Wednesday, November 20, 2013

Well, Ain't That A Kick In The Head?

So, on the eve of Mason's 16th Birthday, with Christmas lights a twinkling in my studio, and the sound of Lisa Flora filling my ears, it is time to exorcise.  (It's also time to exercise, but that's a different post...)

(Various Things In Motion prevent me from going into great detail in this blog post.  But, truthful points can very easily be made.)

Also, maybe grab some nosh?  This one is long.  I don't post often, but when it wants to flow, baby, it wants to flow.  So here come the waterworks.

Scene:  March 2013.  Mason's Behavior Therapist leaves his school.  Which is awful news, since she had implemented a behavior plan which had reduced his behaviors to almost zero.  (This particular person had Mas down, pat.  She read him like the proverbial book, saw through his b.s., and made him react to things the way we knew he could react.  Huge.)  We had not witnessed spitting, throwing, flinging, squealing, etc., for months.  So, it was a huge blow.  A huge enough blow, that we started wondering if this was the usual turnover at his school that we were used to, or if this were the start of something worse.  Enter May.  His beloved Speech Therapist leaves his school.  The one who has been instrumental in not only developing Mason's communication, but teaching him a reading program, (Can you believe, a reading program?  She actually believed he could read...which Howard and I have always suspected...) and working hard to ensure his entire school day worked in a way that was well-rounded and made sense to Mason.  I can't even say enough about how tragic it was to lose these two in such a short time span.  Then?  We lose his classroom teacher...and his aide...and another aide....

Well, suffice it to say, 8 staff members later, and in 3 months time, things were looking mighty different at Mason's school.  Different enough, that we were starting to dip our toe into our 'options', which, if you are a special family, is a tiny, murky, puddle of dirty water at the end of your driveway.  Do we move away?  Do we pull him out and put him somewhere (read: anywhere) else?  Do we just ignore the common thread of reasons for staff leaving and hope they are all lying?

So, we began to explore our options.  Which is no easy feat.  Exhausting, depressing, scary, and worst of all, tough on Mason.  Mason has many specific things wrong with his brain, but the primary issue is a nerve migration disorder, which includes biparietal polymicrogyria, enlarged ventricles, cysts, and also a sensory integration disorder.  He loves, craves, needs routine.  Not unlike a child you may know who is diagnosed as autistic.  Structure, to Mas, is air.  Structure and routine are how he is able to be comfortable enough to relax, to allow repetition, and to learn.  So, it's a biggie.

We write a letter to the temporary CEO.  Asking why so many people left at once, with the same story. (If your child was a sophomore in high school and lost ALL of his teachers in three months, would you not ask why?)  I know you would.  Anyone would.

Enter August.  Mas has his usual 2 week break from school.  Then, he attends school for 4 days.  Then, we get a letter from his school, saying they are no longer willing to educate Mas.  I want you to re-read this paragraph.  A 2 week break.  Followed by 4 days of school.  Followed by kicking Mas out of school.

The word "classy" did not figure in here.  These were people with their doctorate in education, deciding that if the parents had questions about their special needs child losing all of his staff in three months, the best response to that is to kick that child of out school after a two week break.

Now, I've never been a big proponent of anyone having their doctorate.  I have met far too many 'dumb' educated folk.  But, for people who have their doctorate in education, this seems almost comical.  What kind of response is this?  To know a child with a need for structure, and then to do this, isn't just dumb, it's also very mean.  MEAN.  Even more than unethical.  Worse than unexpected.  Just plain MEAN.

So, enter my ever dissolving belief system, and where were we this past August 31st up until today?  In the beginning, very lost.  I consulted many people about what to do.  By people, I mean friends, family support people, doctors, lawyers.  Even threw up some prayers.  And if you know me, you know where I was mentally to try that.

I eventually came to repeat, and believe, this:  'How someone treats you is their karma.  How you respond is yours.'

As far as mantras go, it was a solid one.  We may have been stripped of options, but we were not directionless.  We could either spend the time we had in September going after those who did this to Mas, or we could put that energy, at that time, into moving forward.  And THAT, my friends, is the hard part.  You can post it on facebook, you can plaster it on a shirt, you can even use it in conversation with your friends, but to actually DO it, is another thing entirely.

