Happiness is… (vi)

knowing that even when I leave this world,

Alphonse will always be in good hands. 

 

 ”We are not only our brother’s keeper; in countless large and small ways, we are our brother’s maker.”

Here Comes the Sun

There are as many nights as days, and the one is just as long as the other in the year’s course.

Even a happy life cannot be without a measure of darkness, and the word ‘happy’ would lose its meaning if it were not balanced by sadness.

~Carl Jung

“Little darling
It’s been a long, cold, lonely winter
Little darling
It feels like years since it’s been here…”

“Little darling
The smiles returning to the faces
Little darling
It seems like years since it’s been here …”

    “Little darling
I see the ice is slowly melting
Little darling
It seems like years since it’s been clear…”

 ”Here comes the sun
Here comes the sun, and I say
It’s alright.”

There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.

~ Albert Einstein

Miracle on the 12th

A child’s spirit is like a child, you can never catch it by running after it; you must stand still, and, for love, it will soon itself come back.” Arthur Miller

“Do you love Mama?” I ask Alphonse every morning. Each morning, he has the same answer for me.

I thought yesterday was going to be different. He had just awakened a few minutes before. Surprisingly, he did not jump out of bed as soon as he woke up, his edgy nerves seemingly absent yesterday morning.

He paused, as if to think things slowly, and looked into my eyes. For a few seconds, it felt like we had a connection. I searched deep into his eyes for a glimmer of recognition, for something that reminded him of me. And then he shook his head grimly, stood up quietly, and walked away from me.

Yes, each morning, I ask the same question and each morning, I get the same answer. It is an answer that I have come to dread every morning for the last four weeks.

No.

Last night, at eleven, barely an hour after falling into deep sleep, Alphonse suddenly awakened. He seemed hesitant to go back to bed again so A and I tried staying with him for a while. However, our presence seemed to irritate and startle him more so we quickly retreated when we felt a full-blown tantrum coming. The nannies calmed him down and led him back to bed. Each time he would fall asleep in our bedroom, however, he would suddenly awaken again and jump at the nannies with grabbing motions. Thrice, they tried last night to put him to bed and thrice, they failed. Finally, they led him to the schoolhouse where Alphonse seemed to calm down considerably. At two am, he finally fell asleep on a mattress on the floor of his schoolhouse. It didn’t make any sense to move him so there he stayed, surrounded by his nannies till morning.

I could not sleep last night. I was too worried and too anxious to welcome rest. The bed felt empty and incomplete. I know I should have just moved closer to A in bed to cover the sudden emptiness between us but we left the it open for Alphonse’s return, the inches of empty space suddenly unbearable. I prayed to calm myself down and found sleep when I least expected it, halfway through the fourth decade of the rosary. When I woke up this morning, the last few words of “Hail Mary” were still in my head. The sun had been up for at least an hour. The only sound in the house was of the shower running in the bath, as A got ready for work. From the schoolhouse, there was only silence. I heaved a sigh of relief.

I checked on Alphonse this morning and he was in good spirits. He seemed glad to see me as he took my hand to go back inside the house. When he opened the bedroom door, he saw the bed and quickly got on it, covering himself with a thick comforter. I wasn’t sure he wanted me there with him so I stood by the doorway, half-expecting another retreat. But he sat up and beckoned for me to sit beside him. When I did, he smiled at me and kissed me repeatedly. After each kiss, he would hold my face a few inches from his and look at me, as if reassuring himself I was really there. For the first time in weeks, I got him smiling again.

I grabbed a camera while this was going on but my hands were trembling as I took pictures. I was laughing aloud even as tears clouded my vision.

And then I remembered.

Ask the question now before it’s too late, I reminded myself.

“Do you love Mama?”

I held my breath and counted the seconds, willing myself into complete stillness, steeling myself for the answer that would wound my soul once more.

He looked at me with his big soulful eyes and paused, as if to think.

Yes. Yes. Yes.

Thank you, dear God, for this miracle today.

