A Different Type of Loss

March 20, 2009 at 8:50 am 2 comments

The other day, Cecily wrote poignantly about reliving a specific memory related to the loss of her unborn twin sons, Zachary and Nicholas.  One of the last passages of her post sent me reeling.  Cec said,

Losses of children shape us, and change us forever. I am beginning to see that now, and accept that this deep grief is a permanent part of my landscape, although it is not as crippling as it once was. But yesterday was yet another profound kick to the chest, reminding me that my despair over losing my sons is not gone, and it probably never will be.

Loss and grief have been on my mind constantly as of late, especially at the current moment where we are delving deeper into the educational impact of autism and sensory processing issues on our two children.  Mostly, I look at other families, some my family and friends and others I see on the street, and I feel incredible almost debilitating pangs of jealousy.  My kids, no matter how much you may look at them and think, “There’s no way they have autism!  They look perfectly normal!”, they are different.  They will likely have great struggles in their lives, socially, academically.  They have certain, special needs.  They will be, and already have been on occasion, ostracized.  My children, for what it’s worth, will never be what society perceives to be, normal.

When the therapist advises us to purchase a certain toy or other gadget that might help in strengthening tone, improving oral-motor function or give a certain, sensory input, often I surf over to the website she suggests and the item is being modeled by a child in a wheelchair or on crutches or with some other obvious, physical disability.  Although it’s likely not very politically correct, I’ll admit, I twinge a little.  Because, on most days, I look at my kids and forget they’re different.  But then, there are the little wakeup calls…the developmental playgroup, the special, integrated preschool, the sheer exhaustion of trying to get two little people out the damn door in the morning.

The loss and grief comes when you realize that some of the expectations you had for your children have changed dramatically.  Instead of dreaming of the days when they wave goodbye on the first day of preschool or kindergarten, you consider it a victory when the teacher doesn’t call home to let you know your kid won’t come out of hiding in the bathroom after a  bell rang or that she can’t get your kid’s attention by calling out her name a dozen times.

Then, there’s being told constantly it seems that, “maybe they need more discipline,” or “you HAVE to MAKE him do it,” by well meaning others who don’t understand just how many times those phrases have been told to us, and how many times we’ve just had to let them roll off our backs, and how it’s just gotten old.  So, so old.

Thing is, this feeling of loss isn’t something new.  We struggled just to get pregnant.  We lost our first little bean at around 8 weeks after 18 months of early morning ultrasounds, belly injections and disappointing pregnancy tests.  On the day we met our little ones, we finally thought the hard work was behind us.  How incredibly naive of us to think such lofty things.

Don’t confuse my anger and confoundment with a wish for different children or even some other lifestyle, because I’d pick mine every time, twice on Sunday.  Along with the constant battles come so much hilarity, bravery, enlightenment and pure, undiluted love that most days?  My heart might shoot clear across the room from the fullness.

Like Cecily pointed out, our feelings of loss and grief, no matter what form they take, play a huge role in molding who we are, who we become in the future.  Those emotions wield so much power in our lives, it’s sometimes difficult to see past them.  Sometimes.  Not always, since in this game, there are no absolutes.

On those days, I need not look further than a few feet to see this…


Perfection. And everything else just fades away.


Entry filed under: Autism/Aspergers or Something Like It, Current events, Momma Drama.

A Whole New Hue of Pissed Off The Most Cautiously Optimistic Week With Bonus Visit to NYC EVER

2 Comments Add your own

  • 1. Milenka  |  March 20, 2009 at 9:48 am

    Perfect and gorgeous. And the entry was beautifully written, also.

  • 2. tracy licamele  |  March 20, 2009 at 10:29 am

    I am in awe after reading that! Your children are so beautiful and Very lucky to have you as their mother! (I bet they would always pick u to, even twice on sundays) 😉


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