Suzanne Perryman is mum to daughters Zoe, 9, and Olivia, 11. When Zoe was three, she was diagnosed with mitochondrial disease, it was discovered that Olivia suffered from it the year after.
According to The Australia Mitochondrial Disease Foundation: "Mitochondria are the power houses of the cell providing the body with over 90% of the energy it needs to sustain life. Mitochondria take in sugars and proteins from the food we eat and produce energy called ATP that our bodies use to function properly. Mitochondrial disease (mito) is a debilitating and potentially fatal disease that reduces the ability of the mitochondria to produce this energy. When the mitochondria are not working properly, cells begin to die until eventually whole organ systems fail and the patient's life itself is compromised."
Suzanne writes at her blog that: "My kids are the coolest- Zoe, now 9- has entered the sassy stage of pre-tween-ness. Although I discipline her when needed, I think a little sassiness is especially good for the challenges she faces each day. She loves to dance in her walker and speed ahead in her pink power wheelchair when we are out and about. She has a tremendous sense of humor and a huge heart. Her hugs are legendary. Olivia, 11, loves to hang out with me in libraries and book stores, loves to read- is a sweet,smart, ten going on 16 year old who likes to pick out my clothes for important occasions and covets my Mac notebook."
So imagine her hurt and shock when she returned to her car during an outing and discovered the note above under her windscreen wiper. This is her response ...
I think I recognise you... I do. Before becoming a mum, I used to live in your world of black and white, with everything in order, in its place. I had a plan, a schedule, a list of finished projects to check off, checklist and all. How wonderful for you that your life is so structured, so dependable and predictable that you cling to that line dividing right and wrong, black and white, and that you feel compelled to comment when you think someone is coloring outside the lines.
This time, though, in your hurry to keep things neat and orderly, you didn't see the whole picture. I guess you didn't see the accessible permit hanging from my car mirror, giving me permission to park close to the entrance. You didn't see the wheelchair lift permanently installed into the back of my four-wheel drive, and you didn't see me unload my little girl's pink manual wheelchair that we use for "quick" trips. Maybe from your view, you only saw my older daughter and me, and not Zoe's little girl bubble gum pink wheelchair.
But forget all that, it could have only been my older daughter with me that day, parked in that same spot and -- depending on her health at that moment -- in your eyes, we would have appeared to be at fault, even though her doctor almost nags me, reminding me often to use the medically-authorised permit to conserve her energy when needed. But looking at her, you wouldn't know she has the same progressive metabolic disorder as her younger sister. She doesn't have a wheelchair, but she has the same rights -- all invisible to YOU from the perspective of your world.
I recognise where you are from. I used to live there, too. I used to have checked-off lists, awards touting my accomplishments, perfect hair, great skin, sparkly eyes, a quick wit, a clean car, a social life, a large social network, an organized calendar, vacation plans set in stone and no overdue library books. But then I became a mum. And unexpectedly, a mum of a special needs child. A child with no life-long guarantee, no definitive prognosis and no detailed treatment plans. Now my family has good doctors, a good attitude and a good family life.
My life is good, but not so easily structured. My skin is not so healthy, my hair often flyaway, my eyes most often tired. I am up multiple times throughout the night, I rise at 5 and go full speed until 9 at night, still stymied and determined to do more each and every day. I miss the friendships I used to have, the once-so-easy-to-achieve professional accomplishments, but I don't miss the world you live in.
I am a kinder woman who lives in a world that is no longer black and white. Sometimes gray is good, a salvation, a retreat from something that could be much worse. My priorities were reshuffled for me, and now I would never think to judge another.
I am always in motion and I am grateful. Grateful for the touch of my child who needs my hands to steady her, grateful for my child who craves my words to calm her, my child who needs my hugs to soothe her. I am even grateful, that I no longer live in your black-and-white world.
We can only hope that the person responsible reads Suzanne's words and takes a moment next time before lashing out without knowing their facts.
Have you ever been targeted unfairly for using a disabled spot? How did you handle it?
Read Suzanne's original post at SpecialNeedsMom.com