INSPIRATIONAL STORY OF THE DAY

Americans often show just how much compassion they really have.  Did you see this story?  About a little girl being treated for cancer who wanted some pizza?:

A hospital had to emphatically ask people to stop sending pizza after a child being treated for cancer received more than 20 pizzas from Internet strangers in one day.
Reddit user “ashortstorylong” posted a photo of a sign in the window of a hospital that said: “Send Pizza RM 4112″ with the headline: “Photo taken outside Children’s Hospital in Los Angeles. Smart Kid.”
The post reached the front page of Reddit, and other Reddit users later commented and said they’d taken the liberty to send pizza to the hospital room. On Saturday, Children’s Hospital Los Angeles posted a picture of the young patient enjoying the pizza, along with some details about her and her family.
According to a post on the hospital’s website, the patient’s mother, Lauren Hammersley, said the compassionate Reddit users have made a little girl very happy, “but NO MORE PIZZA IS NEEDED.”
A follow up post reached the front page of Reddit, ensuring that the message to stop sending pizza was received.
According to a post on the family’s blog, the sign was up for a few days without a single call, but that all changed on Saturday after the Reddit post. More than 20 boxes were delivered by the time the post was made, and more were coming. Due to the sheer number of pizzas, hospital officials asked that the deliveries be stopped.
Hazel Hammersley is 2 years old, and she is undergoing chemotherapy. She was diagnosed with high-risk, stage 3 neuroblastoma in April 2013.

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 "People of mediocre ability sometimes achieve outstanding success because they don't know when to quit.  Most men succeed because they are determined to."--football coach George Allen

A Good Link

Hey everybody, today I just kind of figured that nothing I had to say would be better than what was said and what can be found, among other things, here...in the summer 2013 Moebius Syndrome Foundation newsletter.

It contains all kinds of news, notes, other peoples' ideas and memories, and all kinds of good stuff.  If you haven't read it before, or just haven't seen the latest edition yet, check it out.  And if you've missed past newsletters, there are links to those at the above location, too.  Happy reading!

INSPIRATIONAL STORY OF THE DAY

Tim's Place is a business where you can get good food; free hugs; see someone who's made quite a success of himself; and, oh yes...see Tim, who is someone with a physical difference--he has Down's Syndrome.  Hasn't slowed him down much.  Read on:

Editor's note: In the Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle -- injury, illness or other hardship -- they tapped their inner strength and found resilience they didn't know they possessed. This week we introduce you to 27-year-old Tim Harris, who says he's living the life of his dreams.

(CNN) -- I was born in January of 1986. A few hours after I was born, our doctor told my parents that I had Down syndrome.

A lot of people told my parents that they were very, very sorry. I guess they didn't know then just how totally awesome I would turn out to be.

Growing up with three brothers was a lot of fun. They treated me like a brother -- not like someone special or different. They never let me use my disability to get out of doing the dishes when it was my turn. I did try sometimes, though.

I started in Special Olympics when I was 13 years old. My Special Olympic sports are basketball, poly hockey, volleyball, golf and track and field. I have dozens of gold medals -- way more than another Olympian, Michael Phelps Many of them are on display in my restaurant.

I think that being athletes made me and my friends popular in high school. I was so popular that I decided to run for Homecoming King in my senior year. I was very happy when I won My brothers told me that even though I was the King at the school, I was not the King of our house!

After high school I had a dream to go to college. In the fall of 2004 I moved to Roswell, New Mexico, to attend Eastern New Mexico University. And yes, it's true, there are aliens in Roswell. I graduated in the summer of 2008 with certificates in food service, office skills and restaurant hosting.

After college, I knew I wanted to live on my own. I love my parents a lot, but I want to have my own life. In July of 2010 I moved into my own apartment. I shop for my own groceries, do my own laundry and pay all of my own bills.

I love living in my own place. And lucky me, it's right next door to my restaurant. I bet you wish you could walk to work in two minutes.

