A Mother Beyond Limits
During this Mother’s Day weekend, I’ve been thinking about how my mother became such a strong advocate and stoked that fire inside of me. From the time she knew she was pregnant with me, she has told me she recognized the importance of becoming an advocate for herself as a woman with a sensitive pregnancy and a champion for change in the varied communities I would develop in.
Our collective story has been one of one upmanship. We’ve consistenty flown in the face of all the ‘experts’ and naysayers buzzing around us. From the time the doctors told my mother I would have a disability or ‘something wrong’ with me and suggested she may want to ‘end it’ to save her life and/or my own, she developed healthy filters and I built them myself by her example. This is not going to become a pro-life or pro-choice piece. It is simply that she chose to ignore professional opinions and challenge the status quo.
It took a lot of risks and guts and love to carry me those nine long, draining months. And somehow, somewhere in her heart, she knew it would pay off. Not every mother is so lucky, I know, but somehow she made it. We made it.
From the time I broke the nine-month lease sharing space within her, doctors said I would not leave the critical care unit alive, would not respond to her voice, would never go home, would never sit up, go to school, be independent — be anything productive. You get the picture. Still, she doggedly reached for and pursued each of those milestones with me. Watching my tiny head turn in the isolette incubator as she whispered my name, feeling my tiny fingers squeeze hers through the glass, she cheered me beyond the limits others had already set in their minds about my life without really knowing her strength as a mother, without really knowing what the power of assuming in their fields really means to some families.
It took a few weeks, several months maybe? But, I went home with her, learned to sit up, to speak in complete simple sentences by 18 months (so she tells me), to walk on leg braces and a walker by the time I was about three. By age four, I threw the walker down and was on faster, swinging crutches, ready to drag expensive, custom steel and leather leg braces up trees in the yard.
In spite of the Florida kindergarten I went to not wanting me there because they presumed I’d ‘fit better in a special school’, she homeschooled me briefly until it was settled (not without a few legal threats) that I could attend public school among my peers without disabilities. And into the mainstream I swimmed, like a happy, grade school fish and flourished. While Mama went to school to finish a degree, my dad was in the military nearing disability retirement due to kidney failure, so Daddy became the ‘classroom Mr. Mom,’ of sorts baking the cupcakes, taking me on class field trips and going through the awkwardness of taking his special needs daughter to the bathroom on said trips. There was nothing weird or unsavory about it. He did his responsibility as a grade parent, mind you in a uniform if he had to go to base later that day or had just come off duty.
As I grew into a young lady, there were play dates with kids in our neighborhood, at church and Girl Scouts. I was an awkward, geeky little Brownie in thick eye glasses, but I ended up selling the most cookies in my troop most times. Mama taught me all about how to dress my best around clunky braces and ‘Frankenstein chic’ orthopedic shoes, even when our budget was thin and considering my leg braces would tear up clothes in a New York minute as active as I was.
I learned that Goodwill and Salvation Army was okay to find good bargains that fit over my leg braces and we could switch out the chic labels and sew them on my cheaper pairs of jeans and tops so I ‘passed’ with the cool kids. Mama and Daddy raised me like I was as good as any other kid, I just happened to walk with leg braces and crutches and use a wheelchair to move around. To me, the braces and wheelchair were a different way to get from Point A to Point B. It wasn’t until one Halloween costumed as the scariest witch on the block, that it really dawned on my that my braces, crutches and wheelchair were part of my costume as someone different than everyone else. I thought no one would guess it was me, but there I hopped up the walk in my crutches, Daddy run the doorbell and Mrs. McCombs said, “Oh Monica, what a great witch you are!” I was crushed and asked my dad all the way out to the car why she knew who I was. And it clicked somewhere inside me that I really wasn’t exactly like the others.
I wonder if it’s similar to when Adam and Eve discover they are naked and are scrambling around to cover themselves, except I’d not eaten a particular forbidden fruit to get to this state of mind. I’m not sure, but from then on, I knew I wasn’t like the others. And they knew it, too, as I aged and social groups began to be more solidified.
Junior high complicated things. It’s the time when girls and boys are really getting to know each other from a whole other angle, when makeup becomes part of the adolescent toy box. And, oh, the school dances. I was the nerd in the scene in the movie, “Pretty In Pink” who was clawing at the car door to not be left at the dance. I just wanted to go home and be with Mama and Daddy. But dress me up Mama did, got me psyched about that new sweater, fixing up my hair and a new flavor of lip gloss. It didn’t matter that I had not have a date or no clue how to dance in a wheelchair, I was going. I went to every one in junior high and high school, even both of my proms. No, I didn’t really date, but I surely crushed a lot from afar. Still, the dances became more enjoyable the more I went and figured out the social scene.
I went through the typical ‘outside the crowd’ stages, not feeling as pretty as the other girls who had long pretty legs, who didn’t have a school aide walking them between classes early to beat the class-changing crowds or chaperoning them to lunch to help with an awkward tray and wheelchair. I sat with classmates, but we didn’t always connect because it seemed like the cliques were cemented by the time I sat down. Still, I managed to like me. I had what I’d call typical hang-ups, but nothing major.
At home, I was like any other kid and encouraged to be smart. For having a label as a ‘special needs student’ I was also labelled ‘gifted’ in elementary and junior high school. It was a multiple whammy for me, a girl who just wanted to blend in and not be ‘that girl in the wheelchair with the aide in gifted classes’. But, somehow, I liked being me. Sure, I wanted others to like me, too, but I knew I was okay within me and at home where it counted. “Wait until you’re older,” people would say. So, I did my best to wait it out.
Mama earned two Master’s degrees in the education field, becoming a public school teacher after her experiences with me. Daddy earned double Bachelor’s degrees after he retired from 22 years in the Coast Guard. So, from them both, I learned that learning was important. I didn’t always tow the line in my studies, but I knew I was going to college to make something of myself by their example — and by my mother constantly pushing me harder and higher. Sometimes the pressure made me act out because I didn’t understand her idea that I needed to be more and present more just to be seen as at level with my peers without disabilities. I still don’t understand or agree with this — that people with disabilities must work even harder to achieve the same as our peers without challenges, but I understand this idea exists in society.
When I began college, I finally began dating, had a lot of friends, a good GPA. Afterward, I worked in journalism and disability civil rights, moved into my own apartment in spite of my parents’ worries about living on my own with a disability, met my husband, married, started my own business and am now embarking on living in our first home together that is accessible and affordable.
I recognize that these are all accomplishments that people around Mama from the time she found out she was pregnant counseled her into believing I would never be able to do, simply based on a black-and-white diagnosis that wasn’t as well understood then as it is now.
I hope there are other mothers, Mr. Moms, and supportive families in general, out there who are helping their babies and adult children with disabilities live life beyond society’s preconceived limits for them. Listening too long and hard to the naysayers could set up a person with a disability to lower their own bar lower than necessary. It’s said you reach for the stars, if only to catch the moon, but the real crime is not reaching at all. I know it has made all the difference in my life.
I know if other loved ones are half the mother mine has been and is, other individuals with disabilities will be okay — better than just okay. Sometimes, no matter what the popular, professional opinion has to say, you have to put on the half blinders — still aware of the risks, but believe the best is yet to be anyway.
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