A mom's long goodbye to her children:No hiding the truth from the kids as mother struggles with ALS

This article is about my friend Aimee. We went to high school together and she is one AMAZING woman. We love you Aimee!
http://www.msnbc.msn.com/id/16759130/

Sunday, January 28, 2007

By MARTHA IRVINE
of the Associated press

GRAYSLAKE - Seven-year-old Nicholas Chamernik had rarely seen his parents cry. So he felt a pang of worry when he looked up one evening to see his father wiping away tears.
"Dad, what's wrong?" he asked.

Jim Chamernik was too choked up to respond. After 18 months of grasping for answers, he and his wife, Aimee, finally had an explanation for symptoms Aimee had been having - slurred speech and weakness in her right arm among them. The diagnosis was Lou Gehrig's disease, a degenerative condition of the nervous system, also known as ALS.

There is no cure. But how could they explain that to their eldest son, the first in the family to notice his mom's slurring as she read him bedtime stories?

How, they wondered, do you tell a child that his mom is dying?

It would be tempting for a parent to shield a child as long as possible from such a painful reality. But the Chamerniks have chosen a different path - one of gentle honesty. Theirs is the story of two parents doing the best they can to help their children understand and cope with terminal illness.

The process began that night more than two years ago with a question from their son. It has only led to more questions - and even on their toughest days, the Chamerniks have attempted to answer each one.

'Dad, what's wrong?'

Aimee - seeing that Jim was struggling - took a deep breath and sat down in the family room of their suburban Chicago home. She pulled Nicholas onto her knee and put her arms around him.

"You know I'm having trouble with my muscles, right?" Aimee began, surprised at her own composure. Her son nodded.

"Well," she said, slowly, "Daddy's sad because the doctor told me they're not going to be able to help me get better."

Nicholas sat there for a moment, thinking about what his mom had said, and then responded in his 7-year-old way. "You know mom, when I grow up, I'm going to be a paleontologist and a St. Louis Cardinals baseball player and a zoologist and a person who studies plants," he said, breathlessly.

"Well, I'm also going to be a doctor," he said. "So if you're still alive, I can help them find out how to make you better."

Four words from that conversation still echo in Aimee's head - "if you're still alive."

They were the first indication that, at some level, Nicholas understood the gravity of her slow decline. That moment also marked the beginning of a long goodbye for a 37-year-old mother whose oldest children will be lucky to reach their teenage years before she dies.

"I didn't think she'd be alive as long as other people," says Nicholas, now 9. "But I still thought it'd be a long time."

Even Aimee's doctors don't know exactly how long she has. The average life expectancy after an ALS diagnosis, they've told her, is two to five years. It's been a little more than two so far.

'Still the same person inside'

Already, her children - Nicholas, Emily, now 7, and 3-year-old Zachary - have seen her fall several times. She reluctantly uses a cane in public spaces and struggles with tasks most people take for granted - navigating stairs, opening a soda can, unbuckling a car seat strap.

Even as her body weakens, she constantly reminds her children: "Mommy is still the same person inside."

But knowing she eventually will lose her ability to move and speak, there is a quiet urgency in the Chamernik household to pack in as much family time as possible and to have the conversations they can't have later on.

"Did you go to doctors?" Emily asks one evening during dinner.

It's a question she's asked many times before, but Aimee willingly responds again.

"Lots and lots of doctors," she says, telling the family about tests with needles stuck into her legs and above her eyebrow.

"That one hurt more than anything," she says of the latter.

Often, her kids ask why her muscles aren't working.

At first, Nicholas thought, "Why can't she just exercise to be stronger and faster?"

Emily remembered her mom talking about the importance of good nutrition and wondered, "Did mom eat too much dessert?"

Aimee tries to explain what's happening to her body in ways they'll understand: She tells them how motor neurons are like "mailmen" - some that still deliver "letters" from her brain to her muscles, while others have quit and headed to Florida for vacation.

No question is off limits. And often, they come out of nowhere.

One day, one of her kids asked, "How long will it take for your skin to fall off after you die?"

