Hot on HuffPost Parents:
Rev. Susan Baller-Shepard: Wild And Precious Lives: Godspeed…
27 Fantastic Books For Kids Of All Ages
Family Turns Grief Into Action, Fundraising for March of Dimes
Filed under: Amazing Parents, Health, Celeb News & Interviews
The Spohr family. Credit: Heather Spohr
Maddie's passing captured the emotions of thousands of parents who had followed the Spohr family adventures on their popular blog, "The Spohrs Are Multiplying," written by Heather Spohr and her husband, Mike.
Maddie and her parents had already won the hearts of many devoted readers more than 18 months prior to the toddler's death, when Heather detailed her experiences detailing her high-risk pregnancy with Maddie and the baby's subsequent premature birth.
Maddie had an extended stay in the neonatal intensive care unit (NICU), and struggled with respiratory issues during most of her short life.
Devastated by the loss of their daughter, Heather and Mike continued to write, chronicling their family's story as they journeyed through grief. Her candid and emotional writing has given a voice to families who have suffered the devastation of losing a child.
Named "Best Mommy Blogger of 2009" by thebump.com, these days the writer and photographer shares the joys of raising her second dauhgter, 14-month-old Annabel, or "Annie," and her escapades as a toddler.
But she also wants Maddie's story to live on.
Strong believers that stories heal and inspire others, Heather, 31, and Mike, 35, also command one of the top fundraising family teams for the March of Dimes, a cause very close to their hearts.
Last year, Heather spoke before more than 10,000 people at the March for Babies event in Los Angeles after her family team raised more than $100,000. The Los Angeles couple also founded "Friends of Maddie," a non-profit that supports the families of critically ill babies in NICUs.
ParentDish caught up with Heather recently as the Spohrs prepare again this year to join more than 7 million people across the country in the March of Dimes, March for Babies "Walking together for stronger, healthier babies," events.
The events will take place in more than 900 communities, with most held the weekend of April 30 to May 1, says Peggy Kelly, media relations coordinator for March of Dimes. The goal this year is to raise over $106 million to help fund research and community-based programs to help moms have stronger, healthier babies.
On Saturday, April 30, Annie will lead the Spohr team of more than 50 walkers from her stroller in the Los Angeles event. The family has set a goal of raising $10,000 this year, weeks after the April 7 second anniversary of Maddie's passing, says Spohr.
Maddie Spohr. Credit: Heather Spohr
ParentDish: Why did you create "Friends of Maddie" and get so active in supporting March of Dimes?
Heather Spohr: When Maddie passed away, our world was turned upside down. But because of the blog and the Internet, people rallied to support us in our grief. Every time Maddie got sick or was in the hospital, moms of other premature babies just like me would reach out to offer inspiration and help. One of my best friends I met on the Internet. She has twin daughters who were born 10 weeks prematurely.
I wanted to help bring this powerful word-of-mouth community to help other families who are going through what we did. Once when we were in the hospital, we got a little picture frame from the March of Dimes and I realized that I could harness the Internet community to be an advocate not just for my daughter but for all kids, and the March of Dimes and our charitable organization seemed like the best ways to do that.
PD: You've shared your high-risk pregnancies and extended neonatal intensive-care experiences, then losing a child and birthing a new baby in a very public way on the Internet. How has that transformed you?
HS: When Maddie passed, people on the Internet went out of their way to support us in our grief, with words and sharing very personal stories of how they had lost a child, too. It is very healing and continues to be. We knew we were never alone. I just kept blogging. In some ways it was selfish of me because I got more from these people then I felt I was giving. But I would have gone crazy and felt so isolated without them. You don't know what to do, but this got me through some of the really rough patches. Writing about your life and sharing can be very comforting.
PD: Lots of moms are writing blogs, what's the key to growing such an engaged following?
HS: I think I was blogging before I even knew what blogging was. In 2002, I was young and stupid and just kind of started chronicling my life and our long-distance dating relationship. It kind of lapsed after we got married, but then the whole mom blog thing started exploding on the Internet.
I started this blog when I was pregnant with Maddie because it was a rough and rocky pregnancy and I wanted to keep our friends informed. Also, I was on hospital bed rest so I blogged to fight the boredom. Maddie was born premature, so I started posting updates and also comments on the blogs I was reading to try to learn more about caring for her. It just happened and I was getting 60,000 page views a month every month writing about having a premature child. There were a lot of other moms who were going through this and the Internet gave us a way to support each other and to help each other learn more about what to do and expect.
