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  • Posted on July 9, 2014 at 10:00 AM

So, I went to my post-surgery check-up, but the surgeon wasn’t there. I don’t know why I thought he would be. Instead, I met with another assistant. She checked out my incisions, but other than that the check-up was all verbal. I told her what I had experienced, good and bad, with my recovery thus far. She was pleased with my progress.

Her informed assessment, however, was something of an obvious conclusion. I’ve had too much stress. On the one hand, my life is stressful. This is seen as being particularly true whenever I bring up the boys. I brought up the boys to make the point that I’ve spent too much time putting their health (and educational) needs first; and that I’ve been putting my own health on the backburner for far too long. Her point was “Wow, three with autism, that’s got to be stressful all by itself.” Hm. Yes, I suppose it is, but not nearly as much as people might think, especially now that we’ve figured out what works for them.

On the other hand, she also made a point of stating that my body has been under particular stress lately. My crash or flare up, my diagnoses, my sleep issues, and now surgery – there is absolutely no “wondering why” I’m physically fatigued. No matter how much I may want to accelerate this process, and just be better already so I get back to things that matter, the fact is that my body is still healing, still recovering, and that this matters, too.

There’s so much I want to do…but if I focus on that, instead of on what I can actually do right now in this given moment, then I just add to my stress unnecessarily. For some, this might seem self-evident and obvious. For me, it’s kind of revolutionary. My idea has generally been: “Get through this as quickly and thoroughly as possible, so I can get on to the next thing.” It’s not that I am in such a hurry that I forsake quality, because that isn’t effective. It’s that I’m so focused on doing as much as possible that I’m actually reducing what I’m capable of because too much of my energy and focus is spent worrying over or planning for things I can’t do yet.

Here I am trying to recover, trying to build my capacity, and I’m eroding my good intentions with unnecessary stress. [Grumble, grumble.] I swear I’m going to get this balance thing right one of these days.

A Family Reset

  • Posted on July 2, 2014 at 10:00 AM

A little a while ago Ben brought home a piece of school work that Mark put up on the wall. They’d written statements for him and marked where he should complete them with a long line. “My name is _______,” “I am _____ years old” (which he got wrong), and other things Ben is expected to know. One of the statements was “My mother’s name is ______” and Ben answered “dad.”

Mark is a stay-at-home father. I am a work-at-home mother. While I may share more of the domestic responsibilities than the typical working spouse, Mark has a heavy load to carry to fulfill his daily role (especially during the summers) and he has access to far less support than traditional stay-at-home mothers do. Mark and I both appreciated that Ben recognized that Mark’s role was a bit untraditional.

Now, with me partly out-of-commission, we’re undergoing some changes. I can’t lift more than 15 lbs. without endangering my abdomen. Since I don’t know 15 lbs. versus 10 lbs. or 20 lbs. when I’m lifting it, I may not be the strictest adherent to this rule; however, as a family we try our best to accommodate my recovery needs. But this simple restriction changes a lot.

Since my sleep cycle is so screwed up, I have to make most of the days when I’m awake during the day. I usually do my shopping at night, late at night, when everyone else is asleep. I would go to the grocery store, load up my cart, go through the self-check lane, bag my groceries, load them into the cart, load them into my van, and unload them into the house all by myself. Then, I’d put them away. The boys would wake up to a house full of surprises.

Laundry is a bit different. Sometimes I would do it all myself, but sometimes Mark would lug the heavy hampers downstairs for me. Now, I can’t even carry the baskets of clean clothes upstairs unless I separate a load into smaller baskets and make several trips. Daily chores have become especially exhausting. So, now Mark’s doing all the heavy lifting for this family, both literally and less literally.

I may be the one bringing home the bacon, both literally and figuratively, but his job is harder. I know, because I’ve done it. It’s easier when I can help more, but getting me healthy is a priority, too. Resetting expectations and obligations isn’t easy and the timing isn’t good. Summer is not the time to mix things up. But we’re trying, as a family, to make it work. You can’t reset Mama without it spilling over to the entire family, even if she’s a work-at-home Mama.

