To A❤️

Every year, as the minutes and seconds wind down toward the end of December, we find ourselves with renewed anticipation for the waning days of the year. While Christmas passes sedately in an autism household that does not care much for- or cope with- rowdy and frenzied celebrations, this enthusiasm breathes new life into our holiday merrymaking. This eagerness, however, is not for New Year’s Eve, which will not be for another 24 hours. And certainly not for the first of the New Year, which is a day we all seem to both await and dread. For me and my family, the 30th carries far more weight than any other day of the holiday season, and with good reason. On the 30th of December, we celebrate A❤️’s birthday.

This is one of my favorite pictures of my husband. 😍

I met A❤️ when I was 14 (he was 13) at the Philippine Science High School. We weren’t classmates right away, just two freshies thrown together for a debate team. He was six inches shorter than me, and skinny to boot, with hair always slick wet from Vitalis. Not my type, for sure. 😜 Lest you start to feel sorry for him, though, allow me to state that the feeling was completely mutual. We became good friends, true, and somewhere down the line, we would become best friends, but we never saw each other as anything more than that for years.

We grew up together in the warm, nurturing environment of Pisay, where we were both free to become the geeks and nerds of our dreams. Talk was one thing we had in common. He and I would spend hours freely talking about anything and everything we thought of, and friend that he truly was, he allowed me to hog the conversations most of the time. He bore with me patiently, never mind that he once described me in my junior year slam book as loquacious and voluble, a kindness when I think of it, especially when he could have simply have said I talked too much. Even when he and I went to different colleges, we bridged our friendship with snail mail and calls he made on the pay phone at Bellarmine Hall.

On his 19th birthday, he finally noticed I was a girl. Maybe the chocolate cake I brought to his birthday party did the trick. Maybe it was that single “happy birthday” kiss on his cheek. I don’t know why or how it happened, but having just come back from an extended stay in the United States, he said he woke up one day feeling like he couldn’t breathe without me. Thirty one years later, he says he still feels the same way.

And this is why when the 30th of December rolls around, I am reminded of the greatest gifts the Lord has ever given me- the gifts of undying friendship and unconditional love. This man has seen me at my worst, at my ugliest, and at my fattest, and yet he loves me all the same, cellulite, stretch marks, wrinkles, and all. He has stood by me through our difficult days, leading by example and with such faith and trust in the Lord that I myself did not possess. His is the hand that has pulled me many times from the brink of despair and the edge of sorrow. Today, many years after that day he first told me he loved me, he continues to show me what the meaning of true love is. I only have to look in his eyes to see.

Happy birthday, A❤️, my love, my best friend. I love you so.

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Journeys

I came home on Sunday afternoon, rejuvenated, refreshed, and with a newfound sense of purpose, from the Son-Rise Program Start Up, the very first in the Philippines. For the five days I was away from my family, I learned new things, made fast friends, and gained a whole community of support. Over a hundred parents participated in this life-changing program, each one with a different, yet completely relatable, autism journey of his/ her own. In those five days, we learned to shift our mindsets to a new paradigm, forever altering the way we see our interactions with our children in the autism spectrum.

With Ron K. Kaufman

On our last morning, before we all said goodbye to each other, we wrote letters to our children- letters of affirmation, of commitment, of love- and some bravely shared theirs with us. It took all I had not to dissolve into a blabbering, whimpering crybaby as one father said “I would go to hell and back for you.” I still get teary-eyed when I think about it.

Last night, as I said my bedtime prayers after another long day with Alphonse (yes, it’s him and me again!), it struck me how apt and how perfect that line was. Alphonse was reticent and distant the whole day, ignoring me most determinedly. My absence had hurt him, and I knew he was not going to let me back in his life without an apology, which I gave, repeatedly. No dice. He also wasn’t feeling well and a sudden tummy ache turned into a “poo-nami” (think tsunami, but poo😳) at dinner time. While he writhed in what I can only assume to be colicky pain, he threw our dinner to the floor and spilled everything within reach of his hands. Then, he looked at us expectantly, waiting for our reaction. While I silently perused the scene of devastation, A❤️ kept his composure and reached out for Alphonse’s hand. Alphonse took it. My husband helped him get cleaned up, but Alphonse had several more poo-nami episodes that didn’t reach the bathroom just in time. A❤️ patiently washed our son, deftly steering him away from the remains of food and waste on the floor.

