Friday, January 2, 2009
The pasta water is boiling over, two of my daughters are deconstructing my family room, my baby is crawling around eating lint and petrified crumbs off the floor, everyone is in various stages of half-nakedness, and I have less than an hour to get the this miniature army dressed, fed, and loaded into the minivan for a 5:30 soccer practice. In the midst of utter chaos, everything comes screeching to a halt when my 4 year old rounds the corner and shouts passionately “Mom! Come quick! Look what CB did!”
She is referring to my 13 year old daughter, the eldest of my small Girl Scout troop. My blue eyed, freckled face girl with lanky limbs and a gawky grace. I long to say her name without the laundry list of disabilities that follows; severe to profound cognitive, social, language, neurological, sensory, and physical delays. Though a teen in years and stature, her developmental age hovers at around 10 to 18 months. Right now, she is Suspect Number One in some type of drama that has just unfolded. There are any number of things that Carlie could be up to, but there is one in particular I dread more than most.
As I round the corner into our family room, my olfactory senses are already firing neurons to my frazzled brain. My fears are confirmed. CB wears a diaper as she is not toilet trained, and when certain bodily functions take place there is a creative use of brown finger paint of the truly organic variety. I see instantly that both she and her surroundings are covered with the very thing that just hit the fan. At this point, I’m ashamed to admit that I just lose it.
Though my rational, “good parent” side knows I should handle this calmly, my emotional side stages a quick and painless coup and I’m in a tirade, slamming things around, half in tears. I begin to organize the tools I need for hazmat clean up while simultaneously contending with an oblivious and very soiled teenager and a peanut gallery of curious and loud little munchkins. As I’m venting my frustration, screaming at no one and everyone all at once, I slowly become more and more aware of my tiny bystanders. The three malleable psyches who are, on a daily basis, processing what life means growing up with a sister who is “different.” They look toward me as their barometer, their sign post. Right now, I realize, I’m not pointing them in the right direction. This cognition grounds me with an anchor of shame.
Along with the myriad of anxieties about CB’s life, health, and future are the unyielding pressures I feel to minimize any negative impact of her special challenges on my three “typical” children. They will only be blessed by sharing their life with a special sister if they see it that way, and I have been saddled with this responsibility. I know that the examples I set and the lessons I show them through my attitudes and actions are going to help shape their perception of individuals with special needs. Will they see their sister and others like her as a burden on a family and society? An embarrassment? A joy? An inspiration? People with rights and feelings? I’m keenly aware that such attitudes trickle down from me, the parental figure, to these little impressionable minds long before other societal influences are added to the mix.
Of course, I also become protective of CB. I want so much for her sisters to love her, though the severity of her Autism prevents them from seeing any evidence that she is emotionally connected to them at all. I want them to continue a relationship with her after her father and I are gone, chosen by them not because of burden but because of love.
I’m deep in these thoughts while my body is on autopilot; carefully cleaning my teenage daughter as I would a brand new infant. The surge of anger, stress and unjustness are giving way to softer and familiar feelings of compassion, acceptance and the weight of my responsibility. I scan the room for my other children whom I banished. The baby is of course crying hysterically at being trapped in her playpen, and my 2 year old has found a book which is occupying her attention nicely. My 4 year old is deeply engrossed in a drawing at the table.
After everything is cleaned and the sizzling in my brain has stopped, I try to figure out what I’m going to say to my 4 year old, Pink, who has been the most cognizant of the situation. I owe apologies and explanations at varying levels all around. Before I get the chance, Pink looks up from her artistic masterpiece as I approach her. “Mom, can you write something on this for me?” “Sure baby” I say, picking Sage Green out of the crayon box. “This is a card for CB” she says, as I stare at her delicate profile. She dictates and I print in waxy letters: “CB. We still love you really, really much.” Out of the mouths of babes.
It does not matter that I’m at a loss for words because I have a golf ball in my throat. In a few minutes, I’ll hang her homemade card up on the refrigerator where it will remain for years as a reminder, as a promise, as a touchstone. In a few minutes, life will be infused once again with the uncertainty of what the future holds. But, right now, everything is beautiful. Right now, all I need to do is explain to a perplexed little 4 year old why her Mommy is laughing and crying at the same time.