We all have those friends, who you meet and connect with, where within a short time you can’t imagine your life if you hadn’t met–but you know life would have been different; poorer, tea from a twice-used tea bag. I have a garden of friends like those, a veritable field of wildflowers, though most of our shared tears, laughter, arguments, and wine have been cyber in nature.
I hate those memes that go around, the articles about clever art installations mocking our dependence on the internet and smartphones. Do we miss the point, the moment, are we hiding behind our keyboards? Maybe, sometimes. But often we’re connecting, building new friendships and learning about points of view we wouldn’t otherwise see. Those memes dismiss the relationships, the access to viewpoints and information that broaden our worlds. They negate the very real support.
My first full online experience was a forum where I met other parents dealing with the same issues as I was, asking the same questions, feeling the same fears and frustrations, laughing at the same gallows humor, sharing dreams, hopes, denial and acceptance. Equally important were the adults I met in that forum who themselves had the disorder. Also asking questions, sharing information, making jokes and living their lives. If memory serves, before then my internet experience was limited to brief jaunts with Ask Jeeves. Since then, I’ve been a member of several online communities with various special interests, and made some friends along the way in all of them. But that first forum was special. What a shock it was for me to discover not all forums were as wonderfully accepting and supportive, with statements carefully phrased so as not to be misconstrued and questions framed to help gather information, not attack.
Maybe the stars were aligned and the moon was in the seventh house, I don’t know. What I do know is that we formed a tight, tight group that remains intact to this day, though none of us actually use that forum anymore. We’ve supported each other through medical tests, diagnoses, hospitalizations, dance recitals, IEP meetings, divorces, jobs, life. We’ve discussed fears of seizures being misinterpreted by overenthusiastic and undereducated police. Many of us have been fortunate enough to meet a few face to face. Imaginary friends who send real gifts, offer real advice, real laughter, provide an army of support to each other though various challenges.
Our children are ours. Face to face or not, we’ve cheered successes and cried over setbacks, we’ve watched each other’s children grow. Our online village. Our community, not dissimilar to being a member of any minority group. But not all of our children grow up. Some have children that mature and leave home, some have children that will never be independent. A few have children who have died, or will die. Sometimes this is known well in advance, sometimes not. We lost one of ours this weekend. I’m not specifically close with this mom, she isn’t one of the women I formed a relationship with over and above our common bond, but her daughter was one of ours.
Imagine SIDS (Sudden Infant Death Syndrome, what used to be called crib death) being a risk forever. Imagine a life where there is no age where the doctor says you don’t have to worry about that for your child anymore. In our world that’s called SUDEP (Sudden Unexplained Death in Epilepsy). Certainly not a common risk, but one that’s all too real. I’m tempted to say it’s the fear and knowledge of SUDEP that brought our group so close together, but I don’t think so. Many of us didn’t even know this existed until we were years into our common journey.
Imaginary friends? Maybe, but much like the mysterious life in my planter, the flowers that have bloomed, flowers of laughter, love, tears, and mourning–are very real.
Rest in peace, sweet girl.