For over 10 years, I had a dream to own my own business. Well I'm here to tell you that dreams do come true. I am the owner of Tim's Place -- the world's friendliest restaurant, located in Albuquerque, New Mexico.

My favorite part of the work day is giving out the free Tim Hugs. They are on my menu and most people order at least one. So far, I've given out nearly 40,000 hugs. I even have a counter on the wall to keep track of the total. I guess you can say I'm a lean, mean, hugging machine.

I have a dream to inspire other people to reach for the stars. If I can do it, you can too.

See you at Tim's Place.

 

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"I have a dream to inspire other people to reach for the stars. If I can do it, you can too."--Tim.

THE NEED-FOR-MORE-AWARENESS WATCH

And this is something that remains important for all of us--the need to build awareness of us--those of us with Moebius Syndrome, our families, and in general the need to build awareness of all of those with facial or general physical differences.  Because you know, there are people out there who don't "get" that there are a lot of folks with physical differences.  They don't "get" that appreciating diversity is not just about being aware of things like race, class, and gender--that "diversity" also encompasses those who have a facial difference; and that those with such differences deserve the same kind of equality as is demanded for everyone else.  Yes, but some still just don't get it.  See for example what happened recently when a young girl in a wheelchair, and her family, tried to go to a museum:

A family is crying foul after they say their daughter was denied access to a museum because her wheelchair might dirty the carpet.
The Haas family traveled from their home in Charlotte, N.C. to Savannah, Ga. for a fun getaway over the weekend. But when they attempted to visit the Ships of the Sea Maritime Museum, the family says they were told that they could not bring their daughter Lexi, 11, in her wheelchair.
“They said wheelchairs are okay, but not hers,” Lexi’s dad, Ken Haas, told WBTV. “I said, but my shoes walk right behind her wheelchair. They’ve been in exactly the same place.”
Haas said they were told that Lexi could use the museum’s wheelchair, but he indicated that the facility’s chair was not supportive enough for his daughter who cannot sit independently. Alternatively, they were told that the girl could watch a video while the rest of the family viewed the exhibit.
Officials at the museum said the employee who spoke with the family misunderstood the facility’s policy. The museum’s director has since apologized.
“They really need to train their staff,” Lexi’s mom, Susan Haas, said. “That is a significant error.”

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Outrageous.  Those with physical differences are people, too...

MORE ON PARENTING: ONE WORKING MOM SAYS IT'S ABOUT "AND", NOT "OR"

So let's keep this theme going concerning parenting, and how to be the best parents we can be.  It's important whether your child has Moebius Syndrome or not, of course; but of course it is of special importance to parents of Moebius children, given that Moebius presents special challenges.  A lot of the questions and dilemmas parents face have to do with working, with having a career--with achieving in your career and yet, at the same time, finding the time to give parenting your all.  It's not easy.  But the piece I found today argues that, if you're a mom, you don't have to choose between parenting and a career.  She contends that you can have both, and do them both well.  She makes an interesting point:  if men can have their career AND at the same time be good dads--then why can't women????  Read on:

Editor's note: Michele Weldon is an author and an assistant professor of journalism at the Medill School of Journalism at Northwestern University. She is a seminar leader with The OpEd Project. She recently completed a memoir about raising her sons alone, their high school wrestling careers and her recovery from cancer. Learn more at www.micheleweldon.com.

(CNN) -- For goodness' sake, it's just like the Ford commercials. You know the ones, where they joke that "and" is better than "or," whether it's sweet and sour chicken or a bed and breakfast inn.

Same thing with working mothers. I am not a worker or a mother. I am both: a worker and a mother. This consistent, aggressive infighting about leaning in vs. leaning out -- reignited by the New York Times story this week, "Coveting Not a Corner Office, But Time At Home" -- is just more fodder for woman-on-woman mudslinging. And it doesn't help anyone, least of all our kids, who are as a result groomed to think you can't be all you want to be.

Social media and listservs of professional women have been back and forth commenting on this seemingly neverending fight, fueled in part by media coverage and by the persistent attacks and retreats of women sniping at other women -- on both sides.

