For years, when speaking to parents of autistic children, I have focused on how, post diagnosis, our greatest challenge as parents is coping with the realization that our children will live in a world without us.
As a former school board member, an attorney and a mom, my focus has been ensuring through therapy, vocational training and opportunities, that Bela and Sebastian become as independent as possible. As a single parent for over a decade, my personal challenge has been maintaining some semblance of a personal life as I juggle the logistics of work, politics and two super active teenagers.
Thankfully I have a supportive family, understanding friends, and like most forty-somethings have found my perfect ratio between working out and carb intake which allows me time to sleep and occasionally binge watch Netflix. But something always must give, and unfortunately, I choose to put my annual mammogram at the bottom of my to-do list.
Specifically, I missed the appointment and put it off until it was over two years since my last mammogram. Pretty much anything was more pressing than taking a day off from work to have my breasts sandwiched between plastic paddles. When I finally got around to it, the results were unclear, and I had to return for an ultrasound.
At that point I did some research and learned that statistically, for every 1,000 women who have mammogram screenings, 100 are asked to return for a second screening and/or ultrasound and of those 20 are recommended for a biopsy. That day I felt as though I had tossed a double-sided coin when I was told post ultrasound that there was an area of concern in my left breast and that I would need a biopsy.
For the first time since receiving my daughter’s autism diagnosis I felt as though I couldn’t breathe. As the doctor explained the procedure, the time period associated with scheduling the biopsy, the actual procedure and the time it would take to receive the results, my mind raced through all the things that I had been putting off until they were closer to turning 22 years of age and aging out of the public school system. And as the feeling that I had failed the two most important people in my life washed over me, I was overwhelmed by guilt and shame.
Like most supermoms (and superdads) I was always so busy dealing with immediate responsibilities that confronting my mortality was at best, a passing thought. While still in my paper robe, I decided that instead of worrying about (or researching the probabilities of) outcomes, I would just get things done.
The days that followed were a blur as after the kids fell asleep instead of worrying about would could happen, I planned and prepared for what Bela and Sebastian would need should I be unable or unavailable to care for them. From life insurance to a special needs trust to a durable power of attorney/living will and guardianship, I confronted my mortality, possible reduction in earning capacity and longevity, and actively prepared for all scenarios.
Every night around 3 a.m., as I tossed and turned, I could hear my mother, who passed away when I was 33 years old, say: “life is like an airplane, my dear, you need to put your oxygen mask on first before placing one on your child, you can’t take care of your children if you have poor health.”
And yet I hadn’t listened; somewhere along the way I had decided that my kids’ checkups, therapies and commitments, were more important and that my health could wait.
Thankfully, my biopsy results were negative, and I scheduled my followup mammogram that very same day. In the process, I shed my superwoman complex and can say with pride, instead of fear, that everything is in order should something happen to me. The last two months have been the longest of my life, but they have also been the most fruitful.
Today I add to my advocacy for children and adults with disabilities a commitment to candidly talking about women’s health and more importantly facilitating exams, like mammograms, so that we can easily include them in our definition of self-care.
From mobile mammogram units that can visit our communities on weekend so that women don’t have to miss work, to pro-bono legal services that provide everyone with access to necessary legal instruments, I am committed to making it easier to be prepared.
Finally, I ask that you consider changing your perspective on mammograms as I have, considering that rather than a nuisance, they are a gift, an opportunity to be diligent not just for ourselves but for all those who love and depend on us.
Raquel Regalado is an attorney and former MDCPS School Board Member.
