For me, I think my search has been largely driven by an inherent insecurity, a grappling for something to help me be grounded, to feel strong. For me, finding a "fact" about something that I am experiencing validates not only my experience but me as well. I feel certain that I am right. I feel certain that I'm on the right path. I feel certain that I am capable of handling this life, this situation. Not only am I seeking certainty, my children now are seeking certainty about the big questions such as, "What happens when we die?" "How do I know this is the real me and not the dream me?" and "When I die, how will Santa bring us presents?" Ok, so maybe not all the questions are big ones but they are certainly big ones for my 5 year olds.
When I don't feel certain about things, I feel anxious. I feel ungrounded and vulnerable. I don't enjoy feeling like that so I'm compelled to seek the certainty that I feel I am lacking. Over the last few years, though, I have feverishly sought certainty about infertility, about autism, and now about my diagnosis of Ehlers Danlos Syndrome, and I'm realizing that yet again I am facing unanswerable questions and that this endless pursuit of certainty is exhausting me. I can't continue with this unrelenting pace and I must find a way to balance a search for answers while simultaneously accepting the unknown which is before me.
For those with children who have autism, you know what kinds of questions that cross your mind. What can I do for my child to help them live happy, productive lives? What services do they need? Will they ever talk? Will they fall in love? Will they be ok when I'm gone? Then there are those nasty questions that needle at some of us like, "What did I do for this to happen to my child?" "How can I be a better parent to my child?" "What am I doing wrong?"
For those who have been diagnosed with a chronic condition such as mine, "What is this disorder going to do to me?" "How bad is it going to get?" "What do I need to do to make this as good as it can be?" "Do my children have this as well?" Then, the nasty, mean side of ourselves which asks, "Is this real?" "Is this pain just normal and I'm making too much of it?" "Do I just need to 'suck it up'?" "Am I seeking attention somehow?" "Was my doctor wrong?"
Yesterday, I felt quite sad about my new situation. I have concerns. I continue to experience new symptoms of Ehlers Danlos that are disconcerting. I don't like it one bit. I know I have a choice though. My life is a gift and I need to value it exactly as it is. I don't need others to agree with me to validate my own experience. I don't need an expert to tell me what I already know. What I need is to listen to myself, to trust my instincts and to have faith in what I'm experiencing now and to find peace even in the darkest moments. I also need to be brave enough to love autism even at its worst because it is a part of my children and my children deserve to be loved in their entirety. I need to love all of myself even the parts that are unstable (literally and figuratively!), the parts that hurt and those that limit what I can do. Just like my children, I deserve to be loved entirely and who better to love me than myself? Of course, I can't help but have flash backs of the SNL skit with the line, "I'm good enough. I'm smart enough and doggone it, people like me." It's cheesy to say but profound when you really can feel that way.
So, for those of you who can relate to this post, I hope this gives you at least a moment of peace. If you have any particular things that help you feel comfortable with uncertainty, please share. I believe we all have something to teach one another. Thanks for reading.