It wasn’t the homecoming I expected. After being away, I wanted Alphonse to run to me and act like he missed me. He did kiss and hug me once sincerely, but he moved away just as quickly, eyeing me suspiciously from the corner of his eye. I was hurt, truth to tell, and disappointed, but as my husband talked to Alphonse in a low, soothing voice, I saw in him the lessons I picked up from my time with Son-Rise and, like him, drew strength from love. Even after Alphonse was clean and had drank oral rehydration salts thrice, A❤️ had to scrub a whole section of the house for an hour before it was clean. We had to move furniture to make sure little bits and pieces of our dinner weren’t left for mice to feast on. He scrubbed the floor with bleach and soap and water to remove all traces of poo and I mopped up after him. I laundered the stained chair covers and table mats in one cycle and hang them up to dry. Later, I headed to the kitchen for my hour of washing up and A❤️ followed to help with the rest of our chores.

I realized this is what it means to “go to hell and back for you.” Because every single day, we do. And we do it without complaints, without begrudging him anything, and with much joy and enthusiasm, because we love Alphonse.

Before I finally fell asleep, I remembered something else. I’ve been meaning to write about this picture but a fog had settled in my brain. Anyway, I was sorting the photographs in my camera roll a few nights before I left home last week when my eyes wandered over a particular picture. It was one my husband took while we were in Taipei two weeks before that. It was part of a series of similar pictures- same pose, same squinty smile, same background- and were it not for the figures on the right side of the photograph, this particular photograph would have ended in the deleted pile along with ten others. For some reason, my eyes lingered on those two figures and stayed there.

I drew on my recollection of that day to place them in the picture. On that cold morning, as A❤️ and I ambled along while taking photographs, I didn’t even know that the camera had caught them. What I do remember most was the sound of a male voice mumbling slowly in a monotone behind me as an older female voice talked soothingly and calmly. I remember whirling around to catch a glimpse of where the voices came from. I remember seeing an adult man and an older woman holding hands as she gently led him across the wide main road, talking him through it. I remember thinking that anywhere in the world, a parent loves his/her child with special needs, and this love, while most unique and exceptional, can also be quite common.

Take A❤️, for example. Or the old Chinese woman with her adult son. Or even the father who choked back his tears while reading his letter to his son.

“I would go to hell and back for you.”

Yes, we Will.

Yes, we Do

25

img_3090_20150917I woke up in the middle of the night to a bad dream. I’ve been having a lot of them lately, it seems. I woke up groaning, almost falling down my side of the bed. I reached out to you and snuggled closer, burrowing underneath the sheets, my leg beneath yours. Instinctively, you reached out for my hand and pulled me closer, my hand over your heart. I felt the slow, regular rhythm of your heart through my fingers. In the darkness, I listened to your soft snoring. I counted your breaths till mine matched yours. I closed my eyes to the blackness around me, no longer afraid, because you were there.

Once upon a time, I wondered if love would ever find me. I had been hurt before- yes, duped and dumped- and my heart had been broken many times over. I found love where and when I least expected it. I found it freely given, without expectation of return or reciprocation. I found it stripped of deception and subterfuge, offered honestly and wholeheartedly. And I found it with forgiveness and unconditional acceptance, in a friendship bound by time, loyalty, and a shared history.

img_3111_20150906And what a history it has been. Our friendship has spanned these many years since high school at Pisay, past bitter rivalry and devastating heartbreaks, beyond lonely separations and joyful reunions. From that very first time we met (I was 14, you were 13) to the day we started a new adventure as husband and wife, ours has been a journey of all good things born of our friendship. We made a family. We helped our sons grow. We built a home and set down roots into the deep, hard ground. We stood against challenges that would have bowed and bent many. We not only know each other’s life stories; we have written ours together.

papa-and-mama

The heart has no wrinkles. 🙂

All this, and always with your hand in mine.

