All day, I have been moving about in a sorrowful daze. Prying a receipt out of Simone’s mouth only to burst into tears and squeeze her uselessly. Sitting here, blank. Refreshing various webpages, opening various Word documents, closing them again. I don’t have anything much to say, or maybe I have too many things, all warring for the upper hand.
The first time I saw Maddie‘s picture, I thought “That is the cutest baby I have ever seen!” and then felt vaguely traitorous, as I was holding my own baby at the time. But it couldn’t be denied. And plucky! That baby was plucky, which I am almost certain she got from her mother. Maddie died yesterday.
Maddie was a former preemie with chronic lung disease, like Simone, and this would be an opportune time to remind you what a real and present danger prematurity poses, but today, especially, no one needs reminding. My March of Dimes button is where it has always been, and a link to Maddie’s March of Dimes page can be found here. I am scheduled to make a speech at the St. Paul March for Babies, and while I wasn’t certain before what I would say, I am now. Of course I will be walking for Simone, but Simone can walk (well, ride) for herself, and so I will also be walking for Maddie.
A Paypal account has been set up to help cover Heather and Mike’s expenses, because on the list of “Things No One Should Ever Have To Do,” “Pay For Child’s Funeral” comes right after “Have Child’s Funeral In First Place.” The Spohrs have asked that donations to the March of Dimes in Maddie’s name be made in lieu of sending flowers, and over $14,000 has been donated so far, which makes me cry every time I think about it. If you feel compelled to send something tangible, like chocolate or gin, an address can be found here.
I’m going to get back to it now, my blank staring, my sudden outbursts of affection and tears, all the while thinking about the unthinkable, about Maddie. About Heather, and what she is doing right now all the way across the country without her baby. I imagine what it might have been like in that PICU room, what it might have been like to walk back into her house for the first time. I don’t think I’ll be getting to sleep anytime soon.
{ 42 comments… read them below or add one }
You were the other person I thought of when I saw the news, because the two of you have really inspired me. I got lucky the first time, and there is no saying I will be so lucky if I get to have another child. Then I went and signed up for the local Walk for Babies.
I feel guilty for every bit of happiness I have felt about even the smallest thing today. It just seems traitorous.
She really is beautiful. And I use “is” deliberately.
I don’t know how parents ever heal after something like this. I feel sick and dazed too, not least because I can’t imagine what it must be like for parents to walk into the bedroom of their baby who was so happy and so alive just days ago.
I keep the one outfit I bought for my never born baby hanging in my closet. I never really knew what to do with it. Throw it away? No. Donate it? No, it’s my baby’s. Use it for my next child? Never. So magnify that by a year and a half of belongings, of memories, of hopes and fears? It makes me nauseous and scared and sad for them. And I want to fix it, but I can’t.
I think making Maddie ”Baby of the Week” was a really lovely thing to do, and hopefully everyone who hears about this, or about somebody else who just lost a loved one, will do what they can, anything, to help and show support.
Jacinta’s thoughtful comment summed it up — I too am scared and nauseous and sad for the Spohrs. I’ve been reading about Maddie for the past few hours and shed many tears for this beautiful baby girl.
My heart hurts beyond words for Miss Maddie’s Mommy and Daddy.
I have been crying at random points all day long. I can not even begin to imagine what Mike and Heather are going through right now.
You said 2 things in your blog post that I said to my husband today – one is that dear god, WHY would you have money set aside for your toddler’s funeral? You wouldn’t. Which is why I clicked on that PayPal button.
The other one is that I keep thinking about what it must be like to walk into their home for the first time without Maddie. I have a 2 year-old, and her presence in this house is *everywhere*. I cannot imagine their pain. Just thinking about it knocks the wind out of me.
A truly sad day. Hugs.
I saw Madeline’s ethereal face on your site this afternoon… and saw the two dates… and immediately felt sick… and I cried… But my feelings aren’t important. Empathy seems so pathetically small in comparison. I too find it impossible not to think of the unthinkable and I find just the thought to be so painful that the reality is truly unimaginable. I wish the Spohrs strength and peace and whatever else it takes to get through this including but not limited to gallons of gin and elephant tranquilizers. I can think of nothing more terrible or painful or more deserving of numbing.
