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Max's Story
"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...
Every once in a while I have to remind myself that not everyone knows or remembers the reasons why Maxwell is the way he is...well, besides his stubborn streak, (definitely his father's gift), and his winsome good looks, (most definitely his mother's contribution), but rather his atypical journey through life with the most challenging chapters ahead.
Maxwell was born as a well-baby after what seemed an uneventful pregnancy, the second of what would be three children. The pleasant breezes of contentment and hope that blow in the wake of a baby's birth lasted only a few precious hours before the hurricane arrived and swept away everything that I recognized. Maxwell was diagnosed with congenital CMV. CMV is short for cytomegalovirus, and while I had never heard of it nor had my ObGyn warned me about it, I have since learned that it is the most common cause of birth defects and childhood disabilities in the USA. Max had sustained brain injuries that left him profoundly deaf, blind, developmentally delayed and with cerebral palsy. To say that this research-crazy, hyper-responsible, well-informed mom was stunned is an understatement. I felt like I had been hit by a bus. Why hadn't I known about this and how did it happen?
Well, turns out that lots of people know about this nasty virus, they just don't happen to be the ones taking care of pregnant women. To make a long story short, I likely contracted the virus early in my pregnancy with Max, (I remember being ill for about three days in my 11th week, for which my Dr. at the time prescribed a sinus decongestant), and I contracted it from someone I love. CMV is passed from mother to unborn child, especially but not exclusively if the mom has never been exposed to the virus before. You catch CMV through the transfer of bodily fluids like urine and saliva...and what mom doesn't change a diaper and occasionally forget to wash her hands or share her toddler's food in an effort to get her to eat? Toddlers in day-care are quite prone to this and other viral infections. Their immune systems being fully intact, unlike a growing fetus, are able to fight off the offending viral invaders with no lasting effects.
In all fairness to the ObGyns out there, CMV is unfortunately not on the list of things to test newborns for after birth. Children that are infected with the virus and suffer disabilites such as deafness, microcephaly, seizures, and cerebral palsy are not identified until the mom is out of the care of the OB. It is the pediatricians that get the case when the children fail to meet milestones and then have to work backwards to the cause, which at that point is hard to identify, as CMV is difficult to pinpoint after the body's immune system has a chance to "catch-up"...however the damage has already been done.
So, that ravaged landscape that I was staring at after Max was born, the one that was my future, my happiness, my family, and my expectations, my son...it turns out that not everything was swept away like I had thought, but it had certainly been rearranged and like a collage that you never glue down, it continues to shift over time. Perhaps it is because I never liked to glue down my collages anyway that I see the color and light in all those aspects of life again. It is too easy to imagine that the grass is really greener on the other side. We've all been there and it never is...!
In the meantime, I do harbor a smoldering fire for what feels like revenge, (if you can feel this way about a germ), when it comes to this virus called CMV. It is very preventable. If you are reading this and you know a woman that is thinking of becoming pregnant or newly pregnant, inform her...get the facts...and WASH YOUR HANDS! Visit the website: stopcmv.org and keep another child from the statistics sheet. STOP CMV!
- Shared by his mother, Jennifer