BOOK TALK

Today I just want to encourage everyone:  there's a great book out there.  My wife, Lisa, the librarian, turned me on to it.  She always seems to find the best books--I guess that's why she's so good at what she does. :+)  Anyway, it's called "Eleanor and Park."  Just trust me--read it.  And read it especially if you're a Moebius mom or dad, who's worried about what it might be like for your kids once they get to those teen years; what will it be like for them, once they're kind of an outsider, seen as "different", etc.  Here's a description of it from Amazon:

"While Eleanor & Park is technically classified as YA lit and has a cutesy cover, don’t let the stigma of “books for teens” fool or deter you. It is written about teens, sure, but the themes are so universal that anyone who survived high school will relate to the lives of the two protagonists. Eleanor is the new girl in town and her wild red hair and patchwork outfits are not helping her blend in. She ends up sitting next to Park on the bus, whose tendencies towards comic books don’t jibe with the rest of his family’s love of sports. They sit in awkward silence every day until Park notices that Eleanor is reading his comics over his shoulder; he begins to slide them closer to her side of the seat and thus begins their love story. Their relationship grows gradually--making each other mixed tapes (it is 1986 after all) and discussing X-Men characters--until they both find themselves looking forward to the bus ride more than any other part of the day. Things aren’t easy: Eleanor is bullied at school and then goes home to a threatening family situation; Park’s parents do not approve of Eleanor’s awkward ways. Ultimately, though, this is a book about two people who just really, really like each other and who believe that they can overcome any obstacle standing in the way of their happiness. It’s a gem of a book."

"Become a possibilitarian.  No matter how dark things seem to be or actually are, raise your sights and see possibilities--always see them, for they're always there."--Norman Vincent Peale

FINALLY...
...as I mentioned today on Facebook as well, I can finally kind of poke my head out of my metaphorical hole and look around.  I've been busy grading final exams and doing final grades for all the classes I teach for the past week, so it's been hard to do anything else besides that.

But finally today it's all done.  And I guess, in thinking about this today, it led me in a familiar direction, but still one worth stressing again.  Which is:  the good thing that so many of us adults with Moebius have is simple:  we're not simply just about Moebius.  (although that is certainly an important part of our lives)  Rather, we have lives outside of Moebius.  We have real jobs.  We have marriages, children, lives.  Sometimes I can't even do this blog quite as often as I'd like to, simply because I'm so busy with teaching, grading, and family responsibilities.  And of course that's the way it goes sometimes, and I know all of you out there understand.

But for all of you Moebius moms and dads out there--for all of you who have children with Moebius Syndrome--look at it this way:  this is a good thing.  Because all of you maybe worry a little about your kids, right?  What will happen to them when they grow up?  Well--if you support them, and try to show them the way to be independent, then they too will have lives.  They'll have jobs, and relationships, and all the rest.  At times they will be very busy.  At times they will be stressed.  But they'll also have the joy of...well, living life. 

We adults with Moebius are real people, who have to go through a lot of the same things that those who DON'T have Moebius have to go through.  But you know what?  We wouldn't have it any other way.

A STAR OPENS UP ABOUT HIS MEDICAL CONDITION
Because, really, that is what this is.  It's always good when famous folks do this.  Physical differences, unique medical conditions--they can happen to anyone.  As all of us with Moebius Syndrome know.  Read on--about Lil Wayne:

