What Mattered Before

The MRI.  Remember that?  Yeah, I’d forgotten too, even though it was so horrible at the time.  Funny how the world puts things in perspective for you sometimes.

My son had reported to me that he wasn’t “seeing out of both eyes” about a month and a half ago.  I took him into the eye doctor, thinking it was about time for him to join in the family tradition of wearing glasses.  Except the eye doctor didn’t find appreciable differences between his two eyes in terms of vision, and worried maybe it could be a sign of a larger problem.  With my son being on the autism spectrum, there was truly no way of knowing if this was a recent occurrence or if this had been happening for years and he just hadn’t been able to express it clearly to us.

Yeah.  So I spent the interim time between the eye doctor visit and the scheduled MRI scan freaking the $#@# out

The scan was done on December 12.  Because my son is on the spectrum, the scan was done in the hospital, under anesthesia.  Hospitals aren’t exactly warm fuzzy places.  And despite every one doing everything they could to be super incredibly nice to my son (even putting a hospital bracelet on his stuffed bear, who was allowed to stay with him the whole time), it was a really unpleasant experience.

My little guy held it together pretty well until we made it into the room where the MRI machine was.  He was still awake then, and they had a mask for him to breathe into to put him asleep.  They were going to wait to put the IV in until he was asleep (smart move).  But the mask and the huge machine and the four people it took to man it all not surprisingly made him very nervous.  I held his hand until he got drowsy enough to let it slip out of my hand, and then they led me to the waiting room.

The scan took an hour.  They scanned his head and neck.   Once they were done, I followed his gurney with him still asleep to the same day surgery recovery area.  Thankfully it was mostly empty and quiet, because when my little guy woke up, he was scared out of his mind.  He cried, he thrashed, he really freaked out when he saw the IV in his arm that wasn’t there when he went to sleep.  He felt nauseous, he was disoriented, and he just couldn’t hold it together.

It felt so, so very hard at the time.  I remember thinking how terrible it was, how awful it was, what a terrible day it was.  How I couldn’t wait to get home and let him snuggle on the sofa while I poured myself a glass (or three) of wine.  I worried what the scans would show us, how awful the news could potentially be, and how I should enjoy these blissful few days of not knowing.  Because life could be about to change.

Two days later, of course, the world did change.  I didn’t have the news yet about the MRI.  But obviously, I didn’t mind.  I knew that whatever the news was going to be for us, it wasn’t going to be as bad as what had happened to those families in Newtown.  Even if it was the worst news, I would have time to prepare my child and my family and myself for the worst, a gift those families didn’t have.

Finally, a few days later, I got the word that the results of the scans were normal. It was a relief, a pin prick of good news in the numbness of that week following Newtown, a week of funerals and sadness and fear.  My little boy will be fine.  My little boy doesn’t have the worst thing that can happen happening to him, and neither do we.  We were lucky.  Again.

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Freaking the @#$%#$ Out

Pardon me while I spend the next seven days trying not to freak the $#@#!$ out.

My son, who is on the autism spectrum, came home a few weeks ago with the results of his eye exam at school.  Here in the Northeast, we are fortunate to have nurses in every school and they run vision screenings  once a year.  Michael’s are always fishy.  They always send me a note saying I need to get his eyes checked out.  But the pediatrician always says that his eyesight is fine at the well child visits.

A few years ago I decided I better take him to an eye doctor, because I wear glasses, and so does my husband.  My husband’s eye problems are very minor and he didn’t even start wearing glasses until he was in middle school.  But mine are severe.  I’ve been wearing glasses since I was two, and my mother was partially blind in one eye.  I have astigmatism, extreme lazy eye and am far sighted.  So I figured I’d better get an eye doctor involved since there were questions.

Michael’s visit was a disaster.  Three year ago, I think it was.  Since Michael is on the spectrum, you can imagine what the bright lights, the asking of questions by strangers, the dark rooms and the strangers in the waiting room brought us.  But the worst was the drops to dilate his eyes.  I ended up having to hold him down on the floor so they could be administered.  And after that?  He was not exactly compliant with answering the questions the doctor had.

Still, the doctor gleaned enough information then to tell me that he didn’t believe M needed glasses at all.  I was shocked, but relieved at the same time.

Fast forward till a few weeks ago.  Michael gets tested again at school, and comes home telling me that he mostly sees out of only one eye.  This is classic lazy eye talk, so I promptly seek out a new eye doctor based on friend recommendations (since the other one didn’t exactly handle M’s freak out very well) and make an appointment.

