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?

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