I have had the same kind of day, crying and refreshing webpages and checking my sleeping baby to make sure he is still breathing. Maddie is so beautiful– her spirit and her sweet face and curls, and I always loved checking up on her. I, too, am wind-knocked and heartbroken. The floodgates opened when I saw the picture of her in the PICU. Anyway. Crying. There is nothing good to say.
Making Maddie Baby of the Week is a sweet and wonderfully compassionate thing. Which made me weep more.
I will be holding them in my thoughts. Wishing them peace and strength.
I just made a donation, and will be praying for the family. I am in tears, just aching for them, not able to begin to understand what they are dealing with, not able to cope with the immediate burst of tears that spring forth when I think of my own 17 mo old and my 4 year old.
I have to go now. I need more tissues. Thank you for letting us have one more place to talk about the beautiful girl that left this earth today.
Seeing Maddie’s face as the “Baby of the Week” brought a whole new round of tears, which have come and gone throughout the day. I’m just stunned about the suddenness of Maddie’s death. She was thriving and doing so well just days ago! To lose her so quickly is heartbreaking.
We tend to fool ourselves into thinking we are safe now that we’ve left the scariness of the NICU, the hard part is behind us; and and the life/death worries and what ifs are over. But in reality, we are not safe. We try to forget that things can still happen. And for families like Maddie’s, things still do.
No one should have to leave her child behind at the hospital. Heather and Mike already went through that hell when Maddie was in the NICU. It just seems so cruel of life to make them do that again…
It is just so unfair.
It sounds as though we’ve had a similar sort of day today. It’s all so surreal, in a nightmarish kind of way. I wish Heather & Mike all sorts of strength and peace and comfort right now. I have been praying for them all day and I sure hope they can feel that. Many, many people are with them right now, seen and unseen.
Devastating. As a parent I cannot imagine anything worse. Just cruel.
I can’t even imagine their pain. Have just signed up for my local Walk for Babies… and will have Maddie in my thoughts.
Sadly, I’d never heard of Maddie or found their blog before today but today I am so saddened for them, and for you too Alexa. And for all the “real” and internet friends who have followed them and been part of their lives. What a tragic loss.
I can’t even begin to imagine the days to come. They are in my thoughts and prayers. You and Simone too, Alexa. I’m sure this is terrifying for you.
My heart breaks for Heather and Mike. Poor sweet girl, poor parents — I can’t even imagine how they feel.
I am a coworker of Mike’s. I saw him as he left work yesterday and he looked like he had the weight of the world on his shoulders and this morning I found out why.
Without getting into too much detail, I would like to encourage anyone wishing to donate to please opt for PayPal.
Believe me, as a cousin to triplets born at 31 weeks and as a sister to a special ed teacher whose students were often born quite premature, I know I know I know how important it is to give to the March of Dimes.
However, Mike is a freelance copywriter. I hope I’m not giving away too much personal information by saying that, but as a freelancer, he does not have any paid time off available to him through our company or California’s FMLA.
I am not close friends with Mike. I work with him and my heart is breaking for him, as are the hearts of many of Mike’s coworkers. But I DO know his employment situation, which is why I’m putting this out there.
Thanks to everyone who has donated so far.
My heart’s broken for her parents.
Maddie’s death was so awful and wrong. I can’t imagine the future for her family. Like you all, I gave money to and on behalf of total strangers and cried for a girl I never met and yet it wasn’t inexplicable. The blog world’s reaction to Maddie’s loss has been beautiful to watch – a lovely reminder of our connection to each other.
And now I’m sobbing again. You always manage to write things down that I can’t seem to pry out of my heart/brain to make sense of. Not that there’s any making sense of this. I just can’t believe it.
It is so so sad. Its been hard to shake and the news hasn’t been far from my mind since I heard.
I thought of you when I heard this horrible news. My grief for the Spohrs, who I didn’t know, is numbing.
Hold tight to that baby girl.
I am very sad for the Spohr family. Simone is perfect, healthy, and going to be just fine. Nothing is going to happen to her. Before you know it, she’ll be borrowing the car.
This story just keeps breaking my heart. I’m not a mother, so clearly I cannot imagine, but my god, that poor family. Give Simone an extra kiss and squeeze from the internet.
I am sorry for your loss.
That you made Maddie baby of the week is one of the sweetest and most heartbreaking gestures I’ve seen in a long time. My prayers go out to the Spohr family and for all those whose lives have been touched by that sweet, precious angel.
