August the thirteenth, 2009. That’s the date on my last entry here. It’s been almost seven months since I’ve been in this space. Almost seven months since I’ve been able to be in this space for longer than a few minutes.
It has been la vida loca at Chez Anselmo for that long. Things have happened that we didn’t think we would ever have to bear, that we would never have thought we could bear, and we’ve borne them nonetheless. So many things, in fact, that there is no way I could get all the pertinent details into a single blog post and not give up a good chunk of sleep. (Lost enough of that lately as it is.) But I wanted to give you all at least an overview, and I can expand on any or all of them at later dates.
That work for you? Okay, strap yourselves in, and please keep your arms and legs inside the car at all times. Here we go …
The biggest deal, as you may have guessed from my last post back in August, has been our son and his illness. Back then, we had a tentative diagnosis of West Nile virus – serious, but usually not life-threatening. That diagnosis didn’t hold up, and neither did several others posited over the following three weeks. It wasn’t until September 8, when some lab results came back from Texas, that we got the really bad news: a confirmation of Leigh’s disease, a genetic condition that causes a breakdown of the motor control centers of the brain. Leigh’s renders its victims unable to move more than a little, eat normally or do much of anything else. (Click here for more details.) There is no cure and no prognosis of recovery; most children who have it die when they’re about my son’s age. The percentage of those who live to adulthood: effectively zero.
So we brought him home from the hospital on September 23 with the expectation that we should enjoy the time we have with him, because likely there wasn’t much left. Just one problem with that: starting around the beginning of November, he began to slowly regain some of the lost abilities. At this point (eight months after the initial onset), he can sit up with help, move his arms and legs around, grab objects (often when you least want him to), smile or give dirty looks, and even manage small bites of soft food. He’s not yet talking again, and it may be years before he recovers full mobility (if he ever does). But we have reason to be – very cautiously – optimistic, based on how he’s beating the odds so far.
My mom, however, didn’t beat the odds – or only did so far as what killed her wasn’t what we expected. My wife Nina (aka the Supermodel), our kids and I spent Thanksgiving Day with her, and may have been the last people she ever talked to. The following day or early the next, she suffered a massive stroke, from which she never awakened. She died Sunday night, November 29, and while the reason given on her death certificate was “liver failure,” it was the stroke that did her in before the liver cancer (or the aneurysm, or the occluded coronary arteries) could.
This meant that in addition to taking care of my son (since Nina is our breadwinner at the moment; more on that in a moment), it was also up to me to take care of her estate, made more difficult by her not leaving a will or instructions for her memorial service. (She had told me on Thanksgiving that both were “almost complete,” which I took to mean that she actually had something written down. Wrong answer.) Much of December was spent cleaning out her apartment, and much of January wrapping up other entanglements – canceling memberships, paying bills, closing bank accounts, and so forth. With a couple of exceptions, I think I’ve got all of that taken care of. But there isn’t a day that goes by when I don’t miss her, and that will take a lot longer to resolve.
The Supermodel’s job as a Special Ed. assistant at a charter school (where our daughter attends as well) has been stressful. Bad enough dealing with kids that don’t want to learn, foul-mouthed high-schoolers using their cell phones in class, and uncooperative teachers. Lately, they haven’t been paying her either. She has yet to receive a cent of her November or December paychecks, and those for January and February were less than half of what they should have been. At this point, they owe her somewhere north of $4000 in back pay. And she isn’t the only one. After much prayer, she has decided to continue working there through the end of the school year (much as her husband would like to take it before both the school district and the state Labor Relations Board), unless she can find another job in the meantime. Come June, she’s cutting bait. Biblically speaking, she’s doing the absolute right thing. Any wonder I love her? Thankfully, we inherited a little money from Mom, which has cushioned the financial fall somewhat.
