Skeletons in my Closet

I am so much older and so much wiser these days.  And yes, so much more thin and worn out than when our eighteen year old daughter Jazz was given that autism diagnosis at age three.

In those early days, I swallowed every book, watched every documentary, attended every autism-related conference in order to get a handle on this thing life had thrown my way.

I was puzzled by the old moms I encountered and their silence.

As a newbie to autism, I was naïve perhaps as to what changes would come our way in research.

“It” would surely get better than it had been for those naysayer moms with their empty faces, cynical bitter tongues who “harumppfed” their opinions regarding services, educators, and the world’s treatment of their adult sons and daughters.

An Apology

In a decade and a half, I see my light dimming. And I so owe those veteran moms an apology.

They had already been there and done that and now I understand that they were carrying a load they knew would never be set down upon someone else’s shoulders.

I’m not saying my darling is a weight which I would toss aside if there were a magic genie wish granted to me.

I would absolutely not trade back most of the moments of this journey she, her father, her siblings, and I have walked to-date.  But now, as Jazz nears the scary age of 18, a legal adult, I pretend to be ready for what that means.

Once the school years are done, what is next?  It’s an age-old question.

The Twilight Years

I am in the twilight stage of living.

My other daughters are grown with children of their own and should not be expected to take on their sister.

Just to iterate that fact, a loving old Aunt who happens to be a Catholic nun, told me some years back not to count on family to care for my girl in the event I should die.

She worked at the time running a home for adult women with autism.  “You just can’t expect your children to put their lives on hold. They can’t do it. They WON’T do it.  And if they tell you they will, it isn’t true.”

So, these days, I watch as friends are moving towards freedom.

While I once thought I would raise my children, set them free at college age, and go climb the mountains which were calling my name, I am smack-faced with the reality that those dream days are never coming.

I am a Prisoner

I am a prisoner to what my Jazz needs in order to be alright.

If that means grabbing carry-out rather than brave the crowd at Applebee’s, so be it.  Life revolves around her need for “sameness” and the safety of home.

I continue to become older, weaker in comparison to her superhuman adrenaline-filled strength, more frail in body, more disappointed in how the little things have actually changed since 2005 regarding acceptance.  But the one thing which haunts my nights and adds wrinkles to an exhausted face each sundown is the fear of “what will happen when I’m gone.”

I secretly wish that we three are all together traveling to Paris, and the plane goes down.  If only our end could happen this way, I promise to be giggling alongside my girl who lives for turbulence when the typical passengers 747 scream white-knuckled in jaw-dropping-torment.

Don’t judge me, here.  Not yet, anyhow.

Others who mean well try the whole God thing on me. “Put your faith in him, Melissa.  It’s out of your hands.”

I do have faith but I refuse to imagine that anyone else is going to go patiently through the hard parts of raising an individual with autism and still be able to adore, value, and most importantly, love my Jazz in the way this mama does every day.

One who has not carried her in their womb as I did might run for the hills when she shrieks birdlike in the grocery store.

Ya da, ya da…life is not fair.  Deal with it I tell myself.

My Payback

I’m guessing this is payback for my lack of understanding of those worn-out moms I met early on.

Perhaps, if I had stood for two seconds in the shoes of those mothers a decade ago and maybe just held their hand to show them I understood.

To let them know someone cared. To have offered a night of respite even though a night, a week, two weeks away is still just a blip on the radar of time in the everlasting care tending we are expected to do.

God forbid… the idea that a mom can’t handle lifelong care or would grow so old as to have to place their darling in a home!  But that is life…It’s hard, isn’t it?

We judge those who want to go on with their lives after decades of tending to their adult children. And I’m just supposing here, because nobody talks about it, or if they do you only hear half-truths, but I bet the guilt is eating at the flesh of my fellow mothers, those strong enough to let go.

The skeleton in my closet rattles his chains within the depths of every night.

The Unknown

The unknown, the having to “let go and let God” mentality creeps alongside me at 3:00 a.m.

The cold walls of this house, the creaking boards beneath my feet, and the slumbering world outside my window know nothing of the weight we moms carry.

As for me, my family, and our puzzling Princess Jazz, we will soldier on as expected;  Dad will continue to “go to work to cook the bacon”  while sisters muddle through their newfound lives.

This mom buries an ever-present darkness hidden beneath the surface.

I pray for my fellow moms who traverse this similar journey.  May their skeletons tiptoe lightly across the floorboards of their lives.

You, my friends, are not alone.

We special moms understand how each child we are “gifted” takes a piece of our heart, wraps it in chains, and moves us forward into the unknown.

My prayer is that we may all find peace with our choices knowing that loving someone enough to let them go is an okay option.

Written by, Melissa Archer

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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