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Journeys

19 Dec

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

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One (Wo)Man’s Trash…

9 Dec

Is another (wo)man’s treasure.

I’ve been meaning to get a new case for my phone but I was too stingy to spend for one. I saw some really nice ones in Taipei just recently, but with the peso at a low, it just didn’t seem to make sense to spend for non-necessities right now.

So I made this.

Trash- packaging of Hello Kitty shampoo- turned into treasure- an upcycled iPhone case. What could be cooler than recycling?

The A- Team

18 Jun

An elderly man hurries down a flight of stairs, a packet of medicines in his hand. He stops by the kitchen to get a glass of tepid water and heads to his sons’ room. He opens the lights in the room and picks up things as he makes his way through – a towel left on the floor, a bubble wand thrown under a chair, even a shirt stuffed under the table. He nudges both boys awake, gently calling out their names. The younger boy meekly accepts his medicine, his first in a series for the day, as the older one holds his water ready for him. 

A young man unwraps a sandwich and cuts it into small pieces. He lays the pieces gently into a small plastic plate before handing it over to his younger brother. He wipes his brother’s mouth every now and then and catches falling crumbs on a tray. If he isn’t fast enough, those crumbs are eaten as fast as they are found, even if they’ve found their way to the floor.

The elderly man sits on an old armchair, visibly tired from a whole day of work. It is nine in the evening but his day isn’t about to end just yet. In his left hand, he holds his phone as he checks email and responds in real time; in his right, he holds a towel and clean underwear as he waits for his son to finish his after-bathing “touching” rituals. 

It’s three in the morning. A young man shrieks as the top of his lungs, singing, nay, shouting, his wordless songs. For some reason, he won’t, or can’t, sleep. His big brother, eyes bleary from the lateness of the hour, sits with him patiently as he tires himself out. It will be morning before they even get some sleep. 

This is what every single day is like in my home these long, hard days. And these men are my lifelines to the world. They are my A-Team. My Autism Team. 

Living with a loved one with severe disabilities is not for the faint of heart. Alphonse is 22, a grown, strapping young man by physical appearance, and yet, he remains a young child in many ways. He needs assistance and supervision in almost every aspect of life, from eating to toileting. He needs help asking for things and in getting them. He can’t be left alone for a single second as his compulsions almost always overcome any measure of restraint in him. 

Day in and day out, we work to help Alphonse find peace and joy in this turbulent world. And while I may play a small part in Alphonse’s life, in truth, it is Anthony and Alex who make our challenging lives work. They carry the weight and burden of caring for Alphonse as much as I do, maybe even more. 

Some would judge Alphonse as as unfortunate individual because of his disabilities. I happen to think otherwise. Alphonse, for all his limitations, is doubly lucky because he has the unconditional love and patient service of his father and brother. 

On Father’s Day, I pay tribute to his two fathers, two of the bravest, most loving men I’ve ever known. Would that every child gets loved the very same way. 

“If everyone helps to hold up the sky, then one person does not become tired.”

An Extraordinarily Ordinary Life 

1 Jun


I woke up at 8:25 in the morning, the telephone ringing loudly in my ears. I snatched the handheld from its cradle and answered the call. My daily alarms are set to 5 and 8:45 in the morning; I try to catch some Zzzs in between. I rued the lost 20 minutes as I stretched lazily in bed, thinking of all the chores that were waiting for me. We’ve been without nannies and household help for a while now. While their services were appreciated, it seems as if they’ve become more trouble than help of late as we bent backwards more and more over their demands. Going without help has gotten easier with everyone willingly pitching in, but my days have not necessarily gotten shorter as I obsess continuously (and sometimes needlessly, I have to admit) over unfinished chores . 

Today marks my 50th birthday, and were it any other year, perhaps all I would be thinking of would be a visit to the salon for cut and color, maybe even a manicure. And while I’d still be busy with housework, I would also have the luxury of time to get ready for a birthday date with my husband late at night. Instead, all I can think of as I opened my eyes this morning were the hundred and one things that needed my attention – a house that needs cleaning, clothing that needs to be folded and stored, meals and medications that have to be given on time, and a sweet, guileless man-child who still needs my hovering presence, supervision, and help, 24/7. 

Today has been spent in a flurry of never-ending laundry, with more regular household chores squeezed in between. Alphonse accidentally pooped in his bed this morning, and while I had just laundered all the dirty linens yesterday, I had to manually wash and scrape poopy sheets and clothing twice (!) before throwing them in the washing machine. To be fair, Alphonse did try to run to the bathroom as fast as he could when he felt the runs coming; he just didn’t make it in time. I almost broke my back with the sodden king-sized comforter I had to wash thrice in as many days (he threw up on it the other night) and to make up for the hardship, Alphonse peppered his poor Mama with kisses. 

Last year, as Anthony and I prepared for this year’s milestone, we had planned for a trip to Paris to celebrate our 50th revolution around the sun. Today, because of the special circumstances of our lives, we are thousands of miles from where we planned to be. 

