Family Turns Grief Into Action, Fundraising for March of Dimes
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.
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.
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.
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