29 April, 2014

We Called Him Gus

Lucy named him Gus. Which was short for Octavius, the mouse in Cinderella, and also for Augustus Gloop, the boy from Willy Wonka and the Chocolate Factory. Gus was a little chubby, but he was good natured and eager to please.

My husband is good at picking out the “used puppies” we tend to invite into our family. We never get a dog when they are new, only after they’ve been around awhile, maybe had a hard time, maybe they weren’t treated very well, that’s when they come to us, and it is always obvious which dog should come home with us. Gus made it clear he wanted to be our dog when he let four year-old Lucy walk him on a leash, and curled up next to Jake with his head under Jake’s hand to help initiate being pet. He was still not 100% healed when we got him, and while they were reluctant to let him go, everyone agreed it was a good fit. He was ours, and we had only stopped by to “take a look around.” 

He was skittish getting into our van the first time. It’s possible that given the ubiquity of that car in this state, that he was tossed out of one before he was found on the side of the road. We coaxed him in, and he lay down between the kids as if the spot had been built for him. We proceeded to eat dinner in the car, over his head, and not once did he try to sneak food from us. He was a good dog. He was a perfect addition to our family. Gus. Such a good boy. 

As it turns out, he didn’t really ever retrieve, despite being a Golden Retriever, and he is the first of that breed I have ever seen who was not motivated by food. Given the amount of edible debris spilled on the floor each day at my house I was not thrilled with this lack of enthusiasm for vacuuming. But what he lacked in housekeeping skills, he made up for in patience. 

That dog was laid on, jumped over, stepped on (by accident!), pushed out of the way, scooted out of the kitchen, and chased down the stairs. He was a pumpkin and a princess and a superhero, and a cowboy, and many, many other things that little children can dream up when they are between the ages of 4 and 8. He wore each costume with a slight roll of the eyes, but stayed still while little tiny fingers tried over and over to make the too-small hat fit upon his head. He trick-or-treated next to Jake’s wheelchair, amid all of those people and didn’t ever make a peep. 

Even when I stayed up way too late, hours after the other members of our family had gone to bed, Gus would wait for me, sitting at my feet, keeping me company in the light of the computer. 

It’s not easy to be a part of our family. We are loud, and unruly. There is almost always a television, an iPad, and a phone in use at the same time. We travel, to other destinations with more children and more dogs, and we over pack, leaving just enough room for living things to fit...just barely. Our house has many stairs, and a deck that overlooks the city, and there are deer all over the place outside, creating a life of attractive nuisance; all the deer a dog could want to chase, with none of the barking allowed. 

We love those who become a part of our pack, even those who spend their days lounging across the kitchen floor, seemingly in the way of every path to make dinner. With our whole hearts we are thankful for the time we had with Gus, for another bit of fluffy, warm love that we got to have in our lives. We were so lucky to find him and so happy he chose us. 

He is loved, and he will be missed.

24 April, 2014

Such Stuff As Dreams are Made On

The building was huge, a true monstrosity whose architect was clearly influenced by the creepiest aspects of a poorly laid out mall, an abandoned naval yard, with just a whimsy of the dark garage of the neighbor you were never supposed to visit as a kid.

I'm not sure what happened first.  Did I know something wasn't right, or did they tell me they had "lost track" of my son? I just remember that the two women standing there behind the flimsy stanchion and rope "gate" looked both unsurprised, and only slightly worried, mostly about losing their jobs, and not about my lost son. My mostly nonverbal, does not come if beckoned, additionally taxed with cerebral palsy, and thus has poor fine motor skills, son. He is beautiful and funny and one of my true loves, but one thing he is not, is a boy who can be left alone.


It's hard to convince people to take it seriously. To lock the gates behind them, ensure the fence has no openings, make sure the dog door is closed. Hard for others to see that a deck with a low railing is really not safe enough, and if you add a chaise lounge next to the rail, so as to make it easier to rest your drink, you've just created a giant step to leap right over. It's hard to explain why just holding his hand in the parking lot does not guarantee safe passage, because he is strong now, and has moves like Houdini, able to twist his hyper mobile arms out of being held.


I'm sure that's what it feels like for him, that he is ever-captive, with no freedom to go about his day as he might choose. No matter how many engaging choices he makes, I can't leave the back gate open to let him explore, I can't sit in my chair on the sand as he walks along the shore. I have, or someone has, or someone should have, a hand on him almost all the time, any time we leave the confines of our house; he is ensnared.

So it's not surprising that he would have escaped under not-too-watchful eyes, and was now wandering in this poorly-lit labyrinth of a building.