Gratitude

“At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.” — Albert Schweitzer

I was watching an old episode of Oprah today, the one where the Smith family (Will Smith’s) was promoting The Karate Kid remake. Something Will said struck me as important, “Greatnes lies at the brink of destruction,” and somehow I understood what it is he meant. I’ve been trying to draw something positive from our family’s recent experiences and that seemed to me to be most appropriate. We have faced our worst fears and have come out of this scathed and scarred, but alive; we are still standing.

I have to make a conscious effort to change my mindset these days. I have been struggling with my feelings since this all began, trying to remain optimistic and constructive, but often with less than successful results.

Today, however, I will choose to live in a space of thankfulness. Today, I will fight to shed the cloak of fear that envelopes my being. Today, I resolve to start living again.  

Working on this, I start by sharing this wonderful picture of my son Alex. This just about makes my heart burst with pride and happiness.

Doesn’t he look adorable? (Okay. Give this Momma some love and you all agree with me on this one.)

Alex will graduate from high school this coming Sunday afternoon. We are very happy parents to see him through this important milestone. A couple more months and he is off to college. Time is passing swiftly, indeed.

And because I choose today to be a happy day, allow me to use this time to pause and reflect on the blessings we have received throughout our family’s ordeal. The truth is, we are a family unused to kindness from others. Perhaps because we have had little of it in the time since Alphonse’s diagnosis that unexpected gestures of kindness floor us. As friends and family moved away or removed us from their lives- some by happenstance, many by choice- we learned to sublimate the pain that comes with rejection and instead, replace this grief with self-reliance and independence. We learned to harden our resolve and simply do what needs to be done, with as little bother to anyone as possible.  

As such, this surprising outpouring of love and support has overwhelmed us completely. That these are done without expectations of reciprocity amaze us; that many are people who are not related to us in any way astounds us even more. I think if there is any doubt that God exists at all, it is easily dispelled by the kindness of the human heart. Only Someone divine and infallible can create Love.

To Patricia- for all our messages of advice and support and for your genuine friendship,

To Lyra- for your open heart and your generous spirit, for the smiles and happy tears your kindness has sprinkled our lives with,

To Dang and Tiff-  for your visit which proved to be a balm to my soul,  

To Pilar- for your thoughtful gesture and your reassurance of kinship ,

To Chat, Rams, Aileen, Lissa, Ronnie, Melyn, Mei, Ron, and Auden - for your messages of support and friendship, for your constant prayers, for your presence in our lives,

To my blog, SF forum, and FB friends- Leirs, Lori, Sarah, Pei, Tanja, Eric, Candy- for thinking of us often with kindness and concern,

To Teacher Rod and Teachers Paolo, Wilson, Mark and Jom- for coming to our aid in our time of need, for working with Alphonse patiently day in and day out amidst his troubles,

To my 4B family- Ms.Joy Sacluti (Alex’s adviser), Malu, Carina, Sally,  Joville, Cecille - and all of Alex’s teachers at the Ateneo- for helping Alex cope especially in the last few months of school (Alex could not have made it through these difficult months without your love and patience), for your prayers and words of encouragement,

To Mommy. Daddy, and Jas- for the home cooked meals, for the free babysitting whenever we needed respite, for simply always being there,

Thank you for standing with us in these difficult times. There is a long way to go yet but your kindness and love have helped us immensely in this journey of healing. God bless you all.

Missing Alex

Dear Alex,

I wanted to start my day thinking of happy thoughts so I thought about you. I miss you, son. It’s been a week since we were last together under one roof. When Alphonse was in the hospital, I hardly saw you as you were in school the whole day. Your short visits at night, just before going home, meant a lot to me, to us. Your daily visit was the one “normal” event of our days, where you would tell us about school, your teachers, and all your friends. In those short hours, we could all pretend we were at home and we were the family we always were- loud, quirky, yes, a little weird- and together.  

I’m sorry I sent you away to live with your grandmother for a while. I know you didn’t want to go when I first told you. You said you had just been home with us and you had to leave again. I hope you understand that I didn’t want you to have to come home to all the chaos and despair of our days. Alphonse is still far from being well and I hated for you to see him like this. And with final exams this week, I didn’t want you to have to dwell on any other thing except that which is most important. Just think about school for now, okay?

