Just Like Everyone Else

I sat on the bench at the local kids’ play gym, watching my two youngest.  Tonight was the Special Needs Playgroup night at the gym, and about ten families of children were in the huge enclosed space of toys and mats and dress up clothes.  R was working in New York City these days, so I was alone with the kids; Zach was working at his new job at the local sub shop this Friday night.

It was good for me to get out of the house.  I’d been wallowing in self pity for weeks, watching as the fans moved on.  I felt stupid.  I felt like I’d wasted so much time that I should have given to my children and my husband on something that evaporated before my eyes.  I admonished myself daily that perhaps if I wasn’t so worried about promoting Rick Springfield that I would have noticed Michael’s issues sooner, and gotten him more help faster.  How many hours had my three kids sat around watching TV while I talked with managers, record companies, other fans?  How many fits of stress induced anger had they been subjected to because I was trying to be everything to everyone?

I looked up to see Michael getting upset because another child wanted to go through the flexible fabric tube he was playing in.  He’d been in there ten minutes, repeatedly and incessantly going back and forth in it.  I went over to try to convince him that he needed to let the child have a turn when the little boy turned away and made a beeline for the train table.  “Sorry,” I offered to the mother.  “He isn’t really great at sharing, yet.”

“Well if there’s anywhere else that someone would get that, it would be here,” she responded, smiling.  She was young, younger than me. “My name’s Jessica.”

I nodded and held out my hand, telling her my name.  “Do you mind me asking what your son’s diagnosis is?”

She bolted and ran from me.  I followed the direction of her sprint to see her stop her son just in the nick of time; he’d been about to whack another little boy, this one with obvious Down’s Syndrome, on the head with one of the trains from the set.  “No!”

It almost made me feel a little better.  Here, Michael didn’t seem so different.  People weren’t going to stare when he launched into his recital of the theme from his favorite TV show; they weren’t going to be fazed by the Pull Up peeking out from his trousers even though he’d just celebrated his fifth birthday.  They weren’t going to bat an eye when he screamed about someone else hogging his favorite toy.

And here, I didn’t seem so different, although I was.  No one here knew.  No one here knew my very public shame, that I’d lost the gig working for the famous rockstar.  In my tiny New England town, at the special needs playgroup, I was just like every other frazzled mom of a spectrum child.  I was trying to balance the needs of my typical kids with those of my very needy child.  I was a stay at  home mother because of the crazy schedule I carried of preschool, therapy appointments and support groups.  No one here was whispering about my fall from grace, or was talking about how I hadn’t been good enough.  And here, watching Melinda play with Jessica’s older daughter while keeping tabs on Michael’s current mood, I almost didn’t even have time to think about who I used to be, not so long ago.

I wondered, in that quiet moment, if Jessica or the other parents could sense the sadness I carried with me, heavy in my chest, just under the surface of my sympathetic smile. When I paused, the guilt, the regret, the self loathing rose into my throat.   What did these people see when they looked at me, these other parents?  They didn’t know the girl I used to be in any my former lives.  These strangers couldn’t imagine all of the things that floated in my head these days, the things that I once had and now lost:  Joe, Ray, my teaching career, my job working for my idol.  I was 35, overweight, and all I saw in the mirror was the shell of the shining potential I used to think I had.

I looked up to see Jessica return to the center of the room where I stood, able to be within arms reach of Michael.  “He’s not diagnosed,” Jessica responded breathlessly.  “But he’s over there repeating the presidents of the United States over and over, in order.  What do you think that means?”  Her face was full of anxiety and fear.  “He’s just turned four.”

I looked at her, trying to put on my friendliest, most sympathetic face.  “I’m not sure,” I answered.  “But I can’t help but be jealous.  My kid just recites the the scenes from Blue’s Clues over and over.  At least your kid memorized something useful.”

Jessica laughed and looked around.  “It would really be so much more helpful if they served alcohol here at the snack bar.  Don’t we deserve a little nip for all we have to deal with?”  And off she went again, to rescue a six year old red head who had unwittingly interrupted her son between McKinley and Roosevelt.