But, we decided our energy at that time was best spent moving forward.  So, thanks to his school waiting for two weeks of a vacation, then letting him attend school for four days, and then bombing us with his letter that kicked him out, we ran into the situation where the public schools in the area were already in session.  Did that make our life harder?  So much so.  The public school we were rooting for, a half hour away, had an adult day program a few blocks away.  Mas could have attended that school, and spent a couple of hours a day dipping his toe into their adult day program.  But, since they had already started their school year, that option was off the table.  Exceptions could not be made.  So, that left us wondering if we should just up and move?  Our current geographical location leaves us in kind of a desert of services.  To say we are remote is maybe an understatement.

So, it was with a lot of fear and apprehension that we finally decided to try enrolling him in the public school in the town we live in.  No easy decision.  We knew wherever he landed, there would be a transition period.  Couple that with the fact he ended up having only 4 days of school in 7 weeks, and the behavior component was very up front and center.  Those behaviors I had mentioned previously?  The ones we hadn't seen in at least 6 months?  All came back.  With new ones.  Suddenly, we had throwing again.  And spitting.  And scratching.  And hair pulling.  And pushing on his speech device, "school", "I want to go", and "staff" and "friends."  On the worst days?  "School," followed by, "I want to go," followed by, "I'm mad."  Aside from the early days of force-feeding him and charting how little he ate and having two doctors tell us he would die before a year, the past few months has been the hardest time of his life for us.  Just off-the-charts difficult.

It makes a person retrospective, I guess, when you are faced with adversity on top of already-existing adversity.  I mean, "Why" is a popular question, but I find it boring.  Until I die and find out what is going on in the afterworld, "why" is really irrelevant.  It may be more relevant to Mason, whom we have watched go through so much awfulness since he was born.  Try watching him scream, all day long, for the first year of his life.  Not colic, my friends...not a couple of hours of screaming, (which Riley had done, like clockwork, and we were used to), but all day long screaming.  Which is where my stress eating really began, and our family really started to unravel.  Then move ahead to him not being able to suck, having zero appetite, having breath that smelled like bleach, having a little something wrong with almost every single part of his organ system, missing milestones every month, and then the fun days:  doctors appointments.  Try holding down your baby while the docs try to get a free-flowing blood sample without the use of heat or a tourniquet...on a child who was always riding the line between hydration and dehydration.  Those days were the dark days for our family, our selves, our marriage, our psyches.  But, these past few months, have been right up in there.

Because, choose wrongly, and guess what?  You spend months getting him used to a system that may decide it doesn't want him.  Or can't handle him.  And then where are you?

Special parenting is truly gruesome at times.  Most times.  There is no guidebook for this shit.  There is only best guesses, crossing fingers, furtive prayers, and a tiny nugget of hope left in your gut that maybe, just maybe, things will work out and you will make the right decision.  It is truly awful.  I can think of nothing in my existing life that is so difficult and yet harbors so very little rewards.  Intrinsic rewards aren't even there.  It's just work, work, and more work, coupled with people telling you all the things that are wrong with your child, and you constantly apologizing or trying to explain his:  behaviors, drool, toileting accidents, squealing, clapping, bad teeth, bad breath, urination issues, bowel issues, etc.  The list does not end.

Now, enter the rest of the song...(Dean or Frank, it's up to you...I personally have to choose Dean on this particular toe-tapper...)

"My head keeps spinnin'
I got to sleep and keep grinnin'
If this is just the beginnin'
My life is gonna be beautiful
I've sunshine enough to spread
It's just like the fella said
Tell me quick
Ain't that a kick in the head?"

To which I reply, Ain't it, though?

Because here we are, on the other side of the storm, and there are some lovely things to report.

