They say it takes a village to raise a child. Coley and I quickly realized we needed one after the girls were born. We also learned that the villages of today exist online. There are around 300 people in the world that have been diagnosed with a deletion or mutation of the gene STXBP1. Upon discovering June's diagnosis, Coley and I knew we needed those people to be part of our village - and it didn't take a quest to find them, just a quick search on Facebook for "STXBP1 parents." There we found both open and closed groups of parents and supporters of people with a similar genetic make up as June.
They were all out there, already talking about seizure medicines, coping with hardships, useful technology and equipment, and a love for their children. They were sharing pictures and videos of their children clapping, laughing, crawling, tremoring, walking, experiencing seizures and enduring medical procedures. They had already built a community there in the digital world and they welcomed us in.
These parents are knowledgeable, helpful, supportive and most importantly - empathetic. They know what it is like to be us, because they are like us.
All of the medical research and the information we had received from doctors and therapists paled in comparison to what we have found in this Facebook group. If you'll recall, we were initially provided with the following medical "features," as what we should expect, including microcephaly, intellectual disability, dysmorphic facies, eye abnormalities, congenital heart defects, genitourinary abnomalies, skeletal malformations, seizures, blah blah blah...
The medical description seemed to paint a bleak, grim picture for our future. A future filled with words that carry negative connotations, numbers that represent deficits, doctor's visits, surgeries, suffering and pain. A future I've worried and worried and worried and worried and worried about.
A few months after receiving the medical diagnosis, Coley and I came across a poll (partially shown below) that was submitted by a parent in the Facebook group, which included "features" of the kids with STXBP1 deletions and mutations. This poll painted a very different future than the medical description. A future filled with laughter, music, picnics, rivers, lakes and oceans. Of course, there were some terrifying and worrisome "features" included in that poll too, but when I look back at it now, I can't help but stop and focus on the most common and the most applicable to June: angelic / happy / peaceful personality.
I look at that, I look at June and I realize: That's all I need to know.