July 22, 2013

There is Joy

Hanging on my wall, surrounded by a large old, battered, dinged up picture frame that has seen better days [kind of like me] is the quote, "There is Joy in EVERY sound, when there is Love at Home."
In our home, we have lots of sounds.  We have your typical laughter and giggles that abound.  We have the sound of pianos being practiced and squeaky scales on the violin and cello.  We have an abundance of "I love you's" that frequently come out of the children's lips (for which I am so grateful that those words flow so freely), we have the obnoxious music of a video game, we have the sound of squabbles mid-resolution, the sound of dishwasher and dryer that are always running, the sound of a vacuum that is not running enough.  Then we have other sounds.  In our home we call them Special sounds.  Lots of times those sounds resemble screaming.  They are Bridger sounds.  They are screams for happiness and excitement, screams for frustration, screams just to feel the extent of his vocal chords that he previously did not have power to produce many sounds with. 
Those that are near Bridger may be a little uncomfortable by those sounds sometimes.  I have to admit, sometimes those sounds are too much for me too.  People that see Bridger sometimes only see this cute little boy in a wheelchair and have no clue what there is to him beyond that.  Beyond the facade of the chair are some medical complexities that have yet to be fully understood.  One of those includes behavior.  During a particularly challenging period, Bridger would scream and scream for hours at a time, which went on for weeks at a time and then into months at a time.  Not the happy screaming.  He was frustrated and he was having severe side effects to medication to control his seizures.  It was an extremely difficult time being a stay at home mom by his side 24/7.  Home was a difficult place.  It was a place of stress -- full of his screaming and full of therapeutic equipment everywhere I turned.  Bridger would wake up for the day between 1:00-3:00am every day and would scream if you didn't come to him.  We were surviving on just a few hours of sleep a night for a months (which, unfortunately, is not an uncommon sleep pattern for us.)
One Sunday afternoon in particular, I just had to get away.  Not far, I just needed to step outside of the house for a moment and breathe.  I thought I would stop by a friend's house and visit to clear my head.  During the course of my short visit I was sitting at her computer pulling up a website to show her with my back to her when her husband came into where we were and asked why the family card game they were going to play hadn't started.  She made all sorts of gestures and eye stares and head nods gesturing at me and at the door.  Without say a word, her message she was secretly gesturing to her husband was crystal clear.  What she didn't realize as my back to her, was that the computer screen in front of me acted as a perfect mirror.  I saw it all.  I thanked them for the visit and immediately excused myself.  I have never dropped by their house again.  I returned to my screaming house.  I was so sad.  In my moment of desperate need and complete exhaustion, couldn't they just welcome me in their house for 15 minutes?  That experience taught me another amazing lesson. 
This journey is full of beautiful lessons which are learned both directly through Bridger and indirectly as well.  When I share of these lessons, it is not to solicit help or service on my behalf.  Quite the contrary, it is for the benefit of all of those that are in need of help around me.  There are very acute lessons in humanity that are flushed out because of my experiences that teach me how to serve and be a better help to families such as those around me -- or for that matter, anyone around me that is struggling with a long term challenge.  Everyone has the opportunity to interact with a family with a child with special needs.  Most women can think of a friend or acquaintance they have that has a child with special needs.  Some think that "help" has to come in the form of direct support to the special child.  Helping the caregiver IS helping the child.  In those critically challenging screaming months I sought help this one time, simple help I thought, which was just to escape to a comfortable place of peace and solace for 15 minutes before returning to my never ending burden and I was unwelcome.  Simple opportunities are all around us, it is not in the form of some magnificent three course meal we present to somebody, not necessarily in an entire day of watching a person's children . . . but I think more of those sustaining moments and instances that lift a burden and keep someone able to put one foot in front of the other can be performed in 15 minutes or less with very little effort on our part.
Our family has gotten accustomed to our special sounds - as evidenced by the experience of taking my boys out for ice cream the other day.  Bridger was full of sounds that he was sharing.  Everyone was staring.  The sounds became so loud that we had to leave.  As we were walking down the sidewalk back to our car, Lance astutely said with a chuckle, "I'm not sure what all those people were staring at - it is just every day life!"  I had a smile on my face and inside my heart.  Indeed it is.  Our life is full of all sorts of sounds, which I have now learned to deal with without having to seek refuge elsewhere. And I have come to fully believe, as have Alan and the others under this roof, that "There is Joy in Every Sound, when there is Love at Home." And I am so grateful there is.