“Logic will get you from A to B. Imagination will get you EVERYWHERE.” ~Albert Einstein
People often say to us, “I can’t imagine…”
It’s funny. Not funny that they are trying to sympathize with us by acknowledging the difficulty of our situation. They’re really sweet for that. But, it’s funny because, I can’t imagine either. And, I’m not sure if I couldn’t imagine because my brain is playing some crazy trick on me or if it is that I’m just too tired to remember, but these last few months I’ve walked through life in a complete out of body experience.
Then, suddenly. Out of nowhere, really. And like a freaking wall filled with heavy bricks that just came tumbling down on top of me, making it hard to breath. Suffocating me. It hit me. The light went on. The wheels of my brain started to turn again.
Laying there in bed. Another night of not sleeping. Searching for things to do to keep me awake…I curled up next to him and began to look for an answer to how I’ve been feeling. Because these days it seems like I just feel nothing. As I curled up and studied the complex, yet simple, boy that was right in front of my eyes…the gentle, yet tough, paradox that constantly consumed my mind. I was taken. Mesmerized by the beauty of his little lips. Admiring the smooth, yet rosy complexion in his cheeks. Marveling at how his long eyelashes rested gently under his eyes. In the midst of this moment, I started to think. And where I had once been walking through life emotionless, I was now filled with these emotions that consumed by entire mind, body, and even…my soul.
I thought about that statement we often here. “I can’t imagine…”
Thoughts began to consume my mind, telling mea story I had never heard before. A tale of a life I’ve been living every single day. An existence that represented every single part of me yet was completely unfamiliar.
So, over the curve of his nose and through the dimple in his chin, I began to understand a little more about what it’s like living with the boy with the intricate brain. Or…rather I began to imagine. Imagine what it might be like if I could actually be present in those moments. Present. Not on auto-pilot or survival mode. Not gathering up all my strength and holding it together. Present. Because maybe, in the long run, being present might mean being accepting. Or understanding. Or whatever word you find to mean this isn’t all a dream.
And maybe, if I could imagine this, then, someday, I can imagine something more. Something that would make people say “I can’t imagine…” But in the opposite way they had said it before.
So…as the cool breeze from the ocean air rushed over his little coolie. I pulled up the blankets over his chilly little legs and Batman underwear and I began to imagine. And it went something like this…
Imagine being changed. Changed into someone you don’t even recognize. Like seeing someone who looked familiar. Recognizing them from years ago. But noticing that something about them was just completely different. Coming to understand that you really didn’t know them at all, at least not “this” them. The one that changed over the years.
Imagine setting out on the most beautiful summer day. Blue ocean. Clear sky. A bright beaming sun that helped reflect all the beauty that surrounded you. A perfect ship to carry you through the sea. Breathing in the salty ocean air as you relax. A perfect day that nothing could ruin. Nothing except the unexpected storm that hits you out of nowhere. Without warning. Coming through the storm wondering what the hell just happened and where you are. Disoriented from the shock of it all.
Imagine standing back and watching the one thing you were put on this Earth to care for…suffer. Having no control. Not knowing the outcomes. Juggling treatment A and treatment B on the scale, only to find out that there will never be a right answer. They weigh out evenly and now you must choose. There will never be a “this WILL work.” Uncertainty. The unknown. And fearing that unknown more than you have ever feared anything in your life. No rhyme. No reason. No justice for the one person who deserves to have all the answers at his fingertips.
Imagine the guilt. The guilt of making new decisions. Wondering how they will affect his outcome. The guilt of self care. You’ll feel guilty to sleep. Guilty to shower. Guilty to eat. Locking yourself in the bathroom just to take a minute to breath. Then guilt. As the tiny knuckles rap on the door that is always open to him. And as he says “Mommy, why did you lock it?” The tears. The tears from the guilt that says because I needed a break! But the guilt that keeps you from saying anything at all. Except, maybe, “I don’t know. I don’t know why I locked it.”