The whole appointment was going about how I expected.  The doctor was, as promised, fabulous.  Funny, caring, really careful knowing Michael’s issues.  Michael is also older now, so much better able to handle his discomfort.  There was lots of reading letters, looking through various lenses, and I was sure that they would be writing me the script for Michael’s new glasses.

Except, no.

Michael’s vision is nearly the same between the two eyes, and both are below the threshold for needing correction.  He doesn’t need glasses.  But he definitely is favoring one eye over the other.  The question is, why?

The doctor was perplexed.  Normally, lazy eye comes from disparity in vision between the two eyes.  One compensates for the lack of ability of the other.  But that wasn’t the case with my boy.  Either his eyes had been much more disparate in the past and he hadn’t been able to communicate it, and now the eyes are growing and changing and becoming less different, but the habit is in place.

Or.

Or this is a recent occurrence.  In which case something else is going on.

There’s no way to know.  M says that it isn’t recent, that he’s always been this way, but it’s hard to know, because his concept of time is not the same as the rest of us.  Also, he never was able to communicate clearly about much until the last few years.  His teachers never have thought (even last week when I asked them) he had a vision issue.  He’s never had headaches or crossed eyes.

So, we have to find out if there is “something else” going on.  Which means an MRI scan at the hospital, next week.  With M’s issues, he’ll have to do it under anesthesia, because there’s no way he could lay still for the amount of time he’d need to.

It’s probably nothing.  It’s probably a situation that he’s had forever and is just being able to communicate.

I have to wait at least seven days to know that for sure, though.  And in that time, I have to be sure not to consult Dr. Google.  Because Dr. Google is scary.  He talks about things like aneurisms, and tumors and all sorts of scary things.

So I will watch, and wait, and try not to freak the #$@$# out.  Still, if you have a prayer to throw in our direction, I would be grateful.

Death and Dying

My great aunt is sick.

Well, it’s more than that, I suppose.  My great aunt is more than sick.

My great aunt is dying.  Right now.

My great aunt Katie is my mother’s aunt, her favorite aunt, and we were very close to her when my mother was alive.  Most of my happiest childhood memories involve her.  We used to drive to their home three hours away in Grand Rapids, MI so often that the exit number was forever burned in my brain:  Exit 40A on I 96.  In fact, sometimes when I have trouble sleeping, I mentally walk myself through their rambling ranch house on Maryland Avenue, and remember the events that happened in each and every room.  The Christmases we spent in their open plan living room/dining room.  The political debates my Uncle Dave and my mother would have in the den.  The Buick that was always parked in the driveway.  The back patio where my Uncle would sometimes serve Bloody Marys on Sunday mornings in the spring.  The bedroom where I spent a summer living after my uncle passed away, because my aunt was too sad to stay in there without him.  And finally, always, the garden my mother and I raided for plants after their house sold (plants that bloom still in my own garden nine hundred miles away).

It was my Aunt Katie that came to help after my Zachary was born when I was just 19 years old.  My mother was helpful but of course had to work, and it was Aunt Katie who stayed with me during the days and cleaned and cooked so I could rest when the baby rested.  And why not?  Apparently she’d come when all three of us were born to my mother.

It was my Aunt Katie again who came when my mother was diagnosed with lung cancer.  She arrived before my mother even got home from the hospital after her surgery to help again in the background so that the rest of us could focus on my mother.  It was she who sat with my mother during those early days while I completed my student teaching, holding her hand and convincing her that it was indeed a good thing that she hadn’t “died on the table”.  She stayed for a month trying to make sure that my mother would accept treatment (she succeeded in a way that only an older family authority could, unlike me).

And it was my Aunt Katie still who came when my mother passed away, coming in time for the funeral and staying for a week after to help me and my twenty two year old self pack up things and hold my hand while I cried endless tears of loss.  I was an adult, but still felt very much the orphaned child, and she let me wallow in that for a few days before she taught me how to handle my loss like a grown up.

After her husband’s death, Aunt Katie lived with her daughter in the Virginia suburbs of Washington, DC.  I always made a point of visiting when I would travel out there in the summers when Zachary was young.  But when Melinda and Michael came, it became much harder to get out there.  And her failing health and aging body made it impossible for her to visit me after their births as well.  In fact, she’s never met either of them in person.

