Did I do this?

I  was looking forward to my trip to Michigan as a chance to get back into the habit of writing what I like to think of as my previously entertaining and pithy blog posts.  I have been away from writing for far too long, consumed by life.

As it turns out, I drove 13 hours to get away and somehow failed to realize that I accidentally brought myself with me.  I was rather unorganized this year in the packing and preparing for our journey so I assumed, that in my haste, I would leave my heart and head at home… however, for those of you who have been intimate with my drawers and closets,  the truth is that I am never too far from organized. Therefore, as much as I tried, I failed miserably at leaving myself or anything else behind.

I am here, but I have yet to find the peace and relaxing among the midwestern blondes with their chipper outlook on life.  Last year I found it endearing and heartwarming but now…what I wouldn’t do for a loud, obnoxious, fast-talking Jersey girl!

The real problem is that Max brought himself here too.  I wanted more than anything for him to leave behind the events of this past year, find some peace of mind, a little fun and some relaxing.  He is having a very hard time.  He is not genuinely happy here or anywhere else.  Sure, he can have some laughs, look happy in pictures, and smile his gorgeous smile, but his anxiety and its ugly cousins have come here too and he is all too able to eloquently explain his feelings of sadness, despair, anger and regret.  He is still pissed at the world for one very good reason – because he has CP. He doesn’t want to be here working on his walking (which is coming along great, by the way, along with excellent swimming) he wants to be “normal,” and he isn’t able to accept anything less.

I have travelled the world, gone from here to there trying to find a place where Max will have what he needs to feel comfortable. He doesn’t feel comfortable at home all the time with his lacrosse/soccer/baseball/basketball friends and he doesn’t feel comfortable here with his walker/canes/wheelchair friends either.  Why?

If you ask Andrea, the brilliant director of this program, whom I believe is one of the smartest people I have ever encountered, she says it is my fault.  She says that I have not accepted Max and therefore he cannot accept himself.  I baby him too much, fail to toughen him up, do too much for him and let him wallow in self-pity.  I make excuses for his feelings and find reasons why he can’t do things.  I am responsible for him not feeling comfortable with the other children and I am to blame. The solution must come from me.

Is she right?  I look around at the other families, some of whom have children far far more disabled than Max and they really do seem ok.  They do seem to have acquired a peace of mind or a resolve that I have not.  I asked one of the moms here who has a daughter in Max’s group, if she really is ok.  That is as close to the conversation as I have ever been able to get.  She said, “Yes, I wish it were different, but I have really accepted the fact that “S” will never walk or be fully independent.  I said, “Really?” She said, “Maybe you need to go talk to someone…”

Clearly, everyone here thinks I am nuts.

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This entry was posted in Cerebral Palsy, Conductive Education, Disability, Disabled Children, Parenting and tagged , . Bookmark the permalink.

4 Responses to Did I do this?

  1. L.Weiss says:

    I am just dropping in to say hi. I appreciate you. Your love and un-ending commitment to your family is beautiful. “FAULT” ……..my prayer for you and for Max is that you find peace. I would love to find it too. I will keep looking. and…….I am sure you will too. When you have the time or desire I would love to talk. Miss you. Love you. Admire you.

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