Susan's Blog

Sunday, April 25, 2010

Lucky to be alive

They never tell you what it’s like because they are still struggling with that realization themselves.  Tell you what it’s like?  I got my own problems!  So we all have to find out.  We all do, over time.  Maybe autism is your first time.  Childbirth itself was the first thing for me that made me realize down to my bone marrow that life was not going to the way I had planned.  Autism was the second thing.  I hadn’t even planned, actually; I had expected.  In my mind there was a semicircle of things spread around me that were possibilities, back when I was pregnant with  Nat — little girl storybook things like “he’ll look like me; he’ll look like Ned.  He’ll be into school; he’ll be kind of bad.  I hope he won’t become a criminal.  I hope he doesn’t have a disease.  I should breastfeed him so that he’ll be healthiest.  I’ll research the stroller safety, the crib bar distance.  I hope the cat will like him — what if they don’t get along?”  So adorable!  I was a baby, too.

Once Nat was born, the semicircle became a circle, stretching behind my back, to things I couldn’t see.  I had no idea, before his birth, how the worry about his pure survival would give me a permanent feeling of anxiety; it just would not go away.  How in the world could such a soft pink hairless boneless creature survive?  What?  It’s all up to me?  That’s just crazy.

But I got over that, inured to it, callused.  So I could just do what it took.  Become a young mother, no longer a carefree girl (well, let’s face it, I was never carefree.  There’s always something to worry about, after all.  As a fourteen year old:  will that boy like me?  As a ten year old:  will that new girl be my friend? As a six year old:  can we go to Old MacDonald’s Farm for my birthday?

So the young mother sloughs off some of that flawless youthful skin and suddenly has circles under her eyes.  Give up the damned dream of breastfeeding because how could it be the right thing if he howled like that, clearly starving?  No no, it could not be right.  So they were wrong about that.  The bottle was better for this baby.  What else were they wrong about?

Guess what else they were wrong about.  This baby was not progressing the way all the books said.  I could not interest him in anything.  Yet he was clearly happy.  Was it the case that babies were not all alike, that they did not all watch Sesame Street or delight in rolling a ball?  That they didn’t give a shit about other babies?  Like people, they were all different!

Gradually, I figured it out.  Or in sharp ugly bursts of awareness.  Oh.  Oh God.  It’s the worst thing that could possibly happen to a person.  It really is.  My child has something wrong with him. What now?  Penelope Leach and Dr. Spock and Brazelton had no answers for that one.  Neither did my doctor.  All the people I’d looked up to, suddenly the mask slipped and I saw that they were as young and stupid as I was.

When you see that, you lose years of life.  So I became a much older woman at that point.  I was “seasoned.”  I was seasoned so much I was like Cajun food.  My flesh became plump and yet not all that juicy.  I was completely thrust into the mother phase of life, where my job, my identity became all about being strong for someone else. I had to take extra special care of this child because he had something.

I became old beyond my years, as they say, and because I eventually figured out how to survive that stuff, I was deemed wise.  I was wise simply because I was not dead, and neither were my kids. There were more ugly surprises along the way, rabid bite-in-the-ass kinds of surprises, like sleep disorders, manic behavior, aggression.  Traumatized siblings.  But there were other issues, other tragedies, completely unrelated to autism.  I didn’t know that things could be even worse.  Terrible mistakes, irrevocable scarring. Things wrong with people, not just Nat.  Nat turned out golden and beautiful, strong-limbed but flexible.  Brilliant in his own way.  Max and Ben, they struggle, they are scary, too.  Children grow, all of them, no matter what they “have.”

And here’s the thing:  People leave.  They leave you, in all kinds of ways.  I find that now I am increasingly grateful for the ones I still have:  children, husband, parents, friends.  Life.  We never know for how long.  We forget, unlike the cavemen or the poor desperate Medieval folk, that we are completely vulnerable organisms.  As soon as we know that, once I knew that, I became old, like the boy wizard who read the Book of Knowledge and overnight had a long white beard.  I am on the other side, an older mother:  aware, all too aware.

