Saturday, May 25, 2013

Sarah Kay for My Boys or Better Yet for Me

Recently I just discovered an amazing Spoken Word Poet, Sarah Kay. And among the few ones I have heard her perform, "B" is the most poignant and moving of all for me. I would like to think that these are the words I want to tell my boys when the time comes when they can understand my words, my spoken words more deeply. But, on second thought, maybe these very words, are what they are teaching me ever since they were born. Life does have a different way of making me find out and live out what is sacred in life itself. When I think I already know how things should go about, it takes a different turn, the road diverges into a narrow, rough patch without even an early warning device. And all I am left to do, compelled to do is to ponder, wait, trust the process and be thankful for everything. Because nothing in this life is without a purpose. So here's Sarah Kay's "B" for my boys, my little prince Garret and feisty king Morgan, or better yet, my boys' daily reminder for their mama.

If I Should have a daughter… (For my boys, or better yet For Me)

By Sarah Kay

If I should have a daughter…“Instead of “Mom”, she’s gonna call me “Point B.” Because that way,
she knows that no matter what happens, at least she can always find her way to me. And I’m going
to paint the solar system on the back of her hands so that she has to learn the entire universe before she
can say “Oh, I know that like the back of my hand.”

She’s gonna learn that this life will hit you, hard, in the face, wait for you to get back up so it can kick
you in the stomach. But getting the wind knocked out of you is the only way to remind your lungs
how much they like the taste of air. There is hurt, here, that cannot be fixed by band-aids or poetry, so
the first time she realizes that Wonder-woman isn’t coming, I’ll make sure she knows she doesn’t have to
wear the cape all by herself. Because no matter how wide you stretch your fingers, your hands will
always be too small to catch all the pain you want to heal. Believe me, I’ve tried.

And “Baby,” I’ll tell her “don’t keep your nose up in the air like that, I know that trick, you’re just
smelling for smoke so you can follow the trail back to a burning house so you can find the boy who lost
everything in the fire to see if you can save him. Or else, find the boy who lit the fire in the first place to
see if you can change him.”

But I know that she will anyway, so instead I’ll always keep an extra supply of chocolate and rain
boats nearby, ‘cause there is no heartbreak that chocolate can’t fix. Okay, there’s a few heartbreaks
chocolate can’t fix. But that’s what the rain boots are for, because rain will wash away everything if you
let it.

I want her to see the world through the underside of a glass bottom boat, to look through a
magnifying glass at the galaxies that exist on the pin point of a human mind. Because that’s how my
mom taught me. That there’ll be days like this, “There’ll be days like this my momma said” when you
open your hands to catch and wind up with only blisters and bruises. When you step out of the phone
booth and try to fly and the very people you wanna save are the ones standing on your cape. When your
boots will fill with rain and you’ll be up to your knees in disappointment and those are the very days you
have all the more reason to say “thank you,” ‘cause there is nothing more beautiful than the way the
ocean refuses to stop kissing the shoreline no matter how many times it’s sent away.
You will put the “wind” in win some lose some, you will put the “star” in starting over and over,
and no matter how many land mines erupt in a minute be sure your mind lands on the beauty of this
funny place called life.

And yes, on a scale of one to over-trusting I am pretty naive but I want her to know that this world
is made out of sugar. It can crumble so easily but don’t be afraid to stick your tongue out and taste

“Baby,” I’ll tell her “remember your mama is a worrier but your papa is a warrior and you are the
girl with small hands and big eyes who never stops asking for more.”

Remember that good things come in threes and so do bad things and always apologize when you’ve
done something wrong but don’t you ever apologize for the way your eyes refuse to stop shining.
Your voice is small but don’t ever stop singing and when they finally hand you heartbreak, slip hatred
and war under your doorstep and hand you hand-outs on street corners of cynicism and defeat, you tell
them that they really ought to meet your mother.

Sunday, May 19, 2013


After two long days of Speech and Language Workshop, follow-up sessions and evaluations, I'm quite beat. But happy beat. There's nothing more rewarding and affirming than coming home to my two little royalties kissing me full on the lips and embracing me with the tightest hug they can will their little boys' arms to ease their mama's tired body and mind, like they're saying to me in their own nonverbal way, "You did good, Mama. And boy, are we glad you're home now."

It's been 5 years. This roller coaster life of autism. Garret was diagnosed April 2008, three months after I gave birth to Morgan. And Morgan, diagnosed almost two years ago. A slew of therapists, therapy sessions, teachers, methods. How do I briefly explain what a roller coaster life we have been living? Well, everything has been an adventure. And as all adventures go, it's full of unknown pathways, surprising rewards, terrible emotional breakdowns, severe testing of your faith and sometimes the losing of oneself in the uncharted ocean of humanity and a constant questioning of fate, destiny, determinism, will, choices, control, peace, joy and life in general.