Still, I have no regrets. For even as today blends into a thousand ordinary other days just like this, I feel truly blessed. I have all that I want and need- Anthony, Alex, and Alphonse- and they make every one of my days truly extraordinary. 

Prescription: Getaway

20 Feb
guam-2017-03

Riding the free T Galleria shuttle

I had the chance to finally break out of house the weekend leading to Valentine’s day after almost two months of bed rest and forced “quarantine.” Which was just the perfect time, as my cough was almost gone, save for an occasional tickle in my throat, and I’ve been weaned off daily nebulizations by then. Traveling light, I had to choose between carrying my portable nebulizer or a doll, and I ended up chucking the nebulizer for two Blythe dolls! It felt great!

Where did we go, you ask? I had visions of sun and sand before we left, but Guam, which was our destination that weekend, pulled a few surprises on us. Sure, there were plenty of blue skies, warm sun, and gorgeous sand, but there was also rain, and not just mild drizzle, mind you. The weather was surprisingly fickle that weekend, flipping hot and cold at all hours of the day. Good thing I was and always have been more of a precipitate kind of person, so I enjoyed the weekend, sun and rain and all. Besides, Guam was simply too beautiful to hold any grudges, and what started out as a whimsical trip where almost everything went wrong (a story for another day) ended up as being one of the most relaxing days of my life.

guam-2017-01

The view from our room

We didn’t have a fixed itinerary so we wandered when we felt like it, slept when we were exhausted, and explored just a bit. We were happy with the hotel booking we got; we felt even happier that the back of our hotel was beachfront property so we had ample access to the sea and salty air. There was a little time to explore the shops (DFS Galleria, Micronesia, Guam Outlets, and K-mart!) and watch at the cinemas of the Micronesia Mall. Everywhere we went, we were met by Filipino-Americans who still speak the language, welcoming us with their special brand of island hospitality. We came to unwind, and that was what we did.

We all need that quick getaway now and then, and precious time with A♥ was exactly the answer to my cabin fever. Moreover, I felt rejuvenated and relaxed after a few days, just like the doctors ordered. Alas, I just wish I took more pictures!

Christmas 2016

24 Dec

It’s the eve of Christmas, and I am watching my family through CCTV cameras. Save for brief interactions with them, my boys live separately from me- a sacrifice we all make to keep Alphonse safe- because I have been sick for many days now.

It started with headaches on our last day in Hong Kong, more than two weeks ago. Thinking it was just fatigue, I spent the whole day in bed in our hotel sleeping. My husband and I took the flight back to Manila early the next day, but by nightfall, I was running a fever. My throat felt like it had sand in it, my eyes were bloodshot, and my head was pounding. Every single joint in my body hurt. I stayed in bed the next day, and the day after that. That weekend, I developed pinpoint rashes in my arms, and some on my chest. By then, my voice was hoarse, my nose was running like an open faucet, and my body felt like I had gone through a 12-round bout in the ring. I was also coughing so badly that A♥ brought me to see the doctor.

I was prescribed antibiotics and steroids, and advised to stay away from family members. I stayed in quarantine for another week till I finished the last of my meds. I was feeling better, albeit not completely well, so I decided to shop for Christmas gifts late Tuesday afternoon. It was a mistake, I knew right away, as the teeming crowds made it hard for me to breathe. I was catching my breath each time I tried to speak. I was dizzy and exhausted after only an hour.

By Wednesday night, my throat was sore and painful again. On Thursday morning, my runny nose was back and I started coughing globs of sticky, brownish-green mucus. I could not get any sleep, and when I did fall asleep, I was awakened from these short, restless naps by more coughing. As I write this, my knees feel wobbly and my flesh feels shaky all the time. My abdominal and neck muscles burn from the relentless coughing. I haven’t had an abdominal workout this intense in years.

To make matters a little bit more challenging, all our temporary help left yesterday. Undaunted, A♥ and Alex have willingly taken up the slack. Last night, A♥ took care of dinner, bathed Alphonse, and stayed with him till bedtime. They took three car rides in between, the longest one lasting for an hour. Alex took over at bedtime, watching his brother and singing him lullabies till the youngest one was asleep. 
This morning, A♥ gave the boys their breakfast and gave Alphonse his meds. When Alphonse accidentally soiled himself (wait, did I tell you that Alphonse has diarrhea today, of all days?), Alphonse’ “daddies” took turns washing Alphonse and cleaning up the mess. They do all these, even as they run inside the house every now and then to check up on me.

We communicate mostly through messages. I can’t talk much, I get winded too fast and I cough in between words. So I watch them through cameras, sending them messages and answering their questions on Alphonse and our household (like, “Mama, where are our spoons?”). Last night, I kept the television on CCTV mode, pretending they were all just with me in the room.

When I think about how we can’t all be together during this most special time, I am almost given to fits of despair, were it not for the brave men in my life. Watching them buckle down to work without complaints, without fanfare, without asking for anything in return, I am grateful that my life is blessed with their love and service. They’re keeping us together, even as we are physically apart.

This is love in action. I cannot think of a more fitting tribute to Christ this season.

Merry Christmas, friends and family, and we wish you love and peace always!

