This week’s “From the Trenches” is brought to us courtesy of Amy Cordes, founder of Missouri Data Warriors and fearless advocate. In her Letter, Amy describes how her advocacy brought about unintended – and potentially life-saving – consequences that give her inspiration for what we can accomplish in the #Resistance. Enjoy!
Both of our children were born in the heat of the Missouri summer. And as we celebrated another trip around the sun for both of them, I was reminded of the very beginning of my son’s life – when I learned about the power of a mother’s advocacy, and the rippling impact individual decisions have on our world.
It was the beginning of 2001 and my pregnancy was just starting to show. I’d begun to feel the occasional flutter of movement and a good night of sleep had already proven elusive. As my belly grew and my fatigue worsened, I began to suspect I might have developed Obstructive Sleep Apnea (OSA), a sleep disorder characterized by pauses in breathing or shallow breathing during sleep. Without treatment, sleep apnea can lead to heart attack, stroke, irregular heartbeat, and more; but my primary concern was the decrease in oxygen levels – and especially how that decrease in oxygen could harm the child I was carrying.
When I saw the sleep doctor a couple of weeks later, she agreed and ordered a sleep study. The test results confirmed what we had suspected – I did have OSA after all; but, because I did not meet the threshold of severity, I would not receive corrective treatment. I was shocked. If I wasn’t receiving enough oxygen during sleep, what effect was that having on my child and the amount of oxygen he was receiving? I expressed my concerns to the doctor, who shared my apprehension, and she ordered a second sleep study hoping I would meet the threshold.
Unfortunately, I did not. The idea of not getting treatment because I didn’t meet some arbitrary “threshold” was almost more than I could take. Once again, I expressed my concerns to the doctor, though much more vehemently this time. (That may be an understatement. Any mother who has advocated for her child can probably relate.) My child was certainly being affected by the decrease in oxygen, I argued, so treatment was essential to his health as well as my own. After pleading with the doctor, she agreed to prescribe treatment with a CPAP machine, which pushes oxygen into the trachea, keeping the airway open and free from obstruction. Success!
Fast forward a few months. Our son had been born and was home, happy and healthy, and my sleep apnea had resolved itself once the swelling had subsided. I met with the sleep doctor one last time to return my CPAP machine and thank her for being attentive to my needs and supportive of my concerns. Imagine my surprise when she responded with:
“No. Thank YOU.”
She then told me how my persistence in pursuing treatment made a difference for more than just my family. Once I made them consider how the lack of oxygen could be adversely effecting our child, they reevaluated their standard for recommending CPAP treatment for pregnant women. And, since this particular clinic is a national leader in sleep medicine, she explained that other institutions would likely change to follow their recommendation. I was floored, but thrilled! To think that other moms – across the country – would receive the treatment they and their children needed because I had pushed for what was right – well, that’s more than I had hoped.
Sometimes we affect change in the course of everyday life, just by being who we are – encouraging, persisting, nudging, motivating, inspiring – in whatever way comes naturally to each of us. I did not intend to bring about substantial change by advocating for myself and our son, but I did, just the same.
Years passed. My advocacy in those intervening years was a labor of love on behalf of our children, a job I still take very seriously and am blessed to continue. And then, I opened my eyes the morning of November 9th and the word “woke” had a new meaning. Like so many of you, I felt a new sense of urgency and purpose in a country I did not recognize. And then I remembered the story I just recounted to you and I thought…
What would happen if I intentionally sought to make change in the world?
I have power. You have power. Together?!? We are UNSTOPPABLE. If a single person can unintentionally make an impact, what can an army of activists do? The possibilities are endless….and exciting.
So, let’s continue to move the Resistance forward with intention, passion, and confidence, knowing we are on the side of truth and justice. But, most importantly, let’s move forward together.
Small Deeds Done 