Aimee winced inside, but replied in a matter-of-fact tone that, while she wasn't sure how long it would take, it wouldn't matter because she wouldn't need her body then anyway.

Often, Nicholas' queries are fact-based. Because he's a baseball fan, he's interested in Lou Gehrig's fight with the illness. He copes by focusing on possible solutions, dreaming up inventions that might help his mom walk and even run again.

He also frets a new stepmom might throw away his Pokemon cards, which he calls "one of my most prized possessions."

His sister's reactions are often more emotional.

"Emily sometimes will run up to me and throw her arms around me so tight and say, 'Oh, Mommy, I just love you,' and say it with such intensity and hug me with such intensity that it takes my breath away," Aimee says.

"My reaction in my head is, 'No, no, don't love me that much, because if you love me that much, it's going to really hurt when I'm gone.'"

Sometimes, Emily fantasizes about a special telephone to heaven she could use to call her mom. But what will she do, she wonders, when she needs a hug from her mom?

Aimee's eyes fill with tears at the thought of not being there. "There's no way to prepare yourself for the heartbreak of a child asking, 'What am I going to do when you're not here?' " she says. "There's really no way to answer those questions."

Still, she tries - and reminds Emily that her dad, brothers and other family will be there for her when she's not. "And if you're really, really still and quiet, I think you'll be able to think of what I might say," she says.

Making memories

Their worries about the kids, coupled with their own grief, can overwhelm Aimee and Jim. They meet regularly with a social worker at the Les Turner ALS Foundation to work through their concerns. The social worker has encouraged their honesty with the kids, also suggesting they bring conversations back to the present whenever possible.

"Right now, I'm here and I'm able to do this," Aimee often reminds her kids, whether "this" is baking cookies, taking Emily to a Clay Aiken concert, or going last fall to the World Series to see her beloved Cardinals win.

"Do you worry about Zachary not remembering who you are?" Nicholas asks his mom.

"I do," she says. "But you and Emily will tell him about things we did - special trips to Mexico and Disney World - and show him pictures."

It isn't always the idyllic scene Aimee would like her children to remember.

As all couples do, she and Jim occasionally argue. And the kids have their moments, too.

Sometimes, they claim they can't understand Aimee's directions because of her slurred words, when they clearly do. So she calls them over to repeat what she's said.

"Look me in the eye," she tells them, pointing at her own eyes. "Right here."

Even with all they are facing, the Chamerniks' two-story home remains the family's haven, filled with smiling photos and images of Winnie the Pooh and Tigger on the living room walls.

Nicholas is now in fourth grade. For a recent school project, he described himself as hyper, funny and brave - brave, partly because he stood in front of his class and told them about his mom and ALS, short for amyotrophic lateral sclerosis.

It's one way he's become "a little activist," as his parents call him. For his last two birthday parties, he's asked friends to bring donations for ALS research instead of gifts - and raised more than $350 last year.

"I just want my mom to be healthy," he says.

Her mom describes Emily as "a pirate at heart," most comfortable in jeans and a T-shirt and quick with a wide grin that has become increasingly toothless.

She and Nicholas constantly retrieve items for her, from her laptop computer to books to Matchbox cars for their brother.

When there are too many toys on the floor, without prompting, Emily will say, "Mommy can't walk here - we need to clean up."

Because mornings are Aimee's most difficult time of day, Emily and Nicholas help get themselves ready for school. Jim races around the house doing laundry, making breakfast and bringing Aimee coffee and the sports section before he goes to one of his two jobs as a law firm manager.

Aimee can't help but feel guilty about all Jim does and about the extra responsibility the kids take on.

"As children, they're asked to do a lot of things," she says, quietly. "Sometimes I wish they could just be kids."

A mother's vow

More than anything, Jim worries that, once Aimee's gone, he won't be enough for their children - even for little things, such as doing Emily's hair.

"It's tough for me to talk about a rosy future when there isn't one because their world revolves around their mother," he says one evening in the living room. "There's no substitution for what they're going to miss."