I’ve only seen Aunt Katie twice in the last ten years, as a matter of fact.  Once, at her granddaughter’s wedding.  I flew out there alone in 2003 because it was impossible for R to get away from work.  And then again, three years after that, for another great aunt’s funeral.  By this time her daughter and husband had retired and moved back to his home state of Minnesota, and they moved her with them to an assisted living facility there.  They’d only lived there a few months when my sister and I traveled, again without our families, to a small town just south of Duluth, to see her.  She was already starting to experience the early stages of dementia then, and macular degeneration had robbed her of much of her eyesight.  But she was still the same Aunt Katie, telling stories and smiling at photographs and shining her warmth and light on all of us together again.

I’ve been so sad that my life and its path has pulled me further away from my Aunt Katie in the last ten years.  Especially now, knowing that the chances are simply all exhausted, to make things any different.  I have kept her close in my prayers and in my heart, but it just isn’t the same.  It kills me to know that while she had been there so often to hold my hand through times of grief that I will not be able to be there to hold hers.

She is in my prayers today, and I am hopeful that she is at peace and not in any pain.  And that somehow, some way, my mother will be there to help guide her home.

The 20 Year Old Wound

These days I call him “my eldest”.  It’s innocuous enough to not belie his non traditional way into the world, my nearly 22 year old son.  It still stings every time I hear the phrase, “Wow, you look young for your age” (insinuating that of course I must be older than I appear because otherwise I would have been WAY TOO YOUNG to have a child so old).  I’ve got a flip response that I always use to mask the way my heart tugs just a little every time I hear it: “Thank you so much!”  It perpetuates the charade right along with whomever dared to make a comment.  Most people are trying to be complimentary, I’m sure, but it always digs a little that that now decades old but yet still surprisingly fresh wound.

After my 20th high school reunion I tried to put to bed the fantasy that one day things would be different.  That somehow in adulthood Joe and I would find a way to make up for the lost years of Z’s childhood, where he and I found our way through life, growing up really side by side.  His absence there and my conversation with one of his old high school pals reminded me of all the ridiculousness of expecting others to behave as you wanted them to, rather than who they are.  There’s a quote I love that says, “When someone shows you who they are, believe them.”  After 20 years of waiting, I slowly gave up the watch after that night.

But last November, on a Sunday morning before church, my phone suddenly rang.  It was my eldest, calling from college.  He was in his senior year then, and I hardly ever heard from him on a weekend; they were too full of marching band, football games, and homework.  So my radar was up the second I answered and said:  “What’s wrong?”

A long pause.  “My great grandmother died last night.”

I drew a total blank.  My grandmother, his great grandmother, lived in Delaware and while in her early 90s, was not sick the last I’d checked.  And certainly if she had passed, my father would be calling to tell me,  not Z. His other great grandmother, my mother’s mother, had been dead since the 70s.  R’s grandmothers had both passed in the last few years.  My mind raced and scrambled, and then I realized:  he meant Joe’s grandmother.

I knew he’d met her over the weekend of my 20th high school reunion.  He’d kept up communication with Joe’s aunt and that weekend they’d met for the first time.  I could hardly stomach the idea of him alone with Joe’s family, but I also encouraged it and he’d spent an afternoon at the same home that Joe had lived at briefly while we were dating.   He hadn’t spoken much about it, but every so often Z would pepper conversations with comments about “his aunt” or “his grandmothter” or “the family”.  I asked him once if they ever spoke about his father and he’d said quietly, “No.”

“I’m so sorry,” I responded, taking the phone into the bathroom with me, away from R and our two younger children, who were in the final stages of putting on shoes and tucking in shirts for church.  “What happened?”

“My aunt told me in an email that she’d been sick and in the hospital, but she thought she was getting better.  But then late last night, she sent one to tell me that she’d passed.  I’m so mad at myself for not checking my email when we’d gotten back from the game last night.”

I sighed.  “Well don’t beat yourself up about that, Z.  You couldn’t have known what was waiting in there for you.”

“I know,” he answered.

There was a question hanging between the 700 miles between us.  Z hardly ever spoke about his father, but there had to be a reason he’d called me to tell me all of this on a Sunday morning.  He called home once a week these days, sometimes less.  He wanted to talk about this.

“So what are you going to do?” I asked slowly.

 

A Labyrinth of Medicine

“How can they still not know what is wrong with you?” I asked, frustrated, after arriving at the hospital the next morning.

