Thursday, March 31, 2011

Newspaper Dance

            Find a partner. When the music plays, we dance to the music. When the music stops, we hold on to each other, our feet tiptoeing on that wad of newspaper. And we don't move or breathe for a moment until the music starts again.  Fold newspaper in half. Music plays again. We dance again. Music stops.  I carry your laughing, giggling body this time. You have so much fun dancing and seeing all your classmates dance that when it's time to stop, you cannot stop and you laugh. My heart, in turn, is filled with overwhelming joy. You are truly enjoying the game. And we are connecting like never before. Black Eyed Peas is blasting through the speakers, you smile all the more. We hold hands and swing and sway. Then the music stops again. This time I tiptoe on one foot while carrying you and both of us laughing our hearts out until we fall over breathless. We are out of the game. It doesn't really matter if we didn't win, we had the time of our lives.

           This was 5 days ago. But the euphoria and elation still remains with me. Garret had so much fun during his classmate's birthday party. I do not know if he understood it was a party, or if he even understands the word party, much less a birthday. But what I do know is that he was truly, truly happy. And at that time I didn't even feel the need to proclaim it to the entire world. In reflection, this dawned on me: Life is and should be like a newspaper dance. As the world spins and goes on its daily grind, we need to have a partner who we can dance with, rejoice in our joys, weep with our sorrows, and live the life Grace has given us. After all, joy and love have more meaning when multiplied, does it not? And when the world , as it seems, ceases to turn, and turns its back on us instead, we find strength in that one person, whether it is our partner, mother, father, son, daughter, cousin or friend. We hold on to them and they hold us firmly, tightly so we can hang in there, on our tiptoes. When our grief overwhelms us, they carry us and step on that tiny wad of newspaper for us.  Until the music plays again. Until our world is right side up again. Until we can finally stand on our own again. Until the music of our lives resumes its beautiful, melodious harmony. The tears finally dry and we see how life is all the more rich and majestic like it has just been redecorated and renovated just for us. And yes, it's not about winning. It's not about the end prize. It's about the process, the whole step-by-step how-to-play the game. It is about the journey. It is about how much joy we have given to other people's lives and how much joy we have, how much we appreciate and how much we celebrate our lives.  But most importantly, it is about the people we have in our lives who get us through all the rough seas, calm waters, uncanny roads and smooth highways. It is about the people we decide to love. It is about the gifts the cosmic heavens has bestowed on us--the gifts which can only be seen when we open our eyes, look at our hands and when we are intensely aware of the hands that hold us, the arms that carry us.

          This is a toast to friendship, to love, to the people to who have held me and firmly planted my feet on the ground when my world spun out of control. But most of all, this is for Garret and Morgan and to my partner, Andro who has made me hear and dance to the beautiful, beautiful music of life.

Saturday, March 26, 2011

He will Make a Way

With love and strength for each new day, he will make a way, he will make a way....

I clearly remember in the days before Garret's first appointment with his developmental pediatrician. I was anxious, desperate, weak and lost. It was like a cloud was hovering over us and there was no promise of sunshine anytime soon. Fear of the unknown, they say is the worst kind. We were entering into a whole new world. The world of autism, which at that time was almost like learning a foreign language with no dictionary or interpreter. Desperate. I was desperate for the doctors to tell me that there was nothing wrong with Garret. Desperate for the doctors to tell me Garret is just delayed and will soon grow up to be like any other normal kid. Desperate for things to be as normal as possible. Desperate for our dreams, my dreams for my son to come true. I was weak to the very core of my being. I felt the world has turned its back on me. I felt I was standing on a "walkator" without the handrails, and my knees would buckle anytime and I felt I couldn't gather enough strength to stand. And I felt lost. I did not know where to begin healing my son. I did not know where I could find the ultimate "medicine man" to make the pain go away. A roller coaster of emotions to describe my very human state was an understatement. At that time, I thought, "Could motherhood really be this arduously painful?" The unfriendly cramped space of the doctor's clinic confronted me with no answers. I would slowly find the answers three years later. Today.

A passage once said that when we are most besot with burdens and we look at the sand beneath our feet, and only one set of footprints appear, it is when God is carrying us. Maybe it is just that we are overwhelmed with grief that we do not realize that we are being carried. Carried to a place of a higher purpose,  to a place of peace. Now more than ever, I am awed by the realization how I have come to this place of deeper understanding, a purpose greater than myself and most of all this place of peace.

