It is only possible to live happily ever after on a day -to -day basis.
–Margaret Bonanno
Hi! I’m so glad you’re here.
My name is Jesse, and this is my family: my husband Tyler, and my children Nora, Everett, and baby Penelope. I created this space in 2014 when Nora was 3 months old, following her admission to the PICU, where we were told she has a rare form of epilepsy and an “abnormal” brain structure. Later, we learned Nora has Aicardi Syndrome (a syndrome impacting around 4,000 girls in the world).
I originally named this space “And She Lived Happily Ever After,” words that in the early days had become our battle cry and our one-line prayer, a distant hope that our family and our little girl could thrive and find happiness despite significant challenges (daily seizures, global delays, feeding tube and fragile lungs). At first, I’d just intended to update family and friends on Nora’s health concerns and treatment, but every time I sat down to write a medical update out came a story instead – an invitation to any reader to join our day-to-day life.
Over the past few years, this space has slowly evolved into a collection of stories: stories of kindness, moments of magic and miracles, and my journey of faith and doubt. Today, it is a place I come to sift through the chaos life can bring. Filling this space is one way I hold fast to the beauty, joy, and the stories that have made me, and are making me.
These stories are intended as a gift — to any sweet reader, to my friends, family, and most especially to my children. I wish for them to be gifts of hope and of encouragement in seasons of endurance. I hope the refrain sings “you are not alone,” and I hope one, long, strong note carries through each page sounding one message: happiness can and does exist right here, today, especially in the confetti filled chaos of day-to-day life.
I share stories, letters, and pieces of my heart because I think the world needs more real shares. I think real shares build compassion, understanding and connection. In my family’s day-to-day life, Nora’s health struggle is visible; sometimes people stare, seem concerned, or are clearly wondering. Sometimes, even, they’re a little frightened. I’ve learned three things help me feel less alone when this happens 1) smile (if it’s a good day— no one has to smile every day), 2) help them understand the things they’re wondering about and 3) invite them more deeply into our lives. So far, these three things, have worked.
I’m so glad you stopped by today, thank you for joining our family on this journey!
Cheers, hugs, and welcome.
Jesse Van Leeuwen
P.S. To keep in touch, follow along on Instagram:
