Week 9

We are on week 9 of this nightmare. We have had many really bad days- horrid, horrible days that tested our patience and strength many times- and a few not-so-bad days in between, when we could almost breathe normally and pretend the nightmare does not exist. We have had many sleepless nights and wakeful days of tears and rage, of pain and sorrow. Somehow, we are all still here. We are bowed, beaten, and crumbling, but we have made it this far.

Yesterday, I saw Alphonse’s neurologist and his developmental pediatrician for follow-ups. Friday last week, I was at his psychiatrist’s clinic. His medications have been increased again; Abilify is now at 15 mg/day (10mg in the morning and 5mg at night), Nozinan at 125mg/day, with the allowance to increase it to 150mg as needed, and Depakote ER at 1000mg/day. It’s still a lot of trial and error trying to find the right mix of medications and activities for him. Just when we think we see a little progress, his anger surfaces again and we are back where we started. Yesterday was a particularly bad day. He was awake at 3:10 am and would not, or could not, go back to sleep again. He was irritable and demanding the whole day.  My scalp has a new wound from being bitten and more sore spots where the hair was yanked forcefully many times. Everyone, it seems, has new scratches and bruises every day.

Everything is fragile, my friend said to me, and indeed, it is true. Every moment in our lives is a balance of peace and strife, every moment paid for with tears of hopelessness and despair. Many, many times, we are almost without hope. Many, many times, the darkness consumes every single happy thought in our lives.

We are beaten and bowed. Our backs are bent. Our knees are on the ground. And still we plod on, treading wearily through days and nights of sorrow.

All for the love of  a child.


The Week Gone By

It’s been a week since I last posted an update on my blog. I apologize to those who left comments/ suggestions, and sent private messages and e-mail. I know I have been sorely remiss in answering your messages but it’s been difficult finding the time to sit down and write. Aside from the death of our monitors which has severely limited my access to the Net (he threw two monitors on the ground one after the other), from waking to sleeping, all our hours are devoted to keeping Alphonse safe and happy. We have not always been successful but we keep trying anyway.

It’s been three days since we got home from the hospital. Following my post last Monday, we conferred with our doctors to look for a hospital placement for Alphonse. On Tuesday, after several failed attempts to secure a private room for Alphonse in any of the hospitals our doctors are affiliated with, the only other option left to us was private psychiatric facilities in our city. My husband and I thought long and hard about this arrangement- Alphonse would be placed in a secure facility without us and he would be in a mixed population of adults of various ages and diagnoses- we decided against it. Alphonse, despite his size and strength, is still a child and putting him in with adults did not seem like a good idea. We decided to look for other options and wait. As physically exhausted and as emotionally drained as we were, Alphonse’s safety and security could never be compromised.

In the end, we were fortunate to get help from our developmental pediatrician, who, having just come home Tuesday night from a medical congress in France, immediately admitted Alphonse to the hospital under her care. She referred him to various disciplines for evaluation and he was seen by psychiatry, neurology, cardiology, and gastroenterology. Despite an extensive investigation, none of the results we got were conclusive. He is physically healthy. Even with seven years of Risperidone use, his liver and kidneys are perfectly fine. He has mild gastroesophageal reflux, which was already being treated prior to his hospitalization. His ASO titer is negative but his markers for inflammation (ESR and CRP) are elevated, pointing to a nonspecific infection in his body, and perhaps these deserve another look see.

In the hospital, Alphonse displayed his bizarre compulsions by forcibly removing the telephone, buzzer/pager, and blinds. We saw him eyeing the wall-mounted television so that had to go, wall mount included. Later, he pushed the mattress off the hospital bed to the floor, where it would remain, for the duration of our stay. We were without blinds so we fastened sheets on the windows when he fell asleep to give us some privacy. When he awakened, he would pull them down again. Intramuscular injections of olanzapine were given when Alphonse was agitated. This powerful antipsychotic, however, did little to help him sleep as Alphonse stayed awake the first night in the hospital, taking in a total of three hours of sleep over a 36 hour period. When an IV line for anesthetic premedications (they out him under general anesthesia to get the endoscopy and CT scan done) were inserted, he became severely agitated; he bit the IV tubing in less than 15 minutes. His doctors settled for a hep-lock instead.