There's a reason Weezy feels woozy sometimes.
In an interview on Wednesday's episode of MTV's RapFix Live, Lil Wayne opened up about his ongoing battle with epilepsy, which he said causes recurring seizures that can strike unprovoked and at any time.
"No warning, no nothing, I don't feel sick. I get headaches real bad. And the headaches? I didn't get no headaches or nothing," the rapper told MTV News correspondent Sway Calloway.
Related: Rapper Lil Wayne reveals he's epileptic
According to Lil Wayne, he has no memory of the seizures when they happen, either, and is usually told about them afterward by family and friends.
"I told them the other day, 'Y'all can tell me right now that y'all was lying, like, 'You know what? We lyin' ain't nothin,' and I'd have to believe them because I don't know," admitted the MC. "I go to sleep and wake up in the hospital. I don't feel anything. I just hope it stops happening."
The 30-year-old Wayne (real name: Dwayne Michael Carter Jr.) has experienced several scary episodes over the last few months, prompting concerns about his health.
Related: Lil Wayne tweets "I'm fine" after recent hospitalization for seizure
The hitmaker was hospitalized in the ICU of Los Angeles' Cedars-Sinai Medical Center for six days following multiple seizures. He subsequently recovered only to be felled by another seizure on April 30 that landed him in the hospital again.
On both occasions, Lil Wayne took to Twitter to let fans know that he was OK and thank them for their prayers. He also told L.A.'s Power 106 in March that he's an epileptic and prone to seizures, but "y'all just never hear about it."
Either way, the TMCMB artist isn't letting the ailment slow him down any. Yesterday, he was in Miami to celebrate the release of his new shoe line, Spectre by SUPRA, and noted his doctor is cool with his activities.
Related: Lil Wayne hospitalized for multiple seizures; rapper's pals tweets he's alive and well
"He didn't tell me to do too much that a human doesn't do anyway. Sleep and eat right, that's about it," said Wayne."

MOMS:  WHAT STRESSES YOU OUT THE MOST?
Are you a mom who also happens to have Moebius Syndrome?  Are you a mom of a child who has Moebius?  But then, this applies to all moms--you all have stress, and feel it.  There are many things that stress you out--and many of them are legitimately stressful things.  And yet--do moms sometimes do it to themselves???  That's what this piece asks, and it's really the kind of thing we should all examine ourselves about, really.  Read on:

Moms, we are our own worst enemies.
We worry about what our kids eat, how they behave, and whether they study enough, socialize normally and live healthfully. And while we're at it, we worry about ourselves and whether we're good enough at home, work, our kids' schools and everywhere. On top of it all, we worry about what others think of us. Oh and we also worry about being too worried.
When it comes to the pressure we feel to be perfect, we are doing it to ourselves, found our exclusive TODAYMoms.com survey, released this week, of more than 7,000 U.S. mothers. A full 75 percent of the moms surveyed say that the pressure they put on themselves to be perfect is worse than the pressure they feel from other moms. And nearly as many moms, about 72 percent, admitted they stress about being stressed.
So why are we doing this to ourselves and how do we stop? Many moms agree that to achieve less stress, we must take baby steps, and realize that perfection shouldn't be the goal; being as good a mom as you can be is good enough.
Maria Bailey, founder of Mom TV and host of Mom Talk Radio, and a mother of four kids ages 14 to 19, says part of the problem of trying to be a perfect mom is that there is no one definition of perfection.
“My definition of balance is not your definition of balance,” says Bailey, of Pomano Beach, Fla. “Where moms get in trouble is that they let other moms define perfect.”
Bailey says when her kids were younger, she spent lots of time traveling for her career and worrying about how to compensate for being gone so much. “I’ve never been one of those moms who did it all…so I picked two areas – Career Day at school and planning elaborate birthday parties -- and that was my thing.”
Yet, even then, stress was ever-present. Her epiphany came at 3:30 a.m. one morning, when she was angry at herself for staying up making invitations and sewing 50 burlap party favor bags for a Robin Hood-themed party.
“I was stressed out and hating it, until it dawned on me… wait, I like this. No one made me make these. I took a step back and realized I like to be alone in the quiet and craft,” she said. “Once I owned it, the stress dissolved to enjoyment.”
In our TODAY Moms survey, we asked moms to pick the top three sources of stress in their lives and 60 percent of moms answered, “the lack of time to do everything that needs to get done,” while 41 percent said, “having to juggle so much between family and work.” Another 35 percent blamed the financial strain of raising kids.

