The #1 Genetic Killer of Infants

Even though I'm exhausted, I need to share this message that I received today from a dear friend. I had to read it several times before I was able to really register what it said.

"As you know, my sister and her partner had a baby girl this past October. Yesterday, after many, many tests, the baby was diagnosed with Spinal Muscular Atrophy Type 1, SMA for short. Unfortunately, there's no cure and as the disease progresses it rapidly attacks the nerves, affecting her breathing and muscle development. As of now they have given her 3 months - 1 year. On top of this, because both my sister and her partner carry the gene that causes this, any children they have in the future will most likely be born with this as well. My family is strong and has handled stuff like this many times, but it's devastating. After they put in the feeding tube this week they will be able to bring her home where they will try to give her more love and comfort. There is hope...there's always hope. There is an experimental drug that can help hold off the progress while they research for a cure. She will be receiving this drug in hopes that they can find a cure."

My heart is breaking for the new mom and dad, grandparents, aunts, uncles, cousins, friends and community who have fallen in love with this precious little baby.

I'm grateful for the fact that my son is healthy, in every sense of the word. I'm glad that even though today was a rough day for the two of us, I was able to chase him on the playground, hold him when he cried, and sing him to sleep tonight.

When all is said and done, I need stories like these, unfortunately, to remind myself just how blessed I truly am, how strong mothers and fathers can be and how truly precious each and every one of our lives really are.

"Don't pray when it rains if you don't pray when the sun shines."

- Satchel Paige

I was feeling helpless and sad when I read the email for the first time. Then I became angry and now, as I'm typing this, I'm near tears once again because it really is unfair that this disease affects so many families and why have I never heard of SMA until now?

I want to help. I want to give my friend more hope and pass something on to her family that perhaps can provide them with a little bit of faith as they deal with each day of this battle.

I'm donating money in this baby's name to both the SMA Foundation and Families of Spinal Muscular Atrophy. I challenge each and every one of you to do the same. You may not know of anyone who has had a child diagnosed with this disease, but it's the most common genetic cause of death in infants and there is no cure.

The Magic of Macy's

Do you believe in Santa Claus?

The magic of the holiday season is revealed Christmas morning, seeing the look of amazement in our children's eyes as the milk and cookies have disappeared and presents have filled the space under the tree.

The act of giving and receiving gifts mirrors the love we share and gratitude for our loved ones. There are so many ways to express the magic of the holidays and this year, Macy's is offering a great promotion that will have parents and children spreading joy in the weeks to come.

Writing letters to Santa Claus is an age-old Christmas tradition for children all over the world. Macy’s is collecting these letters in a special Santa letterbox at all Macy’s stores.

For each letter received, Macy’s will donate $1 to the Make-A-Wish Foundation^®. Since 1980, the Make-A-Wish Foundation^® has enriched the lives of children with life-threatening medical conditions through its wish-granting work. The Foundation's mission reflects the life-changing impact that a Make-A-Wish^® experience has on children, families, referral sources, donors, sponsors, and entire communities.

The Macy's Believe Meter will measure America’s belief, based on our collective spirit – including the amount of letters received and other current events that reflect the season’s generosity.

I'm looking forward to watching and helping my son draft a letter to Santa. He'll be excited to see the big red mailbox at Macy's and we'll both walk away knowing that other children will benefit.

What Makes Tracy a Happy Healthy Hip Parent

True to my word, I'm highlighting happy, healthy, hip parents over the next few months who may not be famous but who are raising amazing children and celebrating many other successes in their lives.

Facebook has brought me face-to-face with several high school classmates since joining, including Tracy, mother of two. Her son will be turn four in less than a month and her daughter just recently reached her six-month milestone.

Besides being a mom and wife, Tracy works as an Accounting Manager for Bechik Products, Inc., a small mattress supply distributor and manufacturer in Eagan, Minnesota. She also recently started TNT Dancer this year, a one stop shop for all dance necessities. Her goal is to grow this online business, quit her full-time job and spend more time with her children.

I asked Tracy to answer a few questions about her relationship with her children and her role as Mom.

1) What makes you happy, as a parent?

I love watching my children learn. Ryan is writing his name and beginning to read short words. It absolutely fascinates me. He isn’t even four yet! Their little minds just blow me away.

