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Posts Tagged ‘anniversary’

In five days, on August 16, it will be the fifth anniversary of Jonah’s departure from home.

That’s more than a third of his innocent little life, and I sit here and type this through a stormy mess of emotions.

For some reason that one comment from the other day echoes in my head, over and over.   I can’t be bothered to parent.   I can’t be bothered to parent.   I can say “haters gonna hate” and try to brush it off, but the troll’s words have gotten inside me, wringing my heart, making it pound pound pound in my throat.  I kicked my son out.  I can’t be bothered to parent.  The words are not true and I want to stop hearing them but I don’t know how.  I heavily edited my “about” page to more clearly define why we had to send Jonah away, and even as I wrote the new copy I asked myself why I felt the need to justify our actions.

There are many answers to that but the most important answer, I suppose, is to educate.  The idea of residential care for individuals with autism is repellent, and I get that.  It’s important to know the why of it all, lest they judge not only me but all others in my situation, lest they misunderstand the reality of residential care in the 21st century.  Jonah’s school is not an “institution” – it’s a huge, gated, beautiful campus with individual houses and a school building.  The caregivers and teachers are phenomenal; they are Jonah’s best friends and companions, advocates and educators.  These aren’t justifications.  I do not need to justify what was not our choice.  We didn’t choose this.

Parents who place a child in residential care aren’t throwing their kid away, I assure you.  Because guess what?  Even if there were parents who wanted to “throw a child away,” the openings at these places are so valuable there wouldn’t be availability unless the child’s home school district deemed it absolutely necessary.  The school district pays for it (in New York State, anyway) and moneycoin is, of course, a huge determining factor.

I just wish I wasn’t so hypersensitive. Or maybe it’s not that.  Maybe I’ve slowly developed an invisible shield in order to move forward through life and when trolls knock, the shield is shaken, endangered, a hole poked through, the feelings rushing in, too many too much too painful too real.   All the feelings I usually suppress.  Ignore.  Internalize – until I am, as I’ve described before, bow-string tight with bones gone brittle, shoulders hitched up, breath after breath after breath held…suspended…each new breath a hesitant, unwilling step into more future.

For five years I have lived this bizarre life of mother-not-mothering.  For five years I’ve spent most of my energy running away from how it feels never to watch Jonah sleep…how it feels never to be there when he awakens….never to know what it is to raise him.  It’s the most helpless kind of helpless.  I suppose my mind has created its own protective pathway to enable me to live this way.  I imagine my heart’s new primary purpose is to forget all the days we spent together, and what it was to shape his Self, and how I fell in love with his role in my life as my Boo.

I don’t know anyone who is in my situation, with their only child living in a residential school for autism, except Andy.  But we don’t talk about it, and so that most helpless kind of helpless is a lonely kind as well.  From a singular perspective I attempt to tell our tale, and like as not I speak a language so foreign it’s lost, dismissed, or plain old misunderstood by some people.

And just like that I’m off to find the Animals song, link to it, and look up the lyrics.  Is it schizophrenic thinking to feel how those lyrics apply to me?  To type the words out in paragraph form because I identify?

I only know this diversion serves as vacation from all the other crap I’m always on about.

“Sometimes I feel a little mad.  But don’t you know that no one alive can always be an angel?  When things go wrong I seem to be bad, but I’m just a soul whose intentions are good.  Sometimes I’m so carefree, with a joy that’s hard to hide, and sometimes it seems that all I have to do is worry, then you’re bound to see my other side.  But I’m just a soul whose intentions are good; oh Lord, please don’t let me be misunderstood.”

Why care if I’m misunderstood?  Why react so viscerally to the critic or the cruel?

Either way, I’ve been hibernating and closed off.  My mental energy is always working to stave off thinking things I don’t want to think.  I sleep and I sleep.  One day this week I came home from work and took a nap, only waking to eat before going to bed for the night.  I’m making up for those sleepless nights with Boo, back when I was a mothering-mother.

Jonah’s school called me today to join a conference call and approve a proposed increase in his dosage of Clozaril, since the drug is helping lessen the frequency of his aggressions but it’s not taking them away.  We talked about how he’s refusing to go to school (though they always get him there by 10am or so) and then I asked if anyone there had seen Jonah today.  One person had, in the classroom, and she described how he was making a great racket of noise.  He also had a behavior management at his residence this morning.  They didn’t disclose the severity of the behavior and I didn’t ask.

