March of Dimes

SHARE HOME > COMMUNITY CENTER > THE SHARE COMMUNITY BLOG

ARCHIVES

ShareBloggers

September 2010

Category: Home

Sun

Mon

Tue

Wed

Thu

Fri

Sat

HAPPY FATHER'S DAY!

Jun 13, 2007 04:09pm (EST)

Anyone who has spent some time browsing Share Your Story will see that the overwhelming majority of Share’s regular posters are women. But among these wonderful mothers, grandmothers and aunts we have found some really wonderful dads who have contributed beautifully to the site.

In honor of Father’s Day on Sunday, Karen ( DNASMOM ) has helped me collect some beautiful quotes from the Men of Share.

Happy Father’s Day, dads! Thanks for helping to keep the /Y/ chromosome represented with your wisdom and wisecracks, your heart and your humor, and most of all for your love for these amazing children.

From Todd, Elliot’s Dad, in his blog, “Fragments of Fatherhood ”:

"The kid doesn't need me yet. All she wants is food. It's just hard, with no purpose.

“Until yesterday or today...
Now she seems to like lying around on me and looking at my face. I play with her and she notices. She's ticklish. She has put her hand on my scratchy face a few times now, and her eyes get all big. She seems to be studying me. And she doesn't cry immediately upon waking. She hangs out with me now.

“I was feeling pretty useless. And now...
I'm in love all over again.
I get to be a dad all over again. This is so cool!”

From David, dloewenstein, in his short story :

“One of the most poignant lessons that I have learned based on Rachel’s heroic struggles is that we often never appreciate a blessing until the moment that it is lost. We have today to extend both love, appreciation and acceptance to others and to make our lives matter. We must also accept that life is not fair and that bitterness about the past is the corrosive that consumes the container which holds it.”

From Steve, gavinsdaddy, in his blog, “Hitting the Trails with Daddy and his Little Campers”:

“… I'm learning to stand in the shadow and guide them. Let them be independent but be there to give them help when they need it. Yes they grow too fast and when I'm 50 they will still be my baby boys! I will always be there to guide and protect them. That’s my duty as their dad.”

From Jason, spence, in his blog, “A Day in the Life of Spence J. Vitaliano! ”:

“This kid is so tough - makes me look like a pansy! He's quickly become quite the role model and well he gives me so much strength seeing him go through so much and then fight so hard to get back up - he just loves life and wants to be off this vent. I hope he gets his wish soon.”

From Rick, MarksTwins, in his blog "Charles and Lawrence Marks ":

"We know that Lawrence is now safe, healthy and comfortable. Thank you for caring about our little son and for keeping us all in your thoughts and prayers. We forever have two holes in our hearts for our twin boys but they are together again.

We now have two angels watching over us. Thank you Charles and Lawrence."

From Chris, ffemtp628, in Parent to Parent:

“Barb and I have, many times, wondered what if anything we could have done as parents to prevent this pain and stress in all three of our lives. We have seen so many other parents at the hospital who ignore all the do's and dont's of pregnancy, yet have healthy kids. Its hard not to ask why, that's just human nature… Even when it’s hard to see the positive in a situation, that doesn't mean that it’s not there waiting for the right moment.”

From Steve Chandler in his blog “Miracle Cheyenne ”:

“Could I handle seeing her? Could I be strong enough to see how small and fragile she was? Sometimes though it is best to not think and just react. I knew the answer as soon as he asked. I said yes, we walked over and there she was. Dark haired, very red and extremely small. I touched her. My first touch with my new daughter. She grabbed my finger. I could see her hands and feet were like mine. Long and gorgeous, she was gorgeous. I went back with Sherry and before the bay was whisked away Sherry saw her all swaddled up except her cheeks. Our miracle was just beginning.”

From Brett, Quad-Dad , in Parent to Parent:

“Growing up, my understanding of what Fathers do was formed by being around my own dad. They provide, protect, and care for their families in any and every possible way. That is their job.

“But in the NICU, that doesn’t feel like it amounts to much. I visited our children’s beds every morning before driving an hour and half to work; then turned around and drove back to see them late at night. Afterwards, I tried to spend a few moments of relative peace with their mother, before collapsing exhausted- only to repeat it all again tomorrow.”

From Michael, mignolan (editor of Miracles, MOD's e-newletter), in Parent to Parent:

"It some ways, the anguish of Will's early birth is more vivid to me now than it was as it was happening. When he was so new and so sudden, and as a baby so unlike what we had expected, he was in some way abstract, and so was the pain. As a nearly-three-year-old, I now know him, and I have an understanding of what it is to be a father, and for him to be my son. If I had any sense at the time of how magnificent a little boy he might become I don't know that I could have kept myself together. He's beyond my dreams of who a boy of mine might be."

From HawkeyeDAD, in his blog, “HawkeyeDad Space”.

“One of the highlights of my day is putting him to bed with his big orange blanket that he has to sleep with reading "The Cat in the Hat" for the millionth time, getting a hug and a kiss and knowing I will get to do it again the next day.”

