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.

Putting Myself First

My son got sick early this morning and is sleeping off whatever it is that made him ill. He doesn't get sick often so it's hard to see him so miserable. He woke up asking for more water and didn't have much energy to even lift his head.

Today was going to be a special day for him at school. It's the last day of school before Winter Break and also the day they share Valentine's Day cards with one another. He spent a long time filling out the Valentine's Day cards and was looking forward to the celebration.

I was looking forward to heading over to a spa in the area for an hour-long session on Putting Yourself First with a friend and life coach who put together the event. Sadly, I will not be able to be there now since I'm here at home while my son sleeps.

It's ironic that today, putting myself first is not an option. I work with parents who I encourage to set aside time for themselves and with their partner but realistically, it's not as easy as it sounds.

Life gets in the way and responsibilities shift depending on the circumstances and so it is that I am meant to be here, still able to put myself first in some ways since my son isn't needing my attention right now. I keep going in his room to check on him and although I love watching him sleep, it's never fun to see him sick.

He's not himself today and I don't know when he'll be back to normal but for the time being, I am getting some things done (coffee, laundry and writing) while I wait for his energy to revitalize him and get him back on his feet.

I promised him that I'd bring his cards to his friends this afternoon and pick up his box of Valentine's cards that will be set aside for him. He's leaving for a mini-vacation next week with his dad so I promised myself that I'll use that time to put myself first. No excuses.

A Good Husband

Cory, from A Good Husband is growing a mustache in honor of Movember, an event created by a group of Australian bloggers to raise awarness for prostate cancer.

The money raised by Movember is donated directly to the Prostate Cancer Foundation which will use the funds for high-impact research to find better treatments and a cure for prostate cancer.

Did you know:

• Prostate cancer is the most common non-skin cancer in the US with one in six American men developing the disease and more than 28,000 men dying of the disease every year.

• African American men and those with a family history of prostate cancer are twice as likely to develop the disease and should have regular annual testing starting at 45. All other men should commence testing at 50.

• Prostate cancer is 90% curable if detected and treated early.

For those that have supported Movember in previous years you can be very proud of the impact it has had. You can check out the details at: [Fundraising Outcomes].

Orgasmic Birth

With a provocative title and in a city that boasts the highest percentage of births attended by a doula, Debra Pascali-Bonaro, a birthing assistant-turned-filmmaker, released Orgasmic Birth to an audience of over 500 people recently in Minneapolis.

Most of us associate childbirth with pain and discomfort. Debra's goal is to put a positive spin on the process of labor and hopefully, transform women's experience of it as well.

So what exactly does birth have to do with sex, other than the obvious fact that one follows from the other?

"The same hormone that we release in lovemaking is also released in childbirth and in breastfeeding — oxytocin," said doula Gail Tully. "It's a hormone that gives us a heightened perception, and it can take the edge off of pain."

Research suggests oxytocin is released when a woman feels safe and secure, when lights are dim, when there are few disturbances and there is quiet and privacy — not exactly the conditions in most hospitals.

In other words, the same conditions that are necessary for making love are necessary for having a baby.

The point of the film, says Pascali-Bonaro, is to show women, especially young women who have not yet given birth, an empowering image of birth that may certainly include pain but isn't about suffering.

Stephanie Johnson and her husband Andre Fischer of Minneapolis were at the screening.

"All I've been thinking of is that day of labor. I liked what someone said in the film, that pain of a contraction isn't a warning sign, something to get over. It's squeezing and embracing the baby."

Her husband, Andre Fischer, who has children from a previous relationship, was also moved by the film.

"I cried, because not all the other births of my children were like these," he said. "It was very emotional for me."

DVDs of Orgasmic Birth go on sale tomorrow, October 15th.

Source: St. Paul Pioneer Press

Innobaby

Innobaby's Natural Seat Topper is a multi-use seat topper designed to keep babies and toddlers more comfortable in their strollers, car seats, swings and more.