730 Days Gone

18 Jul

I wrote this on July 15, 2016, on the Second Death Aniversary of my father.

The Home Above

Two years ago, while my sister Jas and I were going through boxes of old papers, a single letter fell on the ground. It was a letter from the Carmelite missionaries, dated July 15, 1978, saying that July 16 was the Feast Day of Our Lady of Mt. Carmel. I told Jas about it, wondering at the coincidence and pondering on the importance of this unexpected discovery. It turned out to be Daddy’s last day. A week later, I found a stash of old cards we gave Daddy, and this was in them. I think Daddy was sending us a message. I know for sure he is in heaven now.

It was late on a rainy night much like this two years ago when Daddy left us. Alphonse, normally in bed and asleep by ten, could not sleep that particular night. He paced around the room, restless and seemingly bothered. We tried to appease him by blowing bubbles with him, an activity that almost always soothes him, but he angrily shooed us away.

When the phone rang twice at 11:00 pm, Alphonse stopped walking around the room. He stood near the foot of our bed, transfixed and silent. When I put down the phone, he seemed relieved. Then, without fuss, he allowed himself to be led to his bed by his brother. I often wonder about this night, how Alphonse seemed to know of or sense Daddy’s passing even before the call came. Daddy passed away sometime after ten in the evening, alone in his room in a private care facility in Taguig.

I broke the news to our mom as soon as the call came. She started wailing loudly, her heartbroken sobs interrupted only by the anger and blame she directed at me. I stopped her from going to the facility that night. There was a storm coming, I told her repeatedly. I promised we would all go back when the storm had abated. How was I to know?

At one in the morning, amid strong rains that whipped and lashed at our convoy of vehicles, we made a slow, sad trek back to Quezon City with Daddy. We finished signing papers at two in the morning. The funeral staff had brought him to the preparation room but they allowed us access to him. Daddy was soft, but cold. He smelled faintly of baby powder and dried blood. The attendants had wiped Daddy’s face clean and we kissed him on the cheeks and forehead. We held his smooth, cold hands one last time. And then we left him lying in a metal slab, a white cotton sheet tucked around him as if he were sleeping.

The power was out when we returned home. It was going to be light soon but we needed to rest our weary bodies and troubled minds. My husband and I tumbled into bed and fell asleep, my fingers knotted in his. I closed my eyes and willed myself not to cry. There were still so many things to think of. I made a mental list of them, going through each item over and over again until sleep finally came.

Hours later, I woke up unexpectedly from my dreamless slumber as I felt a cold chill pass through me. Sometime during the early hours of morning, A♥ had let go of my hand and rolled over in a fetal position, his back to me. I turned over to reach out to him but in the darkness, I saw my dad lying between us. Daddy seemed to be just sleeping. I’m a self-confessed scaredy cat but somehow, I didn’t feel scared; I felt comforted. I stared at the figure before me and whispered “Let’s rest na, Dad.” I rubbed my eyes of their tears and closed them again.

Typhoon Glenda (Rammasun) made landfall in Metro Manila early that morning, leaving much of the city in shambles and without power. The rains fell without let-up but Mom, A♥, and I needed to brave the downpour for one more errand. Daddy needed new clothes. All his old ones were much too big for him. He had lost so much weight in the last six months that he needed to hold up his pants with a tight belt. And his shirts, even the new ones, they all hang off his scrawny frame loosely.

Mom went through all the racks of suits they had and chose a navy blue suit, a light blue shirt, and a striped tie. A♥ hurried to pay for our purchases while I oversaw the packing of the suit. The saleslady reminded Mom to hold on to the receipt so we could exchange the suit if it didn’t fit. Mom looked at her sadly, eyes brimming with tears, and said “We won’t be bringing it back.”

Daddy’s wake lasted all of five days. We did not expect so many people to come. From early morning to late at night, we sat with guests who wanted to pay their final respects to him. We told Daddy’s stories over and over again and in turn, we heard snippets of his life from those who knew him as their friend, as mentor, as business partner. Daddy felt most alive to me then.

The night before his funeral, I finally allowed myself to cry. I knew that the next morning would be the last time I would ever lay my eyes on his face. After that, I would only get to see him in my dreams, and only if I got lucky. I burrowed my head in A♥’s arms and wept till his arms were drenched in hot, salty tears.

At six in the morning of Daddy’s funeral, I woke up suddenly again, shivering. My teeth chattered from the cold that wrapped itself around my chest and back. I knew it was Daddy hugging me goodbye.

Over the next year, I would dream of him intermittently but often, and in each one, he grew more robust and less frail. I dreamt of him frequently as the father I had in childhood but of late, I see him looking more like he did in his early sixties. The last dream I had of him was a few months ago. In it, I saw him through my bedroom window looking up at me from the garage. He looked healthy, happy, and serene. I saw him mouth the words “I love you” over and over again. I woke up with cheeks wet from tears. I think he’s telling me- us– that he is alright where he is.

It has been two years since that rainy night in July. Seven hundred thirty days without Daddy. I don’t feel the pain and loneliness too much these days, but God, I really miss him still.