Tailor-Made

[Editor’s note: I write this today in honor of one of my dearest friends and fellow Warrior Mama.  We have fought the good fight for our kids side by side, ended the toughest days over a bottle of wine and celebrated each other’s victories with sincere pride and joy.  Yet, we both can’t seem to shake the suit.  Cheers, CM.]

 

There is an empty hanger in my closet.  It’s been empty for nearly 5 years.  It just hangs there.  Waiting to be used again.

I have no recollection of purchasing the garment that came with that hanger.  But after researching its origin I have found that apparently such garments are handed out along with your child’s life-changing diagnosis.  And there is a No-Return policy.  It is two sizes too small and from what I read on the label, I am advised not to stand near an open flame while wearing it.

It is an ugly, tight, 100% itchy faux-wool suit.  And I’m wearing it right now.

I am uncomfortable – all of the time.  The zipper is broken so I am simply stuck in this suit no matter how hard I try to escape it.

It is very distracting.  Because of this damned suit I don’t sleep well unless medicated and quite frankly intimacy cloaked in an itchy wool suit is – well – challenging.  Not just with my husband – but my personal relationships with everyone.  Sometimes the opportunity for social interaction sends me scurrying for cover because in addition to the insult of wearing this thing, I just feel I cannot handle the onslaught of sensory input involved in being around people.  I start to think maybe I simply hate people in general.  Let’s face it – sometimes people just suck.

The constant irritation and feeling on-edge affects my concentration and ability to get things done, too.  Making a simple plan for dinner seems overwhelming.  I have difficulty enjoying the things I used to love before suiting up.  Sometimes just being in a moment with my family when things are actually calm and somewhat joyful, I still feel distracted by this scratchy, freaking outfit from hell.

The constant worry of how to manage everything and be prepared for whatever comes next is unbearable to my senses.  Being on heightened alert every moment of every day literally makes my skin crawl.

My child’s diagnosis is like an itchy suit I cannot take off and hide away in the closet.

And though I understand the purpose and even usefulness of this suit – I do wish with all my might that I could just take it off once in a while and maybe treat it with a little fabric softener and make use of that lonely hanger.

About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome. View all posts by Rachel Kenyon

3 responses to “Tailor-Made

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