Designed for babies with eczema and sensitive skin, Natural Seat Topper features an earth-friendly fabric, ramie, which is a premium natural fiber known for its absorbency, breathability, and durability. Natural Seat Topper's patented design offers improved ventilation in addition to the natural benefits of ramie fabric. This combination helps reduce the chance of overheating and relieves the discomfort from perspiration. Additionally, ramie fabric naturally offers resistance to bacteria and stains.

Natural Seat Topper is available in a variety of trimming patterns.

ADHD

I know little about ADHD other than what media reports about the increase of young people diagnosed with this "disorder." Growing up, I don't think this term was in existence, at least not that I was aware of.

My son is only 4 1/2 and not at risk, I don't think, for ADHD, but it doesn't hurt to be aware of the symptoms and learn a little more about it since, chances are, either he or someone he knows will be diagnosed with ADHD over the coming years.

I discovered a great article this morning, courtesy of Your Total Health, which included some facts that might help parents and teachers that work with young children.

• 19 Facts About ADHD
• Managing ADHD: A Parent's Guide to Success
• A Guide to ADHD Medications

I'd love to hear from readers who have children that have been diagnosed with ADHD or if you are an adult living with ADHD yourself. We all learn from each other so I'd like to know what your biggest challenges have been and what we can learn from your experience.

Dancing My Ass Off

I hardly ever have the TV on. Lately, of course, I've been watching the Olympics and when my son is with me we watch PBS Kids or Nick Jr. on occasion, but other than that, my TV is typically turned off. Alright, I admit, there are a few nights when I stay awake watching BRAVO but seriously, there's nothing I'm committed to watching on a regular basis.

I'm embarrassed to say then, that a few days ago I ended up watching an entire infomercial. The music and the dancing is what stopped me from skipping past the channel. It wasn't until a minute into it that I realized I was watching a paid advertisement but I couldn't stop watching. I was intrigued.

Now, before I share the product with you (yes, I ended up buying it), I do need to remind you of the challenge that I accepted. I haven't purchased new running shoes yet, or a bike, but I seriously need to do something to get back in shape and lose a few pounds (and hopefully one dress size).

You're probably dying to know what product it was that sold me with their infomercial, right? It was one that I had not heard of before and the before & after photos seemed so real that I couldn't help but wonder if this was something that could truly work for me.

Zumba® Fitness is a new program created by Beto Perez. He claims that this program is so effective that you can lose up to a dress size in just 10 days. In fact, he offers a money back guarantee.

This total-body transformation system has been proven to burn up to 1,000 calories per hour! So what's the program and how does it differ from the compeition?

Well, it's meant to make you feel like you're at a party or club with its scorching fusion of world music and spicy dance rhythms. One of my friends has been taking salsa lessons for nearly two months now and has dropped several pounds just by dancing. With my schedule being what it is, I knew that this DVD system that I can do from home or take with me on the road would be the best chance for me to have this same experience.

Alberto "Beto" Perez is from Colombia and is a celebrity fitness trainer and choreographer for international pop superstars. Inspired by the traditional cumbia, salsa, samba and merengue music that he grew up with, Beto paired his favorite pulsating Latin rhythms with the red-hot international dance steps his clients loved.

Along with the DVDs that contain the different programs to introduce cardio into your routine as well as sculpt and tone muscle, the Accelerated Fat Loss program is included as well as toning sticks, which are a combination of weights and maracas that let you make music as you shake your way to a tight, toned body.

My sister has agreed to participate with me this week so in a few days I'll report back with our success stories and hopefully, I'll be able to share with you some before and after pics of my own if I can just stick to it and commit to adding this fun and unique routine - and diet - into my schedule.

The Importance of Play

How much time do you set aside each day for play? No matter what your age - or the age of your children - play is vital to your health and longevity. With technology and medical research helping people to live longer than ever before, staying young at heart is just as important as staying physically fit.

Six types of play are outlined in the PsyBlog article that I recently discovered:

1. Unoccupied Play
2. Solitary Play
3. Onlooker Play
4. Parallel Play
5. Associate Play
6. Cooperative Play

"Through play children learn and practice many basic social skills. They develop a sense of self, learn to interact with other children, how to make friends, how to lie and how to role-play."

