A picture hints at a story like a cuttlefish…a moment of time is captured, and it looks a certain way. If the shutter closed one second quicker or is slightly delayed, perhaps a very different story would be implied. We all know pictures can give life to a lie…they can be redrawn so that nothing resembles what actually occurred- or who was even in them. Videos too…Boggie’s “Nouveau Parfum” illustrates this eloquently, though not as dramatically as the technology could permit. I happen to love the message of the lyrics as well, but if you haven’t seen this video, it’s short, eye opening, and worth a google…when your done reading this post, of course 😉

But even if none of those things are done- even if nothing is edited, touched up, changed, or reshaped- you can view a picture and hear it whisper echoes of what may have come before and what will breathe into the future, and this imagined story can still be fiction masquerading as biography. Without the actual before and after context any photo can easily do all of that against the desires, hopes, and intents of the photographer or author. And, it can make very hard things look easy.

None of my photos are retouched to say anything about me that isn’t true. No resizing of my figure. Gray hairs? Got ‘em. Dimples? Ugh. Don’t even go there, but when I’m fully smiling- yes. Moles? Scars? Yah…those too. The picture leading into this post is of a beautiful moment- but what stories is it whispering into the halls of your mind? Did it make this moment look effortless?

Because nothing from the collage of moments surrounding it comes that way. Certainly not the past, and though the future is not possible to predict with any precision for our little man, I would wager not that either. I will be helping him fight with everything in me for every pixel of hope that future can be formed out of for years to come. And that kind of battle always has a hefty price tag, figuratively and literally.

This picture doesn’t tell you how rare it is for my son to even be sitting like that long enough for a picture to be taken without the involvement of french fries or ice cream. It doesn’t tell you how when he was much younger, he couldn’t handle the sensation of grass on his skin. It wasn’t one of the textures that would make him gag and vomit when he touched it, but it would produce frantic hysterics, that in turn led to copious amounts of mucus sliding down his throat. And then this slimy sludge could end up causing him to gag and vomit all the same.

Nothing from the photo even hints about the months and years of sensory integration and other therapy work we did together that culminated in that moment. It doesn’t tell you how I sat there watching him press his hands in the grass as I struggled not to cry because our child was not only willing to touch the grass unprompted, but was tentatively seeking after it. Because if you start crying when your kid is touching grass, people think you’ve gone crazy. For most people, touching grass is normal. No big deal. Something taken for granted. Definitely not worthy of joy or tears, and certainly not requiring Herculean efforts to arrive at.

The image won’t tell you that I can never relax- never -, because our son frequently tries to run off, even when he seems to be enjoying the moment. Slowly the incidence of his attempts is decreasing (we’ve been working on this for a few years now), but in the beginning when he first learned to run the frequency was intense and scary. I feel like I have to hold Mad-eye Moody’s advice to heart at all times… “constant vigilance!” All of that “vigilance” certainly could crack a person’s sanity from the pressure, and the mental effort it takes to avoid that route bears no resemblance whatsoever to ease. Part of my mind is always on him, even when I sleep at night. Because it has to be. And “stop” is only a word you read on a sign when it comes to Tony…right now you can call that out until your voice rasps down to a breathy gurgle without seeing it happen.

He was happily watching the cars on the road in front of our church building when this picture was taken. He looks and waits for moments you turn away before he silently surges forward. He’s not trying to be naughty, he just doesn’t understand what could happen to him if he actually gets in front of one of those cars…and yet, he just loves them so much that’s exactly what he wants to do so he looks for an opportunity that seems less guarded. We’ve tried to help him understand it, I even at one point bought two realistic looking toy cars that had lights and engine noises from a local WalMart that I crashed into “Tony” figurines I fashioned from Play-Doh to help him visualize the danger.

So far, nothing we’ve tried to do to help him curb this impulse has succeeded…his inhibitory signals are still arriving far too late, if they arrive at all. He actually only tried to get up once while we were sitting this day…all of my muscles tensed and on the ready for half an hour just for one moment that could have turned fatal. That’s right. He actually sat there for 30 minutes.

And if you know or work with my son, you’re jaw and toes are mingling as you read. This is a phenomenal length of time for him, something that only recently has begun to emerge and tentatively play hide and seek with us in our current lives. We still can’t get him to sit for more then a couple of minutes for most tasks, especially school type ones (most of which he dislikes passionately), and we certainly can’t get him to sit half an hour straight in church. In fact, we were out there because the people and the noise finally became too much for him. Everything about church is hard for him, and what incremental progress we’ve had in helping him adjust to this environment was yet another bill to be paid.