I smiled, for the first time in what felt like years.



The Will To Live

The look on Paul’s face said everything that I knew but had not allowed myself to think about over the last three days.

Paul, the husband of my friend Jewel, was standing at my front door.  It was Friday evening, the darkness spreading early in the cold February night.  My house was loud and bright; there were people in the kitchen speaking loudly and a nurse in the front room with my mother.  Friends had brought over dinner and it was being heartily eaten by the five or six people huddled standing around the table. They were loudly talking, laughing and generally trying to forget the reason they were all gathered here.  If you didn’t look over to the sofa, you would never have known what was transpiring that evening.

But Paul did look.  Paul looked over to my mother on the sofa, with her oxygen tubes snaking out from under blankets, her gray pallor and breathing so loud he could hear it before he even knocked on the door.  The horror on his face said everything about what was really going on at my house that night.  We were on a death watch, and my mother was dangerously close to the end.

“Thank you so much for coming over, Paul,” I said, businesslike, trying to draw his attention away from the spectacle that was unfolding.  “I really appreciate you coming to pick up Zach.  I have all of his things together for overnight.  His toothbrush, his pajamas, his blanket, everything you’ll need.”  I paused.  “Thank you,” I said.  “I don’t even know where to start.  Thank you.”

Paul’s eyes slid from the figure on the sofa to me.  Warm sympathy took over the frozen stare as he composed himself.  “Of course,” he soothed calmly.  “As long as you need us to have him, we’re happy to do it.  Just give us a call tomorrow and let us know how it’s going.”

“I will,” I promised.  “I’m sure we’ll know by midday where we’re at.”

“I’m so sorry.”  Paul gathered me into his arms for a warm hug.  I had heard the words so many times in the last few days that they hardly seemed real anymore.  “I wish there was something more I could do.”

I pulled away from Paul and touched his sleeve.  “I can’t thank you enough for helping me out with Zach.  This is obviously not a good place for him to be right now.  I don’t want him to see any more of….this.”   I turned slightly, seeing the hospital bed, the table full of pills, the portable commode in the center of our living room.

I went to retrieve Zach from the crowd in the kitchen and told him excitedly about his nighttime adventure over Uncle Paul’s apartment.  He smiled at me as I zipped up his warm winter coat, oblivious to the fact that this was the last time he would see his grandmother alive.

The nurse on the sofa beckoned me over as I closed the door.  “I honestly don’t really know how she’s still here,” she told me in between my mother’s bursts of loud, mucous filled breathing.  “She is having a lot of episodes of apnea, she’s not eating or drinking anything and she’s barely responsive.   Is there something she could be waiting for?”

“She keeps asking when her brother is arriving.  Every time the morphine wears off, she asks if he is here yet.”  We’d all been wringing our hands for days over the fact that my uncle had waited so long to get on a plane.  He lived in Los Angeles, and we’d called him two days ago with the word that my mother had taken a significant turn for the worse.  Finally, earlier today the word came that he had been able to get a seat on a red eye flight overnight tonight.  He and my aunt would be arriving at some point late tomorrow morning.

“Ah ha.  That must be it,” the nurse nodded at me.  “I have seen it before.  Patients will themselves to live for a person to arrive or an event to happen or something specific, something tangible.  It sounds crazy, but the will to live is a powerful force.  I would say it’s pretty clear she’s waiting to see her brother.  When’s he going to arrive?”

“Tomorrow morning,” I answered.

“I’ll be by the phone.  It could happen tonight, or she could make it until he gets here, I just can’t say.  But you know the drill, right?”

“Call you first.  Don’t call the police until after she’s passed.”  This was Hospice protocol.  Even with an Advance Directive for no heroic measures, Hospice recommended that families wait to notify the authorities until after the death.

My sister came in from the kitchen.  “Everything OK?”

I laughed aloud.  Everything was about as far away from OK as I’d ever seen them.

