Purple for Maddie and Love for Thalon: the Blogging Community Comes Together

9 years ago

"So shines a good deed in a weary world," Shakespeare wrote in The Merchant of Venice.  Gene Wilder repeated it in Charlie and the Chocolate Factory. The line jumped out at me when I watched it for the millionth time on Sunday, reminding me of the community of parent bloggers, friends and allies who reached out this week to support two families who suffered the unthinkable loss of their babies.

The funeral of Maddie Spohr, 17-month old daughter of Heather and Mike Spohr of The Spohrs Are Multiplying and The Newborn Identity, is today in California. Thalon, the nearly 4 month old son of Shana of Gorillabuns, died this weekend.

I honestly do not know where to begin to sum up the online and in some cases very much in-person reaction from thousands of bloggers, because I know I can't, but I feel it bears mentioning. There is so much - SO MUCH - out there, a tremendous outpouring from people all over the Internet who care about these children and the people who have lost them that it's struck me silent. And while my heart and brain are full, I've been doing basically everything I can all of yesterday and today to avoid writing about the deaths of two small children, even though it was the only thing that seemed important enough to write about this week. I've watched post after post flow from the fingers of people all over this continent (and likely the world, if you've seen posts from beyond North American borders please link them in the comments.) And I've been reading them obsessively, amazed at people who can so readily find the words, at people who are responding to these losses with so much generosity and kindness, who are donating to the March of Dimes in Maddie's memory, who are traveling to California for her funeral to stand with and support her parents, who are turning their avatars and blogs purple in her memory. (Thanks much to Velma for helping me out with mine.)

Last night I ended up stuck on Bejeweled, a horribly addictive game that kills one lobe of your brain with stupidity while it frees the other one up to think about more important things, because I haven't been able to slow my brain down enough to knit this all together in a clean white text box. And after I couldn't do that anymore, I was ready to try to write about it, because even though I know for sure I can't do two baby lives and the immeasurable pain of two families justice, I need to talk about what happens when people all over the world come to care, consider themselves community, and have the technological means combined with the oh-so-human heart and spirit to do something about it. 

I'm going to mostly let these people speak, but first of all, the facts, in case anyone reading missed them: Maddie died on April 8, 2009. Born 11 weeks premature two years ago, she had health issues throughout her life but had been doing well until the infection set in that took her life. Mom Heather and dad Mike wrote about their experiences parenting her, from the difficulties of prematurity and NICU to the everyday joys of watching her grow. Mike was a stay-at-home dad for much of Maddie's life. They are both on Twitter, Heather at @mamaspohr and Mike, @newbornidentity.

Shana's son, Thalon Bruce, died suddenly on Saturday.She shared the news yesterday.

There are countless communities on the Internet, with amorphous boundaries, knit loosely together in a global sense but with some of the tightest human relationships I've ever seen. The parent blogging community has been deconstructed in detail, but when it comes to losses like this, the rate and speed of organizing is remarkable. There's the ability of a stranger like myself, not a parent but certainly with the compassion for the inexplicable loss of a baby, to send a comment or an e-mail, to get sucked into the most beautiful pair of seventeen month-old eyes, and to cry for people I've never met because reading the accounts of their daughter's life are almost too much to bear. And if I feel this way? Who could imagine their grief.

In comments and on their own blogs, people reach out. And as usual anymore, Twitter is a communications hub, so intrinsic to online community building that I fail to engage when someone questions the value. You get it or you don't.

Still - human beings have to hit these keys and make the plans, and that is what has happened in both of these instances. Meghan at a Mom Two Boys is the kind of friend I hope I'd have on my side in a situation like this. She originally announced her loss on behalf of the family, has been instrumental in fundraising efforts, and has a For Maddie hub on her blog with links to (currently) 410 posts submitted by bloggers in her honor. March for Maddie has more, including videos and photos.

Lotus Carroll at Sarcastic Mom also has a page with every conceivable Maddie link, including the 50 teams who will be walking in her honor in the March of Dimes March for Babies in a couple of weeks. Donations to Maddie's March of Dimes page are over $25,000 so far (it's often down due to volume, so a trip to Sarcastic Mom's links are the best bet, I've found.)

