Five years ago today Madeline died. I remember driving Mike and me home from the hospital. I remember his boss calling him on his cell phone. I could hear her sobbing over the noise of the cars around us.
The worst things are seared into my memory. The IVs, the sounds, her unnatural weight. The way her eyes looked. The smells can still knock me out. A particular soapy scent hit my senses last week and I almost passed out. The good things fade. I don’t remember certain little details about my other two children, but new memories of them are taking the place of old ones.
I get emails and letters from parents every day, new parents in the bereavement club. I want to tell them that it gets better. That the pain goes away. But sometimes I feel like only the shock goes away. The pain is still there. It still hurts so much. Sometimes I think the only thing that changes is you learn you won’t literally die from the pain. I used to wake up surprised the pain didn’t kill me while I slept.
On April 7th, I want to be thankful for the time I had, for the love we shared, but the last few years have found me angry about everything she’s missed. I still can’t believe this happened to her. It makes me sick when I realize she’s been gone three-and-a-half times longer than she was here.
I just want her to be alive again. I want to look to my left and see a six-year-old with missing teeth. I want to know if she’d have preferred to be called Maddie or Madeline. I want her to think I’m annoying and nosy and strict. I want her to be learning and having amazing experiences in kindergarten. I don’t want her to be in an urn.
I’m so tired of missing her. I’m so tired of the pain. I’m afraid of the day it might not hurt as much – what a betrayal. I want the anger to go away, but I’m afraid of what might replace it.
It’s been five years but sometimes it feels like five minutes. Sometimes I feel as grief-stricken as I did in those early days, but without the gentle buffer of shock. I want to scream but I won’t. Instead I’ll kiss her sleeping siblings and climb into bed. I’ll squeeze my eyes shut and imagine that she’s holding my hand, leading me through. As scary as it will be, I’ll do what I can to let go of some of the anger.
I miss her and love her with every ounce in me, and I know she loved me, too…and I’ll never stop wishing things were different.



Kelly says:
Nor will I and I will always remember Madeline.
Heather says:
Thinking of