Avery Grace

Avery Grace

Monday, August 3, 2015

August 2, 2015

Coping.  It's meaning differs from person to person and can look as different as each of the experiences we face.  I've been told a time or two that I "cope well." Wait. What?  I beg to differ.  I once had a professor in grad school tell me I needed to quit my full time job and focus on school work only because when I had too many balls in the air, I couldn’t “cope.”  I thought I was overwhelmed then.  If only I knew.

If I am being truthful, I am not sure I cope at all some days, as I find myself mechanically going through the motions.  But maybe, from the outside looking in, it appears at times that I cope well. But all of us simply move forward with the cards we were dealt. Don’t we?  If coping means I seek out help for my kids and their needs, then I guess I cope well.  But day in and day out I can’t shake the underlying stress of it all.  So after years of “coping” I can tell you one thing for sure: some things we never "get over."  Try as we might to not let them take over and define us, they most certainly change us.  Some days I think I may be even better for it, and others I am certainly more bitter. 

I will never get over losing a part of Avery to Rett Syndrome.  Rett took my social, babbling, verbal, eager to connect baby girl and changed her forever.  Our DAILY, even hourly lives, are now so drastically different than we thought they would be when she was a healthy, happy, social, engaged baby girl.  I can't get over it.  I deal, I even "cope" if you will, but I am forever changed.  Forever heartbroken.  Forever grieving.  Even 7 years after her big regression.  Some of those feelings are as raw as they were as I watched her drift away.  I am also capable, most days, thank God, to choose gratitude and joy over sadness and fear, but it is a constant internal battle for me.  And then there is Paxton.

I had a doctor say to me last week regarding Paxton, "well, I guess he wouldn't be one of your kids if he didn't have issues."  Awesome.  Thanks.  My children bring with them, like all of yours, a unique set of challenges and strengths, but some days I am oh so tired of being strong. 

Paxton, at 18 months, is on the brink of either making drastic progress and demonstrating that he may indeed have a chance at a somewhat “typical” childhood, or he may not.  The road less traveled for most of you is a road I am all too familiar with.  A road, or shall I say, a childhood, with several therapy appointments a week, a road where battling insurance companies and waiting on approvals is part of the journey, a road that requires spending every last dime and then some to ensure that your child is getting what he/she needs just to be the best that they can be- just to maintain skills, and maybe, hopefully, gain some.  I’m up for the fight, but admittedly, I don’t want to do it again.  I don’t want my child(ren) to have to work so very hard to learn simple, basic life skills.  I want their days to be filled with playdates, homework and sports, not therapies, diapers and evaluations.  But here we stand- waiting to see which way it will go for our beloved son. 

By this age, we knew with our middle girls that they were on target.  That autism and disability weren’t part of their personal struggles.  Kaylin has ADHD and some social issues, and even Presley has a dx of a connective tissue disorder called Ehlers Danlos Syndrome- but their intellectual functioning is on track.  And in most ways on most days, they are the least of my worries.  After all, they can understand what we say and speak their minds.  And they do so all the time.  Heck- lets be honest, the fact they can wipe their own bottoms and feed themselves makes them super easy in our house.

So sometimes it looks like Bryan and I are “coping.”  Other times we are ridden with anxiety and are a down right mess, eating to much and indulging in a little more wine than we need, but I guess  it’s all in the eye of the beholder and the perspective of the observer.  Having an army of therapists, teachers, social workers and more is an extraordinary blessing, but it also makes us open targets for judgment, endless opinions of others, and occasionally, shame.  Most people’s lives aren’t on display for well meaning professionals to critique.  I make lots of mistakes.  Every. Single. Day.  But we have to get up and keep trying.  Using whatever coping tools we have to move forward, and march on.  I hope and pray my kids emerge from their childhood journey as positive, courageous, hard working, happy, and grateful people.  For my two with special needs I would say I wish the same thing, but my wishes for them are far more profound.  I wouldn’t wish this pain and worry on my worst enemy, but thankfully, amidst the sorrow arises more joy than I ever imagined, and deeper love, appreciation, faith, grace, joy and hope than I would ever be able to comprehend if my circumstances were different.  I am learning day in and day out how to proceed.  I am lucky to have support and resources to keep me from drowning.  I am weary.  I am fearful.  But I am strong.  Call it coping, or whatever.  I call it moving forward, living in the present, and starting each day anew with knowledge, tolerance, perspective and courage.   


Stuart.graham@cbre.com said...

Beautifully rendered.

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