Me too, Alexa. I didn’t sleep much at all last night. When I saw that you made Maddie baby of the week I started crying all over again. My prayers and my love to the Spohr family right now. I can’t imagine the heartbreak.
(Sam was placed on pulmicort today. I thought of you. And of Maddie. And even though he’ll be fine it made me far more upset than it should have.)
Hugging you too.
xo
I don’t even know how to put words to what this does to me. I suppose I am one of the ‘lucky’ ones, with 11 year old twins who made it, but I still wake up in a cold sweat remembering the time in the NICU, I still remember every one of those children that didn’t make it and the rush of emotion that mingled fear, relief, guilt and anger all in together.
My heart still clutches today when they get sick…
Reading and hearing about Maddie Sophr transported me back over decade and now I find myself clutching not just my 7 month old, but my 11 year olds.
I pray that the March of Dimes slogan comes soon ‘One day, all babies will be born healthy’
My heart is with the Sophrs,
–Aileene
I don’t know what to say. Maddie is the cutest, sweetest little girl. Her smile is just so infectious! I poured through pictures and the Spohr’s blog, and wept as well. This life is so unfair!
I remember the helplessness I felt when my youngest sister’s 2nd son died of crib death at age 3 months. I feel that helplessness now for the death of someone’s little darling girl who I don’t even know. My heart is heavy, tears in my eyes.
It was VERY kind of you to put Maddie as Baby of the Week. I’m sure the Spohr’s will appreciate that.
I am so sorry for this family. All the comforting, and saying that she is in a better place, she’s happy in Heaven, etc, etc, just doesn’t seem enough and it certainly is not fair.
I just don’t understand God sometimes.
I felt so cliched when I learned of Maddie’s death and immediately said “But I just talked to Heather yesterday and Maddie was getting better!” But nonetheless, this was so out of the blue and horrifying.
Your tribute to Maddie is lovely, Alexa. You are a wonderful, wonderful friend.
Stories like this rip my heart out. I have NO IDEA what I’d do if anything happened to my son. A while back a little boy who lives near my grandma died in a car accident. Since then, every single morning, I am grateful I have a healthy kid.
i’ve been in shock. just sick with it. and i’ve been amazed at how people have come together. so many people. and it’s awful and terrible and i hate it and it’s amazing.
have you gone to http://amomtwoboys.com/for-maddie
there are over 200 posts about maddie listed there.
I’ve just signed up for our local March of/for Babies. I’ll be walking in honor of our healthy IVF baby and Simone, Maddie, Megan and Noah.
Alexa, I read your blog regularly, but rarely comment. I didn’t know any of them, Heather, Mike or Maddie, but I have been unable to stop crying since I read the tweets about Maddie’s passing. As the mom of a 10 mo old, it’s all to easy to imagine myself in that position. I, too, hug my girl tighter and am grateful for every single day I have with her. So heartbreaking that Heather’s time with Maddie was so short.
Making Maddie baby of the week was so touching. Like everyone else, it brought fresh tears.
my heart breaks, my eyes weep, my soul hopes in time they can find the sun again.
I hadn’t known of Maddie or her family before this week, but her story has haunted me. My heart is aching for her parents, and for everyone who knew and loved her.
I’ve been hugging my kids tighter this week.
I know how tenderhearted you are, Alexa. Maddie’s picture as Baby of The Week is a touching tribute.
Hug Simone for me, OK?
thanks for your post and best wishes to maddie’s fam.
My heart breaks for this loss, this beautiful child and her family.
My condolences,
Sarah
I’m with Amelia. You and Simone were the first people I thought of when I heard about little Maddie. My heart just shattered for her family, and then it took me a few days to get up the nerve to come here because I knew whatever post you had would probably make me cry.
The second people I thought of were http://casadekaloi.blogspot.com. The fact that their son, premature though he may be, is fighting and improving every day really put a smile on my face.
My prayers go out to the Spohrs.
Thank you for sharing the beautiful life of little Madeline Alice with us and not being afraid to speak of something so sad and heartwrenching. I ache for her parents and their loss and the loss of such of young spirit. There are no words.
As the mother of a preemie they are living my absolute worse nightmare which is so real for all of us who experience it.
I pray that they find peace.