Monday, October 29, 2012

The Illuminating Moon

The moon's out tonight
Clear as day
and that light!
Illuminating the clouds
Clouds that loom
Larger than life
Transforming into shapes
That come alive
Then my Garret
sees it
not unlike
The Little Prince
Yes, Antoine St. Exupery's
Gazing in wonder and awe
at the different planets
and kingdoms
My Little Prince
sees the moon as if
for the very first time
Fingers flapping
bunched together as if
trying to capture
that bright, white
Smiling, oh what delight!
Stepping on our garden
stones brightened
by that illuminating
Then I say,
"Look again, Garret"
Gently turning his head
He looks and smiles.
Silent, content
No words needed
I turn silent myself,
content--quiet joy.
No words needed.
Save for the moon--
speaking its language
illuminating strength
Illuminating my joy
Casting the brightest
light on
my prince,
on my life.

Saturday, October 6, 2012

The Ground Beneath Our Feet

Gingerly I walk out
of my little boy shoes
And onto the cemented
rough, crooked
And oh how I love it
I look around
with eyes wide,
What's this world like?
And then something
way up there
hovers in formation
singing, flying
and like me,
Mama tells me they're
birds in the sky
Oh and the sky!
bluest of blue
and wispiest whites
And wait till
dusk comes,
where way up there
turns lavender
Oh how I love
sunsets instead
And then I tread
on my little bare
feet onto our koi pond
freshly cleaned
Of course it's not
enough for me
to stare at the fish
or to just look at the water
I immerse
my little boy hands
and splish and splash
Still it's not enough
I need to feel it,
My whole body needs
it, the calmness
it brings, soothing
water, I go in
And then I sing!
Oh how I sing,
And don't even ask
when I'm on the
belt swing
I put my belly over it
arms hanging
then I swish
to and fro
As high as I
can go!
Then I get bored, so
I twist round and round
till it's tight
then I let go
with all my might
And it's round and round
again, spinning
And me laughing, laughing!
This is my world,
come join me,
See how fun
how beautiful it must be
For others may
call it sensory dysfunction
I call it feeling the earth
the wind, the water
for what it is
Some call it weirdness
I call it the natural order of things
Most call it unusual
But I call it
just breathing the air
that I breathe
feeling the ground
beneath our feet
I call it living our
lives as it should be.

I've long wanted to write about my boys' unique way of experiencing the world. By unique, yes, I do mean their sensory processing difficulties and challenges. Whenever Morgan takes off his crocs to play in our garage, I can see the satisfaction he feels as he treads over the roughness of the cement, walks over the big stones, and Garret too, as he just sits and sometimes even lays down on the ground. If there is one word that could describe my boys' countenance when they are experiencing the world in their own way, it would be this: peace.

Come to think of it, in our world full of immediate gratification gadgets, technology and everything automatic, we fail to really experience life as it is. The presence of technology more often than not seems to override our natural ability to learn things the experiential way as we used to. This is why every time I see my boys doing what they do, I am fascinated, awed and feel a certain sense of nostalgia. My boys remind me what life is really all about. The remind me never to let go of things that matter. They tell me everyday to always, always live life as it is supposed to be lived-- fully.

Wednesday, October 3, 2012

An Angel's Smile

I had to write this post if only to capture and carve this beautiful memory of one little girl's smile forever in my heart and for all to see or imagine at the very least.