First of all, for the past 8 years of our son's attendance in his 'school', we have asked repeatedly for him to be able to observe more neurotypical peers.  Note I said, "more" neurotypical.  We weren't asking for the moon.  We weren't asking for them to produce students they didn't have.  We were asking for him to be able to be in the presence of kids that were higher functioning than himself.  And every year at our IEP, it was verbally promised.  And every year in practice, it never happened.  We were foolish not to get it in writing, but remember, these were during the "I believe in the goodness of people years," so we really felt that they would want to do what was best for Mason.  

So, now, guess what?  Guess who is the lowest-functioning kiddo in the room?  FINALLY.  What we have wanted since the beginning.  Mas is.  He is surrounded by higher-functioning peers all day long.  Which can only be a good thing.  Why?  Because Mas learned a long time ago, (about 8 years ago, to be exact) how to model down.  When he started at his 'school', he didn't have any behaviors.  He's learned a lot over the years.  So, we knew that if he could model down, he could also model up.  Will it be instant?  Hell, no!  Nothing is instant for Mas.  A very wise man, Bruce, once told us that things that would take a 'normal' kid 5 tries to learn, would take Mas 2,000 tries to learn.  I hope that he was correct.

So, here we are now, with what we said we wanted.  We said we wanted him to be the little fish in the big pond.  But it is one thing to wish that and another thing to see it play out every day, right in front of you.  

Which brings me to yesterday.  Mas had been riding a van to school by himself every day.  But, this week, I opened the door to see a very happy, adorable little boy sitting in the second seat behind Mas.  First words out of his mouth?  "Hi, Mason!"  So, I said hi, and asked Mas to wave hi, and he didn't, which isn't really surprising.  Because for 8 years, he has been in a room with kids who would not respond to him at all when he waved or used his device to say hi.

So, that brings us to that afternoon.  I wait for the van to pull up.  It does.  I open the door.  The adorable little boy says, "Bye, Mason!"  What does Mason do?  Waves at him.  WAVES AT HIM.  

I think that wave said it all.  Maybe we are put through trials to strengthen us?  Maybe we are put through trials to pay off bad karma from those in our families who came before?  Maybe it is all chance and there is zero rhyme or reason to it?  Or, maybe, just maybe, everything happens for a reason.  Which used to be my mantra.  Which may come back into circulation!  (Perhaps "why" is not so boring of a question....)

"I couldn't be any better, or I'd be sick.
Now tell me quick, oh, ain't that a kick?
Tell me quick, ain't that a kick in the head?"

We know this won't be fast.  And we have always wondered whether we screwed up by not having him in public school, or at least a better environment, over the past 8 years.  But, in closing, this sums it up best.....

I know this is just the beginnin', but I hope his life is gonna be, "bee-yoo-tee-ful!"


Wednesday, July 17, 2013

Sometime's nothing's a real cool hand....

Well, the results are in....and the winner one?

Our genetic testing we fought so hard for and waited six weeks for?  Normal.  A R G H.  I can't say we were necessarily surprised, but we were disappointed.  Howard reminded me we are probably the only two people in the world who have ever been upset to have normal genetic test results.  I had to agree!  And laugh!

The good news to this is....well, interesting.  While they couldn't find anything on his CGH Microarray, they did offer us a cool and unique opportunity.

Dr. Hoyme, the geneticist working with our family, obtained a research grant that allows him to enroll six undiagnosed children in a study.  The study involves drawing his blood, my blood, and Howard's blood, and doing a small-scale version of a whole-exome sequencing on Mason's blood.  (The full version of this test normally costs around $9,000.)  If the small scale version returns nothing, it sounds like the next step would be the whole-exome sequencing.

The coolest part?  Dr. Hoyme can select 6 kids for this study....and Mas is now #4!

We are headed in to do a bunch of paperwork and some bloodwork, but as of right now, it at least looks like there is a new direction to head...which is wonderful!

So, although the original test we had pinned all our hopes on came up empty, it did lead us down another road....and hopefully this road will continue down a path to some answers.

Tuesday, July 16, 2013

On this thing called vacation....

So, I can report with high accuracy the fact that we have not done such a great job of guarding our time during these special needs family years.  While we always made sure our son's needs were met, we did not make sure our marriage needs were.  Neglect of such things tends to make its' presence known after awhile.  And it did.  Now, we are still pretty bad at doing things as a couple and getting away, but we do make an effort.