Today, 25 years to the start of our lifetime together, I am in awe at all we have done together. Thank you for always believing in us. Your unwavering confidence in the inevitability of us, your certainty of who and what we could be together, and your faithful, constant love have healed my wounds and changed me for good.

In you, I have found redemption every single day.

With you, I have found us.

Happy 25th to us, hon. I love you so.

There’s No Easy Way to Say Goodbye

We were going to do some grocery shopping Saturday afternoon, not a lot, just the usual eggs, bread, and milk for the coming week. Because it had been a long, tiring ten days since we got home from our vacation, A♥ said “Maybe we can take in a quick movie too? We won’t be long.” I didn’t even think about it. I said yes right away.

Alex was home to keep an eye on his brother and we had temporary care lined up to help Alphonse. I couldn’t resist the lure of a movie to distract us from the daily grind. And it was a real date, even if there were groceries involved.

I hurriedly changed into a new outfit I had been saving for the next date- a pair of tattered jean capris and a loose white cotton blouse I had purchased in Fuji on sale. I took out my hair rollers and gave my hair a quick run through with my fingers. I dabbed some sunblock, laid over a primer, and worked through my makeup as fast as I could. When A♥ saw that I was ready, he grabbed his keys, flashed me an OK! sign, and gave final instructions to Alex for his brother’s care. And then we were off. Almost.

When we reached the bottom of the stairs, we ran into Alphonse on his way up. He was humming a wordless ditty but upon seeing us, he stopped. He looked at us- first at me, then at A♥- and took in our clothes and the makeup on my face and then, just like that, it seemed as if a universe of happiness was sucked out of his whole being. His back bent into a stoop, his shoulders slumped, his hands stopped flapping. As he became still and small, his eyes turned vacant and glassy. The corners of his mouth drooped into a sad little pout. He didn’t make a sound. If I could describe what betrayal looked like, I’d have said that Alphonse, at that very moment, personified all its hurt and sorrow.

Despite my promises to return with presents for him, he just stood there, staring at us, that same sad, wretched look on his face. If he had grabbed at us, perhaps, I would have been firmer and maybe we would have made it out the door. But that afternoon, when it was all too possible he was still wounded and hurting, he needed, nay, wanted, us to be there for him. How could we leave him?

A♥ took command and got Alphonse dressed and ready to go in no time at all. The three of us headed to the grocery store and ran our errands, the movie and date forgotten casualties of parenthood. We passed by McDonald’s for a treat before we went home. Alphonse was quiet, but he was smiling again.

Later that night, as Alphonse hovered around us again, I asked him a few questions.

Mama: Alphonse, are you sad when Mama and Papa leave you at home?

Alphonse nodded.

Mama: How do you feel? Ouchy? In here? (I point at his heart.)

Alphonse showed me this.

Alphonse crying copy

Once in a while, this nonverbal, profoundly autistic young man opens up to the world and it is a rare, amazing insight into his heart and mind.

Don’t be afraid, son. Mama and Papa will stay as long as we can.

Sundays with Alphonse

blog 01Since A♥ started working farther from home last year, weekends have been used for one of two things: running errands or sleeping. Our date and movie nights have suffered seriously because of his schedule, but we’ve adjusted by turning our errands into dates, and our sleeping days into lazy dates! Winking Face Emoji (Twitter Version)

Of course, with Alphonse around, we’ve been hard pressed to find time for these “dates” so we’ve taken to bringing him with us when we can. It’s not a mean feat preparing him for a few hours of the outside world; aside from the mental and emotional preparation, there are the physical ones we have to overcome first. Packing a bag of essentials is a must; his carry on usually has a  change of clothes and underwear, his PECS cards, bubbles solutions-a bigger bottle for refills and a small one with a wand, a small towel, wet and dry tissues, snacks, and a a reusable adult wee bag for those times he cannot wait. (The iPad is optional since he tends to use cards more but it does come in handy for social stories.) The car is also prepped with extra golf umbrellas (to form a makeshift cover for him when the calls of nature come suddenly and unannounced) and cushions and pillows to prevent headbanging.