Lea is rolling all over and laughing constantly. No matter what kind of a day I had I know that she will make me smile. Every new action and gesture she makes is amazing. Just seeing my children and receiving hugs makes me very happy.

2) What’s the healthiest thing about your relationship with your children?

My children and I have a great relationship. Ryan and I are constantly laughing and making up new games. Our imaginations run wild and that is not only healthy for him, but it keeps me young.

Lea lights up when I walk into the room. Whenever she is sad and just needs a break, Mommy can always calm her down. Sometimes she just needs a break from Daddy - not everything is a game at 6 months!

3) Kids say the cutest things. What is the funniest story you recall about your children?

Ryan is constantly saying cute things. A few of them are:

“I am handsome, just like a Daddy!”

About his Spider-Man Halloween costume (it had poofy arm muscles and pecks). "I have muscles like Daddy and boobies like Mommy.”

“Mommy, you are my girlfriend.”

Lea just squeals a lot.

4) What is your proudest parenting moment?

When Ryan told me how he spells his name and then wrote it. I was so proud. He loves to learn and I like to think that I have something to do with that.

5) What is your biggest parenting challenge?

My biggest challenge is my physical limitations. I have multiple sclerosis and it can be very challenging to work full-time, take care of my 2 kids at night, and maintain a tidy home. Luckily I get help from my husband around the house and with the kids. My mother is also a huge help.

The challenging part is fatigue and how that makes it even tougher to keep up with an almost four-year-old.

6) What’s your favorite activity you enjoy with your children?

My favorite activity with Ryan is reading. It is relaxing for me and Ryan is starting to learn the words, so very fun for him.

7) How would your children describe you?

I think that Ryan would describe me as a goofball. We are always laughing and singing. Anything to be silly. My Mom was that way with my sister and I. It was great. I am bringing that same smiley outlook to my children.

Lea probably just thinks I'm the lady who changes her, gets food, and smiles a lot.

8) Who or where do you go to for parenting advice?

I go to friends or my Mother for parenting advice. If the questions I have are too technical I do some research on-line or call the doctor.

9) What advice would you give to new or expecting parents?

Enjoy every moment with them because your parents were right…they grow way to fast. Get down to their level and act like a child. Always laugh! They are only little once.

I encourage you to visit the National MS Society and donate an amount that you can afford to help fund cutting-edge research, drive change through advocacy, facilitate professional education, and provide programs and services to help people with MS and their families move their lives forward.

Sesame Street Revamps Website

My son has outgrown Sesame Street although we still watch PBS Kids from time to time. I especially enjoy WordGirl, Between the Lions, Arthur, Super WHY!, WordWorld, and Dragon Tales.

I recently heard that Sesame Street has revamped its website so I had to check it out. I can't even tell you how much fun my son and I have playing games on line. He first learned his colors and how to use the computer mouse from the learning activities found on this family-friendly website. Now, he's learning basic math skills from Cyber Chase and I can't begin to describe how safe I feel when he's on the site, having fun and learning at the same time.

I often get letters in the mail from Sesame Workshop, asking for donations. I will tell you that even though my son no longer watches Sesame Street, I will always send them money since I know how valuable those early experiences with language and learning truly are to my child's development.

If you haven't visited the Sesame Street since it made some improvements, head over now. The site for parents includes many great tips, such as the article on Understanding How Preschoolers Handle Stress or Handling Delicate or Hurtful Situations.

Vagina Festival: Only in NYC

Vagina Festival is a visual and performance art experience, organized by artist-activist, Alexandra Jacoby. It is an outgrowth of her project, vagina vérité®—an unabashed exploration of the plain, ordinary, mysterious matter of vaginas.

VAGINA FESTIVAL is an opportunity to have conversations we don’t typically get to have - in ways we don’t typically get to have them. Through visual art, performance, speaker presentations and interactive activities, Vagina Festival forms a welcoming space for exploring sexuality, body image, personal identity, health and well-being.

At Vagina Festival, we exchange ideas, challenge cultural norms and celebrate women. Their aim is to engage people by creating a fun, moving, thought-provoking experience.