While it's a well-known fact amongst 'special' families that a trip to the shower or the walk from your child's car door to your own can feel like a vacation, I like to call a vacation anything where you are far enough from home that you can no longer turn around easily.  That is the point in our trip when I can relax, pull out the cheesy magazines, and become one with my time.  To ensure that we go far enough away for that to happen, once a year, for about ten years now, we go fishing for one week in Canada.

Canada is, well, Canada.  Unbelievable scenery, great wildlife, friendly people, amazing fishing.  We are talking about nice, deep, cold water fishing for walleye, muskies, trout, and smallmouth bass.  While those of you unfamiliar with muskie fishing may think it sounds relaxing, it isn't.  Muskies are called the fish of 10,000 casts for a reason.  They say it takes that many tries to get one.  I used to think that was really funny.  Not so much anymore.  It is a major time investment to see one, let alone catch one.

In our boat, muskie fishing is all business.  Leave the dock around 7 am, fish until dark.  Eat/drink/rest/pee on the boat kind of fishing.  We take it seriously.  We have fun, too, but this isn't the crack open a beer and put your feet up kind of bobber fishing that most people think of.  This is flogging huge, heavy lures, towards any visible or not visible structure that might hold a muskie.  Generally the weather can be anything from four foot rollers and 30 degrees to flat calm and mid 90's.  We chose to go in July this year, so I am expecting more of the 80-90 degree version.

So what about this means vacation, you ask?

Freedom.  The freedom to wake up when you want, eat when you want, eat what you want, take a nap when you want, stay up late if you want, spend your time like you want.  Any special family knows, this doesn't happen very often.  Usually, as a caregiver, your time is spent wondering what your patient needs next.  When you are freed up from doing that, it is heady stuff.

The first day or two of vacation, are the worry days.  You worry about what's happening at home, you worry about them being healthy, you worry you may have forgotten something.  The next 3-4 days are the sliding into happiness days.  You start to feel like your old self again.  You make jokes, you laugh, your face starts to hurt from smiling so much.  The last few days are the reality days.  You realize vacation does not last forever, and yours is about to end, and then it's back to your life.

The reality is, these days happen with alarming scarcity once you have a special needs child.  Even to be able to pack for a trip and not have to worry about their entourage of supplies, is a treat.  To think, you are only packing for YOU, not for your child and every contingency that may arise...that is a great relief.

Guilt comes into this trip, on occasion, but you try your best to push that away.  As a special family, you experience guilt enough...why bring it along on vacation?

The packing, the worry, the driving, the preparation that goes into this one week, is astounding.  We talk about this trip for 51 weeks a year.  We will be planning our trip for next year on the drive home this year.  It is truly a magical week, regardless of the bugs, waves, sun, wind, bad fishing, or any other things that most people would call adversities.

For me?  I can't wait to throw that first cast, when you are full of hope that you are going to see a muskie today....with Zac Brown playing over the boat speakers, sunglasses on hat firmly on, sunscreen applied, and a cooler with our lunch in it, sitting under the casting deck.  Waving to friends, old and new, that we see out on the water....taking pictures of bald eagles as though we won't see hundreds before the week is out.  Breathtaking sunsets and gorgeous trees vying for your attention as you cast hopefully into the deep....spending your time.  Just spending it.  The way you want.  I can't wait.

Saturday, June 15, 2013

And the winner is....

We were living in Ohio.  I had a very precocious three year old that was keeping me busy.  I was pregnant, living 16 hours away from my family, trying to prepare for our son to arrive.  The doctor wanted me to count movements.  I don't remember the specifics, but it seems like they wanted, at the bare minimum, 75 movements per day from the baby.  I would get around 15-20, and only if I would push on him and he would push back.  I remember telling my mom that I wouldn't be surprised if something was wrong with this one.  She would admonish me by saying, "Don't say that!"  But, I was always uneasy about the lack of movements.  When I told my doctor my concern, their reply was, "He is in a transverse lie!  It's a positional problem-he doesn't have the room to move!"  When I would ask why his head was measuring three weeks behind his body during ultrasounds, they would say, "You worry too much!  He's fine!"  Followed by, "Your husband has a small head circumference-he just takes after him!"  Everyone tried hard to make me feel better.  But there was always that raisin of worry in the deepest pit of my gut.  I embroidered a sampler for him, and the pattern had a baby on it with its' eyes shut.  That always bothered me.  I didn't even like the fact it was like that while I was making it.