And last but never least, our very own Share Community Host, James SooHoo on fatherhood:

“I was just sitting here wondering when I got so sappy. Yes, I have the Giants/Cowboys game on the tv (as an Eagle die-hard, I'm hoping they both somehow lose)....but I'm not really paying attention. I've gone in to Julien's room at least hundred times just to look at him.

“I used to roll my eyes at parents who said they never loved anyone as much as their children. Honestly, I just thought they were all twits. How silly was I? I'm not sure where that James went...but I don't miss him.”

Happy Father's Day to all the men of Share!

jason spence

Mike and Meek

pote guys

Todd Mall Elliot

Posted by Darcy Milder | Comments: (12) | Permalink

THANKS FOR THE WELCOME!

Jun 03, 2007 07:05pm (EST)

Share Community Coordinator here - reporting for duty!

Thank you all for the warm welcome and kind words. I appreciate the comments. I can't think of a community I adore more; I am really looking forward to serving Share and helping to maintain the kind of warm and supportive atmosphere that was there for me when I first arrived here in 2004.

Techno-geek at your service!

With warm sincerity,
Darcy

Posted by Darcy Milder | Comments: (5) | Permalink

DARCY: THANKS SO MUCH

May 31, 2007 01:43pm (EST)

You are such a wonderful person, and the March of Dimes is so very fortunate to have you as part of our family. Best wishes in this new endeavor.

Pam Education & Health Promotion Dept. March of Dimes

Posted by moderator | Comments: (0) | Permalink

ANNOUNCING OUR NEW SHARE YOUR STORY COMMUNITY COORDINATOR!

May 31, 2007 12:40pm (EST)

I’m thrilled to announce that Darcy Milder has accepted the March of Dimes staff position of Share Your Story Community Coordinator, reporting to me.

Before being hired for her new position, Darcy was a shining star as a March of Dimes volunteer. She started as a team captain for “Logan’s Angels” at the Quad Cities WalkAmerica in 2003. She then became their Ambassador Family in 2004. She was a Mission Speaker at numerous March of Dimes events in Iowa, such as Team Captain Kick-Offs, WalkAmerica, Chef’s Auction, a Baby Shower Luncheon, and the FCCLA state conference. She served as the Family Teams Chair for the Central Division as well as Chair of the State Chapter, before becoming the Iowa Mission Volunteer Liaison. She also served on the National Mission Volunteers Advisory Council.

Last year Darcy was approached by her chapter to write a Prematurity Curriculum to be utilized in the schools as an educational component to supplement human reproduction. As it turns out, Darcy had written curriculum before as a professor. Ideas were shot to Darcy and she took them and ran a full-out sprint! She included real life stories of preemies, and created interactive stations so the students would know what it was like to lug around an oxygen tank, figure out family finances with the costs of Prematurity, and what it might be like to be visually-impaired.

Darcy, of course, has also been a leading Share Your Story participant. Share Your Story and Darcy Milder have been intertwined from the beginning. As a stay at home mom who home-schools her three boys, she has found the online community to be an amazing support system where she has found a community, warm and compassionate, just like her. Darcy has posted over 7000 times, each touching a family in crisis, providing them a wealth of support and comfort.

Darcy’s participation has been multi-faceted, and always exceeds expectations when called upon. She has worked really hard to find ways for others to volunteer to help manage and maintain the quality of the site. In addition, she has often been asked to speak to March of Dimes staff around the country on why and how to promote the site in their communities.

In her new role, she will be a tremendous asset to me in providing technical assistance to you all as well as keeping the site on the cutting edge of community technology. She will assist me in marketing the site and will help provide logistical support for the annual Share Reunion held in October.

Please join me in welcoming Darcy!

- James

Posted by James SooHoo | Comments: (35) | Permalink

ASK OPRAH TO DO A SHOW ON PREMATURITY!

May 16, 2007 02:28pm (EST)

Hi everyone,

Just wanted to let you know that we have a proposal in to the producers of Oprah on doing a show on premature birth as a silent crisis. Can you imagine how much exposure on Oprah would do to raise awareness of prematurity in the United States?

Help us convince them that is indeed a show worth doing! Please write in at: Oprah show ideas.

Each email submission should be their own personal story of premature birth and suggest that they include a March of Dimes spokesperson because of our Prematurity Campaign.

Thanks much!

James Share Your Story Community Host

Posted by James SooHoo | Comments: (7) | Permalink

VOTE FOR SHARE!

Apr 11, 2007 10:06am (EST)

Hi everyone,

I’m pleased to announce that Share Your Story is up for a Net2Innovation Award. The project is now up for vote…so please cast yours! The Deadline is this Saturday!

You can do so by going to:

Projects/Vote

you’ll need to register on the site (it takes just two minutes). Then, you’ll need to pick at least 5 different projects. Make sure that SHARE is one of them!

You can find the full list at:

proposals

As an fyi…here is the link to our proposal: Share Your Story

Thanks much!

James

Posted by James SooHoo | Comments: (1) | Permalink

NETSQUARED

Apr 09, 2007 08:05am (EST)

Posted by James SooHoo | Comments: (0) | Permalink

WHERE IN THE WORLD ARE SHARE PARTICIPANTS?

