Sunday, August 7, 2011

08.05.11- Being Max

Maxwell is a determined, four year old little boy that appropriately enough bothers his sisters during their games of "let's pretend we're horses" and "I'll be the mommy". He is also very good at keeping his mother, (me), busy. House rules get broken, especially the one that indicates that the expensive leather living room couch is not a piece of circus equipment. (At least it is leather and therefore durable.) And of course, Max like most four year old children, likes to have things his way and will successfully manipulate any worthy adult within his immediate vicinity to get what he wants. You can't hide from Max, at least not anymore...and that is where this starts to get interesting.
What is it like to be Maxwell? I've been curious about this since he was just a few days old and staring blankly back at my face which in all likelihood was a contorted picture of confusion and grief. No fun for a newborn or anyone else for that matter. Sitting in the intensive care unit in the hours after he was born, I listened to a doctor's voice that seemed to be coming to me through a thick fog. They had a diagnosis. In the end it didn't mean much compared to the MRI pictures of Max's tiny newborn brain which, even to my untrained eye, didn't look the way it was supposed to... These were dark days. The days bled into weeks and the weeks into months, the act of coping stealing most of my conscious thought. The black clouds seemed to hang heaviest over my head in the beginning as I struggled with the powerful maternal instinct to nurture my tiny infant and the dry, painful knowledge that I was only sealing my fate as the parent of a special needs child. I was a mess. Maxwell was fine.
Max is deaf. Max is blind. Max has cerebral palsy. He doesn't worry about debt-ceiling debates or even watch the television. He doesn't believe in God or fear Mother Nature. He belly-laughs at his own jokes. He is patient with the way the wind feels on his face and the softness of a sheepskin under his fingertips. He is inspired to move his body in a way that pleases himself without any self-depricating thoughts of shame or embarrassment. He never diets. Max seeks out the sun and bathes like a cat in the mid-afternoon, soaking up the warm feelings and seemingly storing it away for later use.
Granted, it's not always so zen. Max's limbs don't always follow their marching orders, often leaving him frustrated and angry with a goal unmet. Expressing himself with regards to feelings and objects and people that he recognizes but cannot name must be unknowably maddening. But, like a soldier-philosopher he'll usually change the goal and carry on. The world he lives in can be unpredictable and surprising with unforseen touching hands, unexpected and intrusive objects, offensive smells and unpleasant tastes, all of which are disorienting and threaten the safety of what is thethering him to this universe - that which is familiar and according to his own rules. Max is indeed simultaneously the king of his universe and yet like a leaf on its breeze...


  1. Wow so fun to read about Max before and I knew him and after. I love the picture with the sun glasses. Can't wait to hear more! Thanks for sharing.

  2. Glad you did this! You, Christian, the girls, and Max amaze me. Somehow we all arise to, and more or less kick the ass, of the hands we are dealt. Miss you out here.

    And, I wanted to let you know, you and Max have prompted my first blog post ever :-)

    Xo Meghen

  3. Hi Jen!
    Met Christian on Saturday and found out about your blog, which I've just raced through, marvelling at your so glad to be able to read all that has and is happening, as i have only gotten intermittent updates from Sherman (!) over the years about all of you.

    Just have to say Jen, i think you (and your blog!) are absolutely fantastic...Max, Penelope and Flora are incredibly lucky to have you as their mum. When the girls are old enough to read these entries and the strength and humour that inform them, they are going to be sooo proud of you, no question.

    Looking forward to reading about more of your adventures with Max - and fingers crossed the latest procedure will help his legs.


  4. Wow watching the movies made me really miss MAX. What a lucky child he is to have such a family. Happy Holiday! Linda Myers