Turning Point

Journal Entry: 12-25-1987

“Today is Christmas Day, 1987. This Christmas seems really humble as far as it goes, pretty ordinary. But I came to a big realization today, and it is embodied here: I trust, I have faith, that I never had before. There is a part of me that is content, even though not everything is perfect in my life. Not everything is rotten, either.

But I hit low (again, you can tell where I pick up even in this journal; I’ve really been a downer lately) last Thursday. Jill and I had just played in public together for the first time – a dream come true. Even though it was only a school concert, we tried to bring some professionalism to it. It went…fair. Both Don and John – Jill’s and mine ex boyfriends – showed up to see us. John’s a little better around me, but he can obviously not take me for very long.

After our ‘decent’ performance – Jill is hypercritical and it is getting to me – I was ignored by John. Jill and Don began to get very comfy. So I took off. This ticked me off because no one seemed upset. I tend to run away when an uncomfortable situation arises. So I went home feeling very blue. I wanted to call someone, but there was no one to call.

Sadly, I remember this night well. My parents showed up for the concert but missed my pre concert lobby stylings of our jazzed up, improvisational Christmas carols with Jill before the show. It was the biggest thing I’d done up to that point with music. Jill and I had spent so many afternoons at the local community college practicing in their practice rooms (they had pianos in them, the high school didn’t). We were very proud of our hip, jazz holiday music. I’d built up the evening into a huge deal in my head. And the exes showed up; I wanted to be good, fantastic, fabulous. I was dressed in a hot, red dress of my mother’s. After a year of working out with her every morning I thought I looked pretty good, and I wanted insane jealousy and misgiving on John’s part. I didn’t get it. I sat up for hours that night, looking at old photos, listening to music, thinking of how I just screw everything up. I screwed up my brother’s life, that’s why he was always hitting me; that led to screwing up my mother’s life by having her son removed from our home; I screwed up my sister’s life by not allowing her to live her teenage years normally, instead she had to be around to watch after me. The negative self talk went on, building on itself in my head until well after my mother fell asleep snoring on the sofa.

Long story short, I was alone, and I took a lot of pills. I felt very sorry for myself. I tried to call Ray after (to tell him off and finally give him a piece of my mind), but changed my mind.

I woke up around 2 am with an incredible stomach ache. I couldn’t sleep. So I thought about a lot of things.

I felt stupid. Really stupid. At one point I actually thought I was dying. I really did. The world got very fuzzy and far.

My mother had tons of old headache meds in the cabinet in the bathroom. My eyes blurry from tears, I went in there and started swallowing handfuls of little, pink pills. She had no idea. No one did. It proved, in my head, of how alone I was. But as the world started drifting away, I started feeling something else: fear. This was different than when I’d cut my wrists last spring. I could feel things getting fuzzy and blurry and slippery in my head. I started to panic, only to heave up all of the pink pills in the middle of the night.

But I didn’t. I got ready for school the next morning. All of my friends were there, it was the last day before break. They all wished me Merry Christmas, etc. I have good friends. They are there for me, even though I didn’t tell them. One kid found out about it. He was upset for not coming to him. Even my flute teacher, for no reason at all, assured me that I can call him any time and talk to him, or to his wife if I need to. But it didn’t click until today: these people aren’t just trying to appease me. They really care.

I guess it’s better if I don’t try to figure out why. And if there is something good and right for me out there. God didn’t let me die – I just need the trust and faith to ralize that even in my imperfection, I will turn out OK.

I realized I wasn’t alone the morning after it happened. My friends were gracious, even though none of them knew what had happened the night before. I got Christmas gifts and hugs and happiness, and I was overwhelmed. Mr. V, the journal reader, wrote kind words of reassurance and offers of help if I needed it. Mr. H had been doing the same. How could I let all of these people down? Enough. I wasn’t going to be a victim of my past any more. Yes, my head was a mess. But I had help, and I needed to recognize it and accept it.

Addendum to Mr. V: I just have to say this: thank you so much for your little reassurances in here. Just knowing that someone is out there willing to listen – someone with more than a little intelligence – it helps immensely. I am so glad I did not die, but so scared that I wanted to. I just had to let you know that your notes in here were not ignored.”