Michele Weldon

It is belittling to assert that women can handle only one role at a time. And that one role is better than the other. No one is insisting a father has to choose between his work and his children in order to be a good dad. So why can a woman perform just one role at a time?

This latest New York Times feature misses a key possibility: that it is entirely possible to be an ambitious good mother. The births of my three sons (now 24, 22 and 19) did not hormonally erase my desire to accomplish as much as possible professionally.

The work that I love -- teaching journalism at Northwestern University, writing books and articles, giving keynotes and leading professional workshops -- has not hindered my ability to attend every parent-teacher conference or scream their names from the stands for the past 20 years.

But from this latest piece of work, you can gather it is not possible as a working parent to walk and chew gum at the same time. I recoil at the way working parents are characterized in this passage: "I never miss a baseball game," said Ms. Uttech, uttering a statement that is a fantasy for millions of working mothers (and fathers) nationwide. (This attendance record is even more impressive when you realize that her children play in upward of six a week.)

Yes, Sara Uttech, you did your fair share. But I want to point out to the writer that like so many women, I went to way more than six games, matches, tournaments or conferences a week for three sons who played baseball, basketball, soccer and football before each finally settled into wrestling. There were weeks with nine to 15 games and practices for three boys.

On the extremely rare occasion I missed? It was because one son was in a game or match at the same time as another. There were plenty of Saturdays where I drove from one gym to another across the suburbs of Chicago, logging more than 100 miles. And on Monday, I went to work.

A whole lot of us do. According to a recent study from Pew Research, 40% of all households with children younger than 18 include women who are either the sole or primary breadwinners. Most of us -- 63% -- are single mothers.

What working women and stay-at-home mothers do not do is stop thinking of this as black/white either/or territory.

Millions of us waste time believing the grass is greener on the other side.

Even fashion designer Victoria Beckham, 39, feels that she may be missing out, and she comes home to David Beckham. She told US Weekly this week, "It's a huge juggling act, when you are a working mother and looking after your family. Millions and millions of women around the world are doing this every day, but it's not easy and yes, you feel guilty every time you walk out of the door to go to work."

As a single parent who is sole support and has been for many years, I have needed to work as hard as I possibly can, saying yes to every invitation to consult, speak, write or work in order to pay the mortgage, food, tuition, room and board and all else for three sons. I decided that it would be optimal to do work I love because there is no choice to opt out.

For me, it works. I am not superwoman, and I am not hissing at the neighbors who stay home with their children as I pull out of the garage at 7 a.m. I am not perfect; I do not do everything perfectly. I just really enjoy my life as a mother who is professionally ambitious, too. And I do not believe my children have suffered because of it.

Liz O'Donnell, who recently completed the upcoming book "Mogul, Mom & Maid: The Balancing Act of The Modern Woman," says her research shows that women do not want an either/or life.

"I've talked to scores of women who are trying to balance career and family. These women want fulfilling careers, and they are willing to do the hard work. But they are not willing to sacrifice their families, nor should they have to," O'Donnell said.

But the issue is not entirely decided by mothers but by their employers.

In her New York Times story, Catherine Rampell writes in defense of the story's main character's decision to scale back at work: "Ms. Uttech wants a rewarding career, but more than that she wants a flexible one. That ranking of priorities is not necessarily the one underlying best-selling books like Sheryl Sandberg's 'Lean In,' which advises women to seek out leadership positions, throw themselves at their careers, find a partner who helps with child care and supports their ambition, and negotiate for raises and promotions."

O'Donnell, a public relations executive, founder of the blog Hello, Ladies and mother of two, disagrees. "Framing the issue as leaning in vs. leaning out isn't accurate," she said. "For a variety of reasons, from overt and subtle gender discrimination at work, inflexible workplace policies, lack of support at home, outdated school schedules that don't mesh with corporate hours, women are rejecting the corner office and businesses should take heed."

As women, we do not hesitate to claim that we can be wives, mothers, sisters, daughters and friends at the same time. Why can we not be successful in our professions and parents at the same time without someone insisting it can't be done? Why can't we be good mothers and good employees?

