วันพุธ, 27 สิงหาคม 2551 10:14
The story of a deathly ill 'throwaway kid' who for simple reasons decided to make the struggle for his life.

It's funny what it takes sometimes to turn a life around. For Cookie Crumb James, all it took was a tasty meal, some cookies. And crumbs.

He came to us a total mess. Basket case material. Couldn't walk, couldn't crawl. Barely speak (or didn't want to), large industrial-sized migraines that fried his brains. Not a friend in this world: he was born with HIV and has AIDS. Perfect example of a "throwaway kid". He was eight years old. Size large for a HIV/Aids kid. That means normal size of an ordinary eight year old. Scarred face, bad left eye: shingles (herpes zoster) did that. But he ain't ugly! He's our Cookie Crumb James. You'd like him if you met him. Great lopsided grin.

When a child is brought to us out of nowhere - end of the line and "junked" on our doorstep - in hospice lingo we call that a "dump." A few days after the "taxi dump" at our Mercy Centre, we bestowed on Cookie Crumb James a special ribbon for bravery, valor, and determination. But by the second day, James slobbered rice gruel all over the ribbon. So much for valor.

We rarely do such ribbon ceremonies. In eleven years with AIDS children, we've only bestowed a ribbon of honor once before - to a very special girl (but that's a story for another day).

Cookie Crumb James of the Soiled Ribbon decided to get better. Not right away. Nothing is ever that easy. The effort and energy you need to get well and just wanting to live can be an unbelievably difficult decision. But eventually, make the decision he did. Probably for lots of heavy duty type awesome reasons. But heck, on the surface, like so many of the "calls" that flip our lives upside down, Cookie Crumb James' biggest reason seemed so simple.
It came down like this.

We took all the HIV/AIDS kids to a restaurant and carted Cookie Crumb James along. It was normal fare - add-water-stir-slowly-to-simmer-for-three-minutes kind of grub. But he went bonkers over the stuff. Claimed it was the best food he ever tasted. "Awesome."

One of our very smart house moms cut a deal on the spot: "Kid, I'll change your Huggies quick when you stink and your bottom itches if you promise to walk. And when you walk, or even crawl, we'll all come here again and you can have all you can eat."

The house mom figured that if she could get this kid up on his pins, walking, when he got that "morning urge" they could point him towards the toilet. One less stinky bottom! A smart lady.

The other kids picked up on this promise and began getting in Cookie Crumb James' face. Daring him to walk, calling him a sissy. Making him cry, making him angry. Besides, they didn't relish being downwind of Cookie Crumb James. He had a talent!!! Oh he had a smelly talent! (The kids were also in favor of anything that would get them out on the town for an all-you-can-eat dinner.) But back to our first meeting with Cookie Crumb James...

They brought him in a taxi from another hospice. Couldn't deal with his T.B. plus HIV/AIDS. Maybe they could have, maybe they couldn't - that wasn't our call. It was the end of the road for a double throwaway dead-end kid. And he smelled. Stunk.

In those first moments with us, propped up in a wheel chair, dripping poop, whimpering, somehow you knew he was one of those special kids: "I dare you to take care of me and love me. Go ahead, just try, and I'll get better." Maybe all kids are that way. We probably were too.

They lugged him into an empty bed. A house mom slipped, and grabbed his shirt. He almost hit his head, screamed, but they did catch him. That's all it took. Young James knew someone cared.


Finding a Friend

The first kid he met was Master Nok Yak (meaning "Giant Bird" in Thai) who is a scrawny, half-the-time sick seven year old who also has AIDS. He looks like a five year old, even after a full meal. Nok Yak walked over to the bed and held Cookie Crumb James by the hand. Offered him a bite of his cookie. Looking him over. Sizing him up. But something happened: they clicked. It was going to be okay. Cookies could be shared. Both of them throwaway kids, but who cares, as long as there is a supply of cookies? The rest would take care of itself.

For a year, Cookie Crumb James wasn't fun. Didn't like himself very much. Didn't like what the virus was doing to him. Spent a lot of time in bed with raging headaches. They massaged his forehead 10 - 15 minutes a couple times a day. Then put an ice cold cloth on his forehead. He would stop whimpering till the cloth warmed or he fell asleep. The house mom was mostly rough and often impatient with him, but after you've been abandoned, just wearing clean diapers, getting massaged, having an ice cold cloth on your forehead, these little things seemed like heaven.

And his friendship with Giant Bird bloomed. At mealtime, this seven-year-old scrawny kid would wander over to Cookie Crumb James' bed and help feed him. The first spoonful went in the mouth, the second spoonful slipped accidentally - ho! ho! ho! Smearing food in his face and hair. Usually Cookie Crumb James cried. Sometimes, when the headache wasn't too bad, he and Giant Bird would giggle and laugh. But James was eating regularly, gaining strength. One day, when the food smearing wasn't fun, he kicked Nok Yak with his good leg. Nok Yak cried and kicked back. Cookie Crumb James cried, too. Trouble. And then more trouble: The house mom cuffed them both and gave them some sharp words. She had had a fight with her drunk husband the night before and a few other kids in her care were really sick.