According to Mildred Parten, from the Institute of Child Development in Minnesota, "Learning to play is learning how to relate to others."

Read more on play and how children learn to work together.

Tips for Spicing Up Your Love Life

Zen Habits provides great advice and healthy suggestions for living a more balanced life. While this list was created as a tip for those who want to create more passion and energy in their marriage (written by Corey of The Simple Marriage Project), I feel it is necessary to pass along these suggestions to anyone looking to spice things up in their current relationship:

• Grow Spiritually
• Learn to Live Complaint-Free
• Live Passionately

• Live Simply
• Have Sex
• Live in Community

For details on what exactly these suggestions mean and how to incorporate them into your daily rituals, head on over to Zen Habits...and tell them I sent you!

Peanut Allergies & Bee Stings

My son got bit by a bee the other day. It was traumatic for both of us. Our neighbors came outside to see what all the screaming was about since my son was crying and shouting, "It hurts," over and over again for what felt like me to be over ten minutes straight.

He finally calmed down completely after about 45 minutes. The remedy that seemed to actually ease the pain was a penny. That's right. Good old Abe Lincoln was pressed to his bee sting on the tip of his finger and my little boy carried the lucky penny around the rest of the day - and part of the following morning, pressed to his finger. He even slept with it that night and somehow I found it before he woke up so I could prove to him that he did, indeed, have it with him all night.

His grandmother told us about this bee sting solution and although I was a bit leery at first, it did seem to work. I don't know if there is a medical explanation for putting a copper penny next to the swelling but the ice didn't seem to help and I couldn't bare to leave his side for those agonizing few moments after the incident.

Over at Daddy's Toolbox I read his experience with his daughter's peanut allergy and how she reacted and how both he and his wife reacted. I pretty much panicked too when I first learned that my son had gotten stung. He was just outside the front door playing with his friend and neighbor. I was inside when I heard his first scream but was there at his side seconds later. A mother has the powers of a superhero (as far as speed is concerned) when those painful sounds reach her ear.

After my son calmed down enough for me to think clearly, I went to the internet to search on symptoms of allergic reactions, just in case my son started showing signs. It turns out that he is not allergic but what I read on line disturbed me for the rest of the day since I learned that sometimes it takes up to six hours for symptoms to start to appear. You can bet I was anxious and more observant than usual that night.

I have introduced my son to peanut butter so I know that this is not a concern. But how does one manage when a new diet and routine is thrown into the mix of an already stressful time with young kids in the house? Let's face it, parenting is not easy. It's challenging and exciting and full of adventures.

I can't wait to see what tomorrow brings.

Healthy Living

Check out these articles, from Your Total Health:

• Ten Tips to Reduce Stress
• 14 Ways to Beat the Heat
• The Smell of Coffee Reduces Stress
• No Work Workouts

I'm all about reducing stress, whether it's with caffeine or no work workouts. And with the heat wave lately, we're all dying for a little relief. What do you do to keep cool and to keep your cool?

Lichen Sclerosus

It's been a long time since I thought about the rare disease that I have. I don't actually like to think of it as a disease, but rather a skin disorder.

I'm not contagious, there is no cure, but it is under control if I follow my doctor's instructions. Luckily, there are also websites and support groups for those suffering from this unusual condition. I don't think there's been major drama in my life due to lichen sclerosus but it does sound a lot worse than it really is and perhaps I'm one of the lucky ones that isn't as affected by it as others might be.

If you, or someone you know suffers from this chronic skin disorder, the following websites offer more information:

FOUNDATIONS & SUPPORT GROUPS:

• NLSSG: National Support Group
• American Urological Association: AUA
• American Academy of Dermatology: AAD
• Lichen Sclerosus Support and Awareness Group: Support and Awareness
• Yahoo Groups: Support Group
• International Society for the Study of Vulvovaginal Disease: ISSVD
• Vulvar Pain Foundation: VP Foundation

TREATMENTS & MEDICATIONS:

• NIAMS: Treatments for Lichen Sclerosus
• National Lichen Sclerosus Support Group (NLSSG): Treatments for Lichen Sclerosus
• BBC Health: What's the Treatment?
• HealthNewsFlash: How is Lichen Sclerosus Treated?
• eMedicine: Medications for Lichen Sclerosus

The websites mentioned were found through Organized Wisdom, a human-powered, physician-guided search service for health.

