In honor of Rare Disease Day (which was this past Tuesday), I am highlighting the story of a fellow rare disease zebra: Fiona Wilson, who was born with Turner Syndrome. Rare diseases can be so very isolating because they are, by definition, rare. It makes finding a community that understands imperative. Fiona’s diagnosis may be rare, but her experience is far from it. And her lessons are universal. Just ask Stephen Sondheim (“Alexa: play ‘You Are Not Alone’ from Into the Woods”).
Strawbaby is officially older than Adelaide ever was. I thought that milestone would hit harder than it did - but the day came and went. So I hoped I might also make it through Strawbaby’s fourth birthday unscathed. And I almost did, until we sat down at the nail salon - or the nail salam as Strawbaby called it. Still, I was proud of myself for how I managed the day even if I slipped a little at the end.
This is not a drill. It’s happening. It really freaking happening.
My publisher let me know that Normal Broken would be available for online presale at some point in February. Sooo… I may or may not have been stalking Amazon and Barnes & Noble each day to see if it was listed yet. Then as I refreshed my search, there it was: a close up of a large green palm-style leaf with a little red ladybug crawling along. Normal Broken: The Grief Companion for When it’s Time to Heal But You’re Not Sure You Want To is available for purchase.
I did it! I had my author headshot photo shoot this week and I didn’t even need to take any Xanax to get through it. My friend and make-up artist Kat assured me it would be like riding a bike and she was right - by the end I was even having fun. From where I sit now it’s hard to believe that I used to have my picture taken for a living, which got me thinking about 25 year old Kelly and what she would think of my life now.
Every three years or so Miguel and I have taken a just-us/no-kids vacation. We cherish this time together where we get to be just us, as a couple, away from the exhaustion of regular life. Last week, in Mexico with Miguel I found a certain stillness, a peace and acceptance of this incredible life I’ve been gifted. Reentry into our typical life though has not been nearly as smooth or successful.
My body image issues felt like a dirty dark secret and while I assumed that most people felt negatively about their body shape, I was also simultaneously ashamed that anyone would find out how I felt about mine. Because I had normalized my negative body thoughts, I had never addressed them. There’s nothing quite like sharing your writing publicly to force you finally do something.
For decades now I have struggled with body image and an urge to obsessively control that image. I haven’t talked much about this because honestly, my story is a dime a dozen. But with New Years’ resolutions, Miguel and I’s upcoming trip to Mexico and booking my author headshot photoshoot - my body has been on my mind a little more than usual lately and it’s growing harder for me not to obsess. So, as always, here is me being honest with you all and where I’m at.
It’s been three weeks since my last blog, yet I was still struggling with what to write about this week. Before going on hiatus I assumed that my first blog of the new year would be inspired by some holiday effected grief moment. But our Christmas and New Year’s celebrations lacked the emotional ferocity of years past. In fact, the holidays felt – dare I say it – normal.
It’s time for another episode of existential crises with Kelly Cervantes! This week I continue to wonder what/who do I want to be in this life? As it is apt to do, the end of the year has me re-evaluating every decision I have ever made and questioning if I’m doing all that I can/should be doing – for my family, career, personal health – you know, just… all of it.
I want to be clarify something after receiving several messages following the release of our “Day in the Life” documentary. Epilepsy sucks a whole freaking lot regardless of specific details. You or your loved one doesn’t have to have seizures every day, week, or month - or to have died from them. Someone with epilepsy can lead an outwardly ‘typical’ life: physically, emotionally, behaviorally, communicatively and the impact is still all-consuming and over-whelming. But my guest blogger this week, Carrie Buck says it much better than me.
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.
And just like that, the holiday season is upon us. No, our tree isn’t up quite yet (this pic is from last year). But if you were taking cues from my social media feed (or my bank account) you would assume that it’s been Black Friday for three weeks already. Alas, it is only just beginning. Thanksgiving is like a battering ram into the holiday season, leaving the barred door to our emotional reserves in splinters. This year, I’m going to try an unobtrusive knock on that door followed by a calm and peaceful enter.
