I've hesitated to write this post, because frankly I wasn't quite sure where to begin. The whole experience remains jarring to my sensibilities. In nine years Aaron and I have been asked a lot of questions about Rylee.
Seriously...a lot.
Occasionally rude, barely appropriate, often ill-timed. While we usually stop and kindly inform people about advocacy, people first language, and the importance of individuals living in their community-every once in awhile there are comments and conversations that cause you to catch your breath, count to ten, and hope and pray that you make it to your car before crying or cause you to contemplate jail time for slapping someone across the face. I mean seriously, that's just a misdemeanor right?
We've yet to fully get over the fact that people, often strangers, feel the liberty to not only utter these questions or comments but then feel the need to give us advice or share their opinions.
Exhibit A
Rylee and I were shopping commandos two weeks ago.
Our target-"upscale shopping" as in, not Wal-Mart.
The mission? Locate and secure the intended hostage-the sale item, men's Docker's dress shirts that are not only wrinkle resistant but impervious to Sunday dinner stains. At a sale price of $28 each, we braved the light rain and rushed inside. As per the usual marketing M.O., the department store had squirreled away the item in question-making sure that I had to pass by full price pleated slacks (
Really? Women still buy these for men? Tim Gunn would be appalled!), ties and socks that charge you for the celebrity name tag rather than the quality, and men's scent spritzers that a case of Juan Valdez coffee beans wouldn't let you forget. There, in the back I see our target. I maneuver Rylee's wheelchair around the packed aisles-because most department stores think they are ADA accessible if you can get through the main walkway. People with disabilities are often relegated to asking for assistance unless all their needs can be served by end caps and one half of a clothing rack. Great if you need shoe strings, cuff links, or an "As Seen on TV" item.
As we are working our way through the racks and display maze, I notice a couple in my peripheral. They've been following us through the store-and now seem intent on intercepting our path.
The lady is moving fast for her age-maybe she and her husband
really need those pleated slacks? She suddenly says, (
brace yourself folks!)
"Who are YOU to bring a child like THAT out into the community?" Emphasis hers.
My first reaction was to turn around and look. Maybe I had picked up a child that didn't belong to me? Nope. Just me, Rylee, and two Docker's 16 1/2-36/37 dress shirts.
At this point, we were cornered. We're tucked into a corner and Rylee's wheelchair has been ensnared by a rack of Donald Trump menswear. The lady's husband looks mortified already, as he sheepishly takes a few steps back. The lady in question, leans in to repeat the question.
Taking my slack jaw, gaping mouth countenance as an invite to share her opinion-she proceeded to stand for a good five minutes explaining to me why children like "that" have no value and should be kept where they aren't seen.
Quickly gaining my wits, composure, and mouth all at once-I pulled out one of the kindest responses I could think of-reminding her that it wasn't 1930 when she, by the looks of it, grew up. People with disabilities are not relegated to an institution and cared for by strangers, only visited at major holidays or when a family member is reminded of their guilt. I quietly told her that we value Rylee and she holds a very important place in our family. While she may only want to see her disabilities-we recognize and celebrate the value she brings to all those that know and love her.
As she interrupted to inform me what should be done with "that" child-I reminded her that society has changed and evolved to have space for everyone...even those of such distinguished age as herself.
Smelling of White Powder and Rolaids she huffed, then puffed, and turned to trot away with her hen-pecked husband in tow. Reeling for a moment I looked down at Rylee who picked that moment to look at me and gift me with one of her rare crooked grins. Yep, we were still standing. God's still on the throne and my integrity was intact. Although I won't lie-I totally contemplated creating a domino effect with the Donald Trump dress shirt display cases...but I figured the guy already gets enough bad press. Didn't want to add insult to injury-literally.
So to "The Lady in Question" let me answer your question.
Who am I to bring a child like that out into the community?
