Tuesday, March 26, 2013

I keep wondering when I'll get used to the smell of pee.  Stenchy stuff, that urine.  I recall going to visit my great grandma in the nursing home in Watertown when I was young.  The trip stands out to me for three main reasons:  1)  the drive from Monroe to Watertown was a long one, and not one we were able to afford to take very often.  2)  my mom had a very cool, very well-protected set of tiny pens, I believe there were four of them in a plastic case, and the only time I was able to use those pens was during church and when we went to Watertown.  (Smart woman, that mom of mine.)  3)  the overwhelming stench of urine that pummeled you at the door when you entered the home.  I will never forget it.  I used to think that smell was the "smell of the old."  As it turns out, it isn't limited to that.

For a special needs family, there are a myriad of issues to deal with.  I believe the hierarchy varies from time to time, but it mainly reads as such:  1)  health issues, 2) education issues, 3) sibling issues, 4) social/'going out in public' issues, 5) marital issues, 6) caregiver's personal health issues.  It is easy to see why most special families are suffering.  You are either mired in #1 for years, and barely get to dip your toe into numbers 2-6, or you keep ping-ponging back and forth between the six items and never feel grounded.  In our 15 years on this special ride, we have seen them all, but we mostly roll around in #1.

Certainly there are worse things to deal with than incontinence.  I have people make comments to that effect all the time.  And, they are right.  Unless you are the one dealing with the constant barrage of diapers and laundry that equals incontinence.  It doesn't sound that bad unless you are, literally, knee-deep in this shit.  Then, it takes on an other-wordly quality that basically consumes your home life.

First off, is the smell.  I have learned to hone my already keen sense of smell to actually ascertain today's bedsheet situation while still at my son's door.  One whiff, and I can tell you if we're dealing with a total wash situation, a fan-only situation, or a diaper full of stool coupled with urine situation.  I am rarely wrong.  The situation is perhaps intensified by the fact that he sleeps in a king sized bed.  This only makes the sheets larger and the laundry longer.  However, it is handy when he has teeth pulled or is very sick; we can easily lay next to him to observe him while being able to get up and leave without disrupting his sleep.

Next?  The laundry.  We are currently in a twice per day laundry situation.  We have a laundry emergency at 10 pm and 7 am every day.  There are a couple of things about that which truly suck.  First of all, the washer/dryer is getting one hell of a workout.  Not even counting his drooly laundry, let alone the rest of a 'normal' family's laundry to deal with.  Secondly, the sheets are getting a hell of a tumbling twice per day.  Even with the addition of a pad under where he sleeps, which catches most of the urine, we are still looking at washing the fitted sheet, the flat sheet, the under-pad, and usually his comforter/blanket.  The other issue is time.  You can't really leave the house when you are in a constant state of laundry.  Or, you can, but you are always behind when you return.  Perpetually behind.  (A good title for a book describing a "special" family.)

Then there's the aspect of how is this affecting his esteem?  I'm sure lying in urine is not a good feeling. I can't imagine.  I worry about this part of it, all the time.  How do we remedy this situation?  How does one put a positive spin on this?  How does one imagine a lifetime of this, for either him or us?

He does amazing things every day.  And for that, we are eternally grateful.  And could things be worse?  Boy howdy, could they.  We know many people who would quite literally kill to only have incontinence to complain about.  But, I have found that most people commiserate about their current situation, regardless of severity.  If the worst issue you face with your children is glasses or braces, that is still huge to you.  The same as if the worst issue you face is respirators or wheelchairs.  The feeling of failure as a parent and the constant state of worry that accompanies it doesn't know where it falls on the 'severity chart.'  It just is.  It's present, and all-consuming, and life-altering.

It brings me back to a time when I was young and fresh-faced and red-cheeked and ready to face the world.  I was going to make a difference!  I was going to be a great band director and an art teacher!  I was going to change lives every day!  The best laid plans seem to be folly on our part.  Plans are made to be broken; goals are made to be squashed.  I have heard people say, "We make plans, and God laughs."  I prefer to think of it as, "We make plans, and the universe says, to hell with that."  The best we can do is face each day with our steel armor and false smiles; hoping for tomorrow to come along and give us a break.

They say something like 85% of 'special' families end up in divorce.  I can see many reasons for this to be the case, but the number one reason has to be the fact that there are many occasions when you size up your partner as this:  a reliable babysitter.  A chance to have a break, sleep in, go on vacation, wander through a mall without being on a time clock or having to take someone to the bathroom every hour.  I wonder how people treat their lives when these luxuries are present.  Even the feeling of going to bed at 10 o'clock without first taking a soaked child to the bathroom and washing sheets.  It must feel like nothing to normal people, but would feel like a vacation in Fiji to us.

So, when will we get used to this?  The scent of parenting in this manner?  I suspect never.  They say humans are very adaptable and can acclimate to new situations quickly, and I can say we have gotten used to many parts of this.  Knowing we will only get away as a couple one week per year; knowing we need a diaper bag with us wherever we go, forever; knowing we will have to walk next to him in stores eternally so he won't reach out and grab someone's hair or pinch their arm; knowing our daughter will always partially resent us for our choice to keep him home or be on the receiving end of two exhausted, overworked parents; just knowing that this life is the life we get, from here on out.  But the smell of pee?  I suspect that will always ring fresh in my nose; challenging me to either get moving to clean it up, or wave the white flag of parental surrender.

I promised to blog more often.  That was in March of 2012.  They say to 'write what you know', and to 'be true to yourself and your situation.'  That is easier said than done, when the topics of your life scare the daylights out of you.  Literally and figuratively.

1 comment:

Sherry Ilse said...

Thank you for sharing your story! I have no idea what it must be like for you to "live" on a daily basis but this gives a glimps to someone who should be thankful everyday for plain old simple life! Thank you!