A Letter to Max

As I have been known to do, I like to lecture.  I like people to sit still and listen to me talk. I actually get paid to do this!  The only people who don’t sit still and listen to me talk live with  me!  I have been trying to get Max to sit and listen to me tell him how proud I am of him, but his eyes glass over and he changes the subject and I am suddenly reminded of my beloved Hun.   So, for lack of an audience, here goes:

Dear Max:

You didn’t really want to come here and you haven’t made a secret of the fact that, “This ain’t no camp!” You really miss home and your friends and you don’t like being away from Daddy.  However, you get up each morning and you face a day of 6 hours of so much work on your body that most of us would have given up long ago.  You have pushed yourself despite aching muscles, tight braces and tasks that most of us find easy but plague you nonetheless ( tying shoes…) You are willing to tolerate the “CP Tune-Up” I give you here each year that includes new braces, newfangled socks, different canes, different walkers, and this past year two surgeries and several rounds of painful casting. You think we torture you and while I suppose it might look like that (to most people) you have to trust that we do it out of an enormous amount of love and undying hope for an easier future.

Unfortunately, there has been a by-product of this type of intensity.  Being surrounded by so much CP, you have expressed concern and confusion.  You shared with me that you feel both guilt and fear.  Some of the children here will never do the things you can do.  You are afraid that you might become that too.  I have tried to assure you that you are still on your way up, up, up, but fear of loss is part of your life too and all I can recommend for you is courage and patience.  If I had enough to spare, I would surely share.  The guilt is new.  You feel bad for the others who cannot do what you can do.   I would never have imagined this if I didn’t hear it in your whispers.  You said that you have challenges, but others have greater ones.   I can only wonder how you, of all people, have such empathy while I, the appointed parent, still struggle with finding joy and acceptance.

We have spent so much time working on and talking about your disability, that I know you might think it is the only thing that matters about you.  I often fear that we have made it so as much of our life is spent accommodating it, fixing it, paying for it and worrying about it.   I have attributed it to the fast and furious approach to intervention and what I thought was good parenting.  I don’t regret anything we have done, but I vow to try harder, a recurring theme here, to take advice so oddly given to me by the Smurfs movie.  After the five (!) times we watched it this past week, the main character wonders why Smurfs are named after a personality trait (Clumsy, Gutsy, Brainy…you get the point) and opines that it doesn’t make sense since we are all much more than just one thing!

If I were a Smurf, I  might be named, “Worry,” or ” Crazy,” but if you were a Smurf, you certainly would not be “CP Smurf.”  You are so much more than your legs or your walking.  You are often more than we can contain and I promise to remember this from today on.

Thank you for being such good company this summer and for trying so hard.  I hope you find the courage and patience you need and hold on to your kindness and empathy for ever more.

All the love in the world,


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