The Autistic mind is a literal mind in more ways than one. It's part of their social impairment. They have difficulty understanding hidden meanings. So for the sake of those who want a clearer, more "literal" description of what living with autism is like, let me explain it in no other way than in literal terms. If only to put oneself in the shoes of my two boys.

It's like you wanting to go to an amusement park. And you line up for one of the many many adventure rides. You wait in anticipation for the excitement, the exhilaration you will surely feel, the fear of what could possibly happen to your body and mind while on the ride. The beauty and terror of it all. And you hold this conviction in your heart that no matter what happens, you will have fun. And you will have something to talk about afterwards. Funny stories. Good stories about the ride. So your turn comes up, you hand over your ticket to the operator. You climb into the car, buckle your seat belt, they put the protective gear over your head. And you wait. You hear the engine roaring to life and you are moving, slowly at first, dipping down moderately, and then, the tracks go berserk! And you are screaming your lungs out, "AAAAAAAAH" for enjoyment or "NOOOOOOOOOO!" for terror. "Don't stop the ride!" or "What the hell was I thinking?" And, when you think that you can almost die, you don't because the tracks suddenly turn itself the normal horizontal way. Until it swerves again and you are upside down out of your mind.

Do you get it now? Do you feel the sheer amazement and terror of that one adventure ride you chose to take? Well, I do. Every single day. And my boys do too. Every magnified second of everyday. I've been on the high end of the spectrum of hope for my boys and on the deepest end of the line of desperation. From wanting them to be "normal" at one point to accepting them for what the Universe created them to be at another more poignant stance. From looking on at other families who seem to have their boys recover from autism to caring less about my boys being able to speak and appreciating more what they have brought to my life-- a million life changing lessons that just about altered my entire universe.

Last night, I sang to my little prince-- "If you're happy and you know it, clap your hands..." He sitting on my belly as I lie down tired from the days' activities, smiles profusely his prince charming smile. I clap my hands and I say to him, "You do." I was attempting to do the new techniques our Speech and Language therapist trained me to do. Attempting and not really getting all assertive as I had no physical strength left to do a serious application from the lessons I've learned in the workshop. He looks at me and claps. Something he has never been able to do many years ago! And then we get to the point where I sing, "If you're happy and you know it shout, hooray!" I stop just before I sing the last "Hooray" giving him a chance to respond. And you know what, he just did. My little prince sang, eyes crinkling, grinning from ear to ear, "Oooo-ray!" And it seemed like my chest was pounded by some paramedic by a defibrillator, giving me what seemed like a thousand joule bolts and the life line on the monitor just went from one horizontal line to a jagged sign of life! And we repeated the song 10 times and each time, he shouted, " OOOO-RAY!"

With my renewed strength, I move on to Morgan. He jumping on the bed, I holding both his hands letting him now, I am with him, letting him take the lead. I say, "Yes, jump." "Morgan jump". I then kept quiet and waited. And he looks at me continues jumping and says, "UMP!." And I smile saying, "Good saying Jump, Morgan!" He looks at me some more, cheeks all pink and sweat beads forming on his upper lip, smiling his widest grin and verbalizing, "eh-yah". Bea?, I ask myself silently. My heart was beating loudly, assuring my brain, yes, he said your name. Again, it was as if I was jolted back to life. I joined my feisty king, I jumped on the mattress with him!

A slew of therapies, therapists, schooling. 5 years. 5 wonderful, adventure-filled years. 1825 days of beauty and terror. Amazement and desperation. Routine and crazy unpredictability. Hope and impossibilities. Compassion and cruelty from all around. Questioning my purpose, the reason for autism in my boys and sometimes definitive answers and affirmations and sometimes even more depressing answers. And this weekend just brought my roller coaster car to a momentary stop in the swerving tracks and onto a horizontal view of what lies beyond. Telling me, reminding me, "Look at the sky. Just look at everywhere around you. Everything is where it's supposed to be. The clouds floating up there, the sea glistening blue down there, the trees rooted firmly to the ground with their branches raised up in heaven as if saying, Yes! I am where I am meant to be." Like our speech and language therapist telling me, "Bea, just tell your boys what you want them to do once and wait for their response. Relax and wait." With this realization sinking in, I breathe deep. Feel every beat of my raging heart slowing down to a calm steady pace, assuring me with its every pulse, my purpose in this life-- my boys. Then the coaster dips again, round and round...And I guess, this time, every fiber of my soul is singing, no shouting in amazement and maybe with a little terror but always with a longing for more adventure---

"OOOO-RAY!" and yes of course, my heart is on its feet, no less than jumping! :)

Wednesday, May 8, 2013

Mama Said There'd be Days like This...