It had been a crazy day.  I’d picked R up at work, where they did have a small, medical clinic.  The nurse there did tell us which hospital of the two in the area to go to(I’d never had to go to either of them in the four years we’d lived in the area so far, so I had no idea where to go; I plugged the address into my new navigation device that I’d gotten last year).  R looked horrible, clutching a plastic grocery bag like it was his lifeblood; he vomited into it three times on the way to the hospital.

Once we arrived in the emergency room, we waited.  In the waiting area, even though we told the attendant at the desk that there was possibly a cardiac situation going on, we waited.  My husband, a big man who outweighed me by nearly double, needed my help to sit up.  It was only when he fell to the floor and passed out that he was put on a gurney behind the double doors that led to the labyrinth of the Emergency Medical Department.

Where we waited.  R was hooked up fairly quickly to an EKG machine to check whether or not there was a life threatening situation going on.  When it was determined that he was not having a heart attack, the nurse politely wheeled us out of the cardiac check room and into the hallway, since there were no open curtained areas available.

By this time I’d had to start making phone calls.  Z first; he was still home from college.  He could take the children off the bus and mind them until I could be home.  Thank goodness for that.  Then R’s parents, R’s boss, then my father, then my sister, then my husband’s cousin who lived close by, then my girlfriends.  No, we hadn’t seen a doctor yet.  Yes, they checked him for cardiac issues.  No, it doesn’t look like a heart attack, but we haven’t seen a doctor yet.

It was dinnertime, after we’d been moved into a different hallway (this one actually set up with spots in the hallway for gurneys; I had never seen anything like it) before a doctor finally made his way to us.  They’d have to run some tests to see what was going on, nothing could be ruled out.  In the meantime, they’d see about getting R somewhere “more private” to wait.

It was nearly ten PM before R was finally moved to a room in the emergency department.  R’s cousin stopped by to bring me dinner and give us some company.  A few doctors had been by and there were various theories, but no one was going to know anything until they ran some tests, which would have to wait until the morning.  Finally, R had sent me home; there was nothing that could be done, and he would be fine for the night now that he had four walls surrounding him.

It was a full 28 hours after his arrival at the hospital before he was finally diagnosed, admitted to the hospital and scheduled for surgery.  We were all tired and exhausted.  R was finally diagnosed with the most drama filled and least obvious case of gall stones in the history of the world.   He was scheduled for surgery the following morning.

You Can Count On Me

“I just don’t know who to ask for help,” my sister said over the phone.

My sister, who still lived in Michigan with her husband and children, needed to have surgery.  This was actually the second surgery she was going to undergo, having had a hysterectomy a few years ago.  She had not healed properly, and her doctor had found an infected area somewhere “in the nethers”, so she was going to have to go back in to have it corrected in late July.

I was confused by her statement, about not having anyone to ask for help.  “Your children are 17 and 13, aren’t they capable of taking care of themselves during the day?”

She sighed.  “Mostly, yes, of course, but still.  Neither of them can drive, and my husband has to work all day.  My daughter has some things that can’t be rescheduled.  Plus, I am going to be in a lot of pain; I can’t really expect them to help me up or down the stairs or anything like that.”

I wasn’t sure why not.  I wasn’t but a few years older than her oldest when I was designated the primary caregiver for my mother during her battle with lung cancer.  But there was no questioning this; my sister didn’t want her kids to have to see her that weak, and she wanted someone else to do the “heavy lifting” so to speak.  Fair enough.

“What about your husband’s family?  I mean, he has four siblings, some of whom have not only spouses, but also driving aged children.  Plus his parents.  Couldn’t a few of them pitch in?”

Another sigh.  “I just don’t feel comfortable asking them for help. Plus they all work too. Same with our brother, who would be no help regardless of whether or not he was even available.”

I knew what she was asking, without actually putting the request into words.  She wanted me to come out to help her after her surgery.

I did the mental math.  If I drove out the day after Michael finished summer program, I’d arrive the night after her surgery; she should come home that day.  Of course there was no way R could take time off of work for such a trip, which would be a minimum of four or five days plus a day each way for travel.  But Z could probably get the time off of his summer job, giving me another set of hands to deal with my two younger children on the ten plus hour long journey.  I could do it.

“Let me talk to R,” I said.  “I can probably figure out a way to get out there for a few days to help you through the worst of it.”

“Really?” my older sister responded excitedly, clearly relieved that I’d anticipated her question before she’d had to ask it.  “Oh that would be fantastic.”