It was yesterday afternoon when it happened. The afternoon special ed class at our center ended. And the kids proceeded to go home with their caregivers hand in hand. The last of them was our one of our three girls at the center. Their driver had not arrived yet so they waited in the reception area. I was preoccupied with something, some papers and stuff for the new kids to be evaluated by our visiting neuro-developmental pediatrician, when I heard the little girl's caregiver say, "Ma'am, diri lang sa mi mag huwat ha." (Ma'am, we'll wait for our driver here, is that okay?). I mumbled a quick "Yes, of course" to them without even turning my head. A few minutes later, their driver arrived. I heard the caregiver say, "Ma'am, ari na mi." (Our driver has arrived. We are going home now.) This time I stopped with whatever I was doing and turned to look at them. And boy, was I glad I did. "Bye, Sweetie.", I called out to the little girl. Her caregiver made her turn towards me and said, " Say bye-bye to Ma'am Bea." No response. She just looked at me with questioning eyes. I said again, "Bye Sweetie." Pause. One, two, three seconds later, her questioning face broke into one big smile at me! Oh how my heart leaped! Her caregiver said happily, "Very good, Annie! (not her real name)." Little Annie held my gaze for more than 5 seconds still smiling, then continued to walk towards their vehicle assisted by her caregiver. Even when their van drove away, her smile remained in my vision. The joy I felt still beating loudly upon my chest.

Annie has Rett Syndrome, a rare form of autism that affects only girls. Its manifestation is the slowing of head growth, loss of muscle tone, loss of the use of hands, a stiffened gait in walking, uncoordinated breathing, loss of language and social skills and seizures(

This information serves not so that readers can have some sympathy for our little Annie or perhaps comment, "How difficult her life must be.", but so you can see beyond the challenges that lay before her, the challenges that she is going through every minute of her everyday, so you can see the unbelievable strength that this little girl has shown despite the odds against her. And not only her strength but also the strength, patience, resilience and unconditional love of her mother and father and other family members and the most wonderful caregivers that take great care of her every single day.

I know for a fact how her parents strive to work very hard just to keep up with everything that she needs. And I'm not only talking about the financial aspects. The emotional strength that is required for this kind of life circumstance is immeasurable. I know for deeply loved little Annie is by her parents. If I were asked to define what acceptance really is, I would answer you, " Look at them and how they love their little Annie. " They would do anything in their power to protect her, nurture her, give her the best possible quality of life, love her in every conceivable possible way. And I know for a fact how great their faith is in the Universe, that everything has a purpose, and that everything will be taken cared of.

I take my hat off to Little Annie's parents, family members and caregivers. Their love, strength, resilience and acceptance is so amazing, beyond words. So powerful. I am deeply humbled by who they are and what they do. Everyday without fail. It makes me realize once again, there is a much greater force in this world, much greater purpose in this life than that of fulfilling personal joys.

Most of all, I am moved beyond words, beyond tears, beyond anything by Little Annie. I am humbled by her very presence in our center, in our lives. It reminds me once more to be grateful for every single blessing that I have in my own life, in my two boys, in my life partner, in my family. Her most cherubic smile has reignited the fire within me to do everything I can in my own way to make this world a better one for her, for my boys and all the other kids with special needs.

So you see, I had to write this post. Not only so I cannot forget the memory of that angelic smile of little Annie, not only so you can imagine what her life must be, not only so you can see the immense strength in her, but so that I can give Little Annie the salutation and celebration that she and her family so well deserve.

I'm sure Annie's family do not seek praise or commendations for how they raise their child, or how much strength they bring out everyday. Nor does Annie. They just want to live their lives the best way they can, the best way they know how. Everything else is just icing on the cake. But I have to share this to the world for another more important reason, a deeper cause. Because this is my own way of telling the world, encouraging and empowering other families out there similar to Annie's or ours to keep going, never give up, keep on praying, be steadfast in hope and faith.

I end this post with a quote from a friend:

"It is such a relief that the greatness I thought myself to be deserving of is my son." -Pete Owens-

In the end, after all is said and done, after everything we've endured, in all the joys we are blessed with, there is one life truth that becomes clear: the salutation and celebration that we once thought we were deserving in this life is not ourselves, but our children. They are the reason we are here. They are our salutation. They are our greatness. And we are all the better for this amazing truth.

Thank you, Little Annie. From now on, every time I start to lose track of my path, every time the questions of why return, I will close my eyes remember how you smiled like an angel at me, how you broke through the walls of autism surrounding you, I will feel your strength and remember the strength of your family and know in my heart how my boys, my family and I will, in turn will break through.