Their story began when the two met in a drag queen karaoke bar, progressed when they wed, and grew into chapters at the birth of their first daughter Maddie. She was born four years ago, more than 11 weeks premature, ending a very rocky pregnancy and beginning an extensive acquaintance with their neonatal intensive care unit. As their first child, she was the one that introduced Mike and Heather not only to the life-changing, soul-expanding, heart-wrenching experience that is parenthood, but also to the difficulties of raising a child born with immature lungs, and the gut-deep grief of loss when she died at 16 months of age from a severe respiratory infection.

While Heather had blogged before, her involvement in social media deepened greatly as she chronicled the travails of their experience and began following the blogs of other parents of prematurely-born children. What had once been something she considered a “time-waster” developed into a means of getting the word out about organizations who help parents like themselves, and work to prevent more premature births, namely the March of Dimes. It was that organization that first congratulated Mike and Heather on Maddie’s birth, when everyone else was afraid to for fear of her death, and who helped educate them along the way.

And it was that spirit of celebration and education that pushed Heather and Mike to eventually start their own nonprofit, Friends of Maddie. Their work is to help other parents who’ve been thrust unwittingly into NICU life by 1) providing NICU Family Support Packs to the nursing staff of Level III NICU’s across the country which will be distributed, at their discretion, to families of children being admitted to the NICU for long term care, 2) assisting in finding temporary lodging for families who live beyond commuting distance of the NICU that is treating their child, and 3) creating a network of former NICU families who are willing to provide counseling and more to families currently in the NICU.

Each purchase of the You Are The One song goes towards Friends of Maddie’s three-pronged mission. While that song initially expressed Mike’s love for Heather, it “took on a whole new meaning after Maddie passed away,” says Heather. Each time someone buys and downloads the song, it is a continuation of the Spohr story, one that developed over an unforeseen twist but which grows, even as Heather and Mike raise their second daughter Annie, directly along a positive plotline.

The song is available for purchase through iTunes, Amazon, Spotify, Medianet, eMusic, Zune, Rhapsody,  I Heart Radio,
VerveLife, Nokia, and Napster. Read this post to get specific links to the service of your choice. The song is 99 cents and 100% of the proceeds go to Friends of Maddie.

How has music gotten you through a difficult time? What songs do you like to listen to in order to lift your spirits?

Most simply, the Mommies Network is a community for moms. It is a national online free 24/7 forum where moms can discuss anything from child-rearing to best family-friendly restaurants. It started with just two moms, Heather and her friend Heidi, who wanted a way to meet other moms without subscribing to expensive mom-n-me activities or committing to strict meeting schedules. As Heather says, “we just wanted to find some other women in similar situations who wanted to chat and get together every now and then. It started out kind of selfishly-motivated.” The idea was a good one, though, because over the course of the next few years, a network of more than 90 local groups sprang up across the country. In 2005, an actual 501(c)(3) non-profit organization was formed to support those chapters and their 25,000 members.

Those chapters enrich the Mommies Network community experience by providing opportunities once-a-month for members to get together in real life and develop friendships. As the Mommies Network website says: “We are a reflection of mothers… in the real world. Our members work full time, stay home full time, work part time, represent many races, adopted children, were adopted themselves, are newcomers to the area, are natives to the area, have twins, are happy with one, are single parents, are just beginning their journey as parents and have watched their kids graduate.”

They also provide opportunities for members to grow charitably, not just socially. “We are parents in and for the community. We help out our neighbors as much as ourselves through organized fundraisers and other charity events — specifically those focused on providing for parents and their children. Once our communities are a year old, they organize at least two charitable events or drives each year, focused on helping moms, dads and/or kids. Each community also assists members in finding local charitable opportunities via our Volunteer Match Program. It’s a great way for everyone to give back to their community while having fun and making a difference in the lives of other moms, dads and kids.” Some chapters host “baby showers” where the gifts are donated to a local YMCA; some organize walks for various causes. It’s up to them. They have become powerful forces for good in their own rights in their own communities.

Heather says that the growth of the Mommies Network, while helping herself and many other women, has not been without its challenges. Some member moms have tried to smart smaller support groups within the network, for moms in particular circumstances (e.g., stay-at-home, etc.) While the need to identify strongly with moms that are most similar to oneself is understandable, says Heather, the need for members to focus on their most common elements— their love for their children and their desire to improve the world in which they raise them—is greater.

As a mom, how do you stay connected with other moms? What support groups and communities have you joined?

Visit Hands On Network to learn more and to find volunteer opportunities in your community.