Because he did not display overt aggression in the hospital, we were hopeful that his medications had finally reached therapeutic levels in his blood. We were released after a three-day stay in the hospital, with prescriptions for his medications (Abilify, Nozinan, plus a new one; our neurologist added Depakote as a mood stabilizer). Since our medical insurance did not cover this hospitalization, we paid for all of these out of pocket.

Still, the ride home should have given us a sign that things would not go well for us as soon as we came home. Alphonse was hyperactive, manic, and frenetic. He took off his seatbelt, transferred seats and rows inside the van countless of times, much to his dad’s dismay. He removed the contents of our bags, strewing them inside the car. Near the house, he grabbed the head of the nanny sitting nearest him and yanked her hair hard till the roots came out. The violence and aggression were back and it would continue to haunt us all weekend.

On Saturday morning, he awakened at two in the morning and proceeded to terrorize all of us again. He trashed our bedroom, overturning my table and destroying my hello kitty cabinets. He kicked electric fans in a fit of rage, sending them flying across the room. And he came at us again and again, pulling our hair, kicking and biting, scratching and pinching. We were back where we started.

We gave his meds at the appointed time and he seemed to calm down for a while. Perhaps he had exhausted himself as well, as he fell asleep mid-morning. We had not eaten a bite since dinner (lunch the previous day for me), our house was a mess, and we were run ragged but we slept when he did, if only to catch up on our flagging energy.

Sunday was the same story. While his medications brought us some moments of calm, he still had frequent tantrums that brought all of us to tears. Even his dad was not spared as he now sports cuts and bruises on his neck, chest, arms and hands. He is not eating and drinking enough and it takes all sorts of cunning to convince him to take more than a sip of oral rehydration solution. Between his anorexia and the effects of the drugs on his system, it’s heartbreaking to see him looking the way he does today, still so unhappy and so angry.

We thought long and hard if we should return him to the hospital, but we decided to keep him here at home and work through this. We have hired male help to assist us at home and our case manager, teacher Rod David, has generously gone out of his way to assign us male therapists for twice daily sessions, Monday to Sunday. By putting him back on a strict schedule, we hope to help him find security and safety again. I am grateful to teachers Paolo, Wilson, and Mark for their dedication and their willingness to sacrifice for us.

Meanwhile, as we continue to exhaust all possible remedies to this relentless siege, we hold on to prayer for comfort and support. To all those who left comments and suggestions on this blog, on my Facebook account and my e-mail, thank you. I am listening to all your ideas, taking them in, and learning to use them to cope with this better.

We continue to struggle each day. It’s a hard uphill climb to get back to where we were a few months ago. Yet, despite many moments of despair and desolation, of anguish and tears, of heartbreak and sorrow, we hold on to our love for our son and for each other. And we hold on to you, dear friends, for your support, your words of kindness, and your prayers. Your kindness is our salvation.


As soon as I got up this morning, I vomited, the sour, bilious taste rising in my throat in nauseating waves. I took a deep breath to calm and focus my frayed nerves, wiping the edges of my mouth off last night’s meal. My heart was racing. I noticed my hands and knees were shaking; I held on to the sink for support as my stomach heaved more of its contents out.

Alphonse’s three-hour rampage last night ended nearly at midnight. He tossed our bedroom, pulled the computer monitor off the table and ripped its cables, shoved a lamp and the telephone off an end table, and upturned a freestanding cabinet, sending CDs and DVDs flying. He overturned electric fans and chairs, and insisted they stayed that way on the floor, touching them repeatedly in turns. When restrained- and we all had to help: four nannies, his dad, his brother and myself (yes, he is that strong), he would get more inflamed and incensed, struggling violently to push us away, kicking, flailing, and threatening to bite. He caught me by my hair and shook me like a ragdoll a few times. He caught Alex in the abdomen with a vicious kick that sent his brother reeling.

Last night, as his tantrums subsided into manic shouting, an air of funereal somber settled upon all of us. All around us was chaos and turmoil. What little sliver of light we had seen in previous days evaporated in the darkness of our dismal lives. Please, God, why did this happen to us?