Yesterday was one of our errand days but Alphonse also needed to get out of the house. He has been acting very angsty since A♥ went on an overnight work trip last week. We figured a little time outside with us would help calm him down.

We left the house later than we planned. The sun was already high and hot above us when we left but Alphonse was in good spirits. Aside from picking up our week’s rations of vegetables from the supermarket, we had planned to drop by to visit Dad at the cemetery and A♥’s Mom at the nearby church ossuarium. The last time we went to Loyola, Alphonse couldn’t wait to get back in the car (it must have been the heat), so we were happy to see him stay for a while. We were even able to say our prayers before he signaled for us to go.

Alphonse 22116A

Alphonse brought flowers for Lola, Great GrandLola and Tito Lolo. ♥

And then came his favorite part of the day- grocery shopping! I wish I took a video of how he helped us choose and bag vegetables. He was quite the helper yesterday!

Alphonse 22116C

Alphonse stopped by the CDO hotdog stand and asked for one. Mom had to hold it lest he swallowed the whole thing in one go. He wasn’t too happy about it though.

We made a few more stops for pancake and rice cake mixes before we headed to the check-out lanes. When Alphonse got the cart near the counter, he suddenly broke out in loud, uncontrollable laughter and shrieks. And then he grabbed four Kit Kat bars and hugged them close to his chest! Ah, this young man is a little boy at heart (and mind) still! You can see his smiles below; they’re truly the most heartfelt of smiles.

Alphonse 22116B

The sweetest smiles are reserved for his Papa… and Kit Kat. ♥

Having less people around Alphonse has allowed him, by necessity, to gain a measure of independence. We’ve gone a long way from when Alphonse could only look at the world from the inside, peering through windows and watching life pass him by. These days, he is happy to mingle and take part- however limited the interactions may be- in the world around him. And we are happy to hold his hand and make this journey possible for him.

I wish all days were like Sundays.

 

 

Alphonse at 21

I can’t believe you’re 21 today, son. I can’t believe we made it this far.

Happy birthday!

Many times, over the years, I often wondered if we would ever get past those years of heartbreak and violence. I wondered if we would live to see this day, if we would ever reach this point when we could look back with relief and, yes, gratitude, that we made it through those long stretches of heartache. And mind you, son, we have lived through much.

We’ve had times when our whole world was in shambles, when we lived in sorrow and darkness. We wept for days and clung to each other in helpless surrender. We forged through your terrors and rage. We loved you, always, even when anger blinded you and fear made you reject and push us away.

Now, here we are. Twenty one years into a life we never knew could change us so much. A life with you. A life with autism. A life shaped by adversity, tempered by grace, made whole by love.

Thank you, Alphonse, for all that you have brought and continue to bring to our lives. Thank you for teaching us to love unconditionally, without hope of return or reciprocation.

Thank you for showing us the limitless spools of our patience. We have learned to wait and find joy in the waiting.

Thank you for teaching us to endure, to be steadfast and unwavering in our fortitude and faith.

Thank you for teaching us to bend, to kneel, and to submit wholeheartedly and with all humility to the One who gave you to us.

Thank you for bringing out the best in us. Who knew that Mama, your scaredy-cat mother, had strength and courage? That Papa, firstborn and strong-willed, came with an inexhaustible supply of steady, constant patience?  Or that your Kuya Alex, your big, burly full-bearded brother, was capable of so much spontaneous outpouring of gentle love? Your presence in our lives allowed us to find these wellsprings of kindness in our hearts.