The Cleanest Diapers on the Planet

If I were to have another baby (or when I do), I most definitely plan on doing things differently. The main change that I would make would be the elimination of disposable diapers.

Blueberry Diapers, founded by mom Margarita McClure, turned me on to the idea of leaving behind the "convenience" of disposable diapers and switching to a safer, healthier and environmental-friendlier organic cotton cloth diapers.

There are many statistics that point to the growing problem facing our environment. Did you know that it takes (on average) between 250 - 500 years for disposable diapers to decompose?

How about the fact that the liners in disposable diapers still contain sodium polyacrylate, the same substance that was removed from tampons over twenty years ago!

I also had no idea that diapers are made from petroleum by-products. Add to that the cost to families during the diapering years ($2,000 - $2,500) and it just makes a whole lot of sense to start changing our habits within our homes.

Since babies are so much more vulnerable to toxic exposure, McClure set out on a mission to create the cleanest diaper on the planet. She did so with both Swaddlebees and Blueberry Diapers - free of bleach, chlorine or pesticides.

Swaddlebees are made of organic cotton and are designed with fun and whimsical patterns (from zebra print to blue latte). Over 32 designs are available on line as well as diaper covers and accessories.

Jamba Juice Bottled Beverages

I was delighted to receive samples in the mail from Nestle's new Jamba Juice line that is just being launched on the West Coast. They're now available at local grocery and convenience stores in select cities in Washington, Oregon, California, Idaho, Arizona, Colorado, Utah, and Nevada!

I had one right away - the Strawberries Wild Smoothie with Energy Boost - and I ended up skipping lunch that day, only because it kept me energized and not craving food throughout the afternoon. It was yummy, and especially exciting to know that I was drinking something healthy since it's "a good source of seven B-vitamins that help support the release of energy to aid in performance and physical stamina."

I'm not only stocking up on these when I finally locate them at my neighborhood Albertson's, but I'm also purchasing stock in the company. I have a feeling these are going to do very well since they're healthy, packed with nutrients and they taste great.

I've never been a fan of artificially colored "energy drinks" but these blended smoothies are the perfect size to grab when you're on the go and they taste much better than any meal replacement shakes that I've tried.

The new bottled beverages offer both smoothies and juices, giving consumers two options when it comes to Jamba Juice's healthy, high-quality fruit drinks. When the line for Jamba Juice is out the door on a hot summer day, I look forward to reaching in my refrigerator and pulling out an energy boost - night or day.

Healthy Sex Life = Healthy Marriage

Everyone's "doing it." Talking about sex, that is. It's everywhere (or maybe I'm just noticing it more lately because I'm not gettin' any).

In the past month, author Douglas Brown and his wife Annie have appeared on the "Today" show to discuss their exhausting adventures of having sex for 101 days - in a row!. A writer for the Denver Post, Brown wrote about the impact this experiment had on his marriage in Just Do It: How One Couple Turned Off the TV and Turned On Their Sex Lives for 101 Days (No Excuses!).

Many studies have proved that having an active sex life is good for one's health. Did you know, for example, that having sex three times a week burns around 7,500 calories in a year -- the equivalent of jogging 75 miles? Now, I realize that jogging 75 miles in one year is not a whole heck of a lot to brag about (it's less than 2 miles per week people), but let's not forget the fact that making love on a regular basis can also help lower your cholesterol, reduce stress and help protect a woman's heart (literally and figuratively).

Just Do It promotes the idea that a healthy sex life is also a key ingredient to a healthy and successful marriage. So, what are you reading this for? Go on, you know you need to burn off a few calories.

Sex Ed - Grown Up Edition

I'm working on writing a curriculum entitled, Let's Talk About Sex: Straight Talk Between Parent and Child. I'll be teaching this one-hour workshop to parents in the community in September. Incorporated in the workshop is a growing list of topics to help young parents educate their children so that they can - hopefully - make smarter, healthier decisions when it comes to their bodies and their sexuality.

