaviors.
We would like to engage in some projects to improve the parts of the house wrecked by Jack when he is sick. But all of our weekends/days off feature us focusing on Jack like a laser. He’s not just a full time job. He’s a full-time job for at least two people.
All of this may sound like me whining and complaining, but you guys, it’s just the actual truth of our lives. And I haven’t felt like writing about it. I haven’t had anything to say other than, “this is complete trash.”
Sometimes I hesitate to bring this sort of thing to light, because it’s not funny, nor inspirational. It’s just this nightmare scenario on repeat in our house that we can’t fix (on many different levels). Most people don’t know the ins and outs, the outs and ins, the what-have-yous of Jack’s ear infection/strep infection/cold & flu behavior. And when they do learn something about it, they’re usually quietly horrified.
Sometimes they will ask if we have considered institutionalizing Jack. I think they ask this because they see the depth of our struggle and wonder why we haven’t looked into other options. So while I don’t like it, I understand why they bring it up. I suspect they are picturing themselves living all the time in a house where violence happens regularly and entropy is the business at hand.
The reality is, it’s more complex than just dropping Jack off at a “home.” There are more factors at play than, “life would be easier if Jack lived somewhere else.”
A few of the sticking points: there really aren’t many residential treatment options for a person Jack’s age in our area, and those that do exist house children and teens with the very most aggressive and uncontrollable behaviors. The patients in these facilities interact together, meaning Jack could learn even more disagreeable things. The risk of abuse is high for a nonverbal person. Then there’s the part about not living among the people who love him the most in the world, but around staff members. And the people who manage his disability services don’t want to approve a residential facility because it costs far more than if Jack remains at home and receives other in-home services.
Not that I have to explain this to the world, but I will if it helps people understand that “finding a home for Jack” isn’t like finding a home for a dog that you can’t keep. It’s not the same thing at all. It’s complex. And he already has a home with the family that God gave him, which is the ideal setting. Until there is a better option or we can no longer care for him, he stays here.
I’m not sure how this post turned into a dissertation on Why Jack Still Lives With Us, but there it is.
Let’s talk about trash and its opposite.
Trash is that Jack gets more ear infections than anyone who ever lived on the earth, and that when he hurts, everything about our life turns into roller derby meets The Walking Dead.
Trash is that we can’t give Jack a Eustachian tube transplant.
Trash is that despite all the specialists and all the interventions and all our best efforts in every regard, the death spiral behaviors are here to stay. Much of the time, anyway.
In teen speak, the opposite of trash is fire. Actually, fire! Things that are fire! are “sick” (which doesn’t mean ill or disturbed). Other synonyms are cool, excellent, on point, rad. You get the idea.
There are, thankfully, parts of bad weeks like this one that aren’t pure trash. They’re fire!
Like the fact that we have late church now, and Junior came to help out this morning, so Jeff and I got to take a Sunday morning walk in the frosted and flocked landscape of a freezing fog. It was iced loveliness.
Also, we sang “For the Beauty of the Earth” at church today.
And Jack was pretty good as we took turns staying home with him during the different hours of church meetings.
Jeff made a pot roast and mashed potatoes for dinner. This is the very definition of fire!
Then Jack passed out in the red armchair after eating a dozen warm homemade chocolate chip cookies.
It’s a new year. I’m sitting by the fireplace, writing. Jacky is momentarily peaceful. My children are all here. Jeff is with me through all of it.