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25

20 Sep

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

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

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

papa-and-mama

The heart has no wrinkles. 🙂

All this, and always with your hand in mine.

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

In you, I have found redemption every single day.

With you, I have found us.

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

There’s No Easy Way to Say Goodbye

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.

 

 

Alphonse at 21

3 Nov

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

Happy birthday!

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

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

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

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

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

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

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

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

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

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

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

We love you always.

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

Loved since birth

alphonse 03

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

when autism came 01

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

Alphonse as girl

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

when autism came 02

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

Alphonse toddler

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

Alphonse cutie

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

Alphonse teddy 01

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

alphonse 51a

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

Alphonse and the Hose

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

Alphonse teddy 02

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

Self injury AlphonsePicture copy

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

alphonse 71 copy

Bestowed with the gift of beauty,

alphonse 72 copy

yet often fierce and funny,

alphonse

this boy spreads joy with just a smile.

alphonse 03

And as he grows older,

Alphonse

and bigger,

My Alphonse

wiser and stronger,

Alphonse at work2

may his smiles remain with us

Alphonse and mama 02

to give us light when darkness comes

Alphonse 031315

and to bind us in love and kindness always.

alphonse summer 03

Happy birthday, Alphonse!

VM 02

We love you so. 

 

To Anthony

20 Sep

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

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

For you are my home.

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

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

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

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

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

 Papa and Mama 02

 

No Means No

20 May

These days, when Alphonse says NO, we have to believe he means it.

20150520-190726-68846206.jpg

Communication is difficult for individuals with autism and Alphonse is not an exception. For those on the tail end of the spectrum- those whose disabilities are considered severe or profound- like Alphonse, speech is a most challenging obstacle. It is a huge credit to his ABA manager/teacher, Teacher Rod, that he even learned how to give “yes” or “no” answers by nodding or by shaking his head. But perhaps because the act of nodding is easier than moving the head sideways, Alphonse’s default answer to everything is “yes.”

In the beginning, we tried to find things he would object to just to emphasize the difference between a “yes” and a “no.” With food being such a strong reinforcer in his case, we thought of introducing bitter things such as ampalaya (bitter gourd) to elicit a negative reaction and associate this with the gesture and the word “no.” Weeks later, however, he began enjoying the taste of bitter gourd and we lost a reinforcer to his voracious appetite. After that, we tried chili peppers and hot sauce and even those became enjoyable to him after a while.

We had pretty much given up on ever teaching him to make “yes” or “no” choices until I inadvertently discovered he hated having his eyebrows trimmed. The pair of tweezers I use to trim and shape eyebrows scared him witless and he would shake his head and push my hands away. Of all negative reinforcers, this elicited a consistent “No” over multiple trials.

When Alphonse finally found his “no,” he began using this in earnest, answering us in the negative even with repeated questioning. Throwing in another question that is answered by a definite, unequivocal “yes” (like “Do you want bubbles?”) eliminated the uncertainty of his disagreement. I was so proud of this milestone that I whipped out the tweezers every opportunity I could get just to see him say “No.” Pretty soon, he could answer “yes” or “no” when asked if anything hurt (we go through a checklist, point to the body part, and asked if it was “ouchie”) and if he needed medicine for it. What a milestone it was!

Sometimes, however, even I forget that Alphonse’s choices do matter. This morning, after breakfast, I decided to trim his beard and clean his face. I dabbed some Cure aqua gel to exfoliate his skin and gently rubbed in circular motions to massage the product. When I got to his nose, I asked permission to rub harder.

“Alphonse, can Mama rub your nose?”
Alphonse shook his head. No.

“I need to rub your nose to clean it, Alphonse.”
More shaking of head, harder this time. A definite No.

“Well, Mama says she needs to do it, okay? So just be good.”
And so I did, completely ignoring his hands pushing me away.

I saw him look at me as a flash of anger darkened his eyes. Then, he began to pull my hair with both hands. He screeched loudly as he tore my hair from their roots.

