Wednesday, October 28, 2015

Standing here, as we are, on the precipice of 18 years of this, Mason's lifetime, seems as good a time as any for reflection.  At a time when we should be telling Mas to mind his curfew; days when we should be telling him to remember to keep his tank full of gas in the cold months ahead; nights when we should be making supper for him and his girlfriend and nod knowingly at each other when they go into his room to 'study'; on the cold, snowy mornings when he and his dad should be headed out coyote hunting; on those brisk fall mornings when I should be watching him at band competitions...instead, we are attending meetings where we are deciding guardianship 'due to incompetency'...filling out forms where we have to decide things like, will he be able to decide for himself if he can be an organ donor?  Have a fishing license?  Be sterilized?  Get married?  Then, for the real kicker; listening to a court reporter read those forms in a courtroom.  Out loud.  For the world to hear just how truly messed up he really is.  And just what type of decisions we've had to make on his behalf.  These are weird times.  As we look ahead, to what is next...it reminds me to bask, at least a little bit, in where he's been, and where exactly he fits.

As it turns out, he doesn't really fit anywhere.  It was decided early on he was not high functioning enough for 'regular' school.  Our experience with a private, special needs school taught us that was also not the place for him.  As much as we've tried to fit him into society's pegs, he always seems to pop out; due to him being Mason-shaped and all.

I've tried to find a common thread through his life that can tie all of this together.  Certainly, all of the doctors, specialists, therapists, clinics, and the entire medical side of his life provide some type of common road for us.  The way all of his needs have impacted his sister's life for the past 17 3/4 years also provide some sort of road map for all the ways in which we have changed (and failed) as parents.  The days of laughter and joy have been there, too, and it's hard to think of Mas without thinking of him snorting or belly laughing.  So that has to be a thought that comes to mind.  But when it comes to where does he fit in, there is one answer.

When we lived in Ohio, where he was born, we started the specialty appointments pretty early.  He was born a 'trainwreck'; multiple health issues and birth anomalies that pointed to any number of bigger genetic diseases, syndromes, mitochondrial diseases, unknown dna disorders....the list goes on.  One doctor told us he would probably end up having "Mason disease," as science would have to catch up to him and end up naming his disorder after him.  We had two doctors tell us he most likely wouldn't make it to one year of age.  And we had no reason to disbelieve that.  Whereas Riley cried every night at 9 pm like clockwork for one hour, Mason screamed all day long.  He wouldn't eat.  I would spend an hour trying to get him to nurse.  The next hour with a bottle; pushing the bottle nipple against his lower gums so milk would come out, then I would blow on his face to illicit a swallow reflex; then, the next half hour or so I would pump so I could try to make more bottles.  Then repeat.  Of course we also eventually tried formula, because my milk never really came in properly, without a baby to suck properly.  That little tango went on for the first three months.  I wrote down every single meal time.  I would go to appointments and tell the docs how little he was eating.  They either didn't believe me or took one look at me and my stature and assumed he would figure it out.  At three months, they agreed to let us try solid foods.  We did.  (While still doing the bottle routine...but with formula now...no more pumping.)  At one year of age, he was 17 pounds.  Armed with my notebook of every feeding he'd had the past year, finally, they listened.  They decided he needed a G tube.  He got one.  So now, he had one of the 'markers' they give you for poor prognosis....a feeding tube.  Failure to thrive was another.  Which we had.  He wasn't on the growth chart in any area at this point.  All of these factors, plus the fact that Naivete was my first, middle, and last name at this point, ensured that I believed everything I heard.  So, those were dark times.

I'm not sure what it was that changed.  But, the G tube had been placed.  Like every medical procedure he'd had so far (and would have yet in the future), it was plagued with difficulties.  The Air Force doc and the civilian doc had been in a pissing match about placement, and as such, the tube had been placed far too high in the stomach; right next to the opening to the stomach.  What this meant for Mas was, for the two years he had the tube, we could never bolus feed.  Drip feeds only.  So, when he needed to eat, he had to have it dripped in overnight.  If we tried a bolus feeding, he would projectile vomit.  Something must've snapped at that point.  Because I remember distinctly looking out the window and thinking, "He is going to eat macaroni and cheese and put his feet in the grass."  (Why those two things, I don't know.)  He had been very sheltered up to that point, but suddenly, it seemed really important to get him OUT, and have him FEEL the outdoors.  Like, vitally important.  Crystal-clear.  I remember taking him out the front door, on Kyle Lane, across the parking lot, to a little spot of grass, taking his socks off, and putting his feet in the grass.  And, at the moment, I believe, something took.  I think nature said, I've got this.