Vagina Festival is made possible by generous sponsors and volunteers who are passionate about creating conversation. If you’d like to be a part of organizing and promoting Vagina Festival, go now to sign up.

October 24-26, 2008
Sage Theater
711 Seventh Avenue, 2nd FL
New York, NY 10036

Vagina Festival is a sponsored project of Fractured Atlas, a non profit arts service organization. Contributions on behalf of Vagina Festival may be made payable to Fractured Atlas and are tax deductible to the extent permitted by law. Donations can be made by credit card, or by check.

Donations Now Accepted

Schedule of a Single Mom:

6:30 am

Alarm goes off. Mom showers and gets dressed and ready for work.

7:00 am

Four-year old wakes up, goes potty, heads to kitchen table for breakfast. Climbs down from his chair to wash his hands.

7:15am

Four-year old finishes eating & playing. Heads to family room to play some more. Mom spends quality time with son.

7:45 am

Son gets dressed while Mom puts lunches together. Son watches PBS kids.

8:15 am

Mom and son brush teeth, pack up belongings, apply sunscreen, turn off lights and lock door.

8:45 am

Mom and son arrive at first day of Summer Camp. Walk around campus together and check out classroom.

9:00 am

Son says quick goodbye without looking at Mom. Mom stands at doorway watching son interact with new teachers and friends. Mom fights back tears of both joy and sorrow. Realizes she won't see her son for over 48 hours.

9:10 am

Mom arrives at work. Gets down to business.

4:39 pm

Mom heads out of the office to get to meeting with client.

5:10 pm

Mom arrives ten minutes late. Orders first coffee of the day.

5:15 pm

Mom meets with client whom she charges by the hour.

6:30 pm

Mom realizes that she's extended the meeting by fifteen minutes. Packs up belongings and says goodbye to client.

6:35 pm

Mom heads to grocery store where she is surrounded by too many childless couples making out in the aisles. Vows to never grocery shop with future partners. Ever.

7:05 pm

Mom arrives home. Has dinner in front of computer.

8:00 pm

Mom checks email and responds to several inquiries.

9:00 pm

Mom calculates her expenses and realizes she doesn't charge enough to cover her costs.

9:25 pm

Mom realizes that donations can help cover the costs to make up for the discounts offered to parents who are financially challenged.

1:00 am

Mom heads to bed feeling good about helping parents enrich their relationship with their children.

Book Review: Nordie's at Noon

I can't recall where I first heard of this book, Nordie's at Noon, but I got the chills when I read the subtitle: The Personal Stories of Four Women "Too Young" for Breast Cancer.

Breast cancer kills approximately forty thousand women each year.

These are the true stories of the emotional ups and downs that four women faced during their mid twenties and early thirties after being diagnosed with breast cancer.

Like any group of young women, they talked about their careers, their relationships, their dreams and more serious issues that brought them together once a month at a local Nordstrom department store: cancer.

Jen (diagnosed at 27): I decided to focus on living and taking chances. I would have no regrets whether I lived to a hundred or to thirty. I was sent here for a purpose: to raise my little boy and help other women who may follow in my footsteps. That's what I would do. (p. 149)

I am thankful that I can appreciate my parents now while they are still living, and I look forward to the day when my children have their own children and can begin to understand how very much I love them. (p. 173) Two life-changing experiences had happened to me at the same time. I brought a child into this world and faced my own mortality. Either one would have been a challenge on its own; facing both at the same time was pretty overwhelming. (p. 190)

Patti (diagnosed at 24): You don't realize that hormones are such an integral part of you until they're taken away. Most women lose their hormones gradually. Mine were gone in an instant. (p. 187)

A true celebration of friendship and living to the fullest, Nordie's at Noon is also a book that will encourage women everywhere to be proactive with their health - and to realize that no one is "too young" for breast cancer.

Parenting Party Sponsor - SUMMERSKY

SUMMERSKY “dares to be different”; you can see that not only from the designs but also through their models.

Together with the Down Syndrome Foundation, they have photographed models with Down Syndrome to model their collections; a group which is sadly seldom or never shown in fashion photography.

Why not? We couldn’t tell you, because look at their beauties. These children represent all children with a disability, handicap or anyone who feels, or has ever felt, "different".