I said nothing as I waited for the nannies to remove his hands from my head. I grabbed my hair by the roots to prevent them from being pulled but I was no match for the violence of his angry hands. My scalp stung in places but I was also still grateful that Alphonse had not employed full force. I was chastened.

I knew it was my fault. I knew that I had pushed him too far, that I had failed to respect his choice. He had tried to communicate his needs with me and I ignored them willfully. Sometimes, I forget that he does know what he wants. Sometimes, I forget that even the most well-meaning mothers have no absolute right over their children’s choices, disabled or not.

Later, as I apologized, I asked him if he was still angry with me.  He shook his head and looked at me kindly.
No, Mama. I could almost hear him say.

“Do you still love Mama?” I asked timidly. He nodded. Yes. And then he bent to kiss my hair.

As Alphonse slowly finds his voice, I have to remind myself to be more sensitive and respectful of his choices. Whether I am ready for this change or not, his ability to choose for himself- however simple these choices may be- means he continues to change and evolve. I know he cannot be my baby forever.

I have to let him grow. It is time.

A New Year’s Update

8 Jan

Happy New Year, friends! I apologize for the long absence; the holidays have been busy and exhausting for our family. We were shorthanded with the temporary absence of Alphonse’s caregivers and our continuing saga with difficult behavior was made harder with Alphonse’s ear problems. Daddy’s absence also made the holidays bleaker than it already was. I could go on and on about what really went on, but let it suffice to say we were all in desperate need of a Happy New Year.

And so, we greet 2015 with a rare, real family photo, taken one sunny morning at the memorial park where Daddy sleeps. We spent the mornings of Christmas and the New Year by Daddy’s grave- just me, A♥ and the boys sitting quietly in the marble benches beside him. It was our first Christmas without Daddy and truth to tell, the loneliness was sometimes too hard to bear. In the park, however, which was quiet that time of day, we breathed easily as we soaked in his memories. Our somber reminiscences easily turned into joyful banter as we remembered Daddy and all the crazy, funny things he did in his lifetime. We felt connected to him again. Even Alphonse seemed happy there.

Family NY 2015These smiles are for you, Daddy. ♥

Over the holidays, well-meaning friends have asked for an update on Alphonse. I sincerely thank all you who think of him with love and concern. I know how busy your lives can be and to reach out beyond your comfort zone to ask, to wish, to pray, and to love is often impossible for many of us. That you do is a continuing testament to the friendship that you have generously and selflessly extended to me and my family. Thank you.

Alphonse is well, generally speaking. We are looking at a second procedure to drain both his ears, probably by the end of this month. I know some of you have asked about the first procedure so allow me to give you a more detailed story on what happened then.

We went in the hospital last November 26, Wednesday afternoon. The surgical procedure, which only took two minutes in real time, was performed on November 27, Thursday morning. Easy peasy, right? As is the case with Alphonse, what went on between admission and surgery was another story altogether.

To be honest, Alphonse did admirably well under the most stressful circumstances. He is deathly afraid of hospitals and doctors and will do anything to escape and run away. It took just six people to hold him down for the IV insertion, and only because he didn’t fight us with all his strength. I was able to wrap him in a blanket without resistance and this made it easier to hold him down the rest of the time. The IV line went in without a hitch.

NY 04“Easy” is relative.

Two hours later, however, he decided he had had enough and using just one hand (both his hands were wrapped and covered so he would not be able to remove the line), he was able to remove the whole IV line- tube and cathether- in one go. I’d have said he has the makings of a Houdini right there, the way he wiggled his arm out of the splint, the cloth covers, and layers of sticky Leukoplast tape.

He also refused to sleep and roamed the halls almost the whole night. When he became agitated and started howling loudly, we asked the doctors for a prescription to help him calm down. Even with that, however, he kept walking and roaming till he fell asleep on his feet. It was almost two in the morning and the nannies and I were all so tired, we fell asleep as soon as our heads hit our pillows.