For Jacqui Boland, CEO and founder of RedTricycle.com, a digital city guide for parents, the working mom juggling act brings on the most stress.
“The things that stress me out the most as a working mom are forgetting my son's lunch or 'share' item for show and tell. I know it can just as easily happen with moms who don't work, but I always seem to blame it on my hectic work schedule,” says Boland, of Larkspur, Calif., whose son Jamie is 6. “Also, it seems like board meetings and school concerts always fall on the same day, and having to decide between the two is so stressful,” she says, adding that “my son doesn’t always win.”
For Glennon Doyle Melton, mom to kids ages 10, 7 and 5, even something as simple as playing with her kids can trigger stress. “I feel guilty not being on the floor for hours every day playing with my kids,” said the Naples, Fla., mom blogger at Momastery.com and author of "Carry On, Warrior: Thoughts on Life Unarmed."
Her own mother provides perspective, she says.
“When I tell my mom that, she just laughs. The problem is not that we have problems, because every person has specific challenges. It's this idea that we're not supposed to have problems,” says Melton. “We have this ideal family in our heads and we spend all this time trying to get to something that's not real. We have to lower our expectations.”
While the prevalence of stress in moms’ lives was a harsh reality revealed in the TODAY Moms survey, there was some good news, and that’s that the stress to be Supermom eases as our children grow. The survey found that moms of teens are half as likely to report stress about being the perfect mom as moms of toddlers and babies.
Stay-at-home mom Nancye Matheson of Bellevue, Wash., has four kids: a 19-year-old son, twin daughters who are 10 and a 7-year-old son. She says her stress started to ease when she hit a tipping point with her oldest and knew she needed to start letting go.
“I hit a point with my oldest son, where I had invested so much time and energy on being the perfect mom, that I felt confident he had the foundation,” Matheson said. “When he was about 17, I came to the conclusion, he’s got to figure it out. He needs to start making his choices on his own and learning from his mistakes.”
She says having teens and toddlers in the same house is a trip: You stress about grades and college and sex and drugs, while at the same time worrying about the little ones' socialization and emotional growth and making sure they know school is important.
But having her oldest son in college now has helped ease daily stress with her younger ones. She says she puts a lot of energy and time into making sure their meals are balanced, and used to have a rigid nighttime schedule of dinner at 5 p.m., then bath and bed. But with her kids getting more involved in activities, she’s had to become more flexible.
“I allow myself to fall down more,” she says. “I know it’s going to be OK.”
Dr. Janet Taylor, a psychiatrist and TODAY contributor, says that managing stress is all about balance, and most of the time we don’t have enough of it.
“We feel so much pressure not even to verbalize how difficult it can be to be a mother. There are endless demands,” says Taylor, who is a mom of four girls aged 19 to 25. “We can be really harsh on ourselves, and we are groomed not to toot our own horns, so sometimes it's just this negativity that we put on ourselves.”
Taylor isn’t surprised the TODAY Moms survey found that moms of younger kids were harder on themselves. “Look at sleep -- being sleep deprived and still having to maintain a level of professionalism and parenthood is extremely stressful," she said. “Nowadays, people are geographically spread out from their families. New parents are, in many ways, doing it alone, and that's stressful.”
Ultimately, Taylor says, moms can combat stress with a four-letter word: Help. But we just have to ask for it.
“As women, we put on our Superwoman cape and we don't ask for help. We need to ask for what we need,” she says. “The frustration comes when women feel like they have to do it all themselves.”

"I am always doing that which I cannot do, in order that I may learn how to do it."--Pablo Picasso

INSPIRATIONAL STORY OF THE DAY
A teen-aged girl likes music, and can sing.  But she also develops cancer.  Guess what--it doesn't stop her:

Like many aspiring singers on YouTube, 17-year-old Carley Allison has uploaded several videos of herself belting out covers and original songs.

But her most popular YouTube video, which was later posted on CNN iReport, was shot just after doctors sliced a hole in her neck. A golf-ball-sized tumor -- what turned out to be an extremely rare cancer -- was causing her to have difficulty breathing, and she needed an emergency tracheotomy.

Even after the tracheotomy, she could still sing.

"Music has been my passion ever since I was young," the Toronto resident wrote on her blog.

"I started taking guitar lessons when I was 11 years old, and I've been singing for as long as I can remember."

Allison hopes that, despite the tumor, she'll still be able to pursue singing as a career.