It could not have been easy for you, having to grapple and restrain your brother when he goes amuck. You know what? It’s not easy for me either and I’m an old hand at this already. I know you could not study at home because he would rummage through your school bag and destroy your bag, books and notebooks. Even our family dinners have disappeared in this siege. We could only eat when he was asleep late in the night. There were many times you had to endure eating separately, alone, in some dim corner of the house he would least likely visit, because if he saw you eating, he’d throw all your food on the floor. I’m really sorry, Alex.

Remember the night two weeks ago when he grabbed me by my hair several times and attempted to bite my head? You had to pull him by his hair because that was the only way to get him away from me; his hands were already held back by your dad and the nannies and he was still so strong he could come at me over and over again. Oh, how miserable you looked afterwards. You kept apologizing to me and to Alphonse long after the day had passed. It’s okay, son. It really is. I know you didn’t mean to hurt him and I’m sure he knows it too. We love you very, very much.

I know you’re doing well at Mommy Lola’s. Aside from your daily phone call and your text messages, I call and talk to Mommy to ask about you whenever I can get away from Alphonse. They all love you there, I’m sure of it. I bet you’re even getting a wee bit spoiled there.  (Don’t enjoy the pampering too much!) They say your little cousin Sese idolizes you. I heard he makes your tummy his bouncy mattress as well, that little squirt. Be patient with him, ha? Continue to be loving to your grandparents, aunts and uncles. I want you to remember that their love must always be reciprocated with obedience and respect.  And, oh, don’t forget to say thank you always to Kuya Teteng, the driver who brings you to and from school.

I hope we can all be together soon, Alex. Pray for all of us here at home, Alphonse, most of all. I think he misses you because he sleeps in your bed while you are gone. When exams are over, you can try to come home for a short while and see if Alphonse will respond to you the way he used to. You can even sit in his classes and help out his new teachers. We have more men coming in the house all day to help so you won’t find it too hard alone here.

Stay safe, my love.

♥Mama

In happier days (November last year)

Love In Slow Motion

(Alphonse has just gone to bed. This post is a little late for the occasion, but as we are still a few hours from the end of the day, consider this my Valentine Day’s post.)

I wore a ratty old nightgown to bed last night, Valentine’s Day being farthest from my mind. A and I were both exhausted from the weekend of keeping Alphonse in good humor and failing miserably many, many times. At ten in the evening, Alphonse fell asleep on a mattress on the floor.  We heaved a sigh of relief that we survived another long day. Tired as I was, my mind was overwrought and could not find easy sleep. Almost midnight, as I was finally drifting between semiconsciousness and the last few pages of a Harry Potter book, Alphonse awakened and got into bed with us . What surprised me was his tight embrace, as he burrowed his face deep within the crook of my neck. I kissed him gently as I eased him into his pillow, all the while controlling the urge to start crying again. This unexpected embrace- this sudden expression of love and trust and need- this  was my son speaking without words- the anger, violence, and aggression temporarily forgotten.

Half past midnight, as I closed my eyes and said a silent prayer of thanks, a hand reached out for me in the darkness. I felt a warm embrace. A soft kiss brushed my lips, as my husband pushed a small silk envelope into the palm of my hand.  This morning, with my eyes still gummed from sleep, I almost tripped as I made my way to the bathroom. On the floor were three boxes. And on each box was a note. One of them brought more tears to my eyes, washing away the last vestiges of sleep.

Dearest P,

I know things haven’t been gone well for us- and especially for you lately, but if there’s anyone who can lift us up and guide us out of our plight, it’s you. You’re strong, resolute, persevering. In short, you’re you. And you’re my Valentine. Always and forever.

A. 

It’s not easy to find joy when life hits us hard like this. But I remain grateful that each day brings me new reminders of how we are loved. It is this love that holds us together when we are stuck in vicious circles of pain and loneliness. It is a love that survives the frustration and hopelessness of miserable days. It is a love that moves our world in slow motion, forever mindful that peace and joy are such fragile, fleeting gifts.

