babybloomr

OK, if you’ll hang in there with me, I wanted to add one last post about the loss of little Madeline Spohr. I just read this and it made my whole day, and I wanted to share it with you.

Before I started this Babybloomr blog, if you would have told me that you can have real friendships and truly care about people you have literally never laid eyes on or spoken to on the phone, I would have been skeptical. (I also would have thought that maybe lonely pathetic people with 21 cats and no life might feel that way, but not the rest of us– I would have been too polite to say that out loud, but that’s what I would have thought!) But now I know better. At the risk of sounding smarmy, I really consider you guys, my readers, my friends. You fit all the criteria– we share our feelings with each other, we ‘talk’ about things that matter to us, we make each other laugh and when one of us is going through something hard, we care.

The death of Maddie Spohr caused a lot of us to reevaluate these type of internet friendships because of our gut-punch reaction to the fate of a child and a family that again, we didn’t actually ‘know.’ Two bloggers in Las Vegas, Kristin and Kellee were inspired to act on their feelings of sadness and compassion, and I am reprinting Kristin’s blog post that describes what they came up with. It is an eloquent, practical and brilliant response to that universal thought in a situation like this: “I wish there was something I could do…”

“We just aren’t supposed to outlive our babies,” is what my mother said when I told her about Maddie’s passing away. She isn’t a reader and only knows Maddie through my chatting and occasional photo sharing – but when I told her this baby had passed from the world, we both sat and shed tears as though my own Miles had been taken from us.

I’m one of the oft-referred-to internet friends Heather has accumulated during the last couple of years. When I found Heather’s blog, I felt I had truly found a mother to whom I could relate. It isn’t that I had experienced all the same things she went through with Maddie, I hadn’t – instead I found someone my age, who struggled with the same bits and pieces of motherhood I did, who had the bravery and presence to bring her voice to the people to share her experience. In short, I found, I read, I fell in love, and the Spohrs became a part of my daily routine.

Last Monday when Maddie was sick, I was worried. I told my husband, “Maddie’s at the hospital with Heather”, and just like I were talking about someone who we ‘really’ knew, his face fell. I went to bed after reading Heather’s tweet about Maddie being intubated, and though I’m not a religious woman, I prayed myself to sleep that night.

In the morning, he came to me and gently asked if I’d been online yet. I shook my head. I started to  tremble. When the words, when the news came out of his mouth, my entire body went numb, and I spent the rest of that day like many of you, glued to this keyboard, racked with grief, frequently grabbing my husband and son and confusing them with outbursts of tears and kisses and love.

My best friend is a Spohr fan as well. Since we live in Las Vegas, we initially planned to make the trip to Hollywood to pay our respects in person. As the days passed and logistics played out, however, it became clear that this would not be the best way for us to help Heather & Mike, which really is all we can think to do in the wake of this horrible loss. We racked our brains for days, and finally, a plan was born.

Yesterday, on April 14, we dressed in our purple. We carried Heather & Mike & Maddie in our hearts. The thing is, that wasn’t enough; it didn’t feel like a fitting tribute to this incredible person we’ been touched by. So I dialed up the local NICU and asked a pretty basic question: If you had a fairy godmother coming by this afternoon, what would she bring you? Let me tell you, these poor people were perplexed. It was clear no one had ever asked this kind of question.

Luckily, my bestie has a memory gift, and she recalled that Heather herself had recently written a blog post called NICU FAQ, and despite the fact that the Spohr site was sort of like an impenetrable fortress from all the traffic, we managed to call up the post. Suddenly, the plan was perfect and complete: Heather herself would guide us. We studied her advice and got to work.

A couple of hours and several retail outlets later, we were in business: not only had we managed to get a lovely dinner and dessert spread together for the NICU nurses, who Heather reminded us make the real magic, but we also had assembled ten purple gift bags containing all the items Heather had listed on her NICU wish list – I think she called them Parent Survival Kits. We hit almost every single item, and I even added some Pez.

When we got to the hospital, we looked like a couple of women on the way to a kids birthday party, loaded down with overflowing gift bags and long sub sandwiches. You’d have laughed at us trying to work the door into the NICU. We didn’t want to bother anyone, of course, we just wanted to help, but still, the scene was comedy gold there for a minute.

Finally, help arrived, and we were greeted by the NICU Charge Nurse Maryann and Supervisor Scott, who again seemed a little bewildered by our strange delivery. Not wanting to announce our purpose widely, we quietly explained about Madeline, and said simply this was the best thing we could think to do to pay her goodness forward. The looks on their faces are things I’ll remember for many years to come. I wish sudden goodness and kindness were not so rare in this world of ours.

I noticed many things in the NICU, though I tried to keep my back to the families and respect their privacy. I noticed a man standing with his face to the wall, crying silently. I noticed a woman in a wheelchair whose long dark hair fell over her face as she leaned toward an isolette hidden mostly by a curtain. I saw these glimpses and I felt it again in my very DNA: but for the grace of God, or the Universe, or whatever, this could have been me.

Now, we don’t know who got those bags, although the staff assured us they’d be given to the families with the most need for help or encouragement. It doesn’t matter. The way I see it, what we did was just add a few – twenty or so – more ripples to the wonderful ripple effect of goodness Maddie had upon the world. And you know what? There will be more ripples. Because of Maddie, we’re changed – we’ll be doing this again, and whenever we do, Maddie’s spirit will be there. If there’s any comfort to be found, I think that’s where it is.

Heather, Mike, Maddie’s Grandparents, Aunties, Uncles, Boyfriends & Friends… I am different because your Madline was in the world, and because Heather & Mike shared the gift of her with the rest of us. May peace be with you all in this time of sadness.

PS: Here is my BFF’s tribute for Maddie, her version of our day together:

http://notsosmallthings.blogspot.com/2009/04/maddie-moo.html

Update 4.15.09 10:38pm PT: I am shocked people are reading, and the things you are saying are blowing me away. Please. Please do go and do this yourselves. If you need guidance, as we did, here is Heather’s post: http://www.remembermaddie.com/index.php/2009/03/26/nicu-eff-ay-que/

Please remember the Spohr family, they are burying their beloved daughter today.
The funeral is this afternoon at 2:30 p.m. PST in Los Angeles.