Fast forward to his birth, or the way we like to look back at it, as the "day when all hell broke loose."  I had contractions around 4 am that morning.  At 7 am, I knew they weren't Braxton-Hicks...they were getting closer together and stronger.  I called my angel friend Sharon, and set off for the half hour drive to her house, to drop off Riley with her.  After bringing her into the house, I went back into my car, where my water broke all over the seat.  And it was green.  Meconium.....ugh.  I went back in the house, and being a nurse, she knew we had to get me in to the hospital right away.  The transverse lie, the meconium, none of it was a great situation.  She insisted on driving me, and I sat in the front of her van with my feet up on the dashboard, and they met us outside the hospital.  We went in to be prepped for the C-section, and waited.  My doctor was in training, and was convinced my water really hadn't broken.  He was also not convinced it was green.  My nurse friend conveyed to them, very clearly, that it was, in fact, my water, and it was, in fact, green.

Finally, the time came for the section.  Even though his head was up in the right side of my ribs, I was having steady, painful contractions, that made the spinal placement less than fun.  I remember the feeling of them trying to get his head un-suctioned from the upper right quadrant of my uterus.  They said they had to put their fingers in his mouth and pull down on his jaw to get the suction to break.  Howard held him up to show me, and my first words were, "Get him to the NICU."  They all said, "Don't you want to see him?  Hold him?"  I said, "He's white as a sheet-get him out of here."

They did, and he spent the next week in the NICU, not eating, with nosebleeds, microcephaly, hypospadias with chordee, having his hands fisted shut tightly, and just  One of Howard's anesthesia buddies came in to see him, and he walks up to the isolette, and says, "What's wrong with him?"  It was like being hit with a brick!  I was like, why are you asking that?  He said, "Was he overdue, or what?  He looks odd."  It was painful, but spot-on accurate.  He was, as my husband refers to it, an "FLK"--"funny looking kid."  He didn't look like either of our baby pictures, and he didn't resemble his sister.  He did, however, have her eyes...and his dad's eyes.

Although we had a lot of symptoms, we did not find a lot of answers.  The Ohio docs thought mitochondrial disease.  The Nebraska docs thought a syndrome.  All along the way, were interesting stabs in the dark.  Smith-Lemli-Opitz, PKU, Rett syndrome variant for boys, Angelman's, Prader-Willi, mtDNA disorder, novel DNA disorder, etc.  They thought of new things to test all the time.  Nothing.  Ever.  Hit.

Fast forward fifteen years.  Apparently, moving to a very remote, "non-doctorly" spot, has left us kind of in the dark as far as medical advances go.  Genetics took quite a few leaps and bounds while we were watching Mas grow.  There was a new test, one that had been out quite a few years, that we had missed.  A CGH Microarray.  Which is very fancy talk for a more detailed genetic workup.  The explanation given to me, said that the first testing he had was like having two huge encylopedias sitting in front of you.  The doctor would think of some paragraph in there to test for.  They would draw blood and test for that exact problem.  If it didn't hit, they were back to the drawing board.  The CGH Microarray?  Is like finding a sentence that is written two encylopedias worth of words. The test that will be out in a few years?   Will be able to find ONE LETTER that is wrong in those two encylopedias.  Wow.

So, we went about twenty rounds with our insurance company...(that fight is worth a more detailed explanation...another day....) and had the blood test for the CGH Microarray drawn last week.  Two to six weeks from now, we will, hopefully, have some sort of answer.  Maybe.  If there is anything genetically wrong that will be kind enough to show up.  There is a quirky little variant where almost every syndrome has a less than 1% chance of being present, even if it doesn't show up in the genetic workup.  But, I am hoping we get a home run, and something hits.

