November 18th had been looming in my calendar: CURE’s annual benefit, where I was scheduled to speak in front of 1,000 people. The theme for the evening was, “Taking Flight”, inspired by the name of one of CURE’s research grants that is awarded to a young investigator. Leading up to that night, I was feeling less like taking flight and more like failure to launch. However, in usual CURE form, it was an inspiring night and I am honored to have played a small part.
After the immediate aftermath and planning of Adelaide’s service, the love filled chaos of family and friends, powering through multiple trips and halloween thrown in the middle, I’m finally home and it’s quiet. Reality hit me like a freight train as I’ve struggled to envision my new normal without our medically driven routine and the corresponding lick-kisses. Where do we go from here?
As if going to Epilepsy Awareness Day at Disneyland after losing Adelaide wasn’t hard enough, it was supposed to have been her Make-a-Wish trip. When we finally came to terms with the fact that she would not be able to attend, her Make-a-Wish team came through with an extra-special early birthday party full of its own magic. This week we learned that Miss A’s magic lives on and is out there waiting for us - when we’re ready to find it.
November 1st, marks the first day of epilepsy awareness month. So, who better to lean on for this week’s post than my mentor in all things epilepsy, advocacy and fundraising: Susan Axelrod, CURE’s founder and my cherished friend. She is the very definition of a warrior mama and I will never be able to thank her for the road she paved on which I march today.
No amount of flowers, food, alcohol or words can fill the gaping void left in Adelaide’s absence, and right now, I don’t want anything to. This week, I was reminded of the words of another warrior mama whose son also has a neurodegenerative disorder and maintains her own well-written blog. Many of of her posts hit home but there is one in particular that I keep coming back to: "Sit with me in the dark".
Time has had a jarring presence in our house lately: speeding up then slowing down, each day blending into the next, not adhering to the laws of physics. I feel like I’m adrift with no land in sight. But there is one thing helping me keep my bearings amidst these rough waters: Jackson. I know everyone thinks their kid is incredible but this kid, Adelaide’s big brother, is really something else. He is my lighthouse in the storm.
Photo credit: Jennifer Loomis
I have to start by thanking everyone for their incredible words of love and support. Reading stories about how Adelaide’s existence has positively impacted others lives, buoyed our spirits over the last week. Now, if you were like me, you might be asking yourself, “what is hospice anyway?”. I’m certainly no expert having only navigated this space for the last month, and I imagine it looks a little different for everyone, but the following has a been our experience.
This week’s blog post was difficult to write, harder to put out into the world and maybe even harder yet for some to read. Your love and support has lifted us up and will continue to in the days ahead. Thank you…
The Cervantes family has had quite a week with something for everyone to celebrate - and we absolutely have. But lurking in the shadows of every celebration is chronic illness just waiting to take back the spotlight - and it has. I don’t use the word “hate” lightly. In fact, there is only one thing Jackson is allowed to say that he hates: epilepsy. But for some reason, using this word has been considered taboo in the community for years. So, I tried to figure out why.
I call this selfie, “Hiding from life”. I don’t know about all of you, but this Fall is doing a number on my sanity. Pretty sure I blinked and we were already halfway through September. Typically, I thrive on being busy but this season just has me wanting to crawl back under the covers, and with so much uncertainty in our life it’s not hard to see why. I took this week to check back in with me and remind myself that sometimes the best answers to the big questions are little. In typical Adelaide fashion she helped me along with some special moments of her own.
As parents we learn to live with very little privacy. I mean seriously, when was the last time you used the bathroom in peace? But what about when you have physical therapy, palliative care, an oxygen tank delivery, and your daughter’s usual home nursing care all in your home before noon. We are incredibly grateful that Adelaide is able to receive as many services in our home as she is but I can’t help but feel sometimes that we live in a much smaller, but still very public, Grand Central station.
Just call her Dr. Bug. Thanks to her mast cells rejecting her IVIG infusions Miss A will now be sporting this adorable medical accessory whenever she leaves the safety of our home. Adelaide’s health has been declining in the last month and we are fumbling along as we figure out her new limits. Years ago, life gave me a crash course on living within my financial means, but now I’m learning how to live within our wellness means. Dr. Bug is an excellent teacher, though I must say, not very patient…