As unknown and unfamiliar autism was to us back then, it drove Andro and me to learn all about it, to understand it and to an great extent appreciate the very nature of this phenomenon. Yes, I call it a phenomenon. Garret is the most beautiful phenomenon in our lives. His unique and mysterious world is our world. He is our Garret, no matter what. And more importantly, it has driven me to share my anxiety with other mothers at our center who share the same fear of the unknown. I tread on careful steps and I affirm the validity of their fears. And I tell them, "It will be very difficult, but you will be alright."  When they tell me how other people make fun of how their child flips his hands, I tell them, "Why don't you flip your hands as well? Find joy in your child's joy. Mark your territory and show them it is they who are odd and ignorant. Enter your child's world and realize how fun it is to  spin around in circles." Unravel, discover, enter his world.

Desperation? I realize now how the doctors gave me the most unlikely blessing in the most thick of disguises. They were actually telling me, "Your child is one and unlike any other." Of course back then, I couldn't have interpreted it as I do now.  And, yes, honestly speaking, isn't normal boring? Maybe God thought Andro and I were overqualified for "normal". As fiery as our personalities are, maybe we were born to tackle the extraordinary, the not-so-normal, the eccentric, the unique and challenging, to say the least, world of autism. Of course, three years ago, these awakenings were far from entering my mind. Discovering the blessings behind the burdens do take time. For some, a very long time. For others who know how short life is, it takes only one blink of an eye. This is my personal quest, to see the blessing in everything in just a split second. This is now my desperation. I am desperate to see the extraordinary and the potential and not to dwell in the mundane and and the frail.

The loss of strength. To a fault, I needed to control all things within my grasp. I had a fixed idea of what my child should be, how he should act, what he should eat, how he should love, how he should live. How very wrong I was. And this is why I felt weakest. I forgot one infallible thing-- a force greater than my human brain and disposition governs all the workings of the universe. Literally, God knocked me off my pedestal. Humility--weakening of pride. Loss of pride. So the next time I feel like falling on my knees, I will willingly prostrate myself. I will let go, and let God. Garret is God's child. Only now do I fully understand my mother's words many years ago--"Always pray that you will become what God wants you to be." Garret will be what the universe wants him to be.

Finding our way to healing. Angels are all around us. You just need to know where to look. There was no miracle medicine man. There were no pain relievers. But there was and still is love all around us.  And Love is the ultimate healer. Even when Andro and I were at the end of our rope, these people held on and loved us and prayed for us unceasingly. Mama Nanette with her unconditional support, understanding and affection. My own mother-- Mommy Gar, with her millions of prayers and unwavering faith, hope and love that holds me together. Ate Anna, the sister I never had, ever so sensible and full of wisdom and Kuya Troy assuring us how our boys are loved so much. My brother, Kuya Jon and Ate Trina, whose words I will never forget, " God will make a way, when there seems to be now way."  Their quiet and reserved strength, well-thought of reflections has strengthened me numerous times.  And yes, Papa Ching and Papa Suy An. Oh, how I wish you were still here to see your grandsons, Garret and Morgan. Every day we feel you embracing us even as we are rejoicing or breaking down. You are our angels. You are our boys' angels. The love of family and friends is our compass and Love is the ultimate healer.

Three years has passed since that fateful day when the doctor told us that Garret belonged to the spectrum. We've come a long way. There is still so much more to learn. So many transformations to create within ourselves- Andro and I. There is  still more healing to do. More pride to break down, more love to give. And as broad as the autism spectrum can be, so great our resolve, faith, passion and heart must be. For our boys, Garret and Morgan.

God will make a way, when there seems to be no way, he works in ways we cannot see. He will make a way...he will make a way...

Wednesday, March 23, 2011

The Wind, The Sun and The Sky

Stimming, giggling
Softly laughing
Amidst the backdrop
of dusk, sun setting
Puppies run, rolling about
Prancing, leaping
My Garret reveling
in such simple pleasure
Such quiet, candid joy
And the winds,
they too are whispering
Chiming to the sky
Smiling, I presume
Silence, serenity, peace
This is all I feel
watching him
calm and contented
like nothing else matters
only the wind, the sun
and the quiet, quiet sky
Does God speak to us?
I have often asked
Today, I have my answer
Yes, he speaks.
He speaks to my son
In the wind, the sun
and the sky.

Thursday, March 17, 2011

Rainy Afternoon Reflections: Baruch Hashem!

         It is late afternoon and the rain is pouring down seemingly never-ending, cold air blowing. But I am warm. I'm home with my two boys, watching their all-time favorite movie, Cars. Morgan snuggles beside me, Garret on the other end of the sofa, his two feet digging under my legs. I look at the two of them, I close my eyes and whisper, "Thank you. Thank you for my two boys. Baruch hashem..."