The women of Room 704 (or, more recently, Seven-Oh-Spohr) are selling bracelets with the bulk of the proceeds going to the Spohr family. Yvonne of Joy Unexpected went out and bought a Nikon Coolpix camera instead of directly donating. Every ten dollars donated to the family gains donors one chance at the camera. Instamom is doing the same with a Nintendo DSi.

Bloggers including Mrs. Schmitty will be posting a photo of Madeline from this post at 2:30 p.m., PST today to coincide with her service. The For Maddie Flickr pool includes purple balloon launches and people wearing purple.

Shana's friend Sarah at Whoorl set up a Love for Thalon PayPal link, alongside her post about his loss

Thalon passed away yesterday afternoon surrounded by his adoring family.

I would be remiss if I didn’t mention wanting to punch the universe in the mouth right now. Really hard.

Heather B. met Thalon in January.

After the last two weeks I keep shaking my head because babies should never die. It’s not right and it’s the most fucked up thing I have ever heard. And yet it keeps happening and all I want to do is sit here in my pajama pants and wonder why?

None of the above makes any sense. And I don’t even care. I’m just torn up on the inside and questioning how parents do it. How do you spend the rest of your life constantly worrying that in any minute your heart might break into a million pieces?

None of the above makes sense because it shouldn’t. It - the death of a child - shouldn’t happen but it does.

Twitter searches for Maddie and Thalon are updated in real time.

The LA Times ran a story about the online response to Maddie's death. Heather Spohr will speak at her daughter's funeral.

The comments for both of these babies are countless, but this one from Flicka sums up what many feel: 

Saying that I am so sorry seems woefully inadequate right now. My thoughts and prayers are with you and your family, now and in the days ahead. This internet stranger is hugging you from afar.

Kate from SweetSalty left one on this beautiful photo of Maddie:

Everyone's twittering and blogging and remembering and I'm just completely and totally stunned. Had to come here and see her. My god, she was some kind of imp or sprite or otherworldly girl.

I've spent almost two years reconciling the mysteries of what else is out there, having a 6-week-old premature son who is on that other side, and has all those answers. And yet I look at Maddie's gorgeous face and all over again, I can't make sense of it.

Maggie's post at Okay. Fine. Dammit is beautiful. Genius apparently causes blog crashes, because I can't get there now, but it says everything I wanted to but can't find the words. 

Eight hours in the car today and I kept checking Twitter on my phone, and I swear for the first time ever I’m not annoyed by hashtags, I’m seeking them out, the #maddie’s, the #thalon’s, like beacons, and it’s so strange, isn’t it? In times of great confusion and profound tragedy we just want to be among others who are equally impacted, like after Columbine or September 11, and so this is what we do, we head to the chapels and the temples and the public parks and the malls and we shuffle together slowly, as one, taking comfort in the lull of the sound of our communal footsteps and that’s really what the blogosphere has become to me, you know? And everyone was there today, following the hashtags, each tweet and post a gonging of the bell, the Church of Twitter.

Forget about weary. The world ought to really lie down exhausted every time a baby dies, but then if it did it would never get up. It happens all the time, every day, all over the world. But every time, it seems like time ought to stop and remember.In the loss of these children, there is compassion for all children, for all families who lose them. There is not much more to say than that, except for whatever it's worth - which I'm not sure how to quantify but what do you do in situations like this other than things that seem like they might help, like they might have meaning? - I will wear purple today. And if there were a color for Thalon, if one pops up soon, I'll do that too. It's the least I can do for these kids and for their families.

Please feel free to share remembrances, updates and links to posts in the comments.

I write at LaurieWrites. I will walk in the suburban Maryland March for Babies on April 25, in honor of Maddie, who joins the kids with cleft lips and palates who I will always walk for. Please visit my page if you feel so moved, and pitch in for all of these kids. Thanks. This is a particularly meaningful year.

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