This is the miracle of my life- that no matter how far I stray from Him, no matter how deep my despair goes into the pit of darkness, He sends me Love when I need it most.

He sent me A.

While we wait for the sun to shine in our lives again,

I hold on to the best parts of my life

My hope and faith renewed

For with you by my side

We can conquer the pain

And welcome the rain

That pours like a sea

Washing away

All memory   

of strife and tears

I hold on to you 

And you cling to me

Together, still strong,

I am redeemed.

Bookends

Alphonse had had his 20^th car ride yesterday and his dad was tiring out. They had been everywhere the whole day, as Alphonse constantly begged, demanded, and when that didn’t work, pushed, pulled, and bullied his dad into submission. A had tried hiding around the house but Alphonse’s bloodhound nose seemed to follow his scent everywhere. I had already gone along in one long-ish car ride, going as far as Greenhills to pick up carrot cake and some fresh Ferrino’s bibingkas (sticky rice cakes). I had to say “No” to the subsequent trips; the car ride made me dizzy yesterday.

On the last trip, my husband was flat out tired and sensing this, I took Alphonse by the hand. I led him to the makeshift school house we had at back and he followed meekly. There I prodded him to jump, run, and dance. Alphonse always has so much energy; he’d never sleep early if we didn’t tire him out. Yesterday, however, he was lazy, lethargic, and relentlessly tried to put one over me by putting down a mattress on the floor. When I stood on a stepladder and challenged him to jump as high as my outstretched hands, he finally got into the groove of our jumping game. After a few minutes, he was squealing in glee, jumping away to the music of the “Chicken Dance.”

We played for an hour, maybe two; I really didn’t notice time ticking away. Also, I had been meaning to fix the school house again so after he wandered off for a water play break, I started cleaning up, fixing drawers, throwing away broken toys and other trash he stuffed in his toy closets. Before I knew it, the sky had darkened considerably. Alphonse had already bathed and gotten ready to bed. He kissed me goodbye and went back inside the house.

He was back just a few minutes later, his eyes already small from sleep but desperately trying hard to stay awake. He took my hand and tried to lead me away. There were still many things left undone and I packed them away hurriedly, reluctantly. I followed him back into the house, up the flight of stairs to our bedroom, and into bed. His dad had fallen asleep while watching television. Alphonse went to his usual spot, in the middle of the large king-sized bed, with me on the right and his dad on the left. He shimmied himself underneath a thick comforter and holding both his dad’s and my hands, gave me his sweetest, most beguiling, most content smile. Then he closed his eyes, still smiling, and went to sleep without a fuss.

I held his hand and looked at him, wondering how long we can hold his hands like this. I fear for our future more and more, as he seems so wrapped up in a world where his father and I are the posts that prop his world up. I looked back at the last two weeks and remembered how angry and lost he was when we were gone. The memory must haunt him still as he seeks us out constantly, perhaps afraid he has lost us forever.

And then I willed the apprehensions away, pushing them out of my mind. The future is still a long way ahead. Tonight, I thought, I give thanks for sleep that came readily to this fearful, insecure man-child.  And moving him closer to my body, I continued to hold his hand, my other hand reaching out to my husband’s free hand. We are locked together, hand in hand. In the stillness of the room, a single thought crossed my mind before sleep finally claimed its prize.

 “We are his bookends, after all.”

For You

“A hundred hearts would be too few
To carry all my love for you.”

Happy birthday, Honey. My greatest dream is still to grow old with you.

An Autism Christmas

It’s a work day today so everything is supposed to go back to its normal, everyday routine. It’s hard to shake off the inertia of the holidays. I feel lazy and lethargic, as if my body recognizes the cool December breezes as its signal for relaxation. I wonder how anything ever gets done in this world when all one wants to do is curl in bed with a good book and a cup of steaming hot coffee (or tea or cocoa, your preference).

