It is only possible to live happily ever after on a day -to -day basis.
Welcome! I’m so glad you’re here.
My name is Jesse, and this is my crew: my husband Tyler, my kiddos Nora and Everett, and our happy Labrador Tahoe (not pictured). We find joy in confetti firework shows, roller skates, singing, bike rides, dancing, and Charlie Brown movies.
I created this space 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 our 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 and cheer on our family.
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. A place where you and I can come just as we are: unpolished, imperfect humans, seeking to hold fast to faith, love, hope, joy, and wonder. So, I guess if I’m being honest, we could probably just consider this space a collection of conveniently compiled essays for my children to show their therapists one day (you are so welcome, kids). In which case, I hope and pray that a few strong themes emerge: this woman loves Jesus, her family, her life, and confetti. Like A lot.
Cheers, hugs and welcome,
Jesse Van Leeuwen