It is only possible to live happily ever after on a day -to -day basis.
Dear Nora and Everett,
Do you remember this picture from the day of rainbow colored confetti all over our living room? Our friend, Jessica Rice, helped me take out some of Nora’s medical equipment: an oxygen concentrator, some feeding tube gear, the cough assist, some inhalers and a suction machine. Next she taped your bright artwork to the wall as a background for taking pictures. She wanted to photograph our life from our daily view, so we could show it to our family, our friends, our community, even to people we have never met.
Nora’s compression vest blows air, so I loaded confetti into the tubes then turned it on, and watched confetti erupt into the air. I couldn’t stop laughing and smiling because a) confetti makes everyone smile and b) the moment was a beautiful testament to just how unexpected, chaotic and downright magical our life really is.
Each person has their own way of processing beauty and pain that is their life. Writing and filling this space called a blog is my way of sifting through the chaos life can bring; it is how I hold fast to the beauty, joy, and the stories that have made me, and are making me.
This space is a collection of letters to you, stories of kindness, moments of magic and miracles, and my journey of faith and doubt.
These stories are intended as a gift— to you— to your father— and to any sweet reader. 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 these stories, letters and pieces of my heart here because I think the world needs more real shares. I think real shares build compassion, understanding and connection.
These people in our life — friends, family, our community —even people across the world who have been reading our story since Nora’s diagnosis day— they love us. They want to join us on our day-to-day with Aicardi Syndrome, with epilepsy. And you know what Nora and Everett? We need them and we love them right back.
I think of this blog space as our living room. Here we host the people who want to share our journey. We share stories and we get to hear their stories too.
Some pieces of our story stand out more than others. In our day-to-day, Nora’s health struggle is visible; sometimes people stare, seem concerned, or 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, along with the occasional confetti fireworks show, have worked.
I love our life. I love the both of you. Confetti falling all around.