So Young James got stubborn. Said he could feed himself. It started off with his mouth in the plate, like a puppy dog. But the other kids made fun of him, and he got his good arm in action and started to hold a spoon. Kind of.

And his house mom, for months she scolded and scolded. Told him to walk . Called him a sissy. But she knew the rules. Knew how much Cookie Crumb James could handle. She had that gift. When Nok Yak, alias Giant Bird, teased mean or played too hard, she chased him away. She's a beat up slum lady with an end-of-the-line job. Caring for dead-end, throwaway kids and cleaning toilets. But she loves kids, can't help herself.

Forced into the unwanted job of being a surplus mom. Didn't want to get too close to the kids like a real mom. She has her own kids: tattoos and trouble, but they are alive and not sick. She doesn't know if she can handle the visit to the temple. Cookie Crumb James and his pals like Giant Bird with AIDS make that last journey. To go, not to return. To sleep, not to wake. Death with no escape.


After the Crash

James has been with us seventeen months now, and at nine years of age is starting first kindergarten. Just a year behind his friend Giant Bird. Cookie Crumb James can't see well out of his left eye, but his right eye is almost fine. The daytime Huggies are gone, he can talk clearly (when he tries) and understands everything. The house mom loads up his lunch with 2 or 3 cookies and he shares them with everyone and cries when there's none left for himself.

Several weeks back he and Bird trashed his makeshift wheel chair. A bright red toy cart with a round steering wheel - no pedals, just rubber wheels. He propelled it by pushing forward on the floor with his good leg. Oh, did he and Giant Bird ever total out that poor wheel chair cart! It happened like this: the daily time trials were on. Cookie Crumb James propped up, riding that toy cart like he was a wild Formula One driver with Giant Bird pushing him from behind. They'd crash into everything - walls, pillars, potted plants, other kids. They'd crash and bruise and laugh and sometimes cry. Part of getting well and just being boys.

And then one day they got up from a crash. Bent wheels stuck, the cart wouldn't move. So James took his first steps and Big Bird held onto him until they both fell down. They giggled and laughed on the floor. Stayed down there a good while, resting, because kids with AIDS can play hard but they don't have a lot of energy, and it takes them a long time to catch their breath.

But get up they finally did, and Cookie Crumb James took another step. Then one day, he stumbled down the stairs. Oh dear, the house mother told him good riddance, to come back up himself or you get no supper. Took him two hours and she wouldn't let anyone help him. But a kindly volunteer who happens to be physiotherapist did encourage him, that day and everyday. Now James walks to school about 100 meters every day and falls down only a couple times. Not too shabby for a throwaway kid. Guess that other hospice didn't know he was Cookie Crumb James of the Soiled Ribbon.

We know little about his past. His parents were itinerant construction workers. Mom is Aids dead with a dad and a Grandma somewhere. Also there's a healthy sister a year older. We're trying to find her: don't think she knows.

Meanwhile, Cookie Crumb James is thriving. Broken walking, loopy left arm and a lopsided grin. Giant Bird is his best friend and they fight a lot, make up, play, and fight again. That house mom doesn't call him a sissy anymore. Yes, that last trip to the Temple - one day at a time. And Cookie Crumb James knows he has a real mom.

I said just above that he and Giant Bird play and fight a lot. That's not totally true now.

Presently, Half-the-time sick, Giant Bird is only making it to kindergarten about one or two days a week. Now, it's Cookie Crumb James that comes and holds Giant Bird's hand and helps feed him. First spoonful in his mouth, second spoonful all over his face and hair.

On the strong days, Cookie Crumb James walks, dragging his bum leg along slowly so Giant Bird can keep up. Their classmates don't poke fun anymore. And everyone is gentle to Giant Bird. Yes, kids can be cruel, but mostly they are kind. They know no self pity. That has to be taught.

This is one of those "Great Stories." That there is good in this world and dreams that are worth fighting for, that we should never give up. Really. That down deep, all of us are dead end throwaway kids. Cookie Crumb James and Giant Bird are the stronger ones.

Last Saturday morning, after anti-virals and breakfast, the house mom baked some cookies with the children. Out in our yard is a small cement pond with water lilies. Someone making merit bought half a dozen fish, freeing them into the pond. Cookie Crumb James had located a fishing hook with some string. He and Bird stuffed their pockets with fresh baked cookies and, grinning, walked over to the pond. Maybe the fish liked cookies.

He came to us a child without time and without space. Cookie Crumb James.