A brilliant idea

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…”

MADELINE ALICE SPOHR *November 11, 2007 – April 7, 2009*


“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:


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/

16 Responses

  1. Busymom

    That. Is. Brilliant.

  2. LindaB

    Absolutely brilliant! And achingly sweet. I can’t quit crying now.

  3. Barbara M. Lloyd

    Knowing these sweet angels didn’t want any publicity…still, I have to ask: How come the news media are quick to bring us stories about the mean spirited and criminal…but slow to talk about people like those precious ladies who made our hearts smile?

  4. Barbara M. Lloyd

    Oh dear, I just went back and read a couple of your writings, Tori, that I had missed…and the Los Angeles Times wrote a beautiful story on this family tragedy and the sweet souls who ministered to the family. So, I am happy to admit that, in this case, I was wrong about the news media. (I understand that confession is good for the soul)

  5. LindaB

    Ya know, I have to wonder, after reading these two ladies’ accounts of their “purple” day at the hospital NICU, for two people who say they “aren’t particularly religious”, do they know they are demonstrating the heart of God? And they were His Hands and Feet that day? I hope God blesses them real good!

  6. jonny

    I hope this isn’t too harsh, it’s definately written in copious amounts of love, humility. I can not help but notice how in my limited perspective of things, God seems to use those some would often least suspect to do things that in truth often could, possibly even should, shame, maybe even rebuke, humble and then hopefully encourage us. Not trying to preach, just something I’ve had my eye on for awhile. I can’t remember how much of this I’ve written before, but basically every Monday night, going on two years now, I’ve been organizing and hosting a singer/song-writer type club in one Helsinki live music venue. The hosting thing happened by default, not something I’ve done before, or planned to do. This Monday night thing is also an extension of my House of Love happenings I’ve been organizing over 10 years now at other Helsinki venues. The House of Love name was not the original title either, but that’s another story. Well, at the end of one of the 1st evenings I hosted I basicaly pleaded with the audience at the end of the evening, for various reasons, that if we would, could we please try to find new and effective ways to help, encourage, support, respect, basicaly love each other. OK, I’m using the word “basicaly” a lot. I’m not gifted with Tori’s vocabulary = ) Anyway, last Monday I shared some about the truly devasting news of Maddie’s passing, then let those there know of this new way, that even got the amazing media attention, that people were showing their love through these donations to the March of Dimes in Maddie’s name. Also other things people were doing to show their caring love and support in very real, tangible ways in this tragic situation. I’ll definetly have to share about this follow up as well next week! Many aspects of this latest blog have brought a few more tears to my eyes and yet more aching little grips upon my heart as well. Again, another sharing thing and truly not meant to be a preaching thing, I began discovering a few years ago that one could possibly exist without love, but one can not live without it. To put something the apostle Paul wrote in possibly a truer context, “pursue love as if your life depended on it, because it does”. To anyone who’s done so, thanks for reading all this. Peace!

  7. tori

    jonny, you add so much to this blog– don’t ever go away!

    I know exactly what you mean. When I read this post about bringing things to the parents who have babies in the NICU, one of my first thoughts was “Why didn’t I ever once think about doing something like that?” I have often THOUGHT about how hard it would be to have a baby in the hospital, and I have even maybe said a quick prayer for those families, but the simple act of putting feet to those prayers– or in this case, putting toothpaste, lotion, hospital parking pass (how great is that?!) and submarine sandwiches to those prayers– never occurred to me!

    But it sure has now.

  8. Rutland95

    Tori –

    I have been a faithful reader of your blog for over a year now, but have never posted a comment until now. I wanted to introduce myself and let you know how much I enjoy reading your blog. I stumbled across your blog while searching for a website for your husband. He just so happened to mention that you had written a “masterpiece” on your blog and encouraged us to visit. From then until now I have been an avid fan. I have a blog of my own and have linked your blog as one of my recommended blogs to visit.

    I am encouraged that there are “christians” out there that have a more “open-minded” view of life and I feel “safe” when I read your thoughts. I feel like someone else out there “gets it”. It is true of this crazy blog world that there is some type of strange connection with people whom you’ve never met (but hope to one day).

    I’ve enjoyed so much reading about your life and thoughts and especially this new phase of life with Maddie. Exciting times for the Taff family for certain. If you have a moment, feel free to check out my blog and comment as well. I look forward to being a “blog buddy” with you and hope to meet you somewhere down the road.

    Many Blessings – Melanie

  9. Barbara M. Lloyd

    As one of your “older” readers, Tori, I must tell you how impressed I have been with your younger readers. They are sensative, bright, and stepping-up-to-the-front-of-the-line people. All I can say is “Yes, Virginia, there is hope for America.”

