One Year Later...

 July 18, 2018. One year ago...almost to the date since I last wrote.

It has been an interesting time. I have thought about writing but haven't had the words. Me? No words...seems unbelievable.

The last few years of my life have sped by and crawled at snails pace. It is like my life was thrown in the air like skeet then shot into a million directions. The last few years has made me confront some things about my life that I had pushed back, see things about myself in a light that I may not have wanted and confront fears I was a bit unprepared for.

I used to write a lot, it was a form of therapy in many ways so I find it interesting looking back that writing was too much, too personal. I am ready to be back, writing, processing the world through the eyes of a woman, a high school math teacher and the mother of a medically fragile son. These are viewpoints that sometimes work in tandem and other times pull me in very different directions.

They say statistically that the divorce rate of couples that have a child with a disability is almost 70%. Having a medically fragile child puts extra stress and pressure on all parts of a relationship. My marriage had seemed that it was indestructible. With the birth of Javad, an unexpected child, with a severe health condition, also unexpected, we had seemed to roll with the punches. Somehow we managed to juggle three other children while spending time in and out of the hospital. I was with Javad, becoming an expert on his care and his condition, while David would farm the other children around. It was a crazy life but we seemed to work as a well-oiled machine.

I see now that the cracks were likely forming years before things actually fell apart. We were a blended family. The kids were our first priority. We stepped up when Javad was born but were also managing three other children who had their own emotional stories. Each of our children were struggling with their own issues and the birth of a medically fragile brother just made one more storm brewing in our lives. We all adjusted. The kids seemed to be okay. In hindsight, maybe some counseling for all of us would have been a good step. Frankly, we didn't have time.

Javad grew and was doing fairly well. The three, although maybe going through some personal rough roads, seemed to be doing pretty well. The cracks in our marriage, were slowly expanding. We spent a lot of time as a family, taking trips to the beach or other events, but David and I didn't spent time together that often that didn't have another agenda. I remember when were were engaged, we read a book together that was about a couple who's relationship slowly fell apart (oh...the irony). We talked at length about the importance of not forgetting about us, the original part of the family. That seemed like a great plan, but who would know about what trials were in our future. You are never prepared for the birth of a medically fragile child, a child that was lucky to be alive, every single day.

Each step of our life, I realize now, was driving a small wedge. We talked about Javad, we struggled to talk deeply about our lives, we were parents (and pretty darn good ones) who loved our children, but pushed each other aside. When Javad had his seizure in 2015, it was the beginning of the end. There was so much grief and worry and fear that we couldn't even see one another. We continued to work together like a well-oiled machine but personally, there was struggle. I don't want to speak for David, but I struggled immensely over the next two years. I was frustrated and angry that all the hard work that had been done, the strength that Javad had gained was the blink of an eye. He could no longer move. It was a bit of a flashback to the first night of his life when he was a life-like doll that you could see breathing. We had returned to the beginning...


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