A New Kind of Recovery

  • Posted on June 30, 2014 at 10:00 AM

So, last Tuesday I went to the doctor because of severe stomach pain and came out of the hospital without a gall bladder. By that time, I’d nearly made a full recovery from my last flare up of fibromyalgia (the diagnosis will be confirmed or changed later today, I hope), which doesn’t mean “cured” of course, but it does mean I had energy and concentration levels that were similar to what I’d had before my crash.

Now, I’ve spent almost a week recovering from my infection and surgery. I’ve got about five more weeks before my body is fully healed (no more weight restrictions and no more bathing/swimming restrictions), but I suspect I’ll have my energy and concentration levels back up before then. I’m already feeling remarkably better consider I slept all of the first day after my surgery and most of the second. I’ve even put in a few part-days of work and one full one, though only the one. With any luck today will be my second.

Unfortunately, now that I’m well-rested and on the mend, my insomnia is back, as was proven last night. I tried to sleep, but I couldn’t. Then, I took melatonin and a sleeping pill and they sort of worked and sort of didn’t. I’m starting to think my sleep issues are going to be the most difficult to resolve.

Before my surgery, I was beginning to sort out the difference between fibromyalgia pain and arthritis pain. Then, once the gall bladder issue started I had a new kind of pain to factor into the equation. By the time I went to the doctor it was all gall bladder pain all the time. After the surgery, my other pains were muted and I had a rather deep, cutting kind of pain to deal with, but I also had the kickass power of percoset to keep that under control. Now, I’m off that and my abdomen is tolerable and I’m back to feeling my fibromyalgia pain.

It’s been a rocky week. Alex missed his Summer Swim two times in a row. If he goes again at all, it will have to be because Mark or my mother takes him. I’m on a no-swimming, no-baths regimen until after the first week in August. It’s a new kind of recovery. It’s certainly better than having kept my gall bladder, but it’s going to take some getting used to, now that I’m actually awake enough to get used to it.

Operation Hernia Repair, Part Deux

  • Posted on January 27, 2012 at 8:00 AM

I scramble out of bed after a few short hours of sleep and slip out of my warm bed into the shiver-worthy air.  I hurry downstairs to slurp up as much caffeine as I can manage as I finish up the few tasks that remain in preparation for Alex’s surgery.  It is 5:20 AM, far earlier than I’d like to be up, considering I finally fell into bed some time between 2:00 and 3:00 AM.  Despite the rush of activity, I take the time for my morning prayers.  Today is not the kind of day I can venture into without prayer.

I’d already gotten most of the bags out to the car—one bag for Alex’s needs at the hospital, one bag for when we’d spend the afternoon and evening at my mom’s, and one bag full of what portable work I was willing to take with me to alleviate the wait.  I also had an insulated lunch bag full of canned caffeine.  I hurried upstairs to bid Mark a sleepy good-bye and to get Alex up.  I dressed him in loose clothes, and stuffed him in coat and boots.  Alex lolled with sleepiness, not having had time to wake himself thoroughly.  I left off hat and gloves, because the day was warm for winter (foggy and raining, instead of bitter cold and snowing), and because I didn’t want to have that extra bit to look after.

The drive was slower than I would have liked.  According to the weather report I’d read before crashing into bed, the fog was supposed to have lifted by now and the icy roads melted to wetness, but everything was still foggy and slick.  We got there five minutes later than we should have.  We checked in, in quick and easy fashion, and the receptionist handed a card to an elderly volunteer.  With formal courtesy, he said, “Would you follow me, please,” and led us from the front desk of the hospital, through the warren of corridors, to the outpatient surgery desk.  I made as if to step up to the desk, but he handed them a card and said, with a slight bow, “If you would follow me please.”  We ended up tucked in our little, private cubby with as little fuss and effort on our parts as possible.  Nice.  Very nice.

We were visited by a nurse’s aide, an admissions lady with a rolling, computerized terminal, and then the nurse.  The simple stuff went by with minimal fuss, though we had to coax Alex to let the light clamp thing measure the oxygen in his blood via his finger.  Of all the times I’ve seen it and had it used on me or my children, I still have no idea how that works, but, once we got Alex to leave it on, it found that Alex’s blood had plenty of oxygen.