An hour of restless sleep later, we woke up to the sounds of nurses and doctors preparing for the IV line reinsertion. Seeing all those people surrounding him shook Alphonse from his stupor. It took eight people to hold him down this time. Perhaps sensing the futility of resistance, Alphonse gave up fighting rather quickly. IV line 2 was secured in no time at all.

NY 05

In this corner, weighing 76kgs… Hand wraps to go with his boxers’ ear

On hindsight, the whole thing went down too easily. We should have been more vigilant but sleeplessness has a way of dulling the brain. I am amazed that Alphonse was wily enough to surrender when his strength was weakest and to bide his time till we were not watching. Half an hour later, as we tried to engage him with Youtube videos, he pulled out the tubing by wrapping the plastic line around his elbows and pulling hard. Were it not for additional layers of tape, he would have pulled out the IV catheter as well, which would have necessitated a third reinsertion. It was past four in the morning then and we could not wait for the day to start.

The surgery team came up to fetch him at six. He went willingly in a wheelchair. Although we could sense that he was a bit afraid, he held our hands obediently and followed. There was still another hour’s wait then, and though he tried to escape thrice, he also listened and stayed when I asked him to. I have to give him credit for this unexpected restraint and compliance. Even when all his instincts went against everything I said and asked of him, Alphonse listened and trusted me.

NY 02On our way to the OR

So it just about broke my heart when he struggled to stay awake and stand up through repeated intravenous injections of the anesthetics. The anesthesiologist (God bless his kind heart) gently coaxed Alphonse into the stretcher, talking to him calmly and with so much gentleness and reassurance. And as Alphonse finally drifted into sleep, the doctors made sure mine was the last face he would see. I was also the first to greet him when he came out of anesthesia.

NY 01Post-op

Alphonse woke up, post-operatively, after an hour and a half in the recovery room. He was groggy and disoriented. He shivered uncontrollably and retched from the anesthetics. He tore the pressure dressing off his ear within minutes of waking up and pulled out the drain the doctor left in it. He calmed down a bit after seeing me but refused to go back to sleep anymore.

NY 03He didn’t go back to the hospital room the rest of the day.

The doctors allowed us to go home late in the day after all the effects of the anesthetics had worn off. Seeing the difficulty of putting back pressure dressings, they agreed to let us go home on the condition that we would manually drain his ear, keep it sterile and aseptic, and continue to administer topical and oral antibiotics. As another prerequisite, my brother-in-law John, who happens to be a surgeon, would be asked to keep watch over Alphonse’s ear and reopen the drain site if necessary.

In the days that followed, Alphonse willingly let us clean his ear and drain it of fluids. I have to reinsert the tips of a pair of mosquito forceps daily in the incision site to keep it open and even then, we have had setbacks when Alphonse hits his ear with his arms or his fists. But just before Christmas, his ear ballooned again, this time severe enough that it necessitated intervention by my brother-in-law. Alphonse has been wary of us since then and scuttles away when I pull out the gloves and gauze in the mornings.

Over the holidays, while we dealt with one setback after another, we were able to work on trying to diminish his episodes of head banging. Although this behavior still appears now and then, it no longer has the intensity, frequency, and duration of the first few weeks. And yet, a secondary behavior has appeared- the hitting of his entire face with his arms and fists- and this is proving more difficult to address. As a result, Alphonse’s right ear is not healing, his other ear now contains pockets of air, and his face, neck, and arms bear bruises and wounds from being gouged and scratched.

I don’t have the heart to post his “real” pictures, the ones where there is a huge wound on the left side of his nose and bruises and abrasions on his cheeks and forehead. I process his pictures on Photoshop, carefully removing the wounds and cuts. Alphonse is not unhappy most of the time and his smiles are so heartfelt and so genuine that even I wonder what goes on inside his mind when he hurts himself.

I wish I knew the answers to this question. I wish I knew how to ease him of all his uncertainties and fears. For now, as we move on to the New Year, all we have is the hope that all these will pass away and soon, we pray. In the meantime, we ask for more prayers for healing and calm for him. Thank you, dear friends, for your good thoughts and wishes and Happy New Year again.