Heather and Maddie. Credit: Heather Spohr
HS: Maddie was seriously the happiest little girl you could ever meet. Our life together was full of adventure. She completed us. I blogged about Maddie's triumphs. I hope now that I can share the joy she brought and continues to bring in a way that will validate and give back something, but also inspire other families and let them know they are not alone.
PD: What do you want your writing to say to other parents?
HS: Really it is simple. Enjoy every minute. Annabel is a lot like me, she can be very stubborn and I could get all frustrated. But I focus instead on her sweet smile because I know life can be unpredictable. There are lots of hugs and kisses in our home and telling each other how much we love each other and appreciate each other. Maddie knew we loved her and we got so much love from her.
For more information and to register for a March of Dimes walk near you go to MarchofBabies.org.
Want to get the latest ParentDish news and advice? Sign up for our newsletter!
Your<span>Voice</span>
Ask Us Anything About Parenting
Recently Asked
- HICKMAN, DERIAN DOUGLAS PLAINTIFF PRO SE & INTERNAL REVENUE SERVICE Defendant Service: Summons Issued Method: Service Issued
- Here in dc since dec, 6 2006 retired FED BOARD GOV,inventor ,writter, FORMER GOVERNOR (founder of the republic of )DERIAN DOUGLAS HICKMAN
- What is the TFI ORGANIZATION IN KS?










ReaderComments (Page 1 of 3)
4-26-2011 @ 4:28PM
Angie [A Whole Lot of Nothing] said...You're a rockstar, Heather!
Reply
4-26-2011 @ 4:31PM
Rebecca said...Bravery. Strength. Courage. Love.
Amazing.
Reply
4-26-2011 @ 4:35PM
Heather said...Thank you so much for letting me shine a light on the March of Dimes!!
Reply
4-26-2011 @ 4:37PM
Brittany said...I am in awe of this family. Such amazing parents to such amazing daughters. So much love to them.
Reply
4-29-2011 @ 6:38AM
Jen said...I'm so honored to call Mike and Heather friends. So incredibly in awe of them.
Reply
4-29-2011 @ 7:30AM
bill said...WHY CANT BAD PPEOPLE IN JAIL DIE INSTEAD, OF LITTLE PEOPLE LIKE HER INSTEAD!!!! GOD SHOULD MAKE IT RIGHT!!!!!!!
Reply
4-29-2011 @ 9:36AM
anna said...He takes the good to help in heaven !!!!!!!!!!!!!!!!!!!
4-29-2011 @ 9:19AM
Rene said...He is going to make it right sooner then you think. Death and dying, sorrow and crying will be no more. Jehovah will be making all things new with an end to this wicked system of things.
4-29-2011 @ 9:30AM
anna said...you are a amazing WOMAN my hats off to you !!!!!!!!!!!!!!!!! What a beautiful girl your Maddie was here on earth and now a beautiful girl in the heavens above I look forward to meeting here when I go home as well...
Reply
4-29-2011 @ 8:37AM
maud said...Wow, have you ever seen anything more beautiful than that baby girls eyes? What an amazing soul, and equally beautiful things have and will come about from her short life. I lost my daughter three months ago just short of her 21st birthday. She was born with disabilities... what a deep wound that is. I applaud Maddie's parents for the work they are doing in her honor. What a great legacy. Keep up the good work Heather!
Reply
4-29-2011 @ 9:08AM
amksinny said...My daughter had Cystic Fibrosis, I asked the March of Dimes for help. They didn't help.
Reply
4-29-2011 @ 9:15AM
Mike said...I would like to know why they did not help. I give money to charities and I am hearing more and more stories of how they misuse the money by paying high salaries to employees or refusing to help cerain people.
4-29-2011 @ 9:32AM
addy692002 said...@Mike I think I'd like to know that, too... I've heard such stories as well and logically, charities also pay for the "extras" they give out (eco bags, tshirts, bracelets, etc. with their logo - mostly bought by donators but occasionally given to people after donation as well) as well as their own advertising, financial dept., etc. It makes me wonder how much of the money donated actually goes to the cause it's for - I honestly can't imagine it being more than 50% unless a LOT of people are donating a good amount (which I'm sure is ideal.) Personally I feel the only ones we can really be sure of are ones that ask for supplies (clothing, blankets, food, petcare supplies, etc.) or volunteer time/manual labour.
