It’s a year later, and here we are: Living. Laughing. Crying. Hoping. Rejoicing. Despairing. And learning.
Let me say that last part again: learning.
I haven’t posted in months; please don’t interpret my silence as “no news is good news” nor as “no news is terrible news.” Truly, it’s neither.
Spring and summer brought our family a treasure trove of joy filled moments. We celebrated Nora’s first birthday, traveled north, had picnics in the yard, felt the sand between our toes, had dance parties, read books, watched our favorite TV shows, and welcomed a beautifully behaved, gorgeous, yellow Labrador named Tahoe into our family.
Today I’m drinking a pumpkin spice latte, it’s raining and grey outside and Nora and I are wearing our first fall sweaters. Autumn began weeks ago, but today feels like the first day of a new season and with each season, life becomes a little clearer for our family.
We’re coming to know what is normal for us. We’re learning how to be present no matter how the moment is unfurling. Our normal is physical therapy, cooking dinner, occupational therapy, going out for date night, educational therapy, reading stories to Nora, doctor appointments, laundry and naptime, emailing neurology Doctors, laughing with Tyler, reading about possible seizure treatments, and singing itsy bitsy spider.
We’re moving forward now, and when we looked up and looked around, we discovered that the seasons, and the joys and the people we love have been moving along right with us – there is rhythm.
Praise God, there is rhythm.
We’ve made tremendous gains in seizure control; nevertheless the struggle continues as we continue to pursue treatment options and discern what levels of drug intervention verses seizure activity are appropriate for Nora’s health and development. Nora has been averaging daily seizures since last January, regardless, our neurologist continues to be impressed and surprised by Nora’s developmental progress and the seizure control we’ve obtained. Please understand this doesn’t mean Nora is following a typical development schedule; on the contrary she is experiencing clear and significant delays.
Developmental progress and seizure control aside, there is no greater joy to us, to her family and to her friends than watching Nora embrace and explore her world. We’ve been gifted a wealth of seizure free moments and even days. We’re thankful, so beyond thankful, for Nora’s clear progress and overall gains in every area. Part of the learning and finding our normal has been discovering how to live, and dance amidst our daily neurological firestorms. Often my heart is heavy with the reality of our challenges but full with gratitude for this journey. Rhythms and routines that didn’t exist a year ago have emerged and continue to evolve. Nora is growing, we are growing and I sometimes just stop to feel the pulse of our days continuing on.
You’ve had a glimpse of our journey and have been sharing in our story. You’ve cried with us, prayed with us, and celebrated with us. This last year has been most unusual, crisis centered, with raging ups and downs: your existence, your comments and messages and simply knowing you are reading, serves as a great source of comfort for our family. Thank you.
Somewhere along the way, during these months, a life we-couldn’t-quite-imagine has evolved into our-life-we-are-living, and I can’t wait to share more with you. Thank you for reading, thank you for rooting for our Nora and for our family, and thank you for coming along on this journey with us. Happy fall!
Photo credit: Jessica Rice Photography