The anesthesiologist came in before we were ready, and was left waiting a bit, but it gave me a chance to mention (thanks to my mom’s memory) that anesthesia makes Alex nauseated, so he’ll need the medicine to help with that.  Then, the surgeon popped in, dressed like a civilian, and we went over everything I hadn’t asked yet: I shouldn’t worry overly much about the bouncing, as it can’t be helped; he’ll probably need a few days off from school; and it’s all very much like the last time.  The anesthesiologist came back and we talked about the options, and I was able to assure him that, from previous experience, Alex was fairly cooperative with the medical staff, at least as far as going back with them on the rolling bed was concerned.  No separation anxiety would cause Alex to freak out as they were taking him back to the surgical room.  (Taking his blood pressure and the finger clamp were other matters.  Fight the little stuff, but cooperate with the big stuff—that’s my Alex.)

We gave him the dopey medicine, and within a few minutes Alex was ready to go.  The anesthesiologist had suggested it would take about ten minutes.  Alex waited three, then took my hand and led me out.  The bed was waiting for him, but I think Alex’s readiness took them by surprise.  With help, he clambered up into the tall bed and lay down.  He knew what was expected of him, and I guess he just wanted to get it over with.  I kept pace as the doctors wheeled him to the double doors, offering what comfort and reassurance I could.  Through the dopey haze, Alex smiled and nodded, then let his eyes droop closed.  And they were gone.

For a moment, I stood, feeling a little bereft.  Then, I went back for my purse, headed to the car for our hospital bags, and settled into the waiting room.  I tried to work on a paid assignment from a print-out.  I made a little progress, but my ability to concentrate was hindered by the other people waiting and by the rather enthusiastic, but silly talk show host and guests jabbering away on the television.  I cut about half of the material that needed cutting from my draft, but couldn’t work on the transitions, since I couldn’t hear the words in my head over the drone around me.  So, I put it away and worked on some of my novel planning, which required less concentration.

Time passed.  I was restless.  As much as my work is sedentary, it doesn’t require me to just sit and wait.  I get up and do things when my body needs it.  Here, I had to check the progress of the surgery each time I left the room.  Luckily, my timing was good, so when they came for me, I was there and seated, waiting in readiness.  I quickly put away my things and went back to the private, little cubby we’d started in.  Alex was still drowsing under the effects of the anesthesia, fluttering between sleep and wakefulness, covered in blankets, and beneath the blankets he was naked.  A patch of gauze was taped over his incision, and his hand was wrapped with self-sticky bandages to keep him from trying to rip out his IV again.

He threw up once, violently, but then was done, and seemed to feel better.  He refused to drink or eat for them, but I’d warned them that might happen.  The nurse had gone through the trouble to get Alex cheese sticks, but even these held no appeal for him.  After a while, he let me dress him.  Then, he let me put water to his lips by placing the droplet on my finger and touching to his lips.  He’d rub it into his chapped lips, but wouldn’t let me bring cup or straw near to him.

The nurse called the doctor to ask if Alex could go home without drinking, and that was approved.  A little while later, I brought the van to the front while they rolled Alex to me in an oversized wheelchair, so he could curl up in the seat.  My new, full-sized van made the trip a bit easier.  I opened the double doors wide, and then lifted Alex up and placed him into the nearest seat, reclining it a little, buckled him in, and covered him with my winter coat, which I’d left in the van.  The hazy sun had burned away the fog and the slickness, so the drive to my mom’s was quick, and aside from the chill of surgery and the overall comfort of being just on the edge of too warm, the coat/blanket was unnecessary.

Everything went smoothly.  Everyone adapted their expectations to Alex’s peculiarities, especially in regards to not assuming that his unwillingness to eat or drink was a sign of distress.  I did have a bit of difficulty getting the pain medicine from the pharmacy, though that might have been a product of my fatigue and worry.  In the end, the pain medicine turned out to be a liquid form of regular Tylenol in a kid-sized dose; so we’re using the tablets of “melt away” Tylenol that we usually use instead, because I can crush it up in his class of soda, just like I do for the melatonin, and he takes it much better that way.