To be fair, (and for accuracy in reporting) there is no real reason why Mason should be either comfortable or accepted in nature.  His thermoregulation issues are a major roadblock for him.  If he gets cold, he stays cold.  If he gets hot, he stays hot.  He won't wear hats.  Or mittens.  Or scarves.  He refuses.  We are pretty sure he has Raynaud's, as well.  Although he is ambulatory, he stumbles.  On everything.  Visible things and not visible things.  Wet rocks, uneven trails, slippery leaves, cement stairs, any outdoor surface is fraught with hazards for him.  And falling for him isn't just an inconvenience.  He has huge front teeth that stick out like Bugs Bunny.  That he will someday land on and knock out.  He refuses to wear sunglasses.  And he has foveal hypoplasia.  Which is some fancy thing wrong with the back of his eyes which means he absolutely should wear sunglasses.  He won't.  He has bowel issues.  Which means toilets kind of need to be on our radar at all times.  He won't squat or pee in the grass.  Won't.  He has medication requirements that mean we need to be super organized when we're out and about.  He is kind of the poster child for a kid that shouldn't enjoy or really get the opportunity to go outside very often.  And yet.







Nature has kind of adopted Mason.  Sometimes, when I see Mason out in nature, I feel like I am intruding in some way.  I swear I can see the trees expand ever so slightly as he walks down the trail; the sunlight reaches through the leaves and dances in his hair and on his shoulders; the water in the brooks giggles and chortles as he wades ever so close to the shoreline, throwing in rocks and giggling in reply.  He always seems to know just when we should head back to the car before a storm; as well as knowing hours before a storm that one is on the way.  We call him 'Our little Meteorologist' for a reason.  He has a connection there, that is both hard to explain and hard to understand.  And I'd almost rather I don't get let in on the secret.  Because he deserves a secret or two.

While I can't say he glides gracefully through it, (that would be a lie) he does seem to have a symbiotic relationship with nature.  It's something to see.  He does seem to know when to dip and dive when She rolls and punches.  He still falls, but she seems to know it's coming, and reacts accordingly.





I remember playing outside alone often as a child.  When you grow up in a town of 80 people, it happens.  Stepping out into the cold winter air; your boots crisp on the sparkling snow; the yard your playground.  I remember making the coolest artwork out of icicles, snowhorses, tunnels, you name it.  In summers I remember playing at the creek in Monroe and catching creek chubs with our bare feet in the chill water standing on the slipper pebbles, standing under the bridge and waiting for a car to go by over our heads, and wading through the hip high grasses as we picked off the seed heads and scattered them onto the ground.  Fall always meant bike rides past dark, the sound of combines humming through the night, the smell of burning leaves filling our noses.  The lucky nights were when we could watch the moon rise whilst still out on our bikes.  Spring was always a mix of the flowers in the garden, the early spring storms that we always loved to watch form and scream over the prairie, and rains puddling in the front yard, so we could walk barefoot in them, squishing our toes in the lovely mud.

As the seasons have flown by for this Little Man, it makes me glad that he has been able to embrace the nature I remember from childhood.  Maybe not exactly as his dad and I once did, but he is right out in it, nevertheless.





In closing, assuming the gestalt theory has any basis, and the whole is greater than the sum of its parts, then we can hope nature as a Grand Old Dame ('Mother,' if you will) is worth more in her totality than she is as sold off for the sum of her parts of trees, trunks, leaves, pebbles, rocks, sands, branches, bushes, water, etc.  (And as such, I probably have greatly wronger her by not capitalizing Nature and Her throughout this diatribe.  But I digress.)

Back to this gestalt theory however....if those Germans knew what they were talking about in regards to art, and if we are allowed to apply this to other areas, (and I sure hope we can) then I hope Mas is worth more as a Mas than he is than if he were totalled up for the sum of his parts of his identifiers on paper....as this year has shown us, words can be hurtful.  Hearing someone read about all the things your child is not and can not and will not be from a piece of paper...when they could have walked through a forest and looked at that tree instead...well, shoot.  Seems like a really grand waste of a tree.

It's hard not to be introspective at this time.  These Times.  Because even though we are tired and weary, we have done a lot to get here, and sometimes we have to remind each other of that.  I was just told yesterday on the phone that although there were other people in front of me on a waiting list for an appointment for Mas, we were getting the appointment first, because I had been calling her so often.  ;) A good reminder that this journey marches on, and that we are still supposed to report for duty.

So, although we seem to be hit square between the eyes, pretty damn often, (if not daily, some weeks) with the cold, hard reminder that Mas Does Not Belong 'here, there, or anywhere,' it does seem as though he belongs well, everywhere.  Right outside our door.  He may not do well in a crowded bus or a hot room or a noisy mall or a stuffy restaurant, but get him out in the mix with with "Mother" and he is right where he needs to be.  

In closing, I hope nature continues to hold him close and guard their secret.  I don't know how good Mas is at keeping secrets.  But I do think he knows things I don't.  A lot of things.  (And sees things I don't...but that's for another post.)  And someday, I suspect that the other side of this tapestry may provide some answers.  But for now, we will keep enjoying watching our son play quietly with his best friend; sharing secret giggles and quiet whispers along the banks in the summer...watching mesmerized as she spins up storms and throws down lightning in the spring...grinning ear to ear when she covers our world with a blanket of white...and yellowing loudly into her tinted canopy as the biting winds and the crimson leaves of late fall make themselves known.  Because, she can't say a word, either.  But she speaks volumes.