The part of me that is wise, though, is not that I know so much.  It’s only that I now know it won’t last forever, and whatever it is, I am damned lucky to have it.


I remember everyone telling me “some children talk at different times than others.” To this day I’m glad I ignored those comments and worked to do what was necessary.

What is normal?? I had a woman ask me how I managed when Dh wasn’t around – he’d gone to a Conference – hello?? this has been my world since they were born…. this is our “normal” and we do just fine thank you.

Yes, people come and people go. I’ve become rather jaded about it over the years. I simply enjoy them when they are around and admit I wait for them to go. With Facebook and email… we’ve become not just a disposable society with our garbage, but also our friends.

— added by farmwifetwo on Sunday, April 25, 2010 at 11:02 am

Great essay, Susan, thank you. Your first book helped me so much couple of years ago to change my perspective when my son was diagnosed, and your continued writing always teaches me something. Like so many other moms I know who are further along in the adventure of raising a child on the spectrum, you’ve become like a mentor from afar. You don’t candy coat anything, but still manage to communicate that things will be ok in the end. That’s so important. I try to carry that same message when talking to newly diagnosed families. Thanks again!

— added by Misty on Sunday, April 25, 2010 at 12:09 pm

Oh yes, gradually, and in sudden bursts of sickening awareness. Like falling over a cliff very, very slowly… When we got the diagnosis, it was almost a relief. Then I just tried to find the “lucky”- lucky he was 17 months, lucky he was moderate, not severe. Anything to find some slight bit of bright side. I also feel lucky for the people I have left, and it’s actually most of whom we started with seven years ago. I truly enjoy your blog, it’s like a peek into the future for me.

— added by kim mccafferty on Sunday, April 25, 2010 at 8:02 pm

Very nice, Sue. So true. This essay gave me chills as it put words to so many feelings I’ve had regarding my children and family but have never tried to sort out. Thank you!

— added by stacey on Sunday, April 25, 2010 at 9:09 pm

From the beginning, I loved the children I had, and nothing about the diagnosis could ever change that. A person is what they are, and wishing for something else is just beyond foolish. That I knew intuitively very early, and I’m grateful for that. People take it for wisdom, but really it is just love and acceptance. I have temporary custody of individuals, people whose lives are their own and not mine.

But what has me lately is something different. I feel utterly abandoned on so many levels by so much aside from my children. That one relationship stays true to itself, but the rest of the relationships seem to shift and falter. I can’t rely on anyone, and therefore have very little support. Everyone has an opinion, everyone has advice, so many people have judgment: what I have is daily life. I am so infinitely tired. I often fail to feel gratitude for my life, and I am trying to work on it. It isn’t that I am not grateful for the children – I am. But I can’t really imagine bothering to socialize them to a world I no longer see much good in, a world that is only going to strike out at them once they learn to understand that the joke is so often on them.

I think that it is the struggle that wears me out. Within the circle of what we have, we’re complete. But the goal is to get them to grow up and live independently. I’m making excellent progress on it, but feel deeply ambivalent about that world.

— added by Ina on Monday, April 26, 2010 at 12:21 pm

I love it.

— added by Pete Lyons on Monday, April 26, 2010 at 3:03 pm

I feel so very lucky just to have gotten this far with my boys — though if I had a crystal ball glimpse of my life when I was 16, 10, 6, I would have thought, no way, that’s not what it’s supposed to about!

Thanks for a good reminder of why we all do the ‘work’ and the living we do.

— added by kristina on Monday, April 26, 2010 at 8:31 pm

Very nice post! Didn’t make me cry but nod my head in agreement! You are always an inspiration!

— added by Jolene on Monday, April 26, 2010 at 9:06 pm

It’s uncanny how the things you say and write always reflect the state of our minds and hearts. I kept saying yes to each line,tempted as I was to shout “amen” and “hallelujah” like a church chorus. Thank you for another piece of great writing, Susan. 🙂

— added by Kittymama on Wednesday, April 28, 2010 at 6:23 am

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