As he speaks, Emily sits on his lap. Nicholas and Zachary are upstairs getting ready for bed, while Aimee works in the kitchen.

The sweet aroma of cookies, made earlier in the evening, is slowly fading.

Just before her birthday, it occurred to Nicholas that his mom would be the same age that Lou Gehrig was when he died.

"I just wondered," he said, hesitantly because he didn't want to hurt his mom's feelings, "If he was 37 when he died, maybe you would die when you're 37, too."

His mom looked at him.

"I can't promise you I won't die in the next year, because I could be in a car accident or something like that," she said. "But I won't die from ALS in the next year."

Immediately, she could sense his relief.

To this day, that conversation remains his safety net - and while he used to call home during school lunch to make sure his mom was OK, he doesn't do that anymore.

"I hope I'm not misleading him. It would be fairly shocking for me to drop off in the next six months," Aimee says. "But a little part of me - there's that reality that this is fatal and you can't know."

If the disease is strong, though, so is a mother's will. Aimee focuses these days on her vow to her son to go on living.

"Now," she tells herself, "you better do everything in your power to make sure that's true."

Utah: Lowest per pupil spending in the nation- Shameful for such a wealthy state!

http://deseretnews.com/dn/view/0,1249,650224240,00.html

Utah schools look flush .... but still rank low in many key categories
By Jennifer Toomer-Cook
Deseret Morning News

On paper, Utah public schools look flush with cash, pulling in about a billion extra dollars over the past 10 years.

Yet class sizes remain huge. Teacher salaries are below the national average. And Utah — still — has the lowest per-student funding in the country.
Why?
And what will it take for Utah to get ahead?
Doing something about education is on the public's mind. Thirty-six percent of Utahns surveyed by Dan Jones & Associates for the Deseret Morning News and KSL-TV say education should be the Legislature's main issue this year. No other topic, including tax cuts, came close to that level of interest.
Just over half of Utah small-business owners say the state needs to increase school funding — a somewhat surprise return on a poll conducted by the National Federation of Independent Business — with some of the state's $1.6 billion in one-time surplus funds and ongoing revenue growth. The federation has up to 4,500 member businesses; federation state director Candace Daly said.
"It's been below 50 percent the last few times they've polled," she said. "I was pleasantly surprised, because I really do think a little more money needs to be put in public education and higher education. Throwing dollars at anything doesn't fix it, but starving someone of funds can hurt."
In the past 10 years, the schools budget, looking at state dollars alone, has grown about 50 percent, from $1.4 billion to $2.1 billion, according to the Office of the Legislative Fiscal Analyst. It's up about 58 percent, from $1.9 billion to $3 billion, if federal and other dollars are counted.
Lawmakers last year gave schools a $243 million infusion, an increase of nearly 10 percent, the analyst's office reports. "It was the largest nominal increase in the history of the state," said Mike Jerman, vice president of the Utah Taxpayers Association.