What does it mean to say "you have a lot of heart"?

I remember many years back, a reality show on boxing aired on a particular channel and what kept repeating from the mouths of the fighters were "I respect him. He has a lot of heart.", in reference to their opponent after the fight. For the life of me, I couldn't grasp what the hell it meant. Because all I saw was a bunch of men trying to beat themselves up and for what? Fame? Glory? A million bucks? Or all of the above? How can one have "a lot of heart" for that? I couldn't wrap my head around it and I just had to ask my other half. And all he said was, "courage, honey." And all I could reply was, "Oh."

I hate to say this but sometimes I feel that I'm in living in a live reality show. You know that feeling that you pretend that you really don't care about what other people say about you and your boys, you and your family and all your principles and all your values, but in reality, you do. Not because you thrive on other people's approval but because it's there. Like the elephant in the room, you can't shake the rest of the prying eyes of the world off. No matter what you do, good or bad, right or wrong, someone somewhere has something to say about you. And it drives me nuts every once in a while. It seems as if the reality show I am in is an everyday battle between my personal demons, the warring voices in my head, doubt and faith, wondering and believing, questioning and having vague answers at the very least, trusting in the process and trying to control it. Not unlike that boxing reality show. Several days of prepping oneself, doing the work, and then getting beat up in the end. Let me say it out loud. What the hell am I doing with my boys that is actually helping them? Why can't they still speak? Why do I feel that my boys are left behind? Even with all the intervention and effort we're doing, there's that nagging pull from my insides. Like I'm eternally stuck in one phase and the rest of the world is moving on. And finally, this one question, "What's the purpose of this all?"

I'm not afraid to admit it. This is one self-pity post. I'm not ashamed to admit it. "Because mama said there'd be days like this." It is easy to fall into the trap of this shadow. And wallow in it for a little while. Because there is no getting over some things, only through. And I feel in my heart, right now. What I need is this. To feel self-pity. To question why. To debate on the unfairness of it all. Why are some kids talking volumes of conversations with their dads coherently, smartly, smart-alecky, even profoundly? Why can't I have that? Why can't the father of my boys have that? Why must it be that I be the one to interpret their actions and turn them into words? Why can't they say what's truly in their hearts and minds? Why can't they get it off their chest so they wouldn't feel as confused and wouldn't need to only cry out their desperation? Why?

I just finished reading Coelho's Manuscript in Accra and this line is like a drill boring into my skull-- "When our legs are tired, the strength of our heart allows us to keep walking. When our hearts are tired, the strength of our faith will carry us through."

Right now. At this very moment that I am writing this, I am losing a lot of heart. My legs are tired. My mind is weary. My heart is fatigued. And I sure do not know where I put my faith. Where I lost it. Somewhere. Out there. At the back of my mind, I know it's there. It's like this impending fact that confronts me as if saying "You're going to fight tonight. And you're gonna get beat up, pretty bad, fall down several times, and the hand that the referee's going to raise, is not gonna be yours."

Living with autism. Surviving a day in the life of autism. Going through days like this. And many more days like this. And where am I amidst all this? Who am I amidst all this? Takes the life out of you sometimes, questions that bear no comprehensible answers.

Like my friend Kary just recently said, "love gets me through, writing gets me through, until then..." Last night I originally decided to write a post about courage and heart and love, all three shown in the very presence of my boys and I planned to write about my bliss which is them and everything happy. But maybe, now it's okay to write about the real shadows behind all that. If only to clear my mind, purify my heart, bring it out in the open, liberate me from whatever demons I have inside. And maybe even if I am writing not all about courage and heart and happiness now, I am making way for these three to come through, eventually. Cleaning out my closet, clearing out the cobwebs of my soul, quieting the beast in my heart.

"Mama said there'd be days like this." Behind all these turmoil of emotions I am allowing myself to go through right now, I know there'd be days of bliss to come as well.

Until then, I just have to keep up the brave face, continue doing the work, prepping myself and my boys, doing what needs to be done everyday. Even if I feel I'll only get beat up. Because beneath all the questions I am asking, underneath the river of self-pity I'm wallowing in, there will be answers. And the noise all around? They're there for good reason. What reason, I don't know. Nor do I want to know right now. Until then, while waiting for my bliss to come, I'm going to muster enough heart to get through the day.

Yes, I think, I'm finally getting the "having a lot of heart" part. Not all of it, but some of it, not for fame, glory or a million bucks. But maybe just to get through the day, one day at a time. And for now, that is enough.