Jan 26

Jan 26 Soraya keeps her hair

Through the marketing of Normal Broken, I’ve had the opportunity to listen, relate, and connect with person after person who is facing their unique grief while craving a sense of community and understanding. One of these people, is Tasha Firoza Faruqui, a pediatrician and mother of three, whose middle child, Soraya, has an unknown neurodegenerative condition with no cure. Today, I ask you to sit in the dark with Tasha, Soraya, and their family. To witness their journey and send them the love and strength they need, as they survive with tears on their faces and laughter in their hearts.

Jan 5

Jan 5 Finding reason

Kelly Cervantes

I asked Miguel if he wanted to write this week’s blog post in honor of his final performance as Alexander Hamilton this Sunday. He kindly obliged. I don’t believe that either of us has been brave enough to sit down and process what this show has meant to our family and how complicated this goodbye is.

Jul 14

Jul 14 The "F" word

Kelly Cervantes

If we’re lucky, we all have at least one teacher that makes a lasting positive impact. A teacher that we don’t just connect with but that sees us for who we are, accepts us and encourages us. For me, that educator was Mr. Terry Peterson. He was our high school speech and drama coach (forensics anyone?) and he also directed the musical. He listened to and was privy to our teen drama but never intervened. He coached and supported us, cheered us on and offered life advice - but only when it was requested. And this week he is sharing some of that insight and advice with all of you.

Jun 16

Jun 16 Caregiver Kintsugi

Kelly Cervantes

“How to be a better support for the growth of those around me has long been the special object of my consideration, and yet, I am hesitant to offer anything more than observations from my own meandering experiences.” While reticent to offer advice, Bud Hager has taught me more than most - and by utilizing some of the most beautiful prose you have read in ages! Please enjoy this new piece from Bud.

May 26

May 26 Greeting from a hospice chaplain

Kelly Cervantes

With Memorial Day approaching, this felt like the perfect time to share a post written for Inchstones by Paulette Bilby, a hospice chaplain. During the two months that hospice workers were in our home I learned the beauty of their work, helping our family prepare for a life without a physical Adelaide all while keeping her as comfortable as possible and explaining to us what was happening, what to expect and what Adelaide needed now. End of life is difficult, scary and emotional in all the ways you are well aware of, but we don’t have to do it alone.

Mar 3

Mar 3 Into the Rare Disease Woods

Kelly Cervantes

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”).

Oct 14

Oct 14 Unexpected gifts

Kelly Cervantes

Jenny and I didn’t grow up together or share debaucherous nights in college. She wasn’t in my wedding or at the birth of my children and we never shared an office. Yet, I feel like I’ve known her forever. Some people come into our lives when we need them most with the exact kind of support we need and looking for the exact kind of compassion we can offer in return.

Sep 30

Sep 30 More

Kelly Cervantes

In honor of CURE Epilepsy’s virtual event, “Unite to CURE Epilepsy” I wanted to share a personal story from our epilepsy community. Tracy Molnar responded to my call for guest blogger submissions, and I am thrilled to share her experience with her daughter, Lemon. Her vulnerable essay is a sincere reminder of what we are fighting for and how important this community is to each other.

May 6

May 6 Hike for Life

Kelly Cervantes

The leaked supreme court opinion has been consuming all of my waking thoughts. However, having spoken at length about my stance, I thought it might be nice to hear Miguel’s view on it all. He may not be at risk of having his body regulated by the government, but I believe that it is time that men stand with us, shout with us and fight alongside us.

Dec 3

Dec 3 Indomitably becoming

Kelly Cervantes

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.

Sep 17

Sep 17 Moving In

Kelly Cervantes

My friend, Bud AKA Emma’s Dad, saved me this week by sending a blog post I’d asked him to write and holy crap - I don’t think I have ever read the medically complex parenting journey spelled out so clearly or so beautifully. Seriously, this post is poetic. It is my absolute honor to introduce you to Star Dadvocate, Bud, and his journey toward acceptance.

Apr 2

Apr 2 Bold and benevolent

Kelly Cervantes

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…