"This is my 10-month old, Evanna. She has spina bifida, hydrocephalus, chiari malformation, clubfoot, and since May, severe obstructive and central sleep apnea...all of which may lead to a shortened life expectancy. Despite these things, and despite her surgeries and hospitalizations, she is joyful...a good reminder for all of us, regardless of what we are going through."
#LoveWhatMatters
Credit: Evanna's Joy
Posted by Love What Matters on Friday, August 11, 2017
[edit: they've since taken down the video, but here it is:]
I hadn't anticipated the reaction to Evanna's video when Love What Matters posted it on Facebook...as of the time of writing this post, it had garnered 275,000 views, 1,277 shares, and over 1,100 comments.
So many heartwarming comments both there and on Evanna's FB Community. May take us a while to read them all and respond as we are able.
But thank you, not just for the comments, but for helping spread her story. Over 1/4 of a million people were able to witness that spina bifida is not the worst-case scenario that so many in the medical community portray to expectant parents (especially those who do not actually work with spina bifida patients), and that despite her struggles and OUR struggles, there is JOY.
As a side note, a personal thanks as well: at the time Love What Matters posted the video, I was on my way out of town for the weekend for some downtime, to allow myself to process things. While it's been an amazing year, it's also had some really hard times, and those had weighed on me tremendously...and in my introverted, dad/husband-keeping-it-all-together sort of way, I hadn't allowed myself to deal with them fully. Let me tell you...the reaction to this video certainly helped that, knowing so many are touched by Evanna's story. Thank you.
