Saturday, January 10, 2009

Where am I?

I forget sometimes about Brayden's needs. Not the apparent feedings, medications, diaper changes, bathing, etc. I forget that he is not sure about himself, others and his surroundings.

We honestly have very little idea what he understands. We get little glimpses every once in a while but not enough.

This past week we attended my father's portrait unveiling (to understand all about that, click portrait unveiling). Throughout the day we were surrounded by family, friends, EPA staff and others. Jeremy and I enjoyed talking with others, the boys enjoyed the attention from all of the adults (they were on their best behavior, thank goodness). Brayden was sitting in his KidKart off to the side.

I forget he needs us. Once the room was filled with people. Voices filled the room. Brayden cried out, almost in fear. If he could talk it was like he was saying, "Where am I?" He heard nothing familiar. Jeremy and I had wandered away from him but quickly came to his side. Brayden needed someone around him that he knew. Once he heard a familiar voice and felt a familiar touch, he calmed down immediately.

At one point in the day, we were sitting in large hall listening to my father's speech. Brayden broke into a seizure, it lasted a long time. But what do we do? We normally do nothing just wait it out, count how long it lasts and make sure he is breathing. I look at him, I look at my father making a speech, I look from the corner of my eye the room filled with people and cameras. Where am I? What do I do? It is as if I cannot believe that it happens...I cannot believe I am watching my father in this position; I cannot believe I sit here with my children and one is having a seizure.

I had a dream the following night that I was back in college. It felt so real. I could feel that cold Indiana breeze, smell that dining commons smell and hear the sounds of the dorm. I woke and thought "Where am I?" I quickly came into clear consciousness and laid there thinking. How did this happen? I am an adult, married with children, a house, responsibilities and a severely disabled child. I swear that I was just in college. My actual life felt more like a dream. Do I really have three boys? I never thought I would have all boys (I would not trade it for anything). Do I really live in Waterford? I never thought I would live in the country, where there isn't even pizza or Chinese delivery. Do I really have a baby that cannot talk, walk, eat, see...? I never, in my wildest thoughts or nightmares, imagined I would have a severely disable child.

Early in Brayden's life I woke many times thinking that maybe, just maybe all of this was just a nightmare. Or at least maybe it is not as bad as it seems? Right?

His life is not a nightmare, nor is mine. It is a blessing in so many ways and ways that I may never discover.

I love my life, my family and even grew to love the country. It is just that sometimes I sit back and think...Where am I?


Unknown said...

I swear everytime I read your newest posts, I wish that we lived near each other, because I am sure we would be great friends, and have a good support system. It is wonderful that you had the opportunity to take the boy and support your keeps us in perspective of the different realities that surround us daily.

Anonymous said...

Here online other parents are very good at leaving supportive words - and you can read their struggles by reading their blogs. My reading of their blogs tells me that your experience is not uncommon. All by itself, your dream and sense of unreality can be helpful to re-ground yourself. I remind you to seek-out those close to your for more support if you continue to struggle with your current life. Barbara