Wednesday, February 28, 2018

A Glimpse of World's Apart

In the past, I have written about the importance of having margin in our lives.  It is so much easier said than done.  I know this is a struggle in all families but it is amplified in a special needs family.
My life consist of driving from one doctor's/ therapist/ case worker's appointment to the next; managing one crisis to the next.  I joked with my therapist that one week I was going to show up to my therapy appointment without a single emergency or crisis from the week before to report.  She literally laughed and said "Yeah, that's not going to happen".  We had a similar experience at church.  Here is a portion of what my husband wrote about it "one of the songs in church this weekend said something about God setting order to the chaos in your life. I burst out laughing, right out loud before clamping my hand over my mouth.. more because of the insanity that is Skiffdom than theology...." Usarian Skiff 2018
I wish our experience was unique to us, that going through life bouncing from one crisis was confined to the four walls of our home.  Though it feels that way at times, the truth is that we are not the only family that is balancing the tight rope between sanity and hospitalization or one paycheck away from financial disaster.  In today's society, we all live life without much margin, running constantly at full steam, praying that our family's train is able to make it around the next bend with out derailing.  The difference in our family, and in most special needs families, is that our trains don't run at full speed, they are always at turbo speed.  We have to keep the engine's of our lives in overdrive, pushed beyond what they were ever designed to do. This leads to more maintenance needs and no time or resources to do said maintenance.  When things start breaking down we are in  another crisis, one that many of you would say could have been avoided had we just......(insert advice we already know here).   However, we were stretched so thin dealing with the prior emergency that there was literally no way, time or money,  to do blah, blah, blah (no matter how small a deal it may look like to those of you standing on the outside looking in at our chaos). So we are judged for not being able to handle the small things that are now big things.
  Our friends and families become overwhelmed just hearing about our lives, so they stop asking. Or  they continue to ask and then become so overwhelmed by what we say, we know that by sharing even a small part of our world, we have become a burden. We know they love us and want to help fix the issues.  But our problems are too big to be fixed by us and they are too big to be fixed by those who love us.  The advice they lovingly give, we have already tried many times.  So we stop answering  when they ask because we hate always being a burden.  Also, we don't have the emotional energy to handle their feelings on top of our own. We have also lost the ability to once again, tactfully say their advice isn't helping ; we don't want to hurt their feelings. 
This life is isolating by it's very nature.  We are always on the go; balancing doctors, therapy, education, more doctors, more therapy.  After that, there are still the regular life things  like homework, school activities, cleaning, cooking, and paying bills, to handle.
 There is never extra money to do the fun things that friends and family want to do.  We know that someone would offer to cover us financially, once again.  But it is hard to always be the taker, always be the one in need.   On the rare occasion that we have the time and money to hang out there is the issue of finding child care, which for special needs kids is not as easy as calling the teenage girl  down the street . Heck my kids are the same age as she is or older anyway. So we just say no to the invitations and after a while we stop being invited at all.
Our lives are lived in space that cannot be comprehended by most.  If we lived life off the grid or in the shadows of society, people would at least have a point of reference.  Instead our lives happen parallel to theirs, similar enough that they think they can understand until they look closer and realize ours is an entirely different world; a different dimension that somehow broke into their reality and set up house in their neighborhood.
We long for connection, to break free of this loneliness so we try to enter their world.  We attempt to go to their churches, shop at their stores, attend their PTA meetings. But it never lasts long.  Their churches are too loud for those with sensory issues, our kids are too old for kids church but too young mentally for youth group. Shopping trips become nightmarish outings of meltdowns and judgementalism. PTA meetings have no place for our kids and they don't address the issues are kids are facing anyway. So we go back to our little worlds until the loneliness drives us out to try to connect once more, knowing the results will be the same.
We come across the occasional fellow traveler, whose world is like ours so there is understanding.  But like us, their train is plowing through life on overdrive, so there is limited time and resources for  more than the occasional meet up.  We find relationships online, our friends become global, and our interactions become a series of 0's and 1's flying across the web. These relationships are real, they are important, but they lack the personal contact that we all need and crave.  It's hard to grab coffee on a whim when you are separated by oceans and continents.
This is what it is to live in our words.  These are the truths we don't share for fear that we will offend, overwhelm or burden most of our loved ones.  Even the things we rejoice in often have an underlying sadness for those we love.  When I become ecstatic that my son remembered to shower and wear clean clothes on his own, they remember how old he is and know this shouldn't be something I'm still having to deal with.  They try to be excited with me but their grief for what could/ should be still comes through.  I however stopped grieving what could be a long time ago. I truly do celebrate what is, even if it is 10 years later than when most people experience it.
When we stop answering texts or messages, we aren't pulling away because we don't trust  or don't love them.  It's just that our world's don't match up anymore. We want to bring more to our relationships than the need for pity, judgement or grief.  Honestly, we also want more from our relationships than those things.  We long for relationships where we all can be real and equal.  It is a real conversation ender when a friend share's the struggles they are facing with finding a good coach for their son's sport of choice; then they ask you what's going on with your child.  I tell them how things are much better and leave it at that.  Being a good friend, they press for details.  I share that his behaviors are more under control since the doctors changed his meds during his last hospitalization.  Then there is an awkward silence. Their struggle is as real as mine.  Their worries about their son getting the right coach so that he can get the right scholarship, for the right college,  are not less valid or concerning than what I am facing with my son.  They are just very different.  Our world's don't align.  We live a life that has no margins; it doesn't even use paper most of the time. Their life stays at least on the page, if not within the lines.
I'm not sure why I'm writing this today, it is more stream of consciousness than my usual post.   guess the rain and our current set of crises have made me a bit melancholy and reflective.  AS always, thank you for reading. ~ Kristine

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