I say it is about "and," not "or."

 

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"...You can't connect the dots looking forward; you can only connect them looking backwards.  So you have to trust that the dots will somehow connect in your future.  You have to trust in something--your gut, destiny, life, karma, whatever.  This approach has never let me down, and it has made all the difference in my life."--Steve Jobs

MORE PERSPECTIVES ON PARENTING

...for Moebius moms and dads, and of course for non-Moebius parents too.  How DO you, after all, balance work/career...and parenting?  How do you do that and still be a good parent?  We all struggle with it.  Here's the perspective of a writer, writing an essay in today's NY Times:

“I’m reading your book, and now I’m worried about you,” an acquaintance told me about my (fictional) novel, which concerns the (fictional) misadventures of a (fictional) depressed mother. My whole head flushed. My immediate response was anger, then denial, then guilt. I was practically going through stages of mourning, and maybe I was in mourning, mourning for the simpler vision of myself I was able to project on Facebook, or you know, in person or whatever.
But here we are: I’ve written a novel about a mother who on the surface looks like me (Brooklyn, two kids, scraggly dog), a novel that is also meant to be an exploration of the stormy waters of motherhood. I wanted the book to be a comfort to other mothers. I wanted the book to be about a woman who realizes that having her own creative work actually helps her to be a more balanced and happy parent. This woman, it’s true, is troubled, and sometimes not entirely in love with her children — essentially a misdemeanor in Park Slope. But she is only a character, not a true reflection of me. So then why do I feel so guilty? Why do I feel like such a crappy mom?
Without thinking about it very clearly, I suppose I’ve always assumed that writing at all makes me a slightly worse mother than I might be otherwise. Being a writer means I’m, at very best, 77 percent focused. I’ll look up in the kitchen to see that while I’ve been scribbling story ideas on the back of an envelope, the kids have given themselves honey-and-peanut-butter facials. On weekends when I should be playing soccer with my kids or at least vacuuming, I instead disappear to write. Crappy.
Or else I actually do spend a day or a week fully engaged in mothering, trying to be present and fun, spending post-bedtime evenings not drafting pitch e-mails but organizing the paper dolls and inventing little projects for the next day, never handing the kids the iPad so that Mommy can do just a few more little edits on her short story. Predictably enough, during these times I feel guilty for not writing. “Do you think I’m going to write myself?” the new novel whines, hypothetically, I assume, from inside my desk.

Then one day, my 4-year-old was having one of her regularly scheduled Scarlett O’Hara-ish nervous breakdowns. I found myself watching her from a writerly distance, dissecting her motives the way I would a fictional character’s. What hidden desires and fears fueled this particular tantrum? She wanted to wear woolen tights even though it was 92 degrees out, sure, but what else?
The tights had to be symbolic. In a story, anyway, they would be. Of course they were. Everything with a 4-year-old is symbolic. Really, she didn’t want to go to school. And really, really, she’d gotten wind that I was going to do something fun with her little brother while she was at school. This quick character study dissolved my urge to yell; suddenly instead of irritation I felt sympathy, and we were able to defuse the fit and move on in a matter of seconds.
Writing is so much about the work of noticing. Fiction writing in particular demands intense noticing — studying how the emotional scaffolding of a human is built. When we’re not ignoring our loved ones in order to go write, we are living like watchmakers — picking apart conversations, analyzing recurring arguments, holding up to the light the wheels and cogs of our people so that we may understand them, yes, but also so we can learn how to create new people from scratch. You know, like mothers do.
In creating my novel’s mother-character, I wanted to take the Truths of what I know as a parent and apply them to a world full of other fictional truths — feelings I don’t actually feel but have observed. If people conflate this character with me, I can take that for what it is, and know that I’m still the actual human person trying my darnedest not to yell at my kids, and taking them to the park even when they take six hours to get their shoes on, and, most of the time, paying attention to them. Real attention. Trying to know them, to learn them by heart.
The mom-guilt is, I’m guessing, just part of the whole enterprise. Everyone wants to give their kids more. I’m sure I would have mom-guilt if I were a lawyer-mama or an astrophysicist-mama or a doughnut-shop-cashier-mama. But the writer-guilt I can probably attempt to let go of. It may well be unsettling for my family to live in my world where, in the words of Nora Ephron, everything is copy. But on good days I’m able to see how the peculiar skills of a writer overlap with the peculiar skills of a mother: we work so hard — we must — to notice, to understand, to dig deep, to know.