It also was the first year in a decade that the budget increase exceeded the growth in Utahns' personal income, said Stephen Kroes, executive director of the Utah Foundation, a nonpartisan group that examines Utah issues and trends.
"If we keep having years like that ... I think that's going to have a good chance of making an improvement," Kroes said.
But the public sentiment is that the public schools are financially starving, and getting thrown bones at best. Last year, legislators also gave tax relief, and public school advocates saw that as money taken away from schools. All income tax revenues go to schools and colleges.
"That's why a lot of legislators are frustrated," Jerman said. "They were hoping to get some accolades last year ... and all they heard was that the Legislature was cutting education spending."
The money going to schools, however, isn't making any visible change in some things dear to parents, students and teachers, perhaps deepening the perception.
Utah's average per-student spending went up more than 70 percent to $5,092 per student by 2003, but it remains the lowest in the country. It would take $461 million just to get to second-to-last place, and $1.6 billion to get to the national average of $8,468 per student.
Utah's average teacher salary rose 22 percent in the past decade to $39,456, but the national ranking has moved only from 42nd to 38th.
Class sizes remain the nation's largest, according to the National Center for Education Statistics.
Considering that $243 million of the $700 million in new state money over the decade came just last year, it's no surprise its effects aren't evident yet, Kroes said.
Exactly where did it go?
More than 90 percent went to maintaining the system, from giving teachers money to keep up with the cost of living to rising insurance and energy costs, the State Office of Education reports.
Enrollment climbed 9 percent in the past decade to about 515,000 students, but the rolls are expected to grow by 150,000 in the next 10 years, the State Office of Education reports.
"Public education is a huge enterprise, with more than 40,000 direct employees in the state of Utah. We serve half a million children each school day," said Patrick Ogden, state associate superintendent. "When we're talking those kind of numbers, it takes a large amount of money just to keep the system afloat."
The State Board of Education says it needs an increase of more than $341 million to keep up next year. It wants an overall 20 percent funding increase to address student achievement and a teacher shortage, among other initiatives.
The amount is close to the governor's proposal for an 18.2 percent hike.
That kind of cash could be in the cards, considering this year's surplus and new money. But a chunk of it — proposals have ranged from $100 million to $300 million — is likely to be returned to the people via tax cuts. Other state agencies are clamoring for new money, too. And with the growth wave, Kroes believes it will be extra tough to give schools enough money to make big financial gains.
Is there any way to get ahead?
Many on Capitol Hill say they want more money for schools. It's just that it might come with strings.
Sen. Howard Stephenson, R-Draper, is talking about $200 million for teacher pay raises, but with a focus on merit- and differential pay for those with high-demand credentials, such as math, science and special education. Reform efforts also are in the offing, including proposals to provide government vouchers for private school tuition, aimed at giving parents more school choices and injecting competition to make all schools better.
"We need to continue to do all that we can, continue putting pressure to raise the spending level for public education," Senate Majority Leader Curt Bramble, R-Provo, said in a recent interview about school vouchers. "But there are other things that have to be taken into account seriously, that have to be on the table."
Not everyone will agree on how school money should be spent. Maybe that's part of why it's hard for the public to see the effect more money has had on public schools. The state, suggests Jordan District Superintendent Barry Newbold, lacks a universally supported vision.
"I'm not being critical, because putting together a state vision and plan for education is no small task," he said. "But without something like that, we just go from individual priority to priority each year without focusing on major issues that make big differences."
With growth and maintenance expected to gobble up the bulk of the new dollars, Utah schools could get caught in a holding pattern for the next few years, Kroes said.
"One of the biggest political risks you face when you talk about education is to (fall into a) throw-up-our-hands-in-despair mentality, that we can put all this money in education, but will we see (a difference?)" Kroes said. "That's the question that crosses the minds of legislators when asking for this huge commitment of funds."

If You Make Friends With Yourself You Will Never Be Alone

It is true that 52% of the women in the United States are single. I used to think I was in the minority, being single, that is...especially living in Provo, Utah, where getting married at 23 is considered "old". I used to look at being single as a curse or a punishment. I felt sorry for myself and for a while, got lost in the loneliness of not being married. But something changed in me several years ago...I got in touch with myself and became my own best friend and the lonliness went away.

So often friends at work talk to me and tell me not to lose hope, that some day the "right one" will come along. Recently this happened...and I responded by telling my friend that if I get married some day, great, but if not, that is great, too. My friend looked at me with pity and a "yah sure, you keep telling yourself that" kind of look...but the truth of it is, I am happy just being me! I have learned that being with myself can be peaceful, harlarious (I love to laugh at myself), and free.

I learned through the years, that I am happiest when I am using my gifts and talents and doing the things I loved to do when I was a child. It is taking time to bake cookies for friends, send a gift through the mail, sketch a picture or going for a drive in the country, reading a good book, going bowling or ice skating, coloring in a coloring book, wrestling with my dogs, teaching a child to sew, planting flowers, writing in my journal, laughing out loud at myself...These are the small simple things that keep me connected to my soul... I am my own best friend...and if you make friends with yourself, you never are alone.