4-29-2011 @ 10:14AM
Louis said...I have never heard any complaints about the March of Dimes. I often read a newsletter called, "The Nonprofiteer" which features a category entitled 'Charity Scandals". People report some very disheartening experiences about how the donations they gave wound up lining the pockets of the people running the organizations. This combined with the media's exposure of many charities ripping people off and paying huge salaries to its managerial staff can really make you think twice about where your donation goods and dollars are going. However, I also do not want to use this as an excuse not to give something back to society or to help those less fortunate. So, on a day to day basis I prefer volunteering my time to soup kitchens, donating food to local food shelters, contributing to volunteer emergency units, or helping people in my own community directly when I know they are hurting. When it comes to nationally known charities, I am comfortable mainly with up front causes like the St. Jude Children's Hospital, the Make-a-Wish Foundation, and sometimes the Red Cross. I NEVER entertain any donation requests that come in by phone or the Internet. Be careful! There are a lot of parasites out there who would put their own mother or child in harm's way for a buck!
4-29-2011 @ 9:23AM
addy692002 said...I know I'm going to look like a troll here but I can't help but ask myself how on earth a mother of a high risk premature newborn even had the -time- to keep up with a regular blog enough to draw in that kind of audience. I'm genuinely NOT trying to be mean here but I can't help but wonder how much time she was really spending with her baby compared to how much time was spent on the computer blogging and communicating with readers. I really hate saying it like that but the thought crossed my mind and it is what it is.
I do feel horribly sorry for the family and parents, however, and it's great that they're getting more involved with March of Dimes and bringing their readers with them.
Reply
4-29-2011 @ 9:38AM
anna said...omg your right you look like an real jack butt to me Did you not read her writting on how when she was in bed rest and all Do you think it takes forever to write maybe you are a bit slow with thoughts But many it just flows on the paper may god be with you I think you really need him in your life
4-29-2011 @ 10:04AM
Sandi said...How after the baby is alseep and you can not sleep yourself, that you must find some outlet..like others who know your pain. Did you think of all those moments in the hospital room where the baby is in the incubator and you want to be near, but need a break? The opposite is true here..she NEVER let this child off her mind even when she has a moment to herself. Obviously the OP hassn't had or known a person with a sick child. Maggie was certainly a beautiful child and her memory still is. ( Mom of 2 sick babies. One who is with me today as an adult, and a baby angel. )
4-29-2011 @ 12:32PM
karen said...You're not a troll, just someone trying to wrap your head around something you have no point of reference to. My doctors son was 3 when a brain tumor was discovered...the worst kind, one that is almost always a death sentence. They took him to Houston for proton therapy. His wife & him took turns, never leaving his side as they also cared for his 5yr old sister. To keep friends & family updated they used a Caringbridge site. This turned out to be mom's "therapy", & kept her from going insane. While she sat in the hospital in Houston (& then in Milwaukee for chemo), while her baby slept & sleep alluded her, she poured out her heart, sharing her fears, frustrations, helplessness & moments of joy, sorrow & love. Her posts never failed to make those reading cry, laugh, & cry again. These posts were the most beautiful love letters a mother could ever give a child. Books she sought out to help her thru this only depressed her, pointing out the horrors rather than being inspirational & letting her know she wasn't alone. Friends & family encouraged her to write that book that would give others some comfort. So, she sat at her Leo's bedside with her laptop & typed away between his "why do we have to be her mom?", "don't let them hurt me more", "I want to go home now", & her catching his puke, calming him, having her heart ripped out bit by bit as she watched the horror that was now part of her little boys life. Her own mother, an editor, was her editor. It gave her something she had control of and way to get it out instead of falling apart. Her book "Leo the Lion" was published b4 he was found cancer free at his 1st post treatment scan. All profits from her book go to childrens cancer reasearch. She is involved with raising money for Saint Balderick's (child cancer research) & feels she owes it to her son & other children to fight to find a cure so other parents won't have to go through what they did, and no child will have to go through what Leo did. If anyone is interested you can find the book on Amazon.
4-30-2011 @ 12:43AM
Patti said...Yes I agree, sometimes moms really need the support of others online. I believe the person who posted this can't possibly be a parent. Do not judge this family based on this little thing. There are several factors here: 1. Sometimes a mom's only outlet IS online (many of us don't have neighbors we can share a coffee with while the little ones play) and it's a lifeline to the outside world when you're at home. 2. Babies sleep at odd hours and are awake at odd hours.The internet is of course 24/7. 3. Writing is very cathartic. Imagine having a child with very high needs who needs you night and day, even more so than most babies (and they ALL require a lot, believe me). Moms and dads need SOME outlet for all the emotions they are feeling, or they might snap. You just can't know if you haven't walked in someone's shoes.
4-29-2011 @ 9:52AM
Patricia said...Heather,
Both of your baby girls are beautiful. They are blessed to have you as their mother.
Reply