Is that my heart on the floor?

I usually like to color my writing with witty descriptions and long- winded pontificating – but this one will likely stand-alone.  The following things have been said by Max during the course of this past week.  I wanted to document them so that I can remember  – and never forget.   I think that we are given tests in life – and some we recognize and some we don’t.  I have no idea what happens when the tests are over- whether there is a grade given, a pass or fail, a move on to the next level decision – for how would we ever know? 

“Mommy, mommy, mommy – I am so upset, I feel weird, I don’t feel like myself.”

“You have to help me, I don’t know what to do – I can’t get my body to do anything I want it to do.”

“It’s not fair that I can’t do everything that everyone else does.” 

“Everyone else can walk and I can’t – that’s not fair.”

“You can’t help me because you don’t know what it is like to be me.”

“I am so embarrassed when I crawl and everyone else is walking.”

 “Why do I have a disability?  No one else  in our family has one.  I hate having a disability.”

“You know that I just look happy, I am pretending to be happy, I am not happy.”

“I miss you too much when I am at school because no one plays with me at recess – all my friends go out to play on the field and I am not allowed to go on the field because it takes me too long to come back.”

“No one plays with me because they run away when I am talking to them.”

 “Will I ever not have a disability?”

This has been a long week for Max – he had his Botox surgery and then he had pain and discomfort and then he got casts put on both his legs.  His teacher, whom he loves, was out sick all week, and he has a new personal aide that he just met last week.  He is trying so hard to keep it together and go to school each day and do what he needs to do.  His face is pale as a ghost and he has dark purple circles under his eyes …and … if you think that is bad, you should see me! 

I responded to each and every one of those statements with whatever I thought was appropriate at the moment- I tried to explain it all to him, give him some comfort and keep him looking toward the future.  But, I don’t really understand it myself.  I think it’s not fair too and that most of the time I am pretending too.

All along, I just keep reminding him how much he is loved by so many people and that love will really save the day.

I have to believe that – I have to believe that with enough love, he will be ok.  I cannot take away his CP and I cannot even begin to explain the injustice of it all – but I can love him to pieces and hope with all of my heart that it will be enough.

2 Responses so far.

  1. Steven Harad says:


    Tell him to never quit. Unfortunately, I can no longer run, ride, stand (sometimes I fall) and lots of other things. And he is right, sometimes life isn’t fair! I’d love to take him to a triathlon where I help kids and adults who are missing limbs, have CP, and other issues so he can see what is possible.

    I just got done a race with a Navy Seal who is paralyzed from the chests down who completed a triathlon. Jeff is my hero and he would give your kid hell if he ever quits!

    Tell your son life isn’t always fair but to keep pushing. Do what he can, not what others can.

    OK, done my pep talk. And as his mom, don’t you quit either! He needs someone pushing him along.

    Take care and yell if you want to introduce him to some of the very cool people I know.

    • wearingcostumes says:

      Steve – thank you so much for your thoughtful words. I would love to hear more about you and your work and the people you know. Please share the blog with anyone you think might be interested and I will get in touch with you by email… All the best, Sheri

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