June 30, 2016

Craziness, Campers and Carly

Cancer scans. Dog breeding. Camper renovation. One month summer semester coming to a close. DIY landscaping and house projects.

That's just from the last two weeks. We will be doing more scans to investigate liver lesions in coming weeks and George's summer session wrapped up so we have the rest of the summer free.  Been working on painting lattice under house last week and trying to landscape the backyard...by myself...because George doesn't care about a nice looking yard...not even little bit.  And this heat has been miserable so my progress has been sloowww.  But I've made some...


It isn't just about having a nice looking yard though.  It's about having a Clayton proof yard.  Clayton doesn't understand things like dog poop is gross; so he doesn't watch to avoid it on the ground and if he steps in it he doesn't associate it with gross and will wipe it off with his hands or rub the bottom of his foot on his other leg, etc.  You can see how that can get really not fun for me.  So it's 30% about working towards a well groomed yard and 70% about designing designated dog-poop free Clayton play areas and paths.  It's taken two years to get as far as I have, but I'll keep chipping away a little at a time.

Macy came in heat so we've been spending a lot of time at her boyfriend's house.  So.Excited.For.Puppies.



Aside from making puppies the most exciting thing has been our camper renovation.  I'm almost done stripping factory decals, then a good cleaning and roughing up and then PAINT!  Already got my paint and waiting on good weather next week.  Here's my color scheme (paint chips and our new awning):


I like classic so that's what I'm going with.  Going for this pattern with my colors.  


As you can see the old awning was shot...




The new awning is such better quality and more appealing aesthetically too.  Some local folks helped us find an affordable option since our finances are super strict.  It was actually a Sunbrella camper awning on clearance from a past season. So it ended up costing less than ordering the fabric alone would have.  Then when the size wasn't just right, they altered it in no time. 


I have also been reading Carly's Voice and it is great.  Carly and Clayton are nothing alike, yet with so much in common.  I read her dad's words and I hear my own thoughts as a parent to a child with autism.  I know there are plenty of families with Autism around, but I don't personally know them, so thus far our autism journey has been as lonely for me as our cancer journey once was.  Reading this book is such a comfort.  Here are a few moments from the book that spoke to our life in so many ways:

It was irritating, destructive and unstoppable. "Ssshhhhh," I would say, but it came out more like, "Stop, God damn it."

What simple solution could there be to stop a thirty-pound child from hurtling her body full force against a wall?

Carly couldn't engage in many of the diagnostic tests they tried.  She didn't follow multistep instructions or tasks nor could she speak to explain what was going on inside her body.

Rather than enjoying Carly's childhood, we were consumed by the tedious task of pushing her from one doctor to the next.

I was beginning to feel like Haiti. Or Sri Lanka. A place where natural disasters just start coming and don't have the good sense to stop.

We rejoiced at small wins such as her learning how to hold a sippy cup, sit still on a chair for ten minutes during music time and sort blocks by color.

It felt like a humiliating medical procedure with our private parts exposed in the chilled air of the examination room as he pored over our tax returns and reviewed the expenses for raising Carly.

But over time, even these simple words disappeared.  I was thoroughly disheartened when meaningful words where mastered one week, then lost the next.

There was some relief in the delusion that she didn't understand the sights and sounds swirling around her.  But Tammy and I always felt as if we were being shunned by a clique.

Mothers are suppose to have limitless patience, but I know all too well that this isn't true.  Tammy was drained.

Though my life often felt like I was bailing water from a foundering vessel with a teacup, I believed that if I was determined enough, consistent enough, patient enough---I could bring order to the chaos.

It was like living with a raccoon in the house and there were no signs of her growing out of it.

There was so much I wanted for her, simple things, impossible things.

It seemed like there was always potential for a little more bad news, a few more challenges.

Autism was a thief...It stole energy and money and patience.

We are not part of the autistic child's domain, nor are we fully part of society.

This sense of self-imposed isolation was often a topic of conversation between Tammy and me.

I'm not even halfway yet and this book just speaks to my heart.

I only know how this books reads for me with the challenges in my life, but I would think it would be a good read for anyone hoping to better understand the world of Autism.  If you do read the book I will disclose now that one of the biggest differences between Carly and Clayton is that Clayton has always been happy and always laughed (of course he has grumpy days and can have extreme tantrums but generally speaking, happy).  I guess that was our gift for his always being sick too.


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