This is hard. This is really, really hard.
When, as a family unit of three, we felt like we had lost our bearings, we would make an effort to sit down, come up with a plan, and find some structure. We would map out the days of the week and get into a routine that allowed for both family togetherness and free time in equally fair doses. Nowadays, every attempt we make at organizing the family is subverted in one manner or another.
If we were simply tacking on a few extra children to the household, it wouldn’t be a problem. As it is, though, we are still working on the transition that got us here in the first place. Meetings with doctors, lawyers, social workers, CPS, pediatricians, family members, etc consume our days and often at last-minute notice, effectively pulling us away from our routine and many times pulling me away from work. Arranging for help from federal and state programs is the most convoluted process I’ve ever encountered and I’m left wondering how people wind up scamming the system when the system is so damned arcane that I can’t fathom anyone ever traversing such a labyrinth even on valid terms.
When things quiet down on the outside, we are beset by maladies of various sorts inside. Both “J” and “C” have been battling chest coughs for the last week or so and “C” woke up at 1:00 this morning with a bad earache. So, routine shattered for the 147th time in a month and a half, I now need to take the day off of work to take him to the doctor.
I try and have patience and empathy – the kid can’t help that he’s sick – but there were about 10 dozen expletives floating around in my head all the same as I gave him some medicine last night.
The most difficult part of all of this is the breaking down of mental structures. You tend to have a mental structure or picture of how you envision your life – both long-term and short-term. You’re going to get such-and-such a job to buy a house in such-and-such a place and so forth. Equally important is the immediate picture. You’re going to get up early to have plenty of time to take a decently relaxing shower-shit-n-shave and maybe crawl back into bed for a 10-minute catnap while snuggling your loved one.
Interruptions or full on dismemberment of these structures and pictures can be heartbreaking. My current problem isn’t so much with the long-term structure; whatever quantity of children remain in our care for however long is needed won’t change that I’ll continue working at Alfred and enjoying my job while Mickey will continue to earn her teaching degree. No, it’s the short-term plans. The stuff I have pictured in my head that will happen later today or later in the week, or perhaps even a month from now. There’s not a whole lot of those short-term pictures in our lives right now that don’t wind up shattered on the ground behind us as we lay our exhausted heads on our pillows at night and reflect on the day’s events with a symbiotic sorrow and joy.
Enough with the negative. I can go on and on about the negative. Time for positive.
“I” is doing better than ever, healthwise. During our care, he has steadily gained weight at a good clip for the first time ever and his GI doctors are beside themselves. He’s actually doing so well that his 24-hour feeding tube has been cut back to just a nighttime event, with solid foods being his primary source of nutrition now. This changes the whole ballgame. Daycare is now an option. Babysitters are now an option. Really, once he wakes up, we remove the tube, give him his medicine and for all intents and purposes, he’s a normal 2-year-old kid until it’s bedtime.
What’s even better is that it’s clear he is happy and healthy. You can’t lasso the kid and keep him in one spot for more than a few moments anymore. He’s running around, talking up a storm, giggling, and even feels good enough to assert himself and throw tantrums (we have had to enact 1-2-3 Magic recently to quell those). His cheeks are chubby, his stool is more and more normal (sorry, but it’s a big deal to us and his doctors), and he gives hugs every chance he gets.
“J” is still a concern. He’s a good kid, well mannered, and well meaning – but he’s nine years old and understands the familial situation in which he’s involved. It’s tough and we are keeping a close eye on his behavior. He doesn’t seem to be lashing out and he has actively asked for counseling, which I was really proud of. It is apparent, though, that he puts some blame for the situation on himself and he will need to come to terms with his unfounded but understandable guilt issues. What’s more is we are also now having to roll up our sleeves on custody issues for “J”, but I may have to wait to go into that since it is a pending matter. Let’s just pray he gets to stay with us as long as is necessary.
“C” is a turd. A blessed blessing of a ten-year-old, but a turd. He’s had a rough go of it, too – he was used to being the only one having Mickey and my attention and now he must split it very unevenly. His room and sanctuary is now shared and he is entering his awkward teen years shortly. Not enough to start going through it, but soon enough to see it coming down the train tracks toward him. We’ve always had high standards for him, admittedly. He gets himself up with his alarm clock, dresses himself, eats breakfast on his own, gets himself ready in the morning, and is ready to leave with little to no supervision – and has for years now. He is a good kid. Perhaps our expectations for his habits and behaviors is too high, especially considering the recent circumstances, but it would be nice if he could start caring for his personal responsibilities. Things like shoelace tying, avoiding licking his face (which inevitably causes horribly cracked and rash-y skin), and in general taking stock of the world around him are consistent daily struggles.
Well, I’m signing off until the next installment of My Life as Onkel as the story unfolds around us. Pray that we can get the support we need to continue this, the custodial fights to go our way, and our ability to weather this storm remain intact.