The diagnosis

Music wasn't always the primary focus of Allison's life. She initially hoped to become a competitive figure skater, training six days a week for more than five years. The intense training was something she learned from her mother, who was an Olympic marathon runner in 1996.

It was through skating that Allison first suspected something might be wrong. "Her skating coach noticed that just walking up a flight of stairs, she'd breathe hard," said her mother, May Allison. It seemed unusual that such a young athlete might have trouble breathing.

Allison and her family went for a year believing -- as doctors told them -- that she had asthma. But a CT scan in February revealed a malignant melanoma, an extremely rare type of cancer to appear in the throat.

Allison knew her skating career would be put on hold.

A rediscovered passion

Without skating to fill her time, Allison turned her efforts to singing. She has uploaded seven videos to YouTube in the past year, where she has nearly 50,000 views.

"Everything happens for a reason," she said of her condition. "It was an easy switch to put music as the biggest thing in my life right now ... and my music has taken off, which is nice."

In April, her videos received the notice of actress and pop star Selena Gomez. Gomez tweeted, "Carley Allison you are so strong girl. Love you! And praying for you. Keep singing."

The words echo many of the comments on Allison's YouTube and Twitter pages -- and helped her singing videos take off online.

She has certainly followed Gomez's advice, too. Singing is "therapeutic for her in a way," said her mother.

May Allison believes this is the best way her daughter has found to deal with the fact that she has a hole in her trachea and her hair has been shaved down, and it's how she has chosen to express herself.

Her daughter put it this way: "Before February 4, my biggest problem was trying to find a prom dress."

May Allison added, "She wants to make something of (her condition) instead of moping around."

Allison's focus on singing isn't unusual for a patient, said Dr. Michael E. Kupferman of the MD Anderson Cancer Center in Houston. He has seen others with cancer turn to creative outlets.

"Any kind of devastating medical situation will make people more introspective," he explained. "Artists' careers have sometimes evolved having gone through cancer. I've seen patients find that creativity to express themselves whether in music or in art. We've seen that for millennia. It changes the tenor of their art and productivity."

What the future holds

Will Allison still be able to belt out her songs in the same way if her cancer needs to be surgically removed?

Luckily, "her vocal cords are not involved with the tumor," according to her mother.

However, she added, "The one side that the tumor's on, the vocal cord nerve may be affected by the tumor. It's very difficult to tell on the CT scan. We're hoping the chemotherapy will help the situation."

Allison herself maintains a positive attitude.

"There is a smaller chance there may be some permanent damage, but I try not to think about that," she said.

Early on, there were some fears as well.

Allison admitted that she was originally scared by her diagnosis after searching online. She has since mostly stayed away from searching for information on her illness.

When the family learned about the tumor, May Allison said she and her husband got choked up.

"(Carley) turned to us in a calm voice and said she was glad it was her and not anyone else in the family, because she knew she could handle it."

Despite being told there was a 5% chance that chemotherapy would affect a tumor in the trachea, the tumor has become softer since treatment and has moved away from the thyroid gland, which makes it easier to remove surgically.

No matter what happens, Allison still plans to pursue her passions. She's still thinking about a possible singing career, despite the fact that she had to cancel an audition for Boston's Berklee College of Music a few days after she was diagnosed. She looks forward to getting back on the ice one day as well.

It's that unstoppable attitude that has been the most inspirational to witness, her mother said.

"From an early age, Carley always knew what she wanted and had no fear trying to get it," she said.

"For her, every day presents a new opportunity to take a step closer. The interesting thing about Carley is that she actually enjoys the journey as much as achieving her goals. When things don't go according to plan, she rallies quickly and moves on. She has the ability to make anything fun and finds it very difficult to sit still."

"She's been able to touch people," May Allison added. "Her public school raised $5,000 in a fundraiser for (Toronto's) Sick Kids Hospital where she's having her chemotherapy. There are thousands of dollars coming into Princess Margaret Hospital where she has the link on her blog. She's very proud of that."

In the meantime, Allison continues to inspire people on social media with her positive attitude.

"For me to be able to reach out to other people throughout all this has been great," she said. "People want to hear from me and hear my music right now so it keeps me happy. I cherish every moment. I have a different perspective on everything now. In the end, I think it will make me a better person."