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"What's a good parent?  Someone who does the best he/she can."--Overheard one day a few years ago...

FOR MOEBIUS DADS (AND MOMS TOO MIGHT FIND IT INTERESTING): A PERSPECTIVE ON PARENTING

Below are excerpts from an interview with a guy who's a noted writer--both on major sites on the internet and in the world of sci-fi.  But he also is a dad, whose third child was born prematurely and nearly died.  It led him to write a book about parenting, and the interview below deals with his views on it.  I thought we could all learn something from it--check it out:

Drew Magary is an angry guy -- or at least he plays one on the Internet. The Deadspin, Gawker and GQ contributor and sci-fi author has amassed a large, rabid fan base for his sharp, smart, acidic rants on subjects ranging from the coaching abilities of Bill Belichick and the uselessness of scab referees to his hatred of scarves and the punchability of Justin Bieber's face. He's got opinions.

But all that ire and energy were of little use as Magary and his wife watched their prematurely born child cling to life in a neonatal intensive care unit as a result of a condition known as intestinal malrotation. Luckily, the youngest Magary survived, and the ordeal inspired the father of three to share his parenting experiences in a new memoir, "Someone Could Get Hurt."

CNN spoke with Magary about the peaks and pitfalls of being a dad in an often dangerous world....

 

CNN: Fear is a prevalent theme in the book. What's the difference in the fear you felt before and after you had your kids?

Magary: Every guy thinks, "The kid is here, life's not going to be fun anymore." There's a dread of not having the world revolve around you. I'm over that, and I'm more than happy to be a lameass who goes to bed by 9 every night.

Once you have kids, you have all kinds of other fears: the kid getting hurt, or worse. You fear that everyone is watching you fail -- that there will not be another human being at the playground who is a worse parent than you are. It's all very self-inflicted and self-involved.

I get too concerned with looking like I'm doing a good job rather than parenting well. You have to get past that layer of self-analysis, and that's very hard in this day and age....

 

In the book, you shared a story of getting so frustrated with your daughter, you worried about what you might do. What did you take away from that?

Magary: I reacted poorly. You feel so awful for being angry at your kid, and you can see the precipice that you're on. Down one avenue there's a nice relationship where you're mutually respectful of each other, and down the other is abuse or just antagonism all day long. It's terrifying to see that and visualize a future where the fighting never ends. I'm getting better at it....

 

How do you pick yourself back up from a bad parenting day?

Magary: I have a glass of wine and go to bed. When my wife and I know the day is going badly, we'll just cut our losses, go to bed at 8 and wake up with a fresh slate. It usually works. You don't usually get two bad days in a row. Of course, all the parents of teenagers tell me it gets worse. They all look shellshocked; it's terrible....

 

CNN: What did facing that teach you about the kind of man and father you want to be?

Magary: You can have kids and not fundamentally change -- you just get to do more stuff. People say they change your life, but you're still pretty much the same person, but walking around grumpy because you don't get any sleep.

I'll still get frustrated with my kid when he's crying his ass off, but I'm happy he's here. I have a fundamental understanding of how ridiculous it is to be annoyed at him -- because I'm happy he's not dead.

I tell my kids I love them every day. I hug them and kiss them and all that, probably more than they want. I'm not the stoic dad, where you're fighting for 50 years to hear your dad say, "I love you" once.

CNN: What advice would you give to a first-time dad?

Magary: Know when to walk away. Not from parenting, of course, but from meltdowns and conflicts. It's not worth it.

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"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around."--Leo Buscaglia