Imagine driving miles. Hours. Listening to the same question over and over and over. Every thirty seconds. “Mommy, what are you doing?” I’m doing the same thing I was doing a few seconds ago…I’m driving! Or hearing someone say “Hi Mommy.” “Hi Daddy.” what seems like 40,000 times from here to wherever your destination may be. You wouldn’t dare lose patience. You wouldn’t dare ignore the request or respond to the statement. You would respond. Each time with patience and a calmness in your voice that echoes “why don’t you ask again?” Followed by the same statement. Or the same answer.
Over and over and over and over.
Over and over as many times as it took to let him know he’s loved. Keeping cool because you know the minute you lose your patience it’ll all come swinging down on you. Like an axe about to chop a piece of wood. Because just when you let yourself be some sort of normal, that storm hits again. Out of nowhere. Without warning. And it leaves you with enough guilt to remind you that it owns you. It stalks you. Waiting. Creeping. Ready to strike again. Just when you began to live again.
Imagine all of that.
And all of these feelings. Or should I say…happenings going on inside your head. Constantly. Day after day. Night after night. Moment after moment. Trying so hard to stay positive and to live for the joy of what you are experiencing NOW, instead of worrying about the tragedy of what could be the future. Worrying…thinking…what if.
What if! What if? WHAT IF?!
I guess if I imagined what it was like. This would all be a part of it.
And, as the years go on. I’m sure there will be more. More obstacles we have to face. More storms we’ll have to survive. More ships that will sail. More maybes and maybe not’s. More should I’s and why did I’s. More what ifs.
So, for now. To those who care enough to try to imagine….we say this:
There are other things we imagine. Things that we sometimes can’t imagine. But, things that we hope for. That we dream of.
We imagine a day where we can walk into a room without looking someone straight in the eyes and not seeing them. At all. Until later when we’re embarrassed at how rude we might have been. Consumed by the thoughts in our head. A day when we can lighten the load we carry on our chest. The garbage that fills our head. A day that we can breathe. Maybe even relax a little.
I imagine a day without pacing and checking and listening and checking again. An entire day filled with happy moments and happy moments only. No worry. No guilt. No what ifs. And maybe a little bit a sleep at the end. In the present. No nightmares of the past. No dreams about the future. Just. Right. Now.
A better day. Just one better day.
But until that day may come, we wait. Not knowing what to say to each other. Not quite understanding how the other feels or how they are coping. Or not coping, for that matter. Not knowing how to help. Not knowing how to accept. Not knowing how to be. Not knowing…well…
Not knowing anything. I guess that’s what it really comes down to at the end doesn’t it. Not knowing anything. Yet desperately wanting to know something. ANY THING.
So, until then. Until that day comes, we pray. We raise awareness. We fund research. We throw in our everything to hope that it can find something. Anything to help.
Until that day, we share our story so that others know they are not alone. So that parents can find comfort and doctors can find answers and patients can find an end to their suffering.
Until that day, we find hope. Hope in the “knowing nothings” of the past that turned into “knowing somethings” of the future and ended with “knowing EVERYTHING” today to find a cure.
Until then, I’ll fight for that day. And, no matter how hard it may be. Even if it kills me. I’ll keep fighting.
I’ll fight for him so someday he can say “look at me!” So at one point he can say, one day they knew nothing. But, that didn’t stop me. I was strong. And I fought ONE more time. And because of that one more time, they knew something.
I’ll fight so my son can look back and say “my hardship made a difference.” So he knows that it was not wasted.
So he can say “I fell victim to a demon that attacked my brain one too many times. But, I always got up. I always fought. I was always brave and strong and filled with faith and hope. And…you know what, it worked.”
And I look forward to the day I can look back at his struggle and respond..
There was never anything “normal” about you Anthony. In fact, from the moment I saw you smile, I knew you were different. And…with each battle you overcame, I knew you were extraordinary. And, all my overwhelming desires for you to be normal suddenly went away. And were replaced with pride. A different sense of pride.
Some days I couldn’t believe it myself and some days I lost hope. But, someday…
We’ll sit there together. Sit there looking back. Sit there and think…
That’s your story.