Mr. V’s response: “If I may amend this (the last sentence in the entry): you are already OK. Thank you. I need reassurance too – just as much as you. My ear and my heart are open to you – in this journal or in person.”

A Word from the Future

I have had a headache for two days, and that’s why I haven’t blogged.  The last time I missed, I had stomach flu.  Don’t worry, I plan on spilling the beans on what happened the night that I lied to my mother and stayed out with my girlfriends and the Older Boys.  Promise.

It’s funny, though, as I go through my dusty old memories as I live my life today.  I get headaches, for example.  My mother used to suffer terribly from headaches, as I blogged about here. She never really did get to the bottom of them at all, though she did start visiting a chiropractor, and they eased up.  While my mother put full faith in the doctor that adjusted her back, I never have.  I’ve never been to one and don’t plan to.  I don’t think my headaches stem from any compressions in my spine as my mother’s probably did.  But I do get them, and I’ve had some that have rivaled some of the worst of hers too.   I have had my current one for two days, and normally they hang on for a while.  I went to a doctor last year about it, and had an MRI that came back normal.  But I came out with some heavy duty $5 a pill pills, and I probably will have to take one of them today.  I never got the headaches with any regularity until after I turned 30.

I wish I could talk to her about them.

I have three kids now, and as I go through my dusty old memories, the difference in the world today and all of their experiences is shocking to me.  For many reasons.  It’s fun  to write about the time we got our first microwave oven, our first experience with cable tv.  Our first VCR comes soon in my story, but our first TV with a remote comes much later.  These are things my children think are as much of your home (well, VCR maybe not, DVR or DVD perhaps) as the sink and the toilet.  And cell phones…oy.  We drove all of those times to Grand Rapids and you never even thought about how alone you were on the highway.  We never did until we had our accident that winter and had to wait and wait for the police simply to find us out there in the snow.

I’ll be back to my chronological blogging soon, as I caffeinate and medicate my sore head, but I wanted to get something down here lest any of my three readers think I’ve abandoned the project.  I haven’t.  I swear.

Headaches and My Mother

My mother had a lot of headaches that year.  When we’d gone to Grand Rapids the year before for Christmas, my mother had spent nearly the entire four day sojourn in bed at my Aunt Maurine’s house asleep.  Everyone said it was a migraine.  It was scary to watch her helpless in bed like that.  I’d never seen an illness that could debilitate you for that amount of time and make you so incoherent.  I didn’t know how we would get home if she couldn’t even sit upright.

When we finally got home, my mother started seeing a chiropractor.  The doctor said that she was having compression on her discs, and he recommended traction for her.  I never really did catch up on what exactly was involved, but she came home with a contraption that she hung from her door, and it helped her be put in a position that helped her discs move back into proper place.  Also, from time to time, she asked me to walk on her back, which was an odd thing.  It seemed like that might hurt, not help, but she always seemed to feel better after I did it.  I was asked to do the job because of the three of us, I was the lightest.

My mother was also medicating a lot.  She would take little pink over the counter aspirins…Salernos or something like that.  Then she moved onto Excedrin.  I hated having those in the house, because when I had to take one for the occasional headache I would get, they were ridiculously hard to swallow.  Finally, my mother went across the Canadian border with some friends and bought some medicines that weren’t exactly legal in the United States.  I don’t exactly remember what they were, but they were likely something similar to Tylenol 3, a combination of an over the counter pain reliever and a more powerful prescription pain reliever.  I worried about the fact that she had to take the Excedrins at least every day, but at least it kept her upright.

Finally, after about a year of varying levels of discomfort, my mother seemed to feel better.  She wasn’t spending entire weekends in her bed, with us creeping around the townhouse like rats scurrying to find a quiet corner.  She kept up her visits to her chiropractor, and her weight continued to climb, but her headaches seemed more manageable.  I was glad.  It was bad enough to be worrying about our finances and whether my mother stayed out too late with her girlfriends, but taking care of my mother when she was sick was a role reversal that I wasn’t quite ready for at age 13.

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