All tagged Advocacy
Before Adelaide died, I wrote about the garden she had planted for us, a garden full of people that would lift us up and take care of us after her passing. What I didn’t realize at the time was that as long as I continued to cultivate this garden, by maintaining relationships or doing work in her memory, her garden would continue to grow and thrive.
Next week, on Tuesday, March 26th, the epilepsy community comes together for Purple Day, one of several epilepsy awareness days throughout the year. While my commitment to this community certainly hasn’t waned, I recently had to acknowledge that my sense of urgency has. Perhaps this is to be expected. I’m no longer administering medications five times a day, fighting with insurance, or holding my daughter as she seizes.
Today is International Women’s Day and please forgive me, but I’m feeling a touch jaded at the moment. Unfortunately, in the fight ahead of us, we don’t have the luxury of being jaded. So, this week I went looking for inspiration and fortification and realized I didn’t need to look very far.
On Monday, CURE Epilepsy will release a short documentary about a day in the life with Adelaide. It focuses mostly on an average morning in our home circa February 2018 – six months before I even started this blog. It is admittedly a challenging watch and includes Adelaide having a seizure, however I think it is important to share this life. To break through the apathy and lead with empathy. This was our normal, our so very not-normal normal - and remains a version of normal for 65 million people living with epilepsy worldwide and that will never be ok.
Years ago, when I first began speaking with researchers, I would catch the sparkle in their eye when they heard about Adelaide’s medical mysteries. Internally I wanted to scream at them, “how dare you find her suffering intriguing! How dare you draw ambition from our desperation!” But over time I’ve grown to appreciate the symbiotic relationship we as patients and caregivers have with researchers. We are their sparkle and they are our hope.
With epilepsy awareness month coming to a close and infantile spasms awareness week upon us I’ve been thinking a lot about my advocacy. Specifically about the nagging guilt I’ve felt for not posting as much about epilepsy awareness as I typically would this time of year. Am I failing this community by not Tik-Toking and Insta-reeling with the best of them? Then, as if he could sense my musings from 3,000 miles away, Bud aka Emma’s dad, sent me a piece of his writing that cleared the muddled lines like a doctor decoding an EEG.
Never, in my nastiest nightmares, did I ever think I would have to make the decision to let my child die - let alone twice. But I have: Adelaide was my beautiful ladybug that passed away outside of my body days before her fourth birthday and Elvis was my little gummy bear that I carried inside me for 20 weeks. After Elvis died I felt compelled to advocate for women receiving abortions further into their pregnancy because I truly believe they are misunderstood. As of this week, however, I guess we have to advocate for abortion as a human right in itself.
Jackson doesn’t go back to school for three more weeks, but everyone’s back to school photos have me feeling alllll my feelings. You see, Adelaide should be starting kindergarten this fall. There will be a lot of these should’s to come. But this one is hitting me surprisingly hard for so many reasons. Not least of which is the stress I know medically-complex families are enduring as they make life or death decisions about how to protect their children in a world that has politicized masks and vaccinations.
“Did you fast before coming in today?” The phlebotomist asked.
“No, but I’m not getting a CMP so it should be fine.”
I felt a small rush as words came out of my mouth that I hadn’t uttered in over a year.
Learning this language and using it to care for and advocate for Adelaide, was one of my favorite parts of my job - and then I was forced into retirement.
I came across Nikki McIntosh’s Instagram page and was immediately drawn to her story, compassion and advice. Her son, Miles, was diagnosed with SMA (spinal muscular atrophy) when he was 18-months-old. Since then she has made it her mission to share everything she has learned with those that are newly diagnosed, searching for a diagnosis, or perhaps are jaded by the entire medical system and could use a mindful reset. So much of what we learn while parenting a child with disabilities can be applied to typical life as well. Nikki’s practice of being “bold and benevolent” is the perfect example — but enough from me, how about I let Nikki explain it to you…
It’s Purple Day! You know the Cervantes family loves an excuse to spread some epilepsy awareness. I LOVE this community. I LOVE the people it has brought into my life, the lessons they have taught us and the empathy and understanding with which we support one another. But lately I’ve also had a sense of desperation as these awareness days come and go and our connection to them is no longer pictured with us.
Lately, I have felt very reactive, owning my inherent biases only once atrocities against a marginalized community are widely publicized. But I aiming to grow and be more proactive starting with a marginalized community that is incredibly close to me but that I cannot claim to be a part of: the disability community. As parents of children with disabilities we take up precious space: We are fierce advocates and our disabled children’s voice, but we are often not ourselves disabled. This means we do not get to drive this discussion. It is important for us to sit back and listen to the community and follow their lead - this doesn’t mean advocating less or even more quietly, it just means listening first because our advocacy isn’t about us.
