The whole truth

I can’t write anymore.  I have not been able to produce a single word of original thought for months. I started to read the blogs of a few other people I admire and enjoy and every since I cannot get a word out.  Those 3 sentences were torture.  I am forcing myself to write at this very moment because I need to get my thoughts on paper ( so to speak.)

A boy Max plays with all the time, was in our backyard and  walked off with Max’s walker and all the while saying,” Hey, look at me, I am Max and I can’t walk…. ha, ha, ha. I  am Max and I can’t walk”   Let me tell you, he was the only one laughing.

At the pool, none of the kids who call themselves Max’s friends would stand still long enough for him to even say hello.  One even took his toys and ran off with them to play with other kids.  It is the beginning of what I suspect will be a very very very long summer… for Max and for me.

He is old enough to notice and hear.  Hun was saying last night that they are just kids and they don’t really know what they are doing. That may to be true to some extent; however, Max is also just a kid and he damn well knows what they are doing.  If they are all so young as to be unaware of their behavior, then Max would be unaware too. He is not.  They know what they are doing and while I really don’t have a good answer for what I expect them to be doing, I can still complain about it anyway.  It’s my blog.

Do I want things to be different?  Yes! There, is that so hard to say?  I don’t have to sit on the grass watching my child be unhappy and pretend it doesn’t matter.  I don’t want to see parents gloss over the fact that their kids are being cruel and ignoring a friend.  Sure, its great to be Max’s friend when he is the hit of the parade or when he is on TV and when it’s cool to be Max’s friend because it makes you seem “accepting.”  What about the rest of time?

What about the rest of time?  It is the rest of the time almost all the time.  Do I want to change the world? Do I expect everyone to be perfect? Do I expect kids to want to play with Max when he can’t run around with them?  What if I say, yes?  What happens if I say yes to all those question? Do I get struck by lightening? Is it wrong for a mother of a child with CP to wish things were different? What do you think?

I don’t know what to think?  I have spent the last year, a full entire year, consumed by  a very great amounts of stress.  So much stress that I don’t really know what is normal anymore. My mother’s injuries and the results have taken me to the pit of despair  and I have lost touch with almost all of my friends, all of my activities except those that I was elected to perform,  everyone in my family and myself.  I am not equipped to handle the emotional work that awaits us at the pool this summer.  I am just not up to it this year.

Yes, I am actually complaining that going to the POOL is too hard and making me sad.

4 Responses so far.

  1. longtime friend says:

    Normal is overrated. And you can’t get rid of me that easily.

  2. DeAnn says:

    No. It’s not wrong to wish things were different. While I’m grateful for what I consider to be a great life, every time I watch Aidan struggle with something “normal” kids do without even thinking about it, I can’t help but wish things were different.

    • wearingcostumes says:

      Thank you DeAnn – yes, “normal” things are not so normal when they require years of effort, hours of therapy and seemingly hundreds of professionals… Keep living your great life nevertheless.

  3. Stacy says:

    This post brought so many of my our thought and emotions to the surface! You could have been writing about my Max. I’d love to say …”It gets beterr as they get older” but, sadly-it doesn’t! We just have to stay strong and be grateful that our sons are beautiful souls and because of their trials and errors will grow up to be strong, caring men.

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