Accept the place the divine providence has found for you.- Ralph Waldo Emerson

Daffodil Principle

The Daffodil Principle

Several times my daughter had telephoned to say, "Mother, you must come
to see the daffodils before they are over." I wanted to go, but it was a two-hour drive from Laguna to Lake Arrowhead "I will come next Tuesday", I promised a little reluctantly on her third call.

Next Tuesday dawned cold and rainy. Still, I had promised, and reluctantly I drove there. When I finally walked into Carolyn's house I was welcomed by the joyful sounds of happy children. I delightedly hugged and greeted my grandchildren.
"Forget the daffodils, Carolyn! The road is invisible in these clouds and fog, and there is nothing in the world except you and these children that I want to see badly enough to drive another inch!"
My daughter smiled calmly and said, "We drive in this all the time, Mother" "Well, you won't get me back on the road until it clears, and then I'm heading for home!" I assured her.

"But first we're going to see the daffodils. It's just a few blocks," Carolyn said. "I'll drive. I'm used to this."
"Carolyn," I said sternly, "please turn around." "It's all right, Mother, I promise. You will never forgive yourself if you miss this experience."

After about twenty minutes, we turned onto a small gravel road and I saw a small church. On the far side of the church, I saw a hand lettered sign with an arrow that read, "Daffodil Garden." We got out of the car, each took a child's hand, and I followed Carolyn down the path. Then, as we turned a corner, I looked up and gasped. Before me lay the most glorious sight.



It looked as though someone had taken a great vat of gold and poured it over the mountain peak and its surrounding slopes. The flowers were planted in majestic, swirling patterns, great ribbons and swaths of deep orange, creamy white, lemon yellow, salmon pink, and saffron and butter yellow. Each different-colored variety was planted in large groups so that it swirled and flowed like its own river with its own unique hue. There were five acres of flowers.

"Who did this?" I asked Carolyn. "Just one woman," Carolyn answered. "She lives on the property. That's her home." Carolyn pointed to a well-kept A-frame house, small and modestly sitting in the midst of all that glory. We walked up to the house.

On the patio, we saw a poster. "Answers to the Questions I Know You Are Asking", was the headline. The first answer was a simple one. "50,000 bulbs," it read. The second answer was, "One at a time, by one woman. Two hands, two feet, and one brain." The third answer was, "Began in 1958."

For me, that moment was a life-changing experience. I thought of this woman whom I had never met, who, more than forty years before, had begun, one bulb at a time, to bring her vision of beauty and joy to an obscure mountaintop. Planting one bulb at a time, year after year, this unknown woman had forever changed the world in which she lived. One day at a time, she had created something of extraordinary magnificence, beauty, and inspiration. The principle her daffodil garden taught is one of the
greatest principles of celebration.



That is, learning to move toward our goals and desires one step at a time--often just one baby-step at time--and learning to love the doing, learning to use the accumulation of time. When we multiply tiny pieces of time with small increments of daily effort, we too will find we can accomplish magnificent things. We can change the world ...

"It makes me sad in a way," I admitted to Carolyn. "What might I have accomplished if I had thought of a wonderful goal thirty-five or forty years ago and had worked away at it 'one bulb at a time' through all those years? Just think what I might have been able to achieve!"

My daughter summed up the message of the day in her usual direct way. "Start tomorrow," she said.

She was right. It's so pointless to think of the lost hours of yesterdays. The way to make learning a lesson of celebration instead of a cause for regret is to only ask, "How can I put this to use today?"

Use the Daffodil Principle. Stop waiting.....

Until your car or home is paid off
Until you get a new car or home
Until your kids leave the house
Until you go back to school
Until you finish school
Until you clean the house
Until you organize the garage
Until you clean off your desk
Until you lose 10 lbs.
Until you gain 10 lbs.
Until you get married
Until you get a divorce
Until you have kids
Until the kids go to school
Until you retire
Until summer
Until spring
Until winter
Until fall
Until you die..

There is no better time than right now to be happy.

Happiness is a journey, not a destination.
So work like you don't need money.
Love like you've never been hurt, and, Dance like no one's watching.


Wishing you a beautiful, daffodil day!