When Alphonse finally accepted our caresses after his initial distrust, we settled him into bed with us. Singing through my tears, I ran my fingers through his hair over and over again. Meek as a lamb and wedged tight between his dad and me, he kissed me thrice on the lips and then fell asleep. Assured by his soft snoring, we gently disentangled ourselves from his hands and cleaned up, moving things quietly and throwing away broken bits of things he left behind. I sobbed myself to sleep, as A could do no more than hold me and let me weep all my tears dry.

I worry about A and Alex and how this burdens them more. A goes to work early and immerses himself in the demands of the day. He calls often to check on us, swallowing the worry that must eat at him too. Alex holds himself together and puts a brave face in front of his classmates and teachers. He pretends nothing is amiss when asked. In the past, he has told me that speaking the truth feels like a betrayal of his brother. And yet I know that there is pain and resentment simmering inside him. No wonder he prefers to stay late in a study center near school; he cannot find a moment’s peace at home.

Today, my neck is stiffer than ever. My right hand is weak and achey. And still I must write and put this all down, lest I go mad with despair and misery.I need to remind myself to look beyond here and now, to stop staring into the bleakness of our lives and start believing that the light will come again. I cling to this hope with all my heart. It is the air I breathe; there is nothing else left.

And so, I force a smile on my face and dry the tears that won’t stop falling.

I am ready, Alphonse. I am always ready for you.

Coyote and Road Runner

One of my favourite cartoon shows when I was growing up was The Looney Tunes’ Road Runner and Coyote series. I never liked Wile E. Coyote. He always seemed so smug, so cocky, and so full of himself. The Road Runner, on the other hand, was a hands down favourite. He  always seemed more innocent to me, happily speeding along the desert highways without a care, seemingly unaware to danger and the hunger of his wily nemesis, yet the same time, almost always in step with the devious plots of his insatiable predator. As a child, I found it hilarious when Coyote got his comeuppance and all his mail-order devices from the Acme Corporation not only failed to deliver the Road Runner to him, but often worked against him.

Last night, Alphonse toppled a wooden cabinet on my foot, the last stroke of his ten-minute rampage.  I was hopping like crazy and mouthing silent “Ow! Ow! Ow!”s from the pain when I suddenly saw a vision of myself as the Coyote in my life’s cartoons. For even as I try to catch up and understand the way Alphonse sees the world, he always seems to be one step ahead of me. Like the Road Runner, Alphonse is seemingly oblivious but obviously always attuned to what’s going on around him. He senses things more deeply than others, and thus, is often offended or roused in anger or inflamed by the oddest things. And though my goal in life runs opposite of Coyote’s predatory instincts, I fit the part of Alphonse’s Coyote in these not-so-hilarious episodes of our lives. I run after him constantly, chasing him all day, even. I deviously manipulate our surroundings to work for us and design elaborate plans of action for each step of the day. And armed with all sorts of conveniences to get his attention and cooperation, I become the eternal antagonist in this exhausting chase.

Food is a major stressor for him these days, but I can’t make the connection how and why. The elements of this particular mystery are still too vague and unclear. For someone whose appetite has always been huge, it is puzzling to see him get upset at the sight of food. Knowing that this often brings about devastating meltdowns, I’ve been very vigilant about restricting his access to food, unless given in smaller, more manageable portions and distributed evenly throughout the day. Last night, however, one of the nannies forgot this and left an almost empty ice cream tub on the kitchen counter. Alphonse saw it, ate the rest of the ice cream without any signs of pleasure, and then smashed my display cabinet of figurines. He sustained some small cuts on his foot and a larger one on the palm of his hand before he could be fully restrained.

Alphonse’s amazing ability to bleed copiously from even the smallest wounds was made worse by his steadfast refusal to have his wounds cleaned or wrapped up. My house still looks like a crime scene this morning, what with all the blood he left on the bed and some he spattered on the floor and walls from flailing at us. A was able to commandeer him to the upstairs bath where he forcibly bathed the struggling boy. We could not hold him long enough to put pressure on the lacerations or cover these with bandages; he pushed us away each time with force. In the end, we simply waited for the bleeding to stop. Our sheets are stained where his bloody hand touched them. I was simply too tired to wash out the stains last night.

