Read and Blue.
I’ve wanted to post, but I’ve been reluctant. When something bad happens, there is a whirl of cards and casseroles and what-can-I-dos and then…it’s over. This is to be expected; life marches cruelly on. But I couldn’t bring myself to allow it to do so here, on this site.
Yesterday, throngs of people wore purple for Maddie’s services, to remember a bright, dearly-missed light in the world. But all day yesterday, I kept thinking about today, The Day After. I didn’t want it to be just The Day After, followed by more Days After, when for Heather and Mike there is only the horrible immediacy of grief.
So this morning, when Simone and I got dressed, we wore purple:
It is hard to see here, because Simone was wiggling, but she is even wearing purple on the middle of her forehead in the form of a bruise. That’s how devoted she is.
Last year, when Simone was in the NICU, Heather was always here, cheering me on. She knew just exactly how I felt, because she had been in my shoes only months before. She was a comrade in arms.
Last night I read her beautiful tribute to her daughter, and watched the video, though the latter took me three tries and a Klonopin. I’ve never been where Heather is, and I have no wise counsel.
All I can do is assure her that I remember, and that I won’t stop remembering Maddie, ever, even after things return to normal around here and the talk returns to…whatever it is I usually talk about.
I’ll be adding a lot more purple to my closet.
24 Comments
I think that despite the going-on-ness (totally a word?) of life, Maddie will be remembered, really and truly, by many.
You know, I was thinking the same thing. How hard it is when everyone else goes marching on…and I’ve never even experienced it in the context of what Heather and Mike are going through. You aren’t the only one who will remember Maddie. Hopefully there’s some comfort in that. I still can’t get over how mad I am that it happened in the first place. It is just so overwhelmingly unfair.
I was feeling the same way…I chose to watch their video tribute today specifically because of the day-after feeling. I wanted to remember today too.
Nice picture of you and Simone.
Well said.
I have been worried sick about Mike and Heather, but what else can we do except remember? Maddie sneaks into my thoughts several times a day and I’ve never even met her. Just the thought of her big beautiful smile makes me smile. She is, indeed, an angel.
I understand that feeling, how do I find life amid the grief and how does it go from living grief to living life with grief? I don’t know. I found it just was; so this is day 4 without him, so this is what day 7 feels like without him. The first year is really, really hard. Watching a person you love deal with the darkest of pains, unable to help them in that pit, and all along figuring out what it means to be a new you, a you that brushed so close to the worst of things and came out the other side. Its at times like these that so much of day to day life can be laid bare, ridiculous and trite. Yet somehow we get from here to there. From contemplating what love, life and God means to cussing out Simon Cowell over his latest American Idol outburst. Once you get there, it not as though time has healed the wound, its just you have learned to be the walking wounded. You will always have the mark (brand) of someone who loves a child who has died.
“Learning how to be the walking wounded” about sums it up, I think. It’s raw and searing and almost blinding but you somehow keep stumbling, one foot in front of the other.
I don’t *know* the Sporhs, but I’ve long adored Heather’s writing, and Sweet Maddie has always had this… flame about her, this other-worldliness almost– which is not to imply she was some kind of “borrowed angel” or to turn her into a caricature or anything like that–not at ALL. Make no mistake– that little girl LIVED, and vividly. She was a little girl, like any other. But there was magic about her, too. And not everyone has magic about them. She has a face that won’t let you go.
You’ve made me smile because I’ve been thinking the same thing. Once the immediateness passes people stop knowing what to say – assuming they ever knew.
I don’t think I’ll ever be able to wear purple, or see long baby eyelashes without thinking about her. She won’t ever be forgotten, but it does feel weird, to go on. I can’t imagine what that must be like for Heather and Mike.
I thought perhaps that I was unusual in this grief that I am feeling for a family I do not know. So, thank you for reaffirming that maybe what I’m experiencing is a connection to parents who are dealing with the worst imaginable, as a parent myself. I’m hoping that the collective mourning that seems to be taking place, somehow, some way will lessen Heather and Mike’s load. I don’t know if that’s possible, but I hope that they are feeling all of this love and outpouring of concern right now and for a long time to come.
