Saturday, May 21, 2011

Mommies Funding Research

Have you heard the phrase “it’s just the internet” or “It’s not like it’s real people” or “what do I care about someone that lives in my computer.” I can only shake my head at this comment. Are you a real person? Do you live in a computer? Where do you think the other mesages come from? In case you’re stumped, let me help you out. It’s a real person, they don’t live in the computer. They have family and friends, they have bills and responsibilities. They have feelings. Those feelings can be hurt. More importantly, those people can be your real friends too.

You may have heard me talk about Babycenter. Maybe more than once! Babycenter is a website owned by Johnson and Johnson. I stumbled on them in the early days of our surprise pregnancy. They have tons of information not only about pregnancy, but about babies as well. But for me, the appeal to BabyCenter is the Community (BBC.) Thousands of people gathering together to discuss everything from trying to concieve, sharing throughout pregnancy and into parenting, and beyond that as well. If there is a topic you like to discuss, BBC has a group that discusses it.

I  found several groups that fit, and found a “home” in the group called July 07. As you may guess, it was for women that were due in July of 2007. Finn’s first due date was actually 7/27, before it was moved to 7/2. By the time we found out we would most likely have a June baby, I had made friends with so many of the women on the board, I didn’t want to start over with June.

We shared a lot on that board. Our hopes, fears, parenting questions, pictures of our bellies, concerns about our doctors, fears of labor for us first-timers. We fought, sometimes bitterly. I’ll jump ahead and let you know that some of those that fought constantly are good friends now. Then we started having babies. The first one that I remember was Kennedy. She was born in mid-March. We checked the boards for updates often, and we all wept when Kennedy’s mom let us know that there would be no more updates. Kennedy is still thought of often, and I hope her momma knows that she’s remembered. There were more losses and then we started to get more survival stories. And in mid-June, I joined the list of happy stories.

By late July we still had a few babies that hadn’t arrived and us early ones were on our six-week check-ups and getting ready to go back to work. One of our mommies, Monica, came back from her check-up with devastating news. Her adorable son, Sawyer, was having issues. The doctor wanted to do more tests, and in late August,  July 07 learned about SMA, Spinal Muscular Atropy. It’s a terminal diagnosis. Information searches checked everywhere and information and love flowed to Monica and Sawyer. We all watched helplessly as Sawyer struggled and we wept with Monica in October, when the SMA became too much.

A year later, Claire recieved news that her little girl, Hannah, also had a serious condition. Hannah had MPS, mucopolysaccharidosis. There is no cure, although there were treatments. Claire and Hannah spent the next six months in the hospital. Once again July 07 rallied with emotional support and even some gift cards to make meals easier for them while they were so far from home. Christmas was sober for July 07 and heartbreaking for Hannah’s family and shortly after Christmas, Hannah’s family made the difficult choice to stop fighting.

It left all of us aching to do something. Something more than the cards,flowers, people attending her memorial service. More than wearing ribbons and remembering Hannah and Sawyer. We loved those babies and their momma’s and we were unable to sit and do nothing.

So we are. We’re doing something every single year. We call it “Mommies Funding Research.” Here’s our page: http://mommiesfundingresearch.blogspot.com  Every year from June 29th – July 7th (Sawyer and Hannah’s birthdates) we hold an auction. We donate items and choose which disease the proceeds go to. Pictures are put up and bids are placed. When it’s over on July 7th, the highest bidders send their donations directly to the linked organization for their item.  When we know that it’s been recieved there, we send out the item to the winning bidder. It’s a simple process but we’re proud that we’re doing something. We want to do more, we want more people donating and more people bidding. Please check out our blog, and if you can, when the auction starts, bid on an item!

These are not imaginary friends, they do not live in my computer and they have suffered the worst pain a parent can feel. When you start to think that the internet is “just the internet", think about Hannah and Claire, Sawyer and Monica, we do.