Of course it didn’t help that we had to change banks in the last couple of months. Security at our previous bank of eleven years had become so lax that people were able to steal from our account with some impunity, the hoops we had to jump through to recover some (not all) of the money were ridiculous, and customer service in general had gotten so ineffective and unhelpful that we gave up and closed our account. And to give you an idea of how bad it was, even though we had them close it on January 23, it took over five weeks until March 1 (accompanied by three separate calls on my part to their headquarters, plus two calls and two visits to the local branch) before they finally did close it and give us the money we were owed. We’re now with a credit union that is fanatical about protecting their members’ accounts — and they know us by name! Definite step up.
Whew, what else? We have a new car, having inherited my mom’s Kia minivan and sold our old Dodge Intrepid (the one with the coolant leak). I’ve joined a fitness club, since my weight has hit 250 lbs. (115 kg) and it should be below 200 (91 kg), but have yet to find a diet plan that works. Nina’s recent health issues (aside from her CMT; let’s just call it a “female problem” and leave it at that) look like they’re related to her no longer using birth control, which she dropped after I had a minor surgical procedure in 2008. Most likely, her doctor will be putting her back on it as a sort of hormone-replacement therapy. Our daughter got promoted from the third to the fourth grade in mid-year, and is still getting straight A’s (or the modern equivalent). If she doesn’t skip another grade along the way, she’s scheduled to graduate high school at 16. (Hey, I graduated at 17 – why not?) My fantasy baseball team, the Stockton ‘88s, won 87 games, a wild-card playoff spot and a league pennant before getting shellacked by Craig Hixon’s Cambria Cro-Magnons in the World Series. (We lost for a very simple reason: Cambria was just better.) And I really, really wish that Tiger Woods had read my blog entry, Keep ya zipper up!, from last July – it would have saved him, Elin and all America a whole lot of headache.
And as far as the American church … no changes for the better, alas. I’m still looking for a group of Christians that get together solely to love God and each other, without all the religious rigmarole, but have had no success. (Nor am I the only one.) I’ve been looking into the “house church” movement, but have found few within regular driving distance, and many of those are either a) appendices of the same institutional-style congregations I’ve burned out on, or b) part of what, for lack of a better term, I would call “house-church denominations” whose focus is indistinguishable from that of the institutional-style congregations (i.e. what God can do for us or what we should do for God, rather than loving Him and the person next to us). Nina and our daughter (our son isn’t in any shape) still attend a regular Sunday service, though Nina is getting increasingly jaded about the deafening music, un-stirring calls to do more and do it harder, and sermons she’s heard a dozen times before. Neither of us are giving up on finding God’s best … though we are wondering where is left to look for it.
I’ve been under more stress over the last seven months than at any time since fourth grade (when my parents split up), perhaps more than any time ever. I’ve become prone to stomach upset, headaches, random shooting pains in my legs, and back spasms. I’m on about the eighth attempt in that period at getting my sleep schedule back on track. Depression has taken more shots at me than Manny Pacquiao at a heavy bag. I have to work hard on keeping my anger and frustration in check, though I think I’ve succeeded 90% of the time. (And some of the failures were in dealing with our ex-bank, so I tend to consider them sorta-justified.) I would not wish what I and my family have been through on Osama bin Laden. But here I stand nonetheless, and I thank God for what He’s going to make of this whole mess.
So in a nutshell, that’s the news from Lake Wobegon. I plan to come back to all or most of the above subjects in later posts, though I don’t know how frequently I’ll be writing. Maybe several times a week, maybe several a month, maybe less – who knows? It will depend on my son’s condition, my schedule of necessary tasks, my energy level, my general mental health and whether or not a news item makes me roll my eyes and wonder why so much the human race is so dang stupid. I will definitely be posting on Friday or Saturday with my picks for this year’s Academy Awards, as I promised one of my son’s physical therapists that I’d do so and am therefore obligated. Otherwise, I’ll be remembering James 4:14-15 and taking it as it comes.
‘Cause while I know Who holds the future, I don’t know what the future holds. If I’ve learned nothing else from the last seven months, I’ve learned that.