The story of an illness from cover to cover

Inside a 'little blue book' is her record of trial and triumph.

By Laura A. Lull, Special to The Times
January 28, 2008

I'VE had my little blue book for almost a year now. It's a square book, covered in a light denim material -- like new jeans. The book has a brightly colored ribbon with six small loops running lengthwise across the cover. Inside the loops are six colored pencils. The pencils are small, like the pencils at golf courses. And they're always falling out of the loops if you try to put the book in your backpack or purse.

When my husband brought the get-well bag containing the little blue book to the hospital for me, I had no idea what would fill the seemingly endless blank pages inside. But the fact that the little blue book had colored pencils was a start -- along with the fact that the friends who got me the book had included some fun stickers in the bag.

At the time, I was experiencing a roller coaster of emotions: sadness, frustration, anger, hope and thankfulness.

The first pages of the little blue book contain basic drawings and phrases, which, then, were things I desperately wanted to say out loud but couldn't, as some of them would have been offensive. My two favorite drawings are the one that my husband sketched of me (luckily he didn't include the ugly hospital gown) and the one that I drew of the airplane -- the airplane that was bringing my parents to Los Angeles to help care for me during my recovery.

I am not sure how it happened, but slowly, the little blue book turned into my story -- my health history over the course of the last year. It contains information on everything having to do with my illness: medications and dosages, questions that we needed to remember to ask the doctors and nurses and recordings of my vital signs. It also contains more childlike drawings, funny poetry that materialized from my dreams and interesting quotes from friends.

When you're ill, be it with an acute illness such as mine, a chronic or even terminal illness, it's important to have an outlet not only for information, but also for emotions. It's also imperative to have something that allows the person who is ill to take control. My little blue book has accomplished its mission and more. It represents my strength and courage, my hope and positive attitude, and that of my family and friends, as we waged a battle against my illness -- a battle that we won.

I encourage anyone who has a loved one or a friend with an illness to offer up "a little blue book" as a symbol of hope and a path toward wellness and peace.

Laura A. Lull is back at work and back on the tennis court after battling acute kidney failure for most of 2007.

http://www.latimes.com/features/health/la-he-myturn28jan28,1,7258618.story?ctrack=

Inspirational tale of a mother's love conquering all

They said her disabled son would never even recognise her, but Nia Wyn proved them wrong, says Rosita Sweetman

It begins in summertime with Nia (a journalist who's just quit her job) and Alex (a photographer on the same paper) hanging out in their flat in Cardiff, eagerly awaiting the birth of their first baby. He arrives -- blue eyed, black haired, pearl-skinned perfection -- to bliss all around.

Bliss flips over into terror within hours though, as baby Joe's skin colour changes, and he is rushed down to intensive care, frantic mum and dad rushing after, as if they'd had their "insides taken away".

Initial diagnosis is not serious. Nia has had (undiagnosed) diabetes; Joe's blood sugars have been "all over the place". Post "stabilisation", mum, dad and baby are sent home. Family and friends' joy is unbounded, but Nia is worried. Joe's cry has changed. She can't feed him. He arches back, flinging wide his arms.

She's told everything's fine, she's just an anxious first mum, she's got "baby blues". But, when Joe returns, barely now functioning, for his first specialist assessment, there is panic all around.

After endless tests, the specialists announce Joe's fate: his brain has been wiped out -- "severe cerebral palsy". He's blind, epileptic, quadraplegic, will never walk or talk, he will not even recognise his parents who, as they sit there receiving this onslaught of horror, barely recognise themselves.

The long road to hell and back, begins.

At first they are in such shock, and baby Joe so doped up, they crawl through their broken world, speechless. "It's like a death," says Alex. "It's like a never-ending wake," writes Nia in the gold notebook Alex had given her to write the baby's milestones in. Except now there are no milestones, and, just to make sure they realise the extent of their loss, both Nia's best friends give birth to "perfect" babies.

It's a Pakistani shopkeeper at the end of their road who first helps, telling Nia she is so lucky. In Pakistan she would have lost Joe; there would have been no drugs to save him. So Joe is precious.

Slowly, despair at the extent (catastrophic and irreversible according to the doctors) of Joe's brokenness is replaced with "an overwhelming need to heal", an urge "beyond sense and reason". Mother love kicks in.

Nia begins to make contact with alternative practitioners -- herbalists, homeopaths, reiki healers, and, of course, other stricken, mums. Her own mum, visiting her in The Rescue Foundation's little string of shingle cottages, each containing a mum and a damaged child, says it's "the most desperate place on earth she's ever been".

Nia's nights are spent trawling the outer reaches of the internet, as the doctors counsel that it's hopeless, that she and Alex are "in denial", and must learn to accept it, that the therapies and potions are "pie in the sky" and "unproven". When Nia tells the neurologist she has a hunch Joe would do better off some of the epilepsy drugs, she's told not to be "ridiculous". He will always be on them, they say.

But now the gold-covered baby book is crammed with therapies, patterning techniques, tapping techniques, light-on-light-off techniques, a frantic, 24-hour, 365-days-a-year struggle, to reach down the shattered neural pathways of their little "broken Buddha" and bring him into life.

Aged 18 months, Joe's first milestone is an unbelievable triumph: his brain waves test at the hospital show "normal". The "irreversible" epilepsy is no more.

A few days later Joe reaches out, deliberately, with his left arm, for the first time. "There is a spark," Nia writes in her diary.

Nia's astounding efforts to fan that spark into a blaze continue night and day, and aged two, as Nia stands over his cot watching him drift off to sleep, with huge effort, Joe lifts first one arm, then the other around his mum's neck. ("I never knew a hug could mean so much").

Source: independent.ie



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