Thank you for showing us the pleasures of little things, the wonder of tiny miracles, and the sheer delight that comes from just being alive.

And thank you, for knowing and finally accepting our love, and for loving each one of us back with your kisses, hugs, and many more quiet acts of tenderness and love. Yours is love in action, our son.

Happy 21st birthday, Alphonse. Ours has been a journey of unbelievable, unimaginable adventures and it has only just begun.

We love you always.

Alphonse as a newborn, two weeks early, two days late
alphonse 02 copy

Loved since birth

alphonse 03

and loved always, even when autism came (diagnosis at 18 months old).

when autism came 01

Cute and cuddly, (and wearing Mama’s baptismal dress), falling in love with this little baby was always easy.

Alphonse as girl

But as he grew older, he developed differently. While typical little boys play, he would prostrate himself on cold floors for hours at a time.

when autism came 02

Our baby went to school earlier than most, his days revolving around therapy centers and special education. 

Alphonse toddler

At his school, he was the youngest child to be diagnosed then.

Alphonse cutie

Alphonse was different. His fascinations were different. He loved twirling the plastic rotor blades of his Fisher Price helicopter.

Alphonse teddy 01

But there were times we could almost pretend we were “typical” and “normal,” and have our pictures taken like regular people… 

alphonse 51a

Even as his interests grew differently from his peers. He has always loved water and could spend hours playing with the hose.

Alphonse and the Hose

And pieces of string and twirly slinkies could keep him preoccupied for hours.

Alphonse teddy 02

With autism came periods of stress too, of self-injurious behavior, which caused us grief and endless worry.

Self injury AlphonsePicture copy

But his gorgeous smiles always made the hard times worth it.

alphonse 71 copy

Bestowed with the gift of beauty,

alphonse 72 copy

yet often fierce and funny,

alphonse

this boy spreads joy with just a smile.

alphonse 03

And as he grows older,

Alphonse

and bigger,

My Alphonse

wiser and stronger,

Alphonse at work2

may his smiles remain with us

Alphonse and mama 02

to give us light when darkness comes

Alphonse 031315

and to bind us in love and kindness always.

alphonse summer 03

Happy birthday, Alphonse!

VM 02

We love you so. 

 

To Anthony

I woke up this morning giggling myself silly. For some strange reason, I awakened at five in the morning, still laughing about the last thing we said to each other last night. The barely-there light, filtered softly through dark curtains, was urging me to stand up and start our day early but the bed was still warm and inviting. I reached out in the darkness to touch your face. You stirred gently in your sleep, eyes still closed, but your hand found mine and drew it to your chest.

In one seemingly innocent movement, one we’ve done over and over again for many years, you reminded me that wherever we may be, for as long as you are with me, I am home.

For you are my home.

A few minutes later, you woke up too. Our bodies are now so in sync that a movement from one instinctively sets off a corresponding reaction in the other. You pulled me closer for an embrace; I closed my eyes and wrapped my arms around you. And then, awake and already hungry, you spent the next twenty minutes talking me into getting breakfast. At six in the morning. *groans*

We were among the first in the restaurant, thanks to our early start. Most days, breakfast would be part of our ordinary routine but today, well, today is different. It’s our 24th wedding anniversary, and each meal, no matter how simple it is, feels like a celebration.

Over breakfast, I found myself sneaking glances at you repeatedly. I looked at every line, every mark of your face, and marveled how each is a measure of our life together. Alas, we have grown old, honey. But we have grown together, forever changed from the young innocents we were at fourteen to the middle-aged adults we are now.

I am grateful, honey, for each day of the last 24 years. For while many things have changed, so many more have stayed the same. I wake up each morning with you by my side, still holding my hand throughout the night, keeping the bad dreams at bay. Yours is the face that wakes me up each day and sees me to dreamland each night. And your love- for me and our children- is the constant that drives me to see the beauty and mercy of each passing moment. I am forever changed by your love.

Thank you, Anthony, for being my love, my comfort, my home. I love you.

 Papa and Mama 02