Archive | June, 2017

The A- Team

18 Jun

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.”

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An Extraordinarily Ordinary Life 

1 Jun


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.