I agree with all who have said it: Maddie seems to be blessed with special in her spirit, something intangible, something unchartable, yet something that is continuing to touch so many of us throughout the world.
Beautiful photo.
Beautiful. I’ve been feeling the same way. We’ve been wearing lots of purple in my house, and Madeline’s been consistently choosing the purple crayon first. I think she’s coloring for Maddie. :)
i used to hate the phrase ‘time heals all wounds’ because in that moment of grief, you are not sure you want that wound to heal.
but a time comes where remembering is not paired with sorrow and you realise that in remembering you are also honouring and celebrating and living and the realisation comes that with each passing day, the edges of your scar or your wound or your brand are dulled, yet it will never go away. it is this very process that allows us to keep on living. whilst wearing purple, if we so choose. and we will, because right now we need to, but eventually because we want to.
It’s hard to know what to say when everything I seem to write sounds downright trite. My heart hurts for these people. No one can take away the memories though.
All of this has been so sad. I can’t even imagine. Simone looks like a font of knowledge in that picture, wise little owl!
There is a cool song called Start Wearing Purple by Gogol Bordello.
It is terribly heartbreaking about Maddie. There really are no words.
Actually, what had me in absolute sobs was Dad’s tribute to his daughter.
A Bereaved Parent’s Wish List, courtesy of the website Families of Spinal Muscular Atrophy.
http://www.fsma.org/FSMACommunity/GriefLoss/griefandlossfiles/index.cfm?ID=2432&TYPE=1312
I also thought perhaps I was strange for becoming so immediately transfixed by Maddie Spohr and the Spohrs’ story. I only just found them through your initial post. There just was something about Madeline. I sob every time I watch Heather’s tribute video, and for some masochistic reason I keep watching it. It does not seem real to me that the lovely, charming baby in that video is not alive, playing with her family.
I am so glad you and Simone are back. This is one of my favorite blogs — a part of my daily routine. Your kind words and that sweet picture are a balm for the intense sadness that, for whatever reason, I feel over the death of a baby I never met and the pain that her parents are enduring.
Also, you have awesome commenters. Well said, duck_jb.
Absolutely lovely photo. I can’t and will not say anything about that beautiful little girl, Maddie, because if I do it will open up something I never want opened in my heart. I can’t even wrap my mind around it… I have my own little precious baby girl, fourteen months old, and I can’t imagine how Heather feels. I just offer what I can, my deepest sympathy for Maddie and her family.
Aaaaaah, Simone is such a cutie, I love that expression she’s got.
It’s true, after a funeral, it seems everything abruptly stops for the grieving family. People stop calling, no more cards, flowers, visits. It’s important to keep it rolling afterwards, too. When everything dies down is when the reality really sets in.
My cousin died at 19 years old of cystic fibrosis. My uncle (her father) said that he’s just now getting to a place where he doesn’t feel as though he’s actively grieving on a daily basis. She died in 2004. It takes a LONG time, I think was his point.
I think the really great thing about our little online community is that we aren’t going to let Heather & Mike ever think that we’ve forgotten, because there’s always an open dialogue among us. We’ll talk about Maddie next month on Mother’s Day, the month after that on Father’s Day, on her birthday in November, and all of the other important occasions that really matter to them.
And I’m also adding more purple to my wardrobe. Luckily it’s a good color on me.
It’s very nice of you to keep remembering. I’ve just recently lost someone and have found that grief is so very lonely.
Cute pic of the two of you! (She’s getting so BIG!!!)
I think this is such a beautiful post. I wish more people wore purple on the day after. I wish I’d thought of it.
i love this tribute to the day after … and after that … and after that …
’cause it’s really all about being here … for whoever needs us … whenever they need us …
and remembering … and if it takes more purple shirts or the planting of purple flowers so that i see them every morning … i’ll do it.