The Realness Behind the Real



I have spent the past few months either care giving for my sick four year old, or being sick myself, and thus living in a continuum of burn out.  A multitude of house projects still left unchecked on my mental list of, "things a good housewife would do."  An overwhelming amount of money owed to doctors, thanks to drastic changes in health care that no longer directly support the medically complex children, leading to constant dreams where I'm drowning over and over and there's no one on the planet to rescue me.  Living in a constant fear of what medicines or treatments or hospitalizations we will have to discontinue because of exorbitant medical costs.  These are real issues with real emotions and no real answers for us parents of medically complex children.

 I have melded myself to several different facebook groups; Mommies of Special Needs Kids and the Noonan Syndrome Family and Mom's of Tubies type of groups.  But these lovely people behind keyboards are just that--behind keyboards. Not in my neighborhood!  Therefore most of us stand alone.   Living a paradox between brokenness we can't explain and joy beyond words,  We do not live a normal life.  We ARE each becoming different kinds of moms and dad and sisters and brothers because of someone or more than one someone in our family who themselves are different.  We love that someone with all the passion a parent has to offer, but with it comes the kind of pain no parent wants to endure.

 We are who we are because of our children with complex needs, but we are also on the outside trying to figure out how to get back in.

 There have been seasons in my life where I felt so alive because of what I could offer to others. Be it a prayer, encouragement, a wee bit of wisdom from common trials, a friend to the friendless or outcast. I felt I was the ever-small voice that rubbed the dirt off their window just enough to help them find direction in their darkness.  This is not that season--and I miss it, dearly.

 Lately I have noticed a lot of posts about depression and anxiety from those who themselves are caught in its grasp.  Those posts are a plea to help the rest of us get a glimpse of their world through their eyes, and choose to love them and be a part of their lives regardless of a diagnosis, a good day or a bad day.  I applaud those posts.

 This is not a plea, but a lure out to those who understand the complexities of complex children, and loving and care giving, and the good, the bad, and the ugly!  And a shout out to say, "Hey, talk to each other.  Write to each other.  Be real to each other.  Pray for each other.

If you have a real life story behind the story write me at hjc7777@charter.net

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