Family Memories

Memories....like the corners of my mind...do do wa wahhh....

Raking leaf piles and having all the neices and nephews jump in them.
Bonfires and cookouts overlooking the pond in the back yard.
Hiking with Abigail, Jon Jon and Anna out to the fort and in the woods....
Sweet Jack and Molly the dogs....thanks for keeping my feet warm at night!
Walking to the candy store from Gramma Becky's house.
The Good Fairy drawer and Gramma Becky's endless art supplies.
Singing to the Sound of Music record over and over and over....
Bees! Bees! The honey bees are attacking!! Aaarh...as I trip over Kai and belly slide across the driveway...Bees! Bees! As Abigail swats the bees off of me they go down my shirt...next thing I know my sister has pulled my shirt off and is standing there in the driveway swatting off the lone bee...and I am dying of embarrassment!

Playing rummy with Grammy and holding our cards in our toes...
Dad's crazy driving the RV on our trip in Colorado-playing chicken with a semi going up a mountain in an RV isn't good for the heart...
Slyly drinking Abigail's glass of milk at the dinner table when she isn't looking....
Mom always chucking a wadded up napkin across the dinner table when you least expect it...
Grammy scraping seeds off her roll and having them hit me in the face....
Mom reading us the funny papers on the couch on Sunday mornings....

Family is what it is about...

So, it is 2:00 a.m. on a Saturday night and I've spent the past few hours tossing and turning in bed unable to sleep. When I can't sleep. I think. My thoughts have been on my extended family back home in the mid-west and what a wonderful week and a half I spent with them over Christmas. The older I get the more living 2000 miles away is getting to be too far. But that's another topic for another time. This is about my family. Here are some of my thoughts:

Mom's hugs are the best, her tender heart and giving nature is the standard I hold myself to...and I miss her potroast dinners already!
Putting 1000 piece puzzles together as a family is a great way to gather everyone around the table and talk.
Taking walks with Dad around the courthouse square always helps me process where I am going and who I am.
Laughing with my brother Chris, and just being there for each other. We're closer now than we've ever been and that is so cool.
My sister....I am so grateful for...she is my "twin" and what a comfort that is in the deepest sense, even 2000 miles away we are still in sinc.
My step Dad Paul is such an angel! He even offered to let me drive his 1940s hot rod over Christmas! He makes the best chocolate milk shakes!
My step Mom Jill is always available for deep talks and a good laugh! Having dinner and talking about my most embarrassing moments was a hoot!
Zach, my nephew who has a huge heart....and Andrew, the little guy who always has a smile....what beautiful boys...and the time we spend always goes way too quickly...
John, my favorite brother-in-law who always gets a kick out of reminding me that I am "older" thank he is...by what was it John....44 days...hmmmm....John has the best Chicago accent and he always makes me laugh....he's my most vocal family member (besides Mom) when it comes to asking me to please move home....
Deb, my sister-in-law who is like a big sister to me....trading those jeans, and the "Shopaholic" books back and forth is a hoot!
Baby Kate's spirit warms my heart...she's an angel from above and such a blessing to our entire family.
Jon Jon (my little "mole man") is the sunshine and the energy that lights up my days and sweet little Anna who is gentle and calm....I miss our early morning snuggles , pillow fights, and playing our make-believe game of "Koby, Kai and Jasmin" (my cat and dogs in Utah) in my bed! (Even if it is only 7 a.m. and I'm half asleep!)
Grandma Humes' cookie platter and apple pies...
Toby, Mandy and baby Lucas warm my heart and make life fun.
Jenny, Larry, Amber and Ashley....I love their sweet Nashville accents...getting text messages from Ashley...Is Amber really going to college next year....
Rusty, Angie, Kelly and D.J.....Grace under pressure...D.J. is finally taller than me! Man, am I feeling old!
Micci, Jerry, Zoe and Max...Strength and endurance to overcome lifes trials....you are amazing...
Jessica, Andrew, Maddie and Grant...beautiful family...and Cassie and her family....



....the list goes on and on. Family, good memories, laughing, listening....boy do I ramble when I'm tired!