Choosing My Words: What You Don't Know And Can't See
“ How did I get the line on my leg Mommy?”
Zoe asked me about her scar last night, as I lay next to her, mostly murmuring that she should go to sleep.. while I tried especially hard not to nod off. Kids are funny at bedtime, vulnerable to the mysterious truth serum spell of near sleep, and Zoe is no different. This is a new place we have arrived at, the magic of bedtime, when affection is still abundant, but now her worries and fears are also at the forefront of thought.
I rolled over and took Zoe’s hand in mine, trying to focus on her face in the nightlight glow. She is eleven now and bedtime lately has taken a serious turn. We talk about kids who stare, what she is afraid of and how people are different. Tonight she has chosen to ask me for the first time ever, about the surgical scar on her thigh. My mind drifts, and I speak softly, saying one thing to her while thinking another. Buying time to choose my words carefully, and tell her this story.
Every time I see that scar, I am thankful. Thankful we had the diagnostic muscle biopsy test. Thankful we finally got the answers were were looking for back then. The funny thing is though, I haven’t really seen that scar for years.. When I look at Zoe, I don’t see her scars, the label of her diagnosis, her walker she uses at home or her wheelchair she uses out in public. I see my daughter; her can-do attitude, her awesome sense of humor, her smile, her spirit. I see how far she has come and how hard we have worked to get here.
Being the mother of a child with special needs is a hands-on job, usually extending beyond the mothering of a typical child. Like Motherhood in general, it doesn’t get any easier as your children grow, it just evolves and changes into new discoveries, new challenges and new ways you are called to advocate and guide the way for your child. Along with challenge and discovery, I have been given the gift of a positive perspective, the ability to savor the simple things and not take life for granted.
I share our stories on my personal blog to give other parents the encouragement of my parenting perspective, to share my journey, how it has changed me and to get a glimpse of the positive moments that go along with that parenting . My perspective purposefully excludes most of the daily grind and the little harsh realities of every day life.
Like when Zoe and I arrived at her middle school orientation, set to pick up her schedule and get her school i.d. and found the photographer was set up on the school stage in the cafeteria. An area that was accessible only by climbing stairs or by exiting the building and entering through a locked, unmanned back stage door and maneuvering through a crowded storage area. Zoe spent the entire ten minutes in line repeatedly asking me how she would get up on that stage to have her picture taken.
Like when we go to the movies and Zoe and I stand in the long after- movie bathroom line only to find Mom after Mom heading to the one accessible bathroom with toddler in tow, until Zoe can’t wait anymore and so I ask one of these Mom’s to let Zoe have her turn using the accessible stall, and get pushback. Just like I most always get pushback when I ask the Dad doing the school run to please not pull into the accessible spot that I need it to unload my daughters wheelchair, and in reply he yells at me with indignation that he isn’t parking , only pulling in for a few minutes.
Every family member, related to an individual with a disability has these stories to tell, so typically I don’t tell mine often unless there is a lesson to be learned. After sharing my story about the anonymous note left on my car window, I have heard lots of these personal stories via encouraging emails and kind commenters who are thankful that through my written word I defended the rights of people with invisible disabilities, people that like my oldest daughter, may have medical issues you just can’t see. These stories and comments touched my heart, and again made me grateful, that our journey is what it is.
The day I found that note on my windshield was a trying day, and yes, I was tired. If the author of the note had simply stated “ This is a handicapped spot and you should not park here” I would have just tossed it, and went on with my day. But with a full grocery cart, and two kids, my youngest in her wheelchair, instead it made me emotional.
I didn’t want to fight another fight that afternoon, I was in extra need of some niceness. So, I peered in my window and saw my bright blue placard hanging from the rear view mirror. I shushed my older daughter who kept saying “ What did we do wrong Mom? What?” over and over again and I looked down at Zoe’s flushed face as she waited for me to help lift her into the car and then load her chair and I thought .. “ Really.. REALLY?” as I wiped my tears away and shoved the note in my jeans pocket.
And because the note said “ You are CLEARLY not disabled, SHAME on you” the kinder woman that I am was upset that a stranger chose to affix their own personal stamp of shame for something they obviously did not see.
I chose to use my words to tell this story, so whoever might read my blog would think about this too. Zoe has multiple disabilities, and not all are easy to recognize. Her sisters’ medical issues are invisible to others. Over the years I have learned firsthand by dealing with diagnoses, therapists and doctors , that disabilities are complex, complex. They are difficult to manage, diagnose and very often difficult to detect.
And just like that one inch surgical scar on Zoe’s leg, there is a much bigger story behind that almost invisible mark. But unless you know what to look for, or have one yourself- you probably won’t even see it.
Authors Note: More On The Anonymous Note.. As I mentioned in the HuffPost Live interview, and to all news sources that have since inquired, I originally received the anonymous note on my car in Fall 2011 and at that time published the personal blog post that was published this week by Huffington Post, AOL and continued to go viral. I believe this recent web interest is the result of other anonymous notes featured in the news. That said, readers seem to feel the content and conversation is still relevant. You can click the link above for the HP Post, HP Live video and the 7K+ comments. Was my original post response to the anonymous note meant to be judgemental? No, it wasn't. I was telling MY story, from my perspective, on my blog. In my blog I described my own experiences, who I am, who I used to be.. as fellow BlogHer's know.. that is what blogging is mostly about.. telling your story. To further clarify my personal perspective I have written the post featured below.