STDs are top on the priority list as far as things I plan to cover. Some parents might want to know why my first concern is not "birth control," or discussing reasons to abstain.

Times have changed since my parents were teens. Times have changed - dramatically - since I was a teen. Sexually active people (no matter what their age) have always put themselves "at risk" for unplanned pregnancies, hence the name "birth control."

What amazes me is how little is known or discussed about STDs and the prevention of them. Sexually active individuals are more likely to have an STD, pass along an STD unknowingly or contract an STD than they are to conceive a child! This is the reality that young people, in particular, are having to deal with - unfortunately, from first-hand experience.

One in four American women between the ages of 14 and 19
has a sexually transmitted disease.

There have been many reports and discussions in the news about young people engaging in oral sex more often than the "sex" sex that most of us knew as teenagers. Yes, oral sex "existed" then, but there are many young people today who consider themselves virgins (and admit this proudly) even though they've participated in oral sex.

Times certainly have changed. With statistics being what they are, this type of ignorance is more dangerous to a person's health than they realize.

Let's start to educate ourselves and our children before it's too late.

Thank you to LOVE IN THE TIME OF HERPES for the inspiration behind this post. And a big thank you hug goes out to the blogger for her dedication to educating readers and allowing those of us who have an STD to "come out of the closet."

Y Not?

Printed on recycled paper and taking 10% of everything you spend to go toward changing the world, The Y Catalog is definitely a company and catalog that I encourage you to check out.

Here is a list of the organizations that receive a percentage of the proceeds:

CARE
The 11th Hour Action
The Fisher House Foundation
The Mukti Mission
Solar Meninos de Luz
Organic Farming Research Fund
YouthAids
Iraq and Afghanistan Veterans of America
Africa Yoga Project
Friends of Animals
The Santa Fe Mountain Center
Surfrider Foundation
3 Phases Energy
Trees for the Future
Y.O.G.A.
Shanti House
EBMRF
The Food Bank for NYC
Room to Read
Yoga Ed.
Teens for Safe Cosmetics
Seva Foundation
The Telluride Adaptive Sports Program (TASP)

Anger Management

Between road rage and domestic violence, there is an urgent need to help young people deal with their negative emotions before things get out of control.

Family Resource, a website dedicated to helping families, has great suggestions for learning to let go:

It is almost impossible to be upset when your body is relaxed. Try one of these relaxation skills, even in the middle of a challenging situation:

• Breathe slowly and deeply while imagining that tension is leaving your body with each breath.
• Try to inhale and exhale for the same amount of time (e.g., inhale for a count of four, exhale for four). Imagine that the breath is going in and out of the region of your heart. Meanwhile, recall or think about things that give you an appreciative, grateful, loving feeling. (For more on this simple but powerful technique, check out the books from the HeartMath Institute in Santa Cruz.)
• For a young child, a little trick that will help her breathe deeply is to ask her to exhale fully and then hold the exhalation for a couple of seconds - when she inhales, she'll naturally take a big breath.
• Deliberately relax certain trigger points, such as the jaw muscles, pelvic floor, or the "third eye" between the eyebrows.
• Recall or imagine a very happy, peaceful scene.

You can deepen your capacity to relax when the fur starts flying by practicing relaxation techniques at calmer times, like right before bed:

• Systematically put your attention on each major part of your body, starting with your feet and working up to your head. If it helps, think a phrase like "relax," or "locate a point" for your left foot, right foot, left ankle, right ankle . . . all the way up to your scalp.
• Tense your muscles for about five seconds and then relax completely.
• Imagine that you are v-e-r-y heavy, sinking more and more deeply into your bed
• Imagine that your hands are very warm, like holding a cup of hot cocoa (this one is especially good for insomnia)

For kids, bedtime is a great time to train them in these techniques, since they'll put up with more mumbo-jumbo to keep you in the room. The point is that you will initially take them through some of the methods above, and then over time you will expect them increasingly to use the methods themselves at night -- as well as during the day, in real-life situations.

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.