  10. Rutland95

    Tori –

    What a pleasant surprise in finding your comments on my blog. I’m glad to finally “meet you” as well. I’m loving that you enjoyed pictures of my family. Keep coming back to visit. Hope to talk to you again soon.

    P.S. How did you find out about my music? I didn’t know that site was linked to mine. Singing is my PASSION!!

    Blessings – Melanie Rutland

  11. Rutland95

    Just one more thing…when I saw the pictures with your mom and dad at the Gaither concert, I thought, “Now those are the kind of people the world needs more of! So your comments you made about your mom AND dad gave pictures to me in my mind. I truly believe the world is a better place with people such as your parents living in it! Thanks again for your time, Tori.

    Blessings – Melanie


    Tori – I do not believe it! I finally got through the maze and got logged onto this website. I have been trying for all this year! I truly thank my Lord for you, as well as your husband. I could sit here and write a novel on how I have listened to him for 30 years, and my falls and rise to finally be living for my Deliever Jesus the Christ. You will be hearing from me regularly, now that I have overcome technology barriers w/in myself. Strong in Holy Spirit, weak in computer skills! A little history so you won’t think I am totally bonkers! I am a delivered crack addict, alcoholic, 26 years of cigarettes, not to mention the deliverance of spirits of profanity, adultery, fornication, depression, loneliness, suicide. Am now secretary for my church, volunteer at my local elementary school (trying to plant early seeds!), but sub whenever they need for me to, and still live in my demon-infested neighborhood until He sees purpose for me to move. Otherwise, there is much work to be done there for Him, and His actions/work done in me speak louder than any words I could possibly ever say there! I log on to your blog every day, sometimes twice, and laugh and cry along w/ you, I enjoyed your cruise, and hope to see Russ perform personally one day, though at least one of his songs helps me thru every day! I luuuuuuuv the Jesus in you, and luv hearing your comments. You literally have me laughing out loud on days when I came to you w/ tears. Other days, you have me crying out of appreciation and gratefulness when I might have come in w/ giddy giggles. This will be the beginning of a great communication. I am very proud of myself for fianlly following directions enough, and overcoming the enemy’s blockade, to get this all down to you. Am looking forward to reading more from you, and hearing from you. email – jeparker63@gmail.com
    Thanks for letting God use you as He has done. Your ministry here has helped me many times, and I have passed on alot of your views to others, and well as tears and smiles. That sleep-walking dog had me laughing out loud, as well! I still bust right out laughing every time I see it! God does funny things, and has a GREAT sense of humor! In His love and

  13. rachelbaker

    What a fantastic idea. I have read your blogs about little Maddie, and my heart has ached, I have hugged my children a little tighter and made the extra effort to play their games when I could have been doing something ‘more important’. I am praying for that family.

    Its the long term parking passes that has struck me as such a great idea. What a thoughtful gift for a family that would be. My little nephew Joseph was born in October, 10 weeks early, and my brother and his wife were backwards and forwards to the hospital every day for weeks. A car park ticket would have been such a great gift … wish I had thought of it then … but maybe I can do it for someone else. Little Joseph is doing great now, thank God, but little Maddie is a reminder to live and love the best we can every single day.

  14. biynah

    I have really just came to your blog today. I was moved by your last post and I have to say, wow. I mean, in a situation like this, what do you say to someone who has lost such a precious little girl. So, what they did was so awesome. It really make me think about my kids and how time is so short. That I need to watch every word that comes out of my mouth and every action that I do towards my kids. I also agree with you when you talked about other bloggers being friends. Since I started blogging two years ago, I have been so blessed by many people that I may never meet. But for some reason, their heart hits mine and we connect. It is so great to have the oppertunity to meet people and hear what their heart says. I think I may know more about that friend than maybe their own family knows. It is an honor to be a part of people’s lives. Thank you so much for your kind words on my blog and I am honored to meet you. God bless you. From Tanya

  15. drmani

    A child’s life is precious. VERY precious. It’s loss
    crushing. Mind-numbing. http://www.chdinfo.com/mission/

    I was saddened that what is, to me, a professional reality
    invaded your life too – but look at what a ripple it has created.

    Thanks for sharing that brilliant idea. It’ll touch many lives.

  16. …praying for the Spohr family

    […] now I’m simply sharing a link to Tori’s post… here Posted in […]

Leave a comment

If you have already registered an account with us, log in to post a comment.

If you do not have an account, please setup a username to confirm you aren't a devil-spammer-from-Hell. A password will be sent to the email address you provide.