Letting yourself grieve

Know thyself,
or at least keep renewing the acquaintance ~ Robert Brault

When you have a child with a major disabiity, you enter a fire of instruction upon birth. You have painstakingly prepared for you child, have done all the classes and research and in the blink of an eye, you have to toss that away and focus on your child's health. 

From the beginning I didn't doubt that Javad would be okay. Apparently after many conversations, I may have been the only one. Javad was tiny and so weak. As I said, he was like a living doll that was breathing but absolutely no movement. He didn't cry. He just laid there, silent and still.


I am not sure I ever really allowed myself to fully grieve that. As a parent, you have dreams and hopes and, although I was thrilled with Javad, the dream of having him run with his brothers and sisters, learn to drive a tractor with his Papa, and garden with Grami, were gone in a moments notice. Over the years, these losses were felt, but I worked to hold back many of my feelings so as not to seem like a complainer. I dove in with my passion and drive to learn everything and be the greatest advocate I could be.


So fast forward to Javad's seizure. He was attending school full day, had friends, was the happiest boy. After the seizure, he spent a month in the hospital, sleeping. He didn't open his eyes. We had no idea what damage the seizure may have had. We brought the boy home and hoped he would wake up.


For six months we hung our hopes on his eyes opening, a blurry smile. We hoped his lack of movement was temporary, but, now we know, that the road to healing with a major injury like this, takes a really long time. We have accepted that he will likely never be the same, but celebrate his every victory!


Knowing that he couldn't move took me emotionally back to the early days. We were starting over. He had to learn to smile. Yes and No was an eyebrow raise (yes) and blinking (no). After a year he learned to shake his head "no." It was a celebration. Another six months and he could hsake his head "yes." Each tiny step took so long. I had a thirteen year old infant. Mentally, we saw real glimmers of our boy. Every day that passed, we saw more and more of him. 


By September, that first year, I began to fall apart. Once I knew that he would survive and we began to see small recovery, I became overwhelmed by emotions. Every day I cried. My goal was to get through the school day without crying in front of the children. Sometimes I made it, sometimes not. I was overwhelmed everyday. I was struggling to hold things together. I knew this feeling. I had felt it before. If I didn't get things together, I was going to have a nervous breakdown. I spent every day pretending I was holding it together, but inside I was completely falling apart. Very few people saw how bad it was. I was in a deep pit. My "I'm together" face was put on each day, but inside I felt nothing but overwhelming and debilitating sadness. I was a walking zombie. The only thing I could rally for was Javad. He was all that mattered. By the end of the first year, the house was a cold place where no one was being cared for and I was seeking out ways to feel grounded. 


Enter the Portland Timbers...
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