These are heady times, my friends.  Imagine knowing someone, right now, is spinning/testing/evaluating Mason's blood....and looking for some sort of answer to what is going on with him.  For what has been plaguing him for the past fifteen years.  It is hard to concentrate on the little things right now.  This is Big.  It could change the course of our family.  Could even make his life a bit easier.  Could give us a cause to get behind....a website to direct people to....a t-shirt to wear.  Big.

So, that's where we are today.  Waiting.  Listening to the seconds tick by....hoping the people handling the blood are good at what they do.  Meticulously so.  Hoping we get a hit.

Tuesday, May 21, 2013

What do we leave when we leave.....

On legacy....what consitutes a legacy?  We all have things that we 'do' during our time on earth, whether that time is very short or very long.  We all have things we accumulate, too, from fancy china to quirky collections to real estate.  What does any of it mean?  What is the purpose?  How important is our legacy?  How do we get one?

I have been following a really great blog about a little boy that passed before he turned five years old.  His life, and subsequent passing, have touched more lives than some people ever do in a very long lifespan.  What is it that determines what our legacy is?

Is it moxie?  Caring?  Sight?  What makes some people reach out to the world, while others stay locked up in a shell and never really grab anyone?  Are they better people than the rest of us?  Are they smarter?  Are they more interesting?  Is legacy reserved for those with wealth?  Experience?  Connections?  Does the afterworld care who we knew or how much we made?

I have to wonder if the difference isn't truth.

Even though this young boy wasn't able to speak for himself, his mom spoke for him, and very eloquently.  This made people relate to his story and find themselves in the words.  She spoke his truth.  The good, the bad, and the ugly of it.  Here was a child who was unable to speak, not old enough to even ride a bike yet, will never vote or drive a car, and still has influenced so many people.  For no other reason than that he had a story to tell.  A great, big, sad, event-filled story.  That his mom took the time to tell.

I have come into contact, as of late, with many adults who are in charge of our son's care, who have found lying to just be a way of life for them.  How do people get this way?  Is it because no one ever called them on their behaviors?  Is it because lying pays dividends?  Is it because they were raised to lie to get ahead?  Whatever the reason, it must work for them, or they would change their behavior, right?

Somehow, in the limited religious and spiritual scope of my upbringing, I came out of it with a sense of "do right by others."  What is that?  I'm not sure where it came from.  I'm not a good person myself.  I swear, I'm lazy, I get tired, I take the easy way out at times, and I don't work hard at everything I do.  But, I do try to do right by others.  When I walk into a store and the rug is flipped up at the corner?  I lay it back down so no one after me will trip.  When I see someone being wronged, I do everything possible to make it right.  When my son has needs to be tended to, I tend to them.  When someone asks my opinion, I give it.

I think honesty might be intrinsic.  Of course, it has to be learned, too, to some extent, but I don't know how there can be so many dishonest adults if it is just a learned behavior, alone.  Because even those with the worst upbringing would have come into contact with someone along the way who tried to teach them right from wrong.  Who tried to show them telling a lie just breeds more lies.  There would have had to have been someone with a conscience, a moral compass, a SOUL who would have pulled these people aside as youngsters and explained right and wrong to them.  I believe enough in the goodness of people to believe that would have happened.

So that leaves us with intrinsic.  Intrinsic--defined as:  "belonging to the essential nature or constitution of a thing," "Of or relating to the essential nature of a thing; inherent."  What really makes up a person, on the inside?  Is it the influence of things outside?  Or the very nature, in the center of our being, our very GUT, if you will, that determines who we are and how we act?  If it is, how do we influence it in others?

I suggest maybe we can't.  Maybe some people are just destined to be liars, and that is, in effect, who they are at the core of their being.  Do they sleep well at night?  Probably, because I find that people who live by their own set of skewed values usually see no wrong in their behavior.  They find themselves to be doing fine, judging by their own set of rules, which may be so deviant as to cause most of us to gasp if we were allowed to view their set list of rules.