I run down the corridor, but I know this is not where he would have gone. He's no fool, and would dart into a smaller walkway as soon as possible to avoid detection. I can see him across the abyss from one viewing station to another, four stories of art and science, and humans below us. I look to find the stairs on my side to head down to the level he's going to, but when I look back across, he has disappeared into a shadow again.


I'm alone in this. I can't get ahold of my husband, my daughter is too young for this responsibility, and yet I ran and left her with the very two people who lost my son. My daughter. I've just left her. I just turned and ran.

The phone in my hand is uselessly filling with voice mails that say, "if you can't handle it, let me know, and I can come help. If you can't handle it..."


It seems I am surrounded by an entire nation of people who do not get it, who walk by, either staring at my plight or avoiding me. No one who can, will help, and those who don't know how, are scared to ask. It's just me in this giant, horrible building where none of the signs make sense, and there are only open tread stairs between floors, and everything is echoey as I run, madly, searching for my son, hoping my daughter will somehow remain safe-enough until I return.


I woke with a clenched jaw and a headache painfully draining any good thoughts I might have had, and as the light seeped between the curtains, I begged the sun to tell me that it was just a dream.

And then I am clearly, fully awake, and I wander to the children's rooms to check on them, even though it is obvious we are not scattered through some other building.

I peek at my daughter lying on top of her covers, flat on her back. She looks like Snow White, with her hair framing her fair face, her ruby lips turned lightly at the corners; she sometimes smiles when she's sleeping, and that seems to make me think her life is pretty good.

My son is equally safe,  a tangle of teenager in his extra-long twin bed that is already looking too small for him. His leg is draped over the side, unwound from the covers, looking like a specimen of the perfection of man, with muscle and strength showing even through sleep.  His toes are set lightly upon the ground, like a sprinter sets their foot, ready to press off and beat the track down with perseverance.

I sigh at the wonder of them, and try to shake the chill of that unforgiving, other dimension.

I am ever-thankful that it was all a dream, but I realize, even hours later, with both of them safely at school, that I remain a little distanced from the present. I worry that some of that panic, and fear, and anger, some of that shame and threat of loss, I wonder if I carry a bit of those things around all the time, and that is a little unsettling. And I wonder how much of it is manufactured and how much of it is real? What is my business to figure out, and what are things I wish would change in the world around us?

Our every day has a lot of good in it. There's laughter and hard work, and good food, and adventures, and there's movie night and family snuggling. There are friends and family and celebration. So this night, when I sleep,  I will push away the dark and dreary, and envision instead our average day, our filled-with-so-many-good-things, average day, and when I close my eyes there will be my Snow White and my young, Strong-man, because the people they are, our little life- it's the stuff that dreams are made of.

Our revels now are ended. These our actors,
As I foretold you, were all spirits, and
Are melted into air, into thin air:
And like the baseless fabric of this vision,
The cloud-capp'd tow'rs, the gorgeous palaces,
The solemn temples, the great globe itself,
Yea, all which it inherit, shall dissolve,
And, like this insubstantial pageant faded,
Leave not a rack behind. We are such stuff
As dreams are made on; and our little life
Is rounded with a sleep.
The Tempest Act 4, scene 1, 148–158

01 April, 2014

Being Hopeful Is Never a Mistake

Over the last few weeks I scanned-in, then shredded, thousands of pages of our life, old documents that were taking up space. The guest room is not a place where old memories should go to die, and so I pulled out a giant bin and began re-living moments of pain, distress, and joy as I watched old bills, prescription leaflets, and holiday cards float across my table. I cried a little, smiled a lot, and more than once clutched a few sheaves against my chest wondering how we moved past some of the hurdles in our past.

I was amazed by how many pages I remembered instantly, where I was, how tired, or happy, or anxious the words made me at the time. When I hauled those bags out to the recycling bin, and there will be more of them, I poured in those pieces of paper and I knew these things:
  1. I really didn't need to keep most of that paper in the first place.
  2. I now have a digital copy if I ever need it again.
  3. My brain has a lot more room in it now that it is not holding on to "Where is that specific paper from 2004?"
More importantly, sifting through all of those documents, medical and educational, family journal pages and scraps of paper, I was able to see how my son has grown. His IEPs have finally taken shape and the words on them really matter; there were milestones and he has met them. There were medical queries and they have been answered.

It is obvious that being hopeful is never a mistake. Before we used the words "presume competence," I can see that we tried, and as we've grown in understanding, we've expanded our thinking, changed our behavior, and developed expectations for ourselves and our family.

We're not done figuring things out, but at least I know there's a little more room to do it now.


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