Donations and Support

Of every sold item Summersky donates: in the USA, $1.50 to the "Oprah Winfrey's Angel Network" and in the Netherlands, 1 Euro to "stichting down syndrome".

Click Here

I love sites that truly help others by having users simply click here or there. I have two sites like this to share and I'm equally excited about both.

FREE RICE is a site which not only helps feed the hungry but helps increase your English language vocabulary.

For every word you correctly define (you get four choices to select from), Free Rice will donate 20 grains of rice through the United Nations to help end world hunger.

I know, 20 grains of rice doesn't really sound like much, but this site is as addicting as solitaire once was.

I'm proud to say that I donated at least 200 grains of rice during my first 4 minutes on the site. I learned many new words and correctly defined even more.

The site does come with a warning, however: This game may make you smarter.

It can also help you:

• Formulate your ideas better
• Write better papers, emails and business letters
• Speak more precisely and persuasively
• Comprehend more of what you read
• Read faster because you comprehend better
• Get better grades in high school, college and graduate school
• Score higher on tests like the SAT, GRE, LSAT and GMAT
• Perform better at job interviews and conferences
• Sell yourself, your services, and your products better
• Be more effective and successful at your job

After you have done Free Rice for a couple of days, you may notice an odd phenomenon. Words that you have never consciously used before will begin to pop into your head while you are speaking or writing. You will feel yourself using and knowing more words.

The Breast Cancer Site is a shopping site like many others, however, each and every purchase you make goes toward the donation of a mammogram for women in need.

They have something for just about everyone on your gift list: your sister, girlfriends, mom, kids and even pets.

International shipping options are offered on select products so take advantage of these low-cost gifts (check the SALE section) and help raise awareness and support a great cause.

Not in the mood for shopping? That's OK. Just CLICK HERE to donate mammograms.

Stuffed

One of my favorite Kane/Miller books is Dougal the Garbage Dump Bear by Matt Dray of Australia. It's a photographic collection of stuffed animals and a tale of what happens to them when they get tossed in the dump. Not that you or I would actually throw these plush, stuffed or slightly-worn toys in the garbage, since there are several places that accept these gently-used and much-loved buddies to pass along to others who could use them.

The Salvation Army
Project Night Night
Stuffed Animals for Emergencies (SAFE)

These organizations were listed in the November issue of Wondertime magazine, a wonderful resource for parents.

National Breast Cancer Awareness Month

I would like you to take a few moments to focus on your breasts. Seriously.

Kane/Miller Book Publishers

I have to confess that I am in the bad habit of ignoring the routine breast exams that I should be doing. I see my doctor once a year and she asks me if I examine myself on a regular basis. For about one or two weeks afterwards, I do. I make a point of spending an extra thirty seconds (30 seconds!) making sure everything is normal (as if I have ever been accused of being anything but!). But a few months later I find myself neglecting this important ritual and so I'm reminding you, and myself, to add it as a regular part of your daily schedule.

October is National Breast Cancer Awareness Month. But why October? Why breast cancer? There are so many other cancers that don't get their own month. Many are quite rare and some you might not be familiar with or have ever heard of. For example, did you know that there are over five types of breast cancer? You'll find a list of specific forms of cancer, with links to each, from the National Cancer Institute website.

Please take a moment and ask yourself when you last visited your doctor and whether or not you have a hereditary risk that should make you think twice about skipping that daily exam. Schedule an appointment with your physician if you haven't seen him or her in a while. You want the best for your children so be sure to be your best for them as well.


The Dana Farber Research Institute, along with children's book illustrator Grace Lin, honor her husband's battle with Ewing's sarcoma through an online auction beginning in mid-November. With the support of dozens of other children's book illustrators, Robert's Snow: for Cancer's Cure is a wonderful way to help create magic in people's lives, both through the beautiful snowflakes you bid on as well as the hope that you bring to those whose lives have been, or will be, affected by cancer.

View the 2005 and 2004 archives or go directly to the 2007 snowflakes to pick out which ones you will place a bid on. And don't forget to mark your calendar so you don't miss out on the opportunity to help raise money for an important cause.

Auction 1: November 19 - 23
Auction 2: November 26 - 30
Auction 3: December 3 - 7

My personal favorite, from the 2005 archive

(by Paul O. Zelinsky):