Mar 13

Mar 13 COVID complications

Wednesday night I started to write a post about how terrifying COVID-19 is to the medically complex and fragile communities. I mean, our normal was already face masks and obsessive hand-washing for years - where do you go from there? But then I realized it would be so much better to hear from a medically fragile individual who is facing COVID-19 fears personally. I am honored to present a guest writer this week, my dear friend, Courtney, who so clearly explains what is at stake for the medically complex community and why you should care.

Mar 6

Mar 6 The show must go on

Kelly Cervantes

First and foremost, Miguel’s return to Hamilton on Tuesday night was flipping fantastic. More on that in the post. But also, the Richard Rodgers Theater, where Hamilton plays in New York, and the Cervantes family go way back. Everywhere I looked the ghosts of our former lives were playing out scenes of their own. So. Many. Memories. How do we reconcile those memories with the very different people we are now? We have to figure it out as we go because the show goes on whether we ready for it or not.

Feb 28

Feb 28 Everyday we're hustlin'

Kelly Cervantes

Tomorrow is Rare Disease Day and among the many (many) awareness days throughout the year, this has always been one of my favorites. This week I was reminded why: the rare disease community includes some of the most dedicated, supportive and hardest working hustlers you will EVER meet. From patients to caregivers to clinicians- alone we are rare but together we are strong AF.

Feb 21

Feb 21 Casa de denial

Kelly Cervantes

So, I’m freaking out. It snuck up on me, I’m really talented at living in a place of denial. I make a home there with decorative pillows, throws and cozy rugs. Then that cozy rug is pulled out from under me and I’m forced to face the truth.

Feb 7

Feb 7 Make my (awareness) day

Kelly Cervantes

This week I started to see reminders in my inbox and social media feeds that International Epilepsy Awareness Day was just around the corner, February 10th. I felt overwhelmed by the need to do something and underwhelmed by my desire to advocate. An Eeyore cloud settled over me and then, for the first time since Adelaide died, I felt anger. I’ve been waiting, even wanting the anger to surface. Then, there it was, grinning back at me like Jack Nicholson in The Shining. All purpose, no BS.

Jan 31

Jan 31 Tiny dancer

Kelly Cervantes

I am very slowly learning that grief requires A LOT of active work to process. Time alone does not heal wounds this big, you have to want to heal. So, this week I decided to push myself. The grief will never leave me but I can choose to change my mindset around it. Today I’m reflecting on one happy memory and how it procured one of the many gifts Adelaide gave us in her life: perspective. Will this help me move through this grief limbo? Who the heck knows, but it’s worth a shot.

Jan 24

Jan 24 Grief limbo

Kelly Cervantes

Last night a friend asked me where I was in the grieving process. I explained that I had moved past the debilitating phase where getting out of bed is a struggle and slothing is a legitimate activity, but I still wasn’t me. I’ve taken up residence in some sort of grief limbo: going through the essential motions of life, committing to what is absolutely needed of me but fighting to go further. In this post get ready for an honest and slightly rambling look inside my mind over three months into this new normal.

Jan 10

Jan 10 What's right now

Kelly Cervantes

As I reemerge from social hibernation I am taking the tactic of dipping my toe into the pool to check the water before wading in. From social media, to blogging to events, I am giving myself permission to ease my way back in and only doing what feels right. Also, if something feels right one day and not the next, then that’s ok too. So, this week there is a blog - will there be one next week? Who the heck knows but today writing felt right.

Nov 29

Nov 29 Gobble, gobble, out

Kelly Cervantes

Grief is complicated. Understatement, I know, but here we are. I’ve spent the better part of the last six weeks trying to fill my time and distract myself, but I realize now that to move forward I need to face my contradictory emotions. An inchstone at a time I have to do this.

Nov 22

Nov 22 Taking flight

Kelly Cervantes

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.

Nov 15

Nov 15 A new normal

Kelly Cervantes

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?

Nov 8

Nov 8 Make a wish

Kelly Cervantes

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.