"A successful man is one who can lay a firm foundation with the bricks others throw at him."--Sydney Greenberg 

INSPIRATIONAL STORY OF THE DAY
Her son has a rare disease--but there's still hope, and she and others are doing all they can, both for her son and for all rare diseases.  Read all about it:

It was the most devastating news an unsuspecting new parent could ever hear. I couldn't wrap my brain around what the neurologist was telling me.

Finally, I stopped her.

"Is this bad," I asked.

"Yes," she replied.

"So what you're telling me is that my son has a fatal disease?"

"Yes," she said again.

It was like someone had just pushed me off a cliff.

Our son Jonah Weishaar was diagnosed with Sanfilippo Syndrome Type C in May 2010 when he was 22 months old. At the time of his diagnosis, he was asymptomatic, and he still is -- but the clock is ticking.

Our geneticist gave us the best advice she could give in this situation. She told us that this didn't have to be a death sentence for Jonah. With the scientific advancements happening now, treatments that were unimaginable a few years ago are becoming a reality.

This was all we needed to hear. We hit the ground running. A few weeks later, Jonah's Just Begun was formed. The foundation is aimed at curing Sanfilippo Syndrome. We have two goals: To drive the science that will ultimately lead to a cure, and to raise awareness for all rare diseases.

Actor Jonny Lee Miller of the TV show "Elementary" is running a 50-mile ultra-marathon in honor of Jonah's Just Begun. Having him endorse us is a dream come true, and I'll never be able to thank him enough.

We've also formed a consortium of scientists, clinicians and parents all focused on saving our children's lives. We call this consortium HANDS (Helping Advance Neurodegenerative Disease Science). Today, we have four research projects in the works. In the coming weeks we will announce the official Sanfilippo patient registry and a natural history study, which follows a group of people with a disease over time.

Sanfilippo Syndrome is caused by a single gene defect. Because of that defect, an enzyme is not produced. This enzyme's job is to break down heparan sulfate, a long sugar chain. If the heparan sulfate is not broken down, it's stored in every cell, and that causes a cascade of bodily dysfunctions.

First affected is the central nervous system, causing profound brain damage. Also typical is hearing and vision loss, organ damage and bone deformities. Eventually a person dies after becoming unable to eat, walk or talk.

There are four different enzymes responsible for breaking down heparan sulfate: They are designated A, B, C and D. Jonah has Sanfilippo C, which along with D is ultra-rare and occurs in one of 1.4 million births.

Type A (one in 100,000 births) and Type B (one in 200,000 births) are more common and thought to be more severe. Most children with those types don't live past their teenage years.

Type C and D children usually have less severe symptoms. The children suffer brain damage in early elementary school; some live into their mid-20s. Most children succumb to organ failure or upper respiratory infections.

Children appear normal at birth, meeting their milestones. During the preschool years parents start to notice something wrong and the children seem to slow developmentally. Their speech is delayed, in part due to accumulated fluid in the middle ears. They have constant ear and upper respiratory infections, along with diarrhea. The texture of their hair turns kinky and thick. The children are described as having "coarse" features -- protruding foreheads, thick eyebrows, flat noses and full lips.

Next the children start to behave erratically, with hyperactivity, sleep disturbances and compulsions. The skills they have learned fall by the wayside. They are back in diapers, wandering aimlessly. Some stop sleeping for days.

Jonah is 4 years old now, and we've seen no sign of cognitive delay or regression. He does have a speech delay because of fluid in his middle ear, and he is on his third set of tubes. He's constantly congested and has minor bone deformities -- flared ribs and a raised sternum, for example. He goes to preschool full-time and has speech, occupational and physical therapy. He's happy and full of life, a character and the light of our lives.

There are close to 7,000 rare diseases affecting about 25 million people in the United States, according to the National Institutes of Health. About 80% of them are genetic, and it is estimated about half affect children.

Sanfilippo is not complicated like Parkinson's or Alzheimer's, it's just ultra-rare, so the pharmaceutical industry has not taken notice.