It is unfortunate that so many like-minded individuals seem to be running the show for our son's care right now.  But, it is also very telling.  Liars seem to attract other liars.  It's an unspoken thing; a scent, if you will.  All a person can do is wonder what these people will be leaving behind?  Perhaps these people are great to their own families....maybe they are awesome bowlers; great gardeners; dog-lovers....maybe they even donate to charity on occasion or go to church.  But are they good people?  

I dare to say, that might be the most important thing we leave behind.  Our goodness.  Our rightness.  Our moral compass/values/ethics/intrinsic worth.  Maybe that is the gift, folks.  Let's see more people try to polish that and put it on their mantle.

Thursday, April 4, 2013

In the usual 'busyness' of a general week around here, things fly by pretty fast.  Between the have-to's and the want-to's, things get rather blurry and messy.  Keeping your head above water becomes the new normal, and anything beyond that is luxury.

We did find out Mas seems to be a leftie.  The only reason that's notable is because he is 15 years old and has never really shown a preference.  (In fact, for years, he never knew his hands were attached to him....was quite the thing to watch once he figured it out!)  We've always assumed he's ambidextrous.  (Or, ambihandrous, as our friend Roger likes to refer to it!)  Our observant OT noticed he was spearing food and dipping food beautifully with his left hand.  We tried isolating the left hand at home, and voila!, he seems to have almost 'normal' hand function in his left hand.  Very cool to see.  I'm not sure where the wild/flailing hand movements began, but according to hindsight, it seems to be related to his continuous and long-term use of Reglan, a motility med he was on for about 8 years to help push food through his system.  It seems Reglan has now been tied to ataxia, which would explain why his arms sometimes have a mind of their own.  As my husband likes to say, any medicine is poison, and I guess I have to agree with that.

In other news, we had a troubling encounter with an oldster in Culver's the other day.  As we were walking to our booth, an old man was laughing at Mas, and his wife said to him, "What are you laughing at?"  Then I heard the man say something about "that boy."  I wasn't completely positive what he said, so that kept me from destroying him with my fists, but it is troubling when someone who should know better is so blatantly rude.  Again, the majority of people are awesome to us, but it's the minority who stick with you.  I am usually too flustered to reply when those things happen directly, but I need to get better at it, because holding on to it only feeds frustration and anger later.  Too bad people can't just ask what's wrong with him or keep their laughs to themselves.  I find the older generation to be way less forgiving of Mas and his behaviors than the younger.  Probably because kids like Mas were just locked away back in the old days, so to see them out and about is most likely off-putting to the oldsters.

We are currently waiting for insurance to approve his genetic bloodwork.  As it turns out, the bloodwork in question only costs $1600.  I say, 'only,' because he has had a lot more money than that spent on him in the past, in the name of diagnoses-chasing.  We wait, impatiently, knowing that with the small fee of $1600, we could have some answers.  Which would yield plenty of positive things, not the least of which is psychological; to have a cause to identify with, a t-shirt to wear, meetings to attend, parents to compare notes with, and an answer if someone would ever get the balls to ask what's wrong with him.  The genetic counselor who prepared the insurance letter said, 'this family deserves answers.'  And I thought, yes, we do.  Fifteen years is a long time to sit and wonder what is wrong and how to go about fixing it in the present and avoiding it in the future.

In the midst of our busyness, is a spring break where Mas is spending the week at home.  It got me to thinking the other day, how so many people think we are whining or complaining about his care.  I realized a major difference in how his care is viewed.  If you spend 20 minutes to one hour with Mas, you may think, 'that isn't so hard.'  Try spending the day with him.  Or two days.  Or seven.  Or fifteen years.  I think the exhaustion factor comes in for the 'constants.'  The people who are constantly with him, constantly wiping up drool, constantly changing diapers, constantly worrying over safety, etc.  Remember that when thinking about any 'special' families you may know.  What may seem like a manageable situation takes on a different hue entirely when you think of the complexities of long-term care.  Anything is manageable in small bites, but to have to eat the same meal for years and years gets more difficult.

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.