"I Don't Know How You Do It."

Life shrinks or expands in proportion to one's courage.  Anais Nin



I get this quite often: "I don't know how you do it." 

It always stuns me because I don't think I'm doing anything remarkable and I certainly know of many parents facing much bigger challenges than I.  I am very lucky to have a daughter who is ambulatory and not suffering with intensive medical needs. None of my children have become angels or disappeared into the night.  These situations are incomprehensible to me, and define "a difficult life" much more so than mine.  Mine has a few little challenges beyond the "typical"...whatever "typical" is.  Non-autistic, non-disabled, non-psychiatrically or emotionally impaired, non-drug addicted children I guess would constitute "typical."  That leaves a small percentage of the population being categorized as the "normal American family" I suppose. Peel back the layers of most anyone's life, and you'll see more than meets the eye.  However, it's also true that some are dealt more difficult hands than others.  Sometimes life plain ole isn't fair, but I don't put myself in that category.  We've come this far relatively unscathed, though certainly with a few extra hurdles to leap and heart aches to bear. 

The life you pictured in your head at twelve, or even 20, sometimes doesn't turn out as planned or dreamed.  Did Stephanie Neilson imagine that in her 20s she'd be severely burned in a plane crash?   Did Claire picture her perfectly typical daughter having a stroke in young childhood and becoming severely disabled for the rest of her life? Did author Vicki Forman think she'd give birth to premature twins and would watch one die days after birth, and care for the other, with severe disabilities, for over a decade until he too succumbed? Did any of us dream of an adult life that included divorce, cancer, infertility, the death of a spouse in the World Trade tower, being orphaned before age 25, a fluke accident that kills our child? Yet these things happen, to the nice and the not so nice, the rich and the poor, the faithful and faithless.  "Garden-variety life" is full  of challenges, aches, pains, ups and downs, illnesses, stressors and strains in its own right.  Even at its very best, there are things about adulthood and  parenthood that are exhausting. Add any type of chronic element outside of the norm, and it's not just a juggling act, it's juggling while balanced on a high wire with no net, and you're juggling a sword, live viper, a bowling ball and a feather.



"I don't know how you do it."  There are days that statement makes me laugh.  I know many people with 4 kids and crazy lives and I don't see how I'm any different than they are.   Then there are days where I think "I don't know how I do it either."  There are even moments when I am shamefully jealous of people who have a great deal of family support that I lack and yet are so overwhelmed by what I view as normal parenting situations and (what I consider) run-of-the-mill life. I especially felt this jealousy back in the early years as a new mother to a child with severe seizures and budding developmental disabilities.  As a young mother completing a doctorate degree in the midst of her child being diagnosed with Autism and Cognitive Impairments at age 2. As a single mother juggling work, dissertation research, a marriage breaking up, and a disabled child with no money, few friends, and a smaller dosage of family support than I both needed and craved.  I went through much of my toughest and darkest times alone. Though it was difficult and isolating and so lonely it hurt, I can feel proud that I swam when I should have sank like a stone.  I learned to breathe the water.  I learned to rely on no one but myself and though I faltered often, I ultimately did the things I never thought I could do. I not only survived, I made my life resemble more of what I always thought it would be.

Even with life's little surprises and unexpected plot twists, I've never wished for a different life or lamented over what could have been.  I've never asked "Why Me?" because as far as I'm concerned: "Why NOT me?" What makes me so significant and special that nothing 'bad' should ever happen?  Plus, the things my eldest daughter has going on are neither "bad" nor "tragic." True, her autism and severe cognitive impairments can be stressful and less than ideal, but all in all we've made out pretty darn well in life.  She's happy. I'm happy. We're all happy. Whoever thought life was easy believed a big fat lie. I'm just grateful for all life has given us. 



So how do I, and tens of thousands of others that walk similar (and more stressful) paths, do it?  There's no special gene or formula.   Upon autopsy you won't find that we're anything more than human beings with a heart and a will and a bit of old fashioned courage. When people are stretched beyond their limit, they don't break.  They may bleed, they may weep and beg for mercy.  But short of the finality of death, the human spirit can only be broken by the one who owns it.

Life shrinks and expands in proportion to one's courage.  Courage is seldom deliberate. More often, the opportunity to access courage occurs when life forces it upon you, you have no other option, and you feel anything but brave.  But when courage shoves you, reluctantly, beyond the precipice of "all you can handle" and you sail over the cliff of " this is too much to bear," you find something inside you that is not bestowed and cannot be taken away. It is the thing that expands your life and your world beyond anything imagined.  Good, bad, or indifferent.  It's the real living of life.  The root of integrity. The marrow of soul.  Through these experiences, your soul richens, you spirit strengthens, your gratitude cannot be contained.

The only shame is that it takes such unexpected and difficult life experiences to test our limits, stretch our boundaries, gather up our courage, and challenge ourselves to live in the world believing we can do that which we think we cannot.  To live beyond our self-imposed boundaries.

When life throws us to be pummeled by the waves, there is an opportunity to swim beyond their pounding break and reach the calm expanse of all that has been unexplored. Because sometimes, if left unruffled by the fates, we can shrink to fit on a grain of sand watching as the ocean stretches out before us, in its endless pursuit of the horizon.