Very few federal dollars are allocated for funding rare disease research, and most go toward the diseases with larger patient populations. A disease is considered rare in the United States if fewer than 200,000 people have it. Sanfilippo type C has a known patient population of 16 kids in the United States.

It's left to the parents to lay all the groundwork to de-risk treatments for the drug makers. Our consortium wants to create a patient registry, conduct a natural history study and fund a treatment so we can hand it over to a drug company in hopes a treatment will be created.

Jonah could be the first child to ever walk away from Sanfilippo type C. He's priceless, and just like the thousands of other children affected by a rare and fatal genetic disease, he deserves a chance to live."

"Do not wait to strike till the iron is hot, but make it hot by striking."--William B. Sprague 

PARENTING NEWS DEPT
Hey Moebius moms and dads--you just know that the following goes for you, too; in fact, perhaps even more so for you.  Read on:

A new study from Japan confirms what many mothers may know instinctively: Picking up and carrying a fussy baby usually calms down and relaxes the child, making the move a good one for both moms and infants.
When mothers in the study carried their babies while walking around, the infants became noticeably more relaxed and stopped crying and squirming. The babies' rapidly beating hearts also slowed down, evidence that the children were feeling calmer.
"Infants become calm and relaxed when they are carried by their mother," said study researcher Dr. Kumi Kuroda, who investigates social behavior at the RIKEN Brain Science Institute in Saitama, Japan. The study observed strikingly similar responses in mouse babies.
Since carrying (meaning holding while walking) can help stop an infant from crying, Kuroda said, it can offer mothers a way to soothe short-term irritations to their children, such as scary noises or vaccinations.

Getty Images stock

A new study confirms: Hold that baby as much as you want!

The findings were published online today (April 18) in the journal Current Biology.
A strong calming effectFor the small study, researchers monitored the responses of 12 healthy infants ages 1 month to 6 months. The scientists wanted to discover the most effective way for mothers to calm a crying baby over a 30-second period — simply holding the baby or carrying the infant while walking.

Young babies carried by a walking mother were the most relaxed and soothed, compared with infants whose mothers sat in a chair and held them, the study found. As a mother stood up and started to walk with her child cradled close in her arms, scientists observed an automatic change in the baby's behavior.
These results held even after the researchers took into account other factors, such as the child's age and sex, and the mother's age and walking speed.
Kuroda said she was surprised by the strength of the calming effect from maternal holding and walking. In observing experiments on both humans and mice, she was amazed at how quickly the heart rate slowed, and by how much immediately after a mother started walking. (Mother mice pick up their young by the scruff of their neck with their mouths.)
According to the researchers, maternal walking may be more effective in calming infants than other kinds of rhythmic motion, such as rocking.
Advice for parentsWhen an underlying reason for crying persists, such as hunger or sustained pain, the infant may start crying again soon after the end of carrying.

That's why Kuroda recommended that when a baby starts crying, a brief period of carrying may help parents to identify the cause of the tears. She acknowledged carrying might not completely stop the crying, but it may prevent parents from becoming frustrated by a crying infant.
The findings also have implications for one parenting technique in which parents let babies cry as a way to help them learn to fall asleep by themselves, the researchers said.
"Our study suggests why some babies do not respond well to the 'cry-it-out' parenting method," Kuroda said.
Proponents of the technique advise parents to let infants, after a certain age, cry themselves to sleep — without mom or dad comforting them — in the hopes the baby will learn how to soothe himself or herself.
But Kuroda said that calming by maternal carrying, as well as crying during separation, are both built-in mechanisms for infant survival. These behaviors have been hard-wired for millions of years. "Changing these reactions would be possible as infants are flexible, but it may take time," she said.
Although this study looked at a baby's behavior in response to its mother, Kuroda said the effect is not specific to moms, and any primary caregiver for the infant can perform the carrying. The researchers observed the same carrying-induced calming effects when fathers, grandmothers and an unfamiliar female with caregiving experience carried babies who were under 2 months old, Kuroda said."

"The most exquisite paradox…as soon as you give it all up, you can have it all.  As long as you want power, you can’t have it. The minute you don’t want power, you’ll have more than you ever dreamed possible." -Ram Dass