Pre-Op Excellence

  • Posted on January 25, 2012 at 8:00 AM

Sometimes, I can’t help but feel that Alex has had a hard time of it.  It’s not just that, of my three boys, his autism is the most severe.  Or that he struggles to communicate even simple needs, and is predominantly non-verbal.  He grows frustrated, and acts out with aggression.  His sensory system is under constant barrage, it seems, and I can’t seem to find a way to help him manage it.  He’s had his tonsils and adenoids out, due to frequent illness.  As a baby, he experienced reflux disorder, which made the simple act of eating painful.  His eating habits grew worse, though, for a long while, instead of better.  He’s had one hernia surgery.  Despite, surgery on his eye, he’s likely blind in one eye, because he would not cooperate with the treatments that would help strengthen his eye and retain its vision.  Now, he’s having another hernia surgery, to repair the hernia on the other side.  His health has never been terrible, but it’s never been terrific.  Poor nutrition due to his self-inflicted dietary limits, plus the delays, have given him a susceptibility to colds and flus that seem to last longer with him than with his brothers.  To top it all off, of the three boys, Alex is the only one who hasn’t retained a deep attachment to a special therapist from his intensive program.  In retrospect, the intensive therapy he received was a sham—a waste compared to what it could have and should have been.

I know there are many children, some with developmental delays even more severe than Alex’s, who have experienced even more health issues than he has.  Many children have to struggle through without even the opportunity to receive the kinds of therapies and supports that Alex receives.  I know this, but it’s not a comfort.  Of my three boys, Alex is the only one who has had to endure surgery.  This is lucky.  All Alex’s surgeries have been fairly minor, straightforward procedures without complications.  This too is lucky.  But, as much as I tell myself these things, I can’t help but feel like Alex got the short stick from amongst his brothers.

Now, it might seem like I’m feeling sorry for myself.  I’m not.  This isn’t about me at all.  But I do feel strongly that, somehow, I’ve let Alex down.  Everything we’ve tried—it’s not enough.  Sometimes it seems all the love we can give him isn’t enough to ease the hardships he faces.  He’s a wonderful, talented boy.  This I know.  And I worry that, as hard as it’s been, when he has to go out and fight for his right to be himself and to be recognized as someone with a positive future, that it will get harder still.  I love him, and I feel so tenderly for all that he has faced and all he has struggled through, and that I, as his mother, have failed to ease his way.

It was with this somber mood that I left the surgeon on Thursday, who confirmed that yes, the swelling in his testes was another hernia, not hormones, and who felt the urgency warranted a quick turn-over.  Alex would be in surgery on Monday morning.  I took Alex to his pediatrician on Friday, for a pre-surgery physical.

After the nurse did her thing, Alex’s pediatrician did his.  When it was all done, the doctor leaned back on his heels and nodded, a satisfied smile playing across his lips.  “Is he okay for surgery,” I asked.  “Oh yes,” the doctor said, “he’s okay for surgery.”  He looked at me, our eyes meeting briefly, and the smile grew larger.  “Alex is in excellent health,” he said, the dignified smile growing broader.  The significance of the news must have registered on my face in some way, because the doctor nodded, looked at Alex, and said, “You’re doing great, young man.  Keep it up.”

I don’t know for sure what Alex felt or how much of the exchange he understood.  I think he was just relieved that this doctor didn’t push the herniated intestine back into place.  (Which I had watched with freakish curiosity and wide eyes as the surgeon did so the day before.  Alex didn’t cry or anything, but that could not have been comfortable.)  Alex tried one more time to fit “Veggie Tales” into the little username box on the computer in the room, and then he let me help him get bundled back up.  Snow streamed by the window, hiding the street beyond, as I helped him into his snow pants and zipped his coat.  Alex focused on the snowy show.

When I got Alex back in school, I couldn’t help but share the news with his teachers—both the old teacher and the new one.  Then, as soon as I was able, I had to share the news again with my husband, in e-mails, and on social media.  It’s a hard-won victory and those words, “excellent health,” so much so that it almost makes up for Alex needing another surgery.  Almost.