I am a wife, mother, friend, and warrior. My docile demeanor hides a momma bear so fierce I once looked into the belly of the beast (WVDHHR and legislature! grin) to make sure Rylee and others like her in our state maintained their services. I can run on three hours of sleep for months at a time-granted, it ain't pretty. I've been known to take off work to babysit children with disabilities...for free (gasp!). I am a veracious reader, with a constant "you can never fill me up" attitude to learning. When I'm stressed I bake and then bake more, then make homemade bread just to knead out my tensions. I have a self-depreciating attitude which often means I'm underestimated. I lose my temper about three times a year. I make mistakes and while I always learn from them, I've found not all mistakes are easily remedied. I am learning to not always naturally take the blame when things happen. I am slowly realizing I can't control other's opinions of me. When someone questions my integrity it hurts every part of my being. I dream of traveling one day-and meeting Sir Richard Branson who will love my idea of making planes accessible for people who want to sit in their wheelchairs during air travel. (I mean really, we put men on the moon and he's planning commercial space travel-and we haven't figured this out yet? I've got ideas mister, I mean, Sir. ) I love sneaking away with my husband, still laugh at his jokes, and find that it's a joy to be married to your best friend. I am scheming how to get back to Jamaica to care for children with disabilities. I often type faster than my mind can process. I am proud of each of my girls and our family. I am addicted to Ikea. Seriously. I refuse to believe we are "special" because we have a "special" child. All children are special, gifts from God-and we are just ordinary people living an extraordinary life...but heck, yeah-you can pay for our family meal anytime-but only if you are doing it because you think we rock, not because you pity us. I have a deep seated, heart knowledge that God is in control of our life and He "has plans to prosper us, not harm us"-we've seen Him in action. I've been known to tear up during Hallmark commercials and any YouTube videos involving military reunions. I tend to be too trusting. I whistle like a dervish and can remember and sing a song for any life situation. I love with all my heart.
And "that" child?
She has a name.
Rylee.
"That" child brings out the best in people who know and love her. This child continues to defy all medical odds. She loves music-especially Swahili (who knew our Tanzania friends had such an impact?!) and Irish tunes. She has beautiful big blue eyes, the kind that make your heart realize that sometimes, when a little girl has eyes like that, words just aren't necessary. She has sandy hair and long lanky legs like her daddy that, true to her personality, cannot be tamed or fully understood. She vocalizes her needs and dislikes. Rylee has a funky fashion sense ruled by bright colors and layers. She isn't defined by her diagnosis but rather by who she is to those that love her...daughter, sister, friend, granddaughter. Rylee is a best friend to Miss Livie Lou-and they try to get together at least once a year to see each other. She has a gaggle of Groupies who love her, pray for her, and are invested in her success. Rylee inspires others to do great things-ask the LadyBug Club in Florida, her parents and family, those impacted by the resource fair and Compassion in Action, even her medical team who blur the lines between professionalism and family, just for RyleeBug.
She confounds, astounds, and rebounds. She is a fighter-a tough cookie. Rylee can snuggle up with you in such a sweet way that you forget the cold outside, your hurt heart. She reminds us to stop, let go of the materialistic, the unimportant, the 'static' of life-and focus on what's most important in life. Unconditional love and acceptance.
"That" child isn't a rare ICD-9 billing code, black letters on white paper. Rylee isn't an annual budget and her life can't be templated into an IEP or IPP. She's not a patient or a "non cost effective" consumer within the system of care, a stereotype discussed by pundits.
She's Rylee.
She's
ours and we love her, as any parent should love and care for any child regardless of their age, diagnosis or prognosis, or even if they're (gasp!) "normal."
So, to the lady in the department store...I wish you'd had time to get to know who we are. Maybe we could have changed your mind, or at least caused you to broaden your opinions a bit more to allow room for ours. While your words and actions towards my daughter were momentarily earth shattering...we're still here.
Making things work.
Impacting others.
Ensuring your archaic ideas don't encroach back into society's norm.
Still thankful for the way God blesses our life daily and surrounds us with a cocoon of support.
I'm so thankful you don't have the right to determine how we live our life as a family.
And p.s.-We also don't believe in geriatric euthanasia, so I'll be expecting my thank-you card shortly.