It’s difficult to remember a time when I did not embrace ignorance.

I guess maybe, well, five years ago.

This is another one of those blog entries I nearly almost always type with fingers slamming-hammer-quick on the keys, stream of conscious unthinking – and then delete.  But I think I’ll publish this one.

If I go away for another while, however long, I wanted to tell why.

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A year ago today, Andy and I dressed Jonah in a green “Hi!  My name is Jonah” shirt, drove him to the Anderson Center for Autism, dropped him off, and left him to live and attend school there.

I have a good memory for dates, so this was an easy one to remember – aside from the fact that it’s the day Elvis died (35 years ago today).  I woke up this morning with a strange feeling of dread, as though I were going to have to go through the whole thing all over again.

And yet something saved me from turning into the weepy self-pitying woman I, left unchecked, have the tendency to be.

That something was a boy.  And a box.

Someone on Facebook commented on the Scare Me Nots page (I am their facebook “mommy”) – and when I saw the name, I was compelled to look at their page.  The page is for a little toddler who enjoyed 3 months of health before seizures led to a discovery that his little brain is essentially degenerating – and there is nothing they can do.  I wrote to the boy’s mom and asked for her address so I could send her the Scare Me Not she liked.

Then, last night, I spent hours filling and decorating the box, all sides of the box, with pictures from books and magazines and calendars in my crafting basement.  I used a whole roll of packing tape and carefully adorned the box as though it were a gift in and of itself.  The process distracted me from thinking about how I haven’t had my Boo with me for a year.

This mama may not have her little boy at all for much longer.  There’s nothing like perspective to keep you from self-absorption.

When I got to work with the box in my passenger seat, I felt an urgency to get the box to her for her boy.  So I left work and stood in line when the post office opened, and I mailed it the fastest way I could.   Now I feel like I love her boy as well as my own.  I pray for him as I pray for Boo.  And after I mailed that box, I was no longer so worried, so pained, so obsessed with thinking, wishing, complaining, crying about my own boy — and I let go of holding myself bow-string tight.

Instead I felt humbled, and no longer alone in my sadness.  Pain is pain.  Loss is loss.  Everyone has to have some.  None escape grief and trouble.  We all have crosses to bear, some of them terrible.  Unimaginable.

Yet there is a hope we all must hold, that things will get better, that the light at the end of the tunnel is not an oncoming train but rather a beacon of sunshine.

That on the other side there is beauty — and others – even strangers – who really do care.

“All that matters is what we do for each other.”
  ~ Lewis Carroll

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a decade later

Today Andy and I have been married ten years.  We ate our annual delicious dinner at Lombardo’s when the respite sitter came.

But Jonah was awful, and it eclipsed everything.

He had an appointment at the eye doctor, and Andy and Jonah waited for 50 minutes before they were able to see her.  Shit, kids with autism can’t even wait for amusement park rides, let alone doctor appointments.  Why do they have those “move to the front of the line” passes for kids with autism at Disneyworld, but not at the doctor’s?   Jonah flopped on the floor and rolled back and forth.  He whined and he kicked.  He was loud.  People in the waiting room stared.   It was embarrassingly frustrating, and when the doctor finally examined him, it was hard for her to get a good look in his eye because he kept turning and twisting and crying.  There is too much pressure in his eye, she said, so she wants to see him again in a month.

Next week Andy is taking him to the hospital where he’ll be given anesthesia, simply to get his teeth cleaned and to fill a cavity.  Pretty soon they’ll have to put him to sleep just to look at his damn eye.

When Andy got him home, Jonah was still whiny and upset.  He does this thing lately when he is “emo” (emotional), where he wraps his arms around you in the tightest possible hug and smushes his face into yours, hard.   So Andy tried to just pry him off gently, but Jonah suddenly launched into an all-out tantrum and attacked, scratching him and screaming.  He snatched at Andy’s glasses, popping the lens out and twisting the frame, then, for an encore, he threw them across the room.   They’re broken now.  Andy fished out an old pair and, even though the respite sitter arrived, banished Jonah to his room until we returned home from dinner.

Needless to say, we did not linger, and there was no dessert.

Happy anniversary.

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