This morning, Alphonse seemed more sober, but unhappy still. It’s going to be another long day, I can tell. And like Coyote and Road Runner, the chase continues. Beep beep!

Drowning in Darkness

I need to feel happy today. I want to smile but I simply can’t.

Alphonse tipped over our dining room table yesterday at noon, smashing its glass to bits. The antique table is damaged, with shards of glass embedded deep into the grain of the wood. I hope we can salvage it; this dining table has been in my family since I was five; it was a gift from my parents when I moved away. The glass of the small china cabinet in the dining room was also smashed but the cabinet is intact. Then last night, annoyed at some slight, he threw our dish drainer to the floor, breaking several pieces of Corelle glassware and A’s latest gift to me- my new, barely week-old, twice-used Kimmidoll mug. Even the melamine dishes were not spared, as the violence of his action pulverized some pieces to smithereens.

Today, as soon as he woke up, it was a cycle of nonstop anger and smashing of things again. He upended shelves and tossed the pictures on his schoolhouse wall. He’s very angry and we don’t know why. He cries a lot and we don’t have a clue to what is going on inside his head. It’s very hard to predict Alphonse’s moods. One minute he can be quiet and meek, the next he will get into such a tornado of fury that nothing can stop the force of his explosive anger.

I admit to having shed some tears, not at the loss of these material possessions, but at my inability to understand Alphonse these days. I called A from work yesterday at noon; he went home to help with Alphonse while I cleaned up all the glass scattered inside the house. And then we went for a ride and he let me cry for a while in the car. I promised myself  when this all started that I will not cry, that I will force myself to be stronger this time, but if I don’t, I know I will die of a broken heart. Our house is in shambles; our lives are in disarray. It makes me feel so helpless when Alphonse gets these rages. My husband comforts me by reminding me that Alphonse listens to me most of all, but how can that be anything than a trifling consolation when there are still many moments when I can’t reach him or get through to him?

We are slowly drowning again. Oh, God, please help us.

Back to the Rollercoaster

Yoohoo! Anyone still there? I’m back!!!

I’ve a few stories and pictures to share with you of the time I was absent from this page but for now, allow me to catch my breath and take in some time to get myself together again. There are tons of stuff to do. The house my husband and I left in moderately pristine condition now needs a major clean-up.  There’s a pile of laundry left over from the trip, additional wash to our daily load. The cupboards are almost empty; I have made a mental note to schedule another run to the grocery sometime soon. And I still have to do some detective work, trying to find things that have been misplaced in my short absence (like the television remote control and a shoe from the pair of Alex’s school shoes). Wait, is there now a black hole in this house? 

It would’ve been easy if all I were dealing with is manual labor. Housework is easy, compared to the rest. I still feel really guilty about having left my boys while they were sick and even as I left them in extremely good hands, it didn’t diminish my worry or my guilt in any way. Both my boys are still recovering, with antibiotics to be given a few more days and thrice-daily nebulizations to help them breathe better. Yet, were it just physical illness, that too, would not be half as bad.

The one who suffered the most in  our absence is Alphonse. He has been having meltdowns more often these days. He’s depressed and angry. He’s back to his old tricks- upending things and smashing them, pulling hair, grabbing shirts, kicking, and there have even been some biting. We’ve been able to redirect his anger most of the time but it’s hard, hard work that drains everyone of strength and good cheer. Sometimes, he seems to forget who we are as his anger consumes him. Alex has a bite wound on his left chest from Sunday night, the result of trying to restrain his brother from doing more damage to the house while we were gone. 😦

It seems like we’re finally experiencing the real effects of all his illnesses, compounded by the absence of a rigid schedule during the holidays. It could not have helped that this last trip coincided with another bout of sickness. He’s angry, uncertain, and perhaps, a little afraid at the sudden unpredictability of his normally routine life. It’s hard to look at him without feeling anguish as he grapples and fights with us. He’s slipping away again.

In the meantime, while I still wrestle with my guilt, I must look forward to the work of making Alphonse whole again. It’s the only way to stay sane in this rollercoaster ride.