“Happy to help,” I answered.

This was not the first time, nor would it be the last, that I felt much more like I was the oldest sibling in my family, not the youngest.

Pointing the Way

I sat on the floor with my little boy, him ensconced in the safe area between my legs, feeling my apprehension rise.

We were in the middle of an evaluation at Cincinnati Children’s Hospital, a screening for possible developmental delays.  We’d already paid $200 for a similar battery of mind numbing hoops for Michael to jump through at a local therapy provider, but the results seemed more attuned to them selling us expensive therapy sessions than any real diagnosis of what might be wrong with our son.

“I’m sorry, ma’am, but you can’t help him with the answers,” scolded the psychologist as I reminded Michael what a ball does when you throw it.  “He has to answer the questions exactly as we ask them, no variations.”

I looked at her, puzzled.  “But isn’t the objective to learn what he knows?  If you vary the question into a phrase that he is familiar with, he’ll be able to give you the answer you want.”

She looked at me sympathetically.  ‘I know this is hard.  But the whole point is for him to be able to do the tasks exactly in the way they are prescribed.  This gives a consistency amongst all children who are tested, and allows for an honest comparison of him against his peers.”

I nodded, cheeks flushed red.  Michael squirmed on the floor and a reassuringly rubbed his arm trying to subtly hold him in place.  I could see his attention waning; soon he would grow frustrated and start crying or worse, screaming, until I let him free from the pseudo cage I’d set up with my legs on either side of him.  “Michael,” the therapist encouraged, “What does the ball do?  Point to the picture.”  Michael blankly stared at the book of photos in front of him until he reached forward and tried to turn the page, desperately trying to find an activity that he would find interesting.

“Alrighty then,” the therapist said, writing down on her pad of paper as she closed the book.  “Let’s’ just let him play now and get to the parent part of the interview, shall we?”  She assembled some of her toys in front of Michael and watched as he took the shape sorter, a toy meant for children half his age.  He dutifully emptied it and lined up each shape, just touching edges, and then carefully placed them all in their exact right holes.

“Uh,” he grunted, holding out the full sorter to me.  I emptied it and he began the ritual again.

“Did Michael hit his milestones on time, like walking, crawling, pulling up?”

“Yes,” I answered confidently.  He had indeed.  Zachary had walked later than any of the younger two, and he was a straight A student.  What of it, I thought.

“When was Michael’s first word?”

“Um…he really doesn’t have any still.  Sometimes he’ll say something one day, but he doesn’t say it consistently.  I’ve heard him say a few words, but honestly, I think they are accidents.”

More words written down on the pad.  “And what happens if you break with his routine?  Say, you always drive a certain route home, but one day you drive a different way?  Or if you try to put on his socks first when you always do that after you dress him?”

My mind filled.  Just the other day we’d been driving home and Zachary informed me at the last minute of something he’d needed to drop off at a friend’s house.  So instead of taking the final turn home, we’d kept going straight and onto his friend’s subdivision across the way.  Michael’s screams were loud and immediate, and lasted nearly the whole ride until we came back to the place where we’d made the wrong turn.  “He definitely doesn’t like a change in routine,” I answered slowly.

“What about toilet training?  Is he showing signs of readiness?”

No, I thought.  Not even close, even though he was nearly three.  Melinda had been trained by this time.  So had Zachary.  “No,” I answered quietly.

“Does he ever ask ‘what’s that’?  Or point?”  I remembered that both of those were a constant litany during Melinda’s toddlerdom, just two short years ago.  I used to get frustrated with her constant “Wassat?” while I was sitting at my computer, or while I was driving, or during a grocery run.  I opened my mouth to answer when I suddenly shut it again.  I had to think, hard.  Could I remember Michael ever doing either of them?  Pointing?  I closed my eyes and shook my head slowly.

“No,” I whispered.  “He never has done either of those things.  I didn’t even realize that until just now, you asking me that question.  What does that mean, that he’s never done that?  Never pointed?  All kids point.  But Michael hasn’t, not ever, not once.”  I looked at her, fearful for the first time instead of just insecure.  “What does that mean?” I repeated.

“I will have to tally everything up,” she answered with the tone of a woman who has given the same test a thousand times, with the same, sad result more times than she’d like to remember.  “But I will tell you that not pointing, not asking what’s that is a classic, classic sign of autism.”

There it was again.  The A word.

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