Tag Archives: family

To A❤️

30 Dec

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

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

Love in Lasagna

15 Nov

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

7 Nov

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

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.

There’s No Easy Way to Say Goodbye

11 Jul

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

22 Feb

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.