Feb 17, 2007 11:24am (EST)

Here's a fun graphic. The below map shows where SHARE participants are located. Each dot represents someone who has logged in at least 50 times. While 91% of our users are located in the United States, SHARE reaches audiences around the world. Waving hello to our friends in Brazil!

Posted by James SooHoo | Comments: (10) | Permalink

THE ECONOMIC COST OF BIRTH DEFECTS IN THE UNITED STATES

Feb 09, 2007 11:37am (EST)

I came across this the other day with quotes from one of my colleagues...just thought I would share:

Birth Defects Cost U.S. Billions

By Serena Gordon HealthDay Reporter

FRIDAY, Jan. 26 (HealthDay News) -- The initial economic cost of having a baby born with a birth defect is enormous, ranging from several thousand dollars to several hundred thousand dollars per child.

So concludes a study published in the Jan. 19 issue of the U.S. Centers for Disease Control and Prevention's Morbidity and Mortality Weekly Report.

Researchers found that cardiovascular, gastrointestinal and musculoskeletal defects quickly run up the highest hospitalization bills.

"This study is a very important slice of the pie in terms of how expensive birth defects are," said Dr. Nancy Green, medical director of the March of Dimes. "It's important in terms of helping to define some of the costs associated with birth defects, and as a way to remind the public that birth defects are fairly common and are very expensive in terms of dollars -- and of heartache." As many as one in 33 babies born in the United States has a birth defect, according to the Agency for Healthcare Research and Quality (AHRQ). Birth defects are believed to generally occur during the first three months of pregnancy, often before a woman is even aware she is expecting.

The exact cause of many birth defects is unknown, but Green said they are presumed to occur as a complex interaction between the genetic predisposition of the fetus and "some sort of broadly defined environmental impact."

These defects can vary significantly in their severity. Some are mild. Others can cause the death of the baby soon after birth. The current study included 2003 hospital data on 35 selected birth defects. The birth defects were chosen based on whether or not the condition could be diagnosed at birth and if it was a permanent condition without intervention.

The conditions responsible for the most in-hospital deaths during the study period were diaphragmatic hernia (protrusion of the stomach through the diaphragm), renal agenesis (absence of one or both kidneys), trisomy 18 (a serious birth defect in which there are three copies of chromosome 18), and several congenital heart defects.

Costs varied widely, depending on the birth defect. Overall, the most expensive birth defect was an obstructive genitourinary defect, which resulted in almost $365 million in hospital charges. This defect, which is a narrowing or an absence of certain urinary tract structures, is fairly common. About 13,000 babies were born with it, according to the study. Individually, the cost to fix this problem is about $28,000.

Surgeries to correct defects of the heart were among the most costly per procedure, often running to more than $100,000 per child.

In all, birth defects lead to more than $2.5 billion a year in hospital costs alone, according to the study.

"It's interesting that someone took a broad look at the costs," said Dr. Dan Polk, a neonatologist with Children's Memorial Hospital in Chicago. But, he said, one problem with this information is that there's not much you can do to change these figures unless more money is invested in research to discover what causes these defects in the first place.

Until doctors understand the origins of specific birth defects, it's difficult to suggest prevention strategies, other than get early prenatal care and follow your doctor's advice for a healthy pregnancy.

"OK, so we know these defects cost money, but how do you prevent the spending of that money? Nothing's known on how to prevent these birth defects. They're there, and it is what it is. It's not a lifestyle issue or a mother's issue," said Polk. "Research defining the underlying causes might allow us to prevent, rather than try to treat, these birth defects."

Green agreed that more research is critical and pointed out that research has already led to the elimination of some birth defects. "In the 1960s, a lot of pregnant women got rubella. If that's acquired for the first time by a pregnant mom in the last trimester, it can cause congenital rubella syndrome. Thanks to standard routine vaccinations, we don't see that anymore," said Green.

Both Green and Polk recommended that all women of childbearing age make sure they get 400 micrograms of folic acid daily, because a deficiency in folic acid can lead to neural tube defects such as spina bifida in babies.

Green also suggested that if you can possibly plan your childbearing to occur before age 35, you can lower your risk of having a child with a birth defect.

"As a woman ages, there's a greater chance of having a pregnancy affected by chromosomal abnormalities," she said. Green also pointed out that the costs of birth defects hardly end with initial hospitalizations. The AHRQ recently released a report on the cost of birth defects and found that the average age of people being treated for birth defects was 17 years old, she said. "While many of these birth defects are treated in infancy, the impact of birth defects can be long-lasting and may extend into adulthood," Green noted.

To connect with parents of birth defects on the site, please join our discussion at Birth Defects, Diseases and Disorders.

.

Posted by James SooHoo | Comments: (3) | Permalink

A TRIP TO HOLLAND

Feb 02, 2007 08:37am (EST)

A friend of mine who had two children both born with birth defects and both of whom, sadly, passed away sent this to me years ago. I remember how much it moved me then...so in case you've never read it before...

TO HOLLAND by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation the day finally arrives. You pack your bags and off you go. The stewardess comes in and says, "Welcome to Holland".

"Holland?" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Posted by James SooHoo | Comments: (5) | Permalink