Avery Grace

Avery Grace

Monday, May 18, 2015

Fear, hope, and gratitude.



If I could only freeze time.  I live in two different universes.  One place I reside is a place of fear.  A worry so deep that it can, quite literally, take my breath away.  In the last hour alone, my Facebook timeline produced three articles that no one should ever have to read.  One reported on the possibility of sudden death in epilepsy, another about hydrocephalus shunt complications, and a third about autism drownings.  YUCK. I would rather spend all day looking at friends beach pictures with their totally typical, healthy kids building sandcastles while they sip on margaritas in their luxury beach chairs  (a reality that will likely NEVER be mine at a beach with my bunch.)  This fear is something I have to push out of my brain several times a day.  It can catch me off guard,   like last  Saturday night when I saw teenagers in their prom dresses posing for pics outside their homes in my neighborhood and I immediately grit my teeth and worry about my special kids entering the teenage years and what on earth that will look like.  When Avery is taller than me, yet still needs me to lift her and change her diapers, and meet her every basic need.  What if we can’t afford prom dresses for our other girls because of the many needs of their siblings?  What if, God forbid, something happens to me or Bryan... who will make sure Avery and Paxton are cared for, loved, adored, and sheltered from the horrors of institutionalization?  And if something happens to me, who on earth will do my girls’ hair?  :-)  I can be fine one minute, feeding Avery, wiping her mouth after a bite,  or changing her diaper- and I have a moment of panic, because who could ever possibly care for her as well as we do having loved her since birth?  I can’t describe how terrifying these gut-check moments can be.  But these moments are part of my reality.  They are part of the process of special needs parenting.

The other place I live is a place of hope.  Hope that someway, somehow, Bryan and I will figure out how to continue to provide the best we can for our kids.  Hope that Paxton doesn’t end up with an intellectual disability like his sister, and will be able to communicate his wishes, dreams, desires and ideas. Hope that he will one day walk, maybe even run. Hope that Avery stays as mild mannered and happy as she is today.  And that her health stays stable and her epilepsy controlled. Hope that the sacrifices Presley and Kaylin have to make don’t make them bitter, and hardened to the realities of their circumstances.  Hope that my marriage survives the extraordinary stress of special needs, and multiple medical issues.  Hope that as the days carry on, I will find a way to maintain some resemblance of balance in my life, and the financial and physical burdens and worries will one day ease. 

But neither place is a very wise place to reside.  While fear enables us to plan for the future, it otherwise is a waste of energy.  Because the future is never predictable.  Hope is almost equally as dangerous.  If we spend our days wishing for brighter ones, then we miss out of the beauty of the moment.  And the light illuminating the many blessings that already exist all around us. 

I’ve written over and over again about the process of learning to 'live in the moment.'  And I wholeheartedly believe in this ambitious endeavor.  But we have some pretty hard moments.  Moments of fecal smearing that would make a grown man cry, moments of gut wrenching news from doctors, screaming fits during therapies, moments of profound isolation and sadness, moments of sheer exhaustion after being up night after night after night for the last NINE years.  Thankfully, those moments are fleeting, and are surrounded by much lighter, easier, happier moments.  Moments where Avery reaches out to hold your hand or wraps her arm around your neck while smiling and laughing, moments where your 7 year old writes her first book about her disabled sister and how to include her and love her, moments when your motor delayed baby figures out a way to compensate, despite his muscle weakness, and move from point A to point B with a goofy grin all over his adorable face.  Moments when he says mama, over and over and over again... but I NEVER tire of hearing it for I have a child who once could say it and lost that skill.  Moments where your 4 year old tries with all of her might to connect to her biggest sister, and protects her baby brother.  Moments where your family or friends check in, just because they know you had a shitty day full of appointments and bad news.

Our days hold a thousand shining moments, and those are the ones I try to focus on.  The ones I remind myself in the hard moments to be grateful for.   To be grateful for a million different reasons.  Perspective is a beautiful thing.  Every single moment, good or bad, that I encounter, can be perceived any number of different ways.  We really can CHOOSE to be forgiving, easy going, happy, and most importantly, grateful.  Gratitude is the best and easiest way to navigate my world of special needs.  A world with many painful moments.  But that doesn’t mean I am not allowed to feel sad.  I own being sad.  I have a right to it, and I have moments that it can overcome me, and bring me to my knees. Thankfully, there is always gratitude to help me refocus.   Because it’s easy to recognize and realize how wonderful my life is, and how spectacular my children are, just as they are.  Today.  If only I could freeze it- because today I know I can do this. Today is all I am guaranteed, and I want to spend my moments, the good, bad and otherwise filled with grace, joy, hope, and peace.
*the latin translation of Pax is “peace.”*

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