Tuesday, December 22, 2009

Possibilities and Disappointment

Last Tuesday, I spoke with two friends who I do not see on a regular basis. One friend shared a dream she had about Ben two months ago. We were all in front of the YMCA walking to our cars, ready to go down a staircase. My friend gave her hand to Ben to help him walk. In the dream, she said, he gave her this funny look, like, "I don't need your help." Ben was walking by himself, a bit hunched over, but walking on his own. I have had many friends and family tell me about this type of a dream, where Ben is walking or talking. It always makes me smile to think that people worry about Ben like we do, keep him in their thoughts and pray for his well-being.

The other friend lives on the opposite side of the city, and we have not seen each other in a few years. She left a long message about a child she had heard about that had similar traits as Ben, and they had found something that helped the child. She wanted to send me the article about it. I have to admit, when I got the message, I definitely blew it off. So many people try to tell us about new therapies, cures, religious rituals and diets that we should try on Ben. My radar always goes up when I get another one. But this friend was determined and emailed me the article, The Boy Who Woke Up Late.

At first I skimmed it, but then it got my attention and I read it all the way through. My heart started racing, my brain went into high gear - it all sounded like Ben. The cord wrapped around his neck, no one sure what he had, no talking or walking. Then I started thinking about signs - the family was from a beach we know well, two friends that I have not spoken to in ages contact me in the same day and mention Ben. I start doing the "what ifs", what if this was all some terrible nightmare and suddenly it would be over. I could feel my emotions bubbling inside and strange thoughts entering my head.

After emails and phone calls to doctors, I found out that Ben most likely does not fit the profile for this particular genetic disorder. Although we will go ahead with some of the testing, I am not hopeful after hearing that he has passed other preliminary tests for this metabolic disorder years ago.

All this took place from 7:30am to Noon on the same day. A roller coaster of emotions for me - from annoyance (of the article) to elation (of the possibilities) to doubt (of this working) to where I am now as I write this - sad. I am sad that I can be completely thrown into the hope of Ben being cured and get so excited and then be so let down in a manner of minutes. I guess I am disappointed in myself for not being happy with the way he is and wishing he could talk to us and walk around like other kids.

I have asked myself the question without ever completely anwering it. If I could change Ben to be a typical kid, would I? Would I give up all the people we have met through Ben, all the experiences we have been through, possibly give up the strength of my relationship with my husband in order to have a typical Ben? It is a tough question, perhaps impossible, and one I am not willing or able to answer at this point in my life.


  1. There is a reason Ben is "special". He gives so much and asks so little in return.

  2. Tough question. You love Ben for who he is. Yet it seems like life would be easier for him and you if he had only the typical needs. The thing is, like you pointed out, we don't really know that life would be better for anybody, do we?
    Dealing with different than expected changes you I think and I can imagine the parent I would have been. I'm completely type A and I would worry about a whole different set of things. I don't know that I would be better if Jack had only typical needs. I tend to think that Jack has helped me to grow tremendously. Right now he is a happy happy happy little boy. I don't know how I'd answer the question either. Thanks for this thought provoking post! (Sorry about the rambling). :)

  3. Ben wouldn't be Ben if he wasn't Ben!


Thank you for reading my post. I appreciate you taking the time to comment. If you wish to contact me directly, please let me know and I will email you.