Getting to church that day wasn’t easy. He had emptied out part of his ball pit, and didn’t want to clean it up. Not even for some of his favorite cookies. Not for anything. This is very common for things he doesn’t want to do, and trying to meet the schedule we have to keep with a kiddo who refuses to get dressed for an hour or refuses to get in the car on a daily basis has the whole length of my nerves looking like split ends.

I emphasized to him that we weren’t leaving the room until he cleaned, and after about half an hour started the metronome thing (and that helped), but he still wasn’t happy about it, and it still took a little more then an hour to get us out of there. The metronome can help him when the problem is that his brain is struggling to initiate or sustain a movement. Sometimes that’s the problem, sometimes he just doesn’t want to do it. And in that case, often nothing will entice him to act on a request. Gentle coaxing mixed with heavy doses of patience are permanent residents here.

Listening to the cacophony of opinions on how to ameliorate the many struggles he’s had exacts it’s own wage as well. Often this well meaning advice or criticism belittles the problems and unfortunately betrays how frequently people misunderstand what intellectual disability, chromosomal abnormalities, and genetic disorders can mean for a person who looks like everyone else on the outside. I try to understand that, but sometimes it still hurts. Like the time someone indicated to me that spanking Tony would fix all of his problems.

For the record, a child who has this level of disability would not connect spanking to the action as a consequence and it would not produce the results this person envisioned, but would rather lead to him feeling further terrorized by life. His sensory issues alone have led to some pretty miserable times for him. I’m not a physical disciplinarian regardless, but these types of comments from individuals who have no idea what we are doing, going through, or dealing with have corroded and etched across my mind and heart, forever altering the landscape that is me. I saw some of the pictures Andy took of Tony and I in the grass and they reflected a bit of that cynicism etched on my face in ways that I have to acknowledge, though I don’t admire. And yet, it is an accurate reflection of part of what I have become to survive all of this.

Some days, I look at me and it’s like my mirror was flung across the room, and someone who didn’t know me came back in and glued the pieces together and I’m now a Picasso I search for resemblance. Almost everything I came to associate with what brought my life joy has been stripped away to make room for countless hours of therapy, caregiving, and support. There’s just enough of me left to recognize my soul’s heartbeat, a love of service, that if you stare at me long enough you can see there’s a “me” still in there- somewhere. But the past 5 years have heated me up and folded me over and beat upon me so many times I am often something harder, something forged to fight every one of his battles.

None of the pictures you’ve seen on this blog have shown you the moments where I sat there repeating in my mind over and over again words I heard given in a talk by Sister J. from our ward a few years ago as I tried to brace myself to handle the pummeling from everything that has been happening. “I can do hard thing.” “I can do hard things.” “I can do hard things.” “I can do hard things…”And I’ve learned over the years that I certainly can.

They don’t show you those times I sat on my floor, broken and exhausted from months of holding my son for hours each night to keep him from harming himself, rocking back and forth sobbing until my nose clogged up and my breath came in jagged, open mouthed puffs, desperately praying for the strength to be enough for all of this. They don’t show you any of the other struggles our family faced at the same time.

Yes, sometimes pictures can make things look easy, so easy you don’t realize exactly how all consuming the effort to produce a single moment in time has been. Well, actually, one thing alone has been without difficulty. Loving Tony. That has been part of what I breathe, I don’t even have to think about it…and it keeps me moving forward. I would do every second of it over for him, I would do it for Hannah, I would do all of it and more if days were longer then they are.

I woke up the Sunday morning this picture was taken certain this needed to be my topic because of all the pictures I used the day before (each of which had years of their own prequels), but I wasn’t sure which one I was going to target. And then this beautiful, unplanned moment that I wasn’t expecting burst like a sunbeam into my day, as I sat there feeling sad and discouraged about the fact that he couldn’t make it through sacrament meeting, and Tony can usually make it through at least that much (although not while sitting) before he needs to leave. So when Andy followed us out to see if I wanted him to take Tony home early, I asked him if he would document the occasion. But like every other picture we’ll ever use on this blog, I knew there was a fuller story it could never tell on it’s own. And then Tony and I sat in the grass, enjoying the moment, until he couldn’t handle the sitting anymore.