I’m enjoying this break a little too much, I think. Christmas came a little late for me this year, what with Alphonse’s illness zapping some of the joy of the season. But the Community Mass at the Ateneo de Manila High School gave me a sense of what I was looking for. The Mass reminded me what the frenzy was all about and reawakened a joy I had felt missing in the last few weeks. Surrounded by the angelic voices of my son’s high school class and embraced by the kinship and friendship of my co-parents, I found much to be thankful for.   

The Ateneo High School Christmas Community Mass

with the class 4B as choir

We celebrated Christmas- autism-style, again- this year, and by this, I mean, we were prepared for everything. All my plans for a quiet dinner went out the window when Alphonse invaded the kitchen halfway through the final preparations. He insisted on sampling each of the dishes, coming back for seconds and thirds and even, fourths. Food I had left to garnish had to be hurriedly served, shared, and eaten; the alternative would have been to throw them away as it drives him crazy to find still uneaten food. Either consume it all or throw it away, that’s his motto. Glassware and delicate china had to be kept and replaced with sturdy plastic and melamine. We’ve learned through experience that there is no such thing as shatterproof when it comes to Alphonse. And finally, the rest of the food had to be hidden away in the oven warmer for later that night when he fell asleep.

Baked ham (missing its garnish as Alphonse had eaten most of it), Garlic Tiger Prawns, Lengua Estofado, Crab with Szechuan sauce, Lasagna, Japanese Rice- all served in small, manageable portions  (Not in picture: the meatrolls, chicken, caramel cake and DQ’s peppermint ice cream cake!)

All in all, our Christmas Eve was a collage of moments of chaos and panic (like when Alphonse tried to run away with the whole ham) but nothing we could not laugh about afterwards. The key to living with autism is finding the “funny” in everything. We treasure the moments when things go right and dismiss them as momentary stumbling blocks when they don’t. Tomorrow is always another day to make things right. We savor each moment, each smile, and each hug as if it were last. I’ve lived through the worst life has to offer- five years of daily, miserable violence and constant aggression- and nothing can ever break me again, as long as we are all together.

The kids had a lot of fun opening their presents. Even Alphonse was excited to get his pressies. He especially enjoyed ripping giftwrap paper. Big Brother let Alphonse open some of his presents and they had a blast tossing ripped pieces around. (Not a lot of fun for their mom, though.) Alex got more new clothes, a complete set of mangas, a capo for his guitar, and the computer game he was asking for. Alphonse got clothes, an Aquadoodle mat, a tabletop candy dispenser, and -guess what?- an iPad!  How the iPad found its way to our home is another story which I will share another day when I no longer feel the need to bawl my eyes out at the memory. Let it suffice for now to say that it involved more embarrassing crying in the middle of a crowded mall, haha.

Alex: What’s in the box, Ma?

Me: Fabric conditioner, Son. For your laundry, heehee.

Alphonse gets help with his presents from his Papa.

He got an iPad! (Alphonse smiles, poses for the camera, then tosses the iPad away. Thank God for the Otter Defender case!)

On Christmas Day, we celebrated with my family. Alphonse was particularly difficult that day, refusing to wear clothing and taking them off as soon as we put them on him. He wasn’t unhappy, that’s for sure; on the contrary, he was extremely happy that all he wanted to do was dance buck naked in the cold! We wanted to take photos too, but just getting him to sit down was a challenge; he kept running away. As you can see from the outtakes, family portraits require more than just sitting and looking pretty with our family. What we always need is brawn, and lots of it!

First attempt: Alphonse tries to run away, that silly boy!

Second attempt: Not only is Alphonse thinking of new ways of escape, the camera caught me with my eyes closed! Boo!

 Third attempt: Success!

And off he goes! Freedom! (Alphonse flaps his arms in happiness!)

I guess we’ll never ever be the kind of  family that spends peaceful days in holiday bliss, the kind, I imagine, that sits  for enjoyable, peaceful dinners with polite and  pleasant conversations. There’s always too much going on in our lives, autism and its many gifts always present and forefront. We’re the kind of family that runs after the one who has bolted away, that catches spilled food over and over again and mops it up, most of the time, with a smile, that stays up till 3:40 in the morning patiently waiting for one son to finally fall asleep. But, we find our smiles when others don’t, and knowing this, I am at peace. In fact, I am kind of glad. Autism may make many things more challenging and more difficult but the happiness that comes with it is a kind of  pure joy many people spend their lives looking for. 

