Some one said to me recently "I choose to be positive about this, I guess I'm just a positive person." And I suddenly I had a vision of my own brain, like the cartoon movie Inside Out, my little Anger buddy was screaming "Newsflash" I am a positive person, while Joy was talking him down, so that i didn't say something without a filter. (If you haven't seen this movie it's a must, "newsflash" is a regular phrase for Anger!)
But seriously, I consider myself to be a positive person most of the time, but I also have moments as Sadness (Another Inside Out reference). When it comes to my son, I have a lot of fears of the unknown, as all parents do, but I have watched new behaviors start out of nowhere recently, that continue to add to his list of flags for autism. Because of those fears, I guess sometimes I don't sound like a positive person, when actually I am completely positive that with the right therapy and hard work, Jack will be fine. However, I am also I realist, I know that because of his duplicated chromosome we have potential issues ahead of us. Epilepsy is a common trait among other children with 17q12 Mircodupilcation Syndrome, a symptom manifesting anywhere between 7 months and 7 years, in children currently involved in the research being done regarding this mutation. I also know that epilepsy has affected relatives on my husbands side, and that Jack had a seizure at six months, further projecting my fear. Yes I know, don't think about what hasn't happened or a future you can not control. But this is my son, this is the child I dreamed of my entire life, and like all parents, I will worry about him for the rest of my life. But that also doesn't make me any less positive about the out come. In reality, it simply makes me a parent. I sometimes feel like I am swimming in a fish bowl, filled with fear and swimming in circles, desperately trying to jump out into the ocean, where I can swim freely, away from those fears. I am constantly talking to myself, the voice inside me tells me not to be afraid, that my son will be fine. I often find myself surrounded by people saying the same thing, and mostly I appreciate the reminder on the days I find it difficult to listen to my own inner voice. I guess I am learning to truly embrace that fear, knowing it is not something I will overcome in a day, but in time. I guess what I am trying to say is, we are all positive parents, learning to embrace yet another new and unknown fear that comes from an unexpected diagnosis. If we weren't truly positive parents, our children would be wearing Hazmat suits, stuffed with pillows when we send them outside to play. So in the end, allow the fear to wash over you once in awhile, it's ok, just don't forget to wash it off tomorrow!
Hugs from a fellow warrior,
Em
Xoxo
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