Editor’s Note: This summer marked 23 years of AudacityMagazine.com. Even though the anniversary has passed, I remain humbled and grateful that something I started all those years ago continues to bring people back together. Writers who once shared their lives with our readers still remember us, reconnect with us, and return with new stories to tell. Amy wrote for AudacityMagazine.com nearly 20 years ago, and having her back feels like a beautiful reminder that while our lives may change, the connections we created here remain.
You know how you can randomly read or hear something and instantly be sent back to someone you knew eons ago? Someone or something you had not thought about until that moment jolted your memory? That happened to me recently when I came across the word “audacity.”
Hmmmm. Didn’t I…? Wasn’t there…? What was it…?
Then the details filled in. Audacity Magazine. Yes! That’s it! I looked it up and, wow, it’s still a thing! And Nathasha, right? She’s still here. Still audacious as ever. Very cool. I wondered if she remembered me.
I sent her a note to reintroduce myself. Remember me? I wrote the Dis Abled Mom column from around 2005 to 2007. I’m thrilled to see you’re still going strong! I’d be happy to contribute something again if you’re interested.
So here I am with an update on life as a mom 20 years later.
For starters, my adorably precocious toddler graduated magna cum laude from college this past May with a BFA in Creative Media. When Ella was little, I worried about how I would take care of her when my husband or others were not around to help. As a disabled mom with a growing toddler, I devised interesting ways to make things work for us.
Now she has completed four years on her own at an out-of-state school a few hours away. She has learned to take care of herself quite nicely, even while living with challenges of her own.
In eighth grade, Ella transferred to a charter STEM-focused school that was much more demanding than our town’s public school. Until then, school had always come easily to her. Suddenly, she was struggling to earn satisfactory grades, let alone the exemplary ones she, and we, had become used to.
After lots of questions, research, and consultations with her doctors and teachers, we finally had answers. Ella received an ADHD diagnosis at the end of eighth grade, followed by an autism spectrum disorder diagnosis at the end of her freshman year. That made her successes throughout the rest of high school and college even sweeter. My husband and I are beaming with pride, and I am sure she is proud to have proven to herself what she can do.
My own physical challenges from spina bifida have changed over the years, reducing how active I can be in daily household tasks and family outings. When Ella was young, I happily joined her and her dad on easy walks through the woods and trips to the mall, museum, grocery store, or wherever else we wanted to go. My only adaptive aids were my short-legged AFOs and a walking stick my husband lovingly handcrafted.
As time passed, the nagging numbness in my upper left leg during longer walks spread to both legs, with back pain to boot. I went from walking those hikes, to sitting frequently to rest, to staying home altogether. Earlier this year, I received another diagnosis: adhesive arachnoiditis.
For the last five years, I have used forearm crutches instead of my walking stick. I have also embraced both a standard wheelchair and an outdoor, off-road version for our “extreme” activities. I’m back in the game, baby! I love the freedom my chairs give me as I adjust to the ways I currently exist within my body.
That freedom has allowed me to continue planning fun things for our family. I love researching and scheduling our day trips and vacations, something I can easily do despite my physical limitations. My husband is more than happy to hand those tasks over to me.
The three of us have always loved to travel. Before I used a wheelchair, my husband and I took a cruise to Bermuda and drove to Montreal. When Ella was entering grade school, we spent a long weekend at Hersheypark. In sixth grade, we took her to Old Quebec City for a week of exploration.
More recently, with my wheelchairs in tow, my husband and I spent two glorious weeks touring Prince Edward Island for our 25th wedding anniversary. Such a beautiful place! The three of us have also tooled around Philadelphia by foot and wheels and completed several fun mystery day trips provided by a third-party source. Whenever we have wanted to do something, we have found a way. There has been no stopping us, and we have had a blast!
There is something else I “excel” at as a mom with a physical disability, although this one is much to my family’s chagrin. I “mother” both of them too much.
I have always kept track of our schedules, made the plans, ensured alarms were set, and reminded everyone what needed to be done and when. This was probably more appreciated during Ella’s school years, when she had several extracurricular activities and appointments. My husband took care of the house, while I took care of Ella and all her goings-on. That was just the way it was.
Now Ella is back home, and I understand why she gets annoyed when I remind her what she needs to do. She is an adult! She lived away from home and took care of herself very well for four years. My husband hates the reminders, too.
Don’t forget to change your alarm time. Don’t forget to go to the store. Remember, I need a load of laundry brought upstairs so I can fold it, please. We have to leave at such-and-such a time so we can get there by X o’clock.
Yeah, I get it. It can be a lot. It is bossiness and over-mothering, and it is a hard habit to break.
A few weeks ago, after both of them once again told me to stop it, I finally understood why I do it. The explanation came to me while I lay awake in the middle of the night.
I cannot do many of the physical things that would help me take care of them, but I can do this. I can keep us on track and make sure what needs to be done gets done. It is my way of taking care of them, taking care of us, and showing my love.
When I explained that, they both stopped and looked at me with clearer eyes. “Huh. You’ve never said it that way before. That actually makes a lot of sense. We get it now.”
They still may not like it, and I definitely need to control my controlling tendencies. At least they now understand the intentions behind my words when I offer a little too much “help.”
I could never carry my tired toddler when she suddenly refused to walk, participate as a field trip chaperone during those long, active days, or lug totes of dorm room furnishings in and out of new living spaces. But I can remind my kid and husband what needs to be done, plan fun things for us to do, and help keep our family running smoothly. Sometimes it is to their aggravation, sure, but rest assured, it is all done out of love.
A lot has changed over the years. Ella has her own challenges. My physical abilities have declined, despite my efforts to keep that decline at bay. My husband now handles more of the active chores around the house. What has not changed is the relationship the three of us share.
Well, okay, it has changed a little. We no longer treat Ella like a four-year-old by cutting her food, giving her baths, and tucking her in at night. But through her teenage years and into young adulthood, we have remained close. We genuinely get along and enjoy spending time together, even when we utterly exasperate one another.
Maybe it helps that Ella is an only child. She has always felt like an equal partner in our family. It has never been the kid against the parents. It has always been the three of us against the world.
Ella has grown into, and really has always been, a self-confident, curious, caring, hardworking, and audacious individual. She is fiercely concerned about fairness and equality. No one is better than anyone else. To her, diversity of any kind, including physical, mental, and sexual diversity, is beautiful. Everyone has a place at Ella’s table.
With me as her mom, given all my challenges, I suppose I can humbly take at least a little bit of credit for those valuable lessons she has learned.
About the Author: Amy Blanchard lives with her husband and young adult daughter in southern New Hampshire. She enjoys cross-stitching, reading, writing, and spending quality time with her family.
Enjoyed Amy’s return to AudacityMagazine.com? Join our newsletter at www.audacitymagazine.com/subscribe so you never miss the stories, conversations, and audacious voices we share.
Want to help us keep the lights on for another 23 years? Support AudacityMagazine.com at buymeacoffee.com/nathashaalvarez. Every contribution helps this independent magazine continue to grow.
PS. Here’s another one by Amy. https://www.audacitymagazine.com/just-ella-is-just-right/