I have much to be thankful to the One who gave up His Son for us. But let me just mention the most important gift He has ever given me- the one who stands beside me in the picture below.

Because with this man by my side, Christmas, even autism-style, is always perfect.

Season of Love

Today, when I woke up, the last lines of the “Apostles’ Creed” were still on my mind. I often pray the rosary to sleep, and of all the prayers, the “Apostles’ Creed” is the one that comforts me most. For me, it is a prayer of affirmation of all the things I believe in. By virtue of saying ”I believe,” I profess my faith actively. And although “The Lord’s Prayer” is powerfully majestic and the  ”Hail Mary” serene and graceful, I love the “Apostles’ Creed” because it represents a choice I willingly make each day. 

As we prepare for the last few days of Advent, it is easy to be overwhelmed by the commercialism and materialism of the season. What is Christmas without gift giving? What is the holidays without festivity? What is celebration without party cheer? Too often, we get caught up in the indulgences of the season and forget the real reasons we celebrate. I was reminded of this by this beautiful message that has certainly gone around the world many, many times. It is a timely reminder of why we rejoice in this Season of Christ’s birth. Truly, this is a season for gratitude and love.

I dreamt that I went to Heaven and an angel was showing me around. We walked side-by-side inside a large workroom filled with angels. My angel guide stopped in front of the first section and said, ‘ This is the Receiving Section. Here, all petitions to God said in prayer are received.

I looked around in this area, and it was terribly busy with so many angels sorting out petitions written on voluminous paper sheets and scraps from people all over the world.

Then we moved on down a long corridor until we reached the second section.

The angel then said to me, “This is the Packaging and Delivery Section. Here, the graces and blessings the people asked for are processed and delivered to the living persons who asked for them.” I noticed again how busy it was there. There were many angels working hard at that station, since so many blessings had been requested and were being packaged for delivery to Earth.

Finally at the farthest end of the long corridor we stopped at the door of a very small station. To my great surprise, only one angel was seated there, idly doing nothing. “This is the Acknowledgment Section, my angel friend quietly admitted to me. He seemed embarrassed.” How is it that there is no work going on here? ‘ I asked.

“So sad,” the angel sighed. “After people receive the blessings that they asked for, very few send back acknowledgments”

“How does one acknowledge God’s blessings?”I asked.

“Simple,” the angel answered. “Just say, Thank You, Lord.”

“What blessings should they acknowledge?” I asked.

 “If you have food in the refrigerator, clothes on your back, a roof overhead and a place to sleep you are richer than 75% of this world. If you have money in the bank, in your wallet, and spare change in a dish, you are among the top 8% of the world ‘ s wealthy. “

“And if you get this on your own computer, you are part of the 1% in the world who has that opportunity.”

“If you woke up this morning with more health than illness .. You are more blessed than the many who will not even survive this day. “

“If you have never experienced the fear in battle, the loneliness of imprisonment, the agony of torture, or the pangs of starvation .. You are ahead of 700 million people in the world..”

“If you can attend a church without the fear of harassment, arrest, torture or death you are envied by, and more blessed than, three billion people in the world.”

“If your parents are still alive and still married …you are very rare.”

“If you can hold your head up and smile, you are not the norm, you’re unique to all those in doubt and despair…….”

Ok, what now? How can I start? If you can read this message, you just received a double blessing in that someone was thinking of you as very special and you are more blessed than over two billion people in the world who cannot read at all. Have a good day, count your blessings, and if you care to, pass this along to remind everyone else how blessed we all are

ATTN: Acknowledge Dept.

“Thank you Lord, for giving me the ability to share this message and for giving me so many wonderful people with whom to share it. “

If you have read this far, and are thankful for all that you have been blessed with, please share this message.

I thank God for everything, especially all my family and friends.