         Baruch Hashem is a Jewish tradition thanking God one hundred times a day for every positive or negative thing that happens in our lives, thanking God for life as we know it. The one profound blessing that autism has brought into our lives is a greater appreciation of all things that has come to be, good or bad, beautiful, terrible, triumph and tragedy.  Much to be thankful for.  My prayer for the past few days and for the coming days until I run out of things to be thankful for, which is impossible, will be this and a hundred more:

        1.  For Garret's uniqueness--he is absolutely unlike any other kid. Baruch Hashem!

         I used to compare my child to his typically developing peers. Thoughts like, "Garret should have been learning how to read right now. He should already have been telling me how his day went in school right now" used to bombard me and it has brought me nothing but frustration. More importantly I realize I failed to see Garret's light and ability and instead focused on his disability.  Garret does not deserve to be compared to any other child. He was born unique, thus there is absolutely no basis for comparison. He may not know how to read yet, but in one of many rare moments, he has shown how reading abc's is just a tip of the iceberg. One time I was visibly upset and crying, he approached me and carefully put the hair covering my face behind my ears and touched my face in the most gentle of ways and mumbled words only he could understand as if to comfort me. Garret knows how to read my emotions. He soothed my pain in a way that no other person could at that time.  He certainly is my little prince. Baruch Hashem..

       2. For temper tantrums and meltdowns-- stretching my patience, expanding my tolerance. Baruch Hashem!

         I used to have crystal clear ideas how to discipline my child should the situation call for it. I decided back then not to spare the rod. I'm the mother therefore I'm the one in charge. I decided that if I have to scream at the top of my lungs at my child to prove my point, then I will. If I have to spank him, then I will. This was before. This is now.

         Garret wants to do something. This time, playing with water in a bottle in front of the t.v. was his choice. So he taps my arm and gestures for me to open the water bottle. Of course, I do not need to explain why I should refuse him the pleasure. But he does not understand. He insists. I continually refuse and tell him, "Not now, Garret, tomorrow during bath time only." As expected, he cries and whines. I ignore him. Reacting to him in a violent or in an angry manner only reinforces the behavior. I keep telling him in a calm voice, "It's ok, Garret, let's play something else." He tries another tactic. He screams at the top of his lungs! "Aaaaaaah!" I stop myself from giving in. He tries to slap me. I immediately move away and continue to ignore him.  Eventually he tires himself out and quiets down. In the process of his cooling down, my heart is screaming to hold him and tell him it's ok, but I have to control myself. He has to learn how to soothe himself. And he needs to learn that things don't always go his way.

            My patience has been stretched and my effort to understand his autism working has expanded. Thank you God for allowing me to be a better mother. Thank you God for teaching me how to teach my son tough love. Maybe not in the most conventional of ways, but still tough love and more importantly, LOVE, nonetheless.

3. For words unsaid-- for actions that matter more. Baruch Hashem!

         When Garret is happy, he smiles his heavenly cherubic smile with the twinkle and sparkle in his eyes that none could compare. He laughs his belly-aching laughter if he wants to. Especially when his father tickles him to bits. When he sees Andro, he is ecstatic. It means it's time for play and rough housing! Andro tosses him to the bed and he bounces off it. His father hugs him tight until he can't take it anymore, turns bright red and they dissolve into fits of laughter. He absolutely loves this. Every time this happens, I declare, "Garret is happy!" I don't know if he knows the meaning of my words, but I declare it with joy nonetheless to whoever is listening. I am the wordy one after all.  His father, on the other hand, is the "action" man (hmmm sounds like a super hero ;-).  Garret cannot say these words, yet he shows it in the most explicit of ways. There is no way to misunderstand him when he is in his joy bubble. Of course, the opposite of happy tries to pop his joy bubble everyday. When he does not like the show on t.v., he turns it off. When his brother Morgan whines for no reason at all, he approaches his brother and tries to close Morgan's mouth, just like the t.v. switch!!! And when he is angry, you guessed it, he has no problems telling you off in his own nonverbal way. There is no miscommunication here.  Or maybe Andro and I have grown to be experts of understanding the language of our son.

          Thank you, God for teaching Andro and I to be persons of actions through Garret's unsaid language. For making us understand that to love, grins, laughter, tears and tight embraces are enough. Baruch Hashem! For both Andro and I to realize that we need to say what we want to say because we are able to. To show our love for each other in the most concrete of ways because there is no other way to show it. To listen to unsaid words and hidden hurts,  and to start loving each other better now because there is no better time than today. Baruch Hashem! 

            In a little while, Andro arrives. Garret has spiked a slight fever and is lying down on the sofa. Morgan runs around the house. He carries Morgan. As usual, the naughty one, he wriggles free and prefers to run around the family room. He then approaches Garret and starts to tickle him. Garret with his fever and all smiles and giggles his heart out. Rain is still falling outside. But I am warm. We are all safe and warm. Baruch Hashem!!!

(Thank you, Elaine Hall, author of Now I See the Moon, and creator of The Miracle Project, for inspiring me through your experience written in the most profound of words. You are a God send.)