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Some days are so hard




I have had a lot of different feelings through this whole process. Some days I have been really passionate, researching all I can, trying to find out anything that could help Elijah. Some days I have been excited to be getting close to a new diagnosis, because only then can we really move forward with helping Elijah. Some days I have been sad, feeling like I am grieving the loss of the life I thought my son might have.  Today, I feel none of those things. I feel completely numb. I am supposed to be working right now. I have time sensitive things that need to be done at my job. But, I can’t focus. I feel like I am just sitting here staring into space. I feel like I can’t even move, like nothing in me has the motivation to pick up my things and start doing what I need to do. My whole body feels heavy, like I am carrying a giant weight, and it makes it hard to move, and to think about anything else but the pressure of it bearing down on me. I wish I could just sleep. I want to be wrapped in a warm blanket and drift off into a place where I feel light and no one is telling things about my son. But then I remember that place doesn’t really exist, because even in my dreams I am fighting for him all the time. There is no escape from any of this. When I became Elijah’s mother, I stepped into this role, not knowing at all it would be like this. It was seven years ago today I found out I was pregnant with him. For seven years I have been worrying about Elijah above myself. For seven years, my love for him has continued to grow. It has grown to the point it’s all I feel sometimes. I have been with Elijah through all of the hard moments. I have seen the very worst of him. But, I have also been with Elijah through all of the good. I have seen the very best of him. I see amazing things that teachers and others who see him only in certain environments never do. I want people to believe that my son is more than a list of disrupting behaviors that make school difficult for him. But, I’m tired. I’m tired of trying to prove that. I don’t feel like fighting today. For one day, can I feel like the parent of a typical child? Can I see one report that says my son did great today? Is that too much to ask?  What makes everything even more difficult, I think, is that sometimes Elijah’s differences are invisible. In certain settings, Elijah appears like a typical child. So, there are many people who hear stories about what goes on with Elijah at school, and they have a hard time imagining that he could really be that way. There are even people who have babysat him and spent time with him one on one who have never seen anything like the things that happen at school. When Elijah is comfortable, whether it be with a certain person or in a certain place, he can be completely different. That person is who I like to think of as the real Elijah. That is who he would be without environmental stressors bringing out the worst in him. He is a happy, fun, sweet boy who gets excited about the simplest of things loves to learn about them. He adores celebrations and thinks every holiday should be celebrated as though it were Christmas. He has a wild imagination and a very creative mind. He loves to try new things. He is a joy to get to know. This is my son. This is the one I wish everyone could see and know.

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