Back to the Blog

I have to start today’s entry with an apology. I’m sorry for my absence. My blog went into hiatus these last few months and I didn’t even realize how long I’ve been gone without updating, not until I looked at the calendar today. I had not planned on staying away too long but time got away from me as I grappled with a series of health crises that came one after the other.

I was bedridden for most of May and June, and save for a few rare days here and there, I hardly left the house. Aside from the physical symptoms that caused a pervading sense of discomfort, I was physically and emotionally exhausted. I wasn’t sleeping well, ehrm, let me rewrite that to say that I wasn’t sleeping at all most nights.  During the day, however, I couldn’t even muster the strength to get out of bed.

The responsibilities of 24/7 care for a profoundly disabled young adult weighed heavily on our shoulders. When I got sick, my husband took over Alphonse’s care, allowing me to rest, recover, and work at my own pace. I did try to catch up with many of my chores, except that I got too winded easily. Without additional help, all three of us — my husband, my eldest son, and I — were often run ragged and tired to the bone.

And then in mid-August, I had a pretty bad accident. In the middle of a busy rainy afternoon, while cleaning the schoolhouse bathroom, I slipped and slammed my back and knees into the cold hard tiles. That was a doozy. Ouch.

I was able to cushion my head with my arms but I hit my right knee by the side of the toilet bowl. My lower back made direct contact with the slippery floor. I couldn’t stand up at all as my back and knees screamed in pain.

From the bathroom door, I saw Alphonse outside the schoolhouse and playing on his basin of water. Alone with him (my husband was somewhere else in the house and Alex was with his friends that day), I called out his name and asked for his help.

“ALPHONSE! Alphonse! Please help Mama!” I shouted myself hoarse as the sound of heavy rain drowned my sobbing.

After a few tries, I saw Alphonse turn his head and look at me with a sideway glance.

“Alphonse, please help Mama!” I waved a shaky hand at him as I struggled to keep myself upright with the other hand.

Alphonse looked at me again… and waved back.

“Alphonse, help,” I tried again, giving in to loud crying. Sitting there in the wet, slippery floor of the bathroom, I realized that Alphonse was oblivious to my pain. His innocence and inability to understand social cues or comprehend risks and dangers made him unaware that I needed help.

“Mamam,” Alphonse muttered loudly. “Yu!” he shouted, the crescendo of his tremulous baritone merging with the pitter-patter of rain.

Mama, I love you. That was what he was trying to say.

“I love you too, baby,” I thought to myself, crying even harder this time. The idea that something worse could have happened and Alphonse would be unable to help anyone, not even himself, sent me into more fits of sobbing. When I think about it now, I still can’t decide if I was crying for Alphonse or for myself.

A few minutes later, my husband found me, drenched wet and hysterical. Alphonse went about his playing, glancing every now and then, smiling at us and shrieking happily.

My knees are still sore and painful today; I hobble around like an old lady in knee supports and cane. While the right knee received the brunt of my accident, my left knee is slowly giving in from the burden of walking and climbing. The orthopedist has recommended a regimen of treatment to alleviate the pain and increase mobility but I am unable to complete treatment as of today. Not only is the cost prohibitive, we also struggle with finding manpower to help with Alphonse, even just temporarily.

Between living with the constant pain and trying to find a semblance of normalcy to our days, I am hard pressed to find time to sit down and write. The pain has robbed me of my peace, truth to tell, and the struggle to give Alphonse the consistency of routine and predictability has fallen completely on my husband’s and son’s shoulders. I worry for them too, as they help carry my share of the load without complaints.

Still, today is a new day. Today, I found the will, and energy, and desire to write and keep writing. Maybe if I keep writing, I can forget about my worries and fears and allow myself some joy. For now, I will hobble along and try to keep up.

I’m just grateful to be here again, old friends.

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“Not The Mama”

Image

When I brought out breakfast for the boys yesterday morning, Alphonse came up to me right away and kissed me. I was glad to see him looking happier than he had been of late, so, buoyed by the 3Es of the Son-Rise Program, I celebrated with whoops of joy and a silly dance.

Alphonse turned out to be amazingly responsive, using more vocalisations to respond to me. His “red light” moments were shorter, enabling me to sustain longer interactions with him.

While he was having his breakfast, I kept a running conversation with him. At one point, I asked him, “Did you have a good night’s sleep, Alphonse?” He responded with a loud “Yah” and a vigorous nod. I followed it up with “Did you have a good dream?” Alphonse roared “Yah!” again, smiling broadly and nodding his head in obvious agreement.

Of course, this Mama just had to ask: “Did you dream of Mama?”

Alphonse looked at me quizzically, then shouted a deafening “Eh! Eh!” He shook his head emphatically. An expression that can only be described as “ewww” 🤢 crossed his face fleetingly.

I laughed so hard I almost fell off my seat.

I wish I could have recorded the whole thing in video. When Alphonse opens himself up, he is quite the hilarious fellow.

Then again, do I give him nightmares? 🧐

Update:

Today, I asked him the same questions, and his replies were honestly consistent.

Me: Did you have a good night’s sleep, baby?

Alphonse: (shaking his head) Eh.

Me: Did you have good dreams?

Alphonse: (shaking his head again) Eh.

Me: Did you dream of Mama?

Alphonse: (nods sadly) Ya.

I do give him nightmares! This just cracks me up! 🤪

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.

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

Love in Lasagna

lasagna-copyThe very first dish I ever learned to make was a lasagna. Not adobo, which took me 15 years to learn; not sinigang, which I could not stand to eat till I was in my forties. Apart from grilled cheese and liver pâté sandwiches my father taught me to make for our midnight snack dates, lasagna was the only thing I knew how to make for years. I learned from necessity, because I wanted to eat it.

In the beginning, I cooked only for myself. I would make one 9 x 13 pan and devour it in one sitting. No leftovers, I’m not kidding! Well, most of the time, really, heehee. Today, I’m sorry I did not share with my brothers and sisters more, maybe then, I’d  have shared part of my heft too.

When I had made the dish enough times, I found the confidence to share it with others. And so, I made it for my friends in med school. They seemed to like it, judging by the empty pans I would lug home. Well, it was that, or they were just being kind to me.

I also made lasagna to impress my then-boyfriend and years later, when we got married, the dish became his special request for occasions like his birthday or our anniversaries. Of course, as much as we would have wanted to have it everyday, it was a bit over our measly budget as newlyweds and, later on, too labor intensive for new parents.

One memory that comes to mind when I think about lasagna happened when we were very young. On his 25th birthday, amid a series of family disputes (long story), I burnt the lasagna meant for his birthday dinner. In the drama of the day, I totally forgot about it and by the time I remembered, thick, black smoke was coming out of the oven. I remember holding the burnt pan over the sink, crying over it and our woes. I was about to throw the whole thing in the trash when A♥ silently took it from my hands. He set it on the table, helped himself to a huge serving, and ate it without complaint.

“Thank you for a wonderful birthday, hon,” he whispered in my ear.

“It’s burnt,” I bawled loudly.

“I could eat everything in one sitting. I love it because you made it. And I got to spend my birthday with you again,” he said gently.

I cried even harder after that. I also never burned a single pan after that day.

Last weekend, upon request, I made lasagna for the family and an extra pan for Alex’s friends. I worked late Friday night to get them ready and then woke up extra early to bake them. Making them was not easy for my numb, clumsy hands anymore, I discovered, but I worked with only the best ingredients and poured my best efforts into making sure they tasted the same as they always have.

Alex has already asked me to teach him how to make it. On occasions when he is inspired to make something more than a lazy cup of instant ramen, this son of mine dabbles in the kitchen. One day, he will be making the lasagna in the family. Hopefully, he will share it with friends, with loved ones, and with the family he will make. I find this thought comforting.

When he makes his own lasagna, he will be sharing more than just food that has become a special part of our family. He will be passing on years of our memories, of a family history that included one special dish, and all the joys and sorrows that came with it. He will also be passing on love and snippets of our lives.

Which, I hope, much like the lasagna I served for lunch last Saturday, will be enjoyed to the fullest and to the last bite.

When Life Happens: A Birthday Rolls Around Again

I owe you all an apology again for not having updated in a while. Each time something happens, I make a mental note to write about it, even going so far as to draft it in my mind, but for one reason or another, I never get around to sharing it with you. There’s been a flurry of changes in our home in the last three months. Even as the weather has changed from being hot and unbearable to being cold and rainy and then back to hot again, so has our home and our lives. It’s getting harder to just roll with the changes when they do come, I don’t know why. Maybe it’s just me. Maybe it’s just part of getting old.

The biggest news in our lives, and I mean that of the pleasant variety, is that Alphonse turned 22 last week. I’ve been dreaming of throwing him a party for his birthday for forever, but it simply has not happened and not for lack of trying. He still doesn’t do so well in crowds and noisy places so we figured another way to celebrate this special occasion. Instead of one big blowout, we decided to serve him his favorite dishes- one special dish a day- on the days leading to his birthday. We had pizzas one day, KFC fried chicken the next, garlic shrimps after, and Tita Lulu’s tokwa’t baboy (tofu and pork) after that. On his birthday, we went Asian with Chap Chae as his birthday noodles, Korean fried chicken with honey garlic sauce, and Szechuan style prawns. Not bad for a homemade birthday feast, right?

Aside from the special dinner we shared with a few of our extended family, we planned a picnic for him last Saturday. This one may strike you as strange, but it really isn’t, considering he hates crowdsalphonse-nov52016 and noise. So where to have a quiet picnic away from everyone else? At the cemetery, of course. by my dad’s graveside and on a weekend after All Souls’ Day. Perfect, right?

We brought mats and rechargeable fans, an extra tent, umbrellas, and four pizzas, three orders of buffalo wings, and lots of cold drinks. We sat around for two hours and made small talk while we ate, Alphonse in the middle of it all, relaxed and unfettered. When the temperature soared, we packed up our stuff and cleaned up, then headed home. Alphonse was content and happy, singing his wordless ditties all the way home.

Unfortunately, the planned Sunday trip to Tagaytay didn’t push through. We had a sudden home emergency that necessitated scrapping our plans at the last minute. Poor Alphonse! He was all dressed up and ready to go. I knew he was disappointed, judging by the way he puckered his lips into pouts the whole day. Later in the day, he took two short rides with his dad but even those didn’t seem to make up for the canceled plans. We have to reschedule soon because we made a promise to him; here’s hoping the next one pushes through.

I know I haven’t shared much about Alphonse in recent months. Truth is, as Alphonse gets older, it gets harder to keep writing about him. Physically, he is an adult. Already, he has almost four inches on me and can match me pound by pound, weight-wise. He is strong and strapping, with firm arms and sturdy legs. Cognitively, however, he functions somewhere between three and five years old; emotionally, he is at an even lower developmental level. He is impulsive, obsessive, and requires 24/7 attention. The mismatch between his size and mental age have obviously become wider with time. As such, behavior that may be considered amusing when done by a young child no longer seems cute or funny at his age.

As his family, we see him always through the lens of love. Even at the worst of times, when our lives are consumed by rigidity and explosive violence, our anger comes from our own helplessness and failings and not from a place of hate and indifference, not of him or his autism. Unfortunately, the same cannot be said of others who may now view him as threatening and frightening. This is the quandary I find myself in. To keep writing about Alphonse and all his challenges may mean creating fear and revulsion in those who do not know him or have no wish to get to know him. To stop altogether may mean sweeping his story, and many others like his, under the rug, at a time when we severely need to rectify the public’s misconceptions on autism.

Forgive me for the reluctance to share more stories about him in the future. I will not stop writing, that is a promise I made to myself many years ago when I started to blog, but perhaps it is time to reconsider the direction I may wish to take in this online journal. I’d like to think of it as a way to redefine and reshape our relationship as he grows older. And though you may see him still through snippets of our lives, he will occupy less and less space on this journal as I allow him the privacy demanded of his age.

Thank you to all those who have loved him, even from afar. And thank you for watching him grow up through these pages. It’s time for him to be 22.

730 Days Gone

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.