The A- Team

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

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

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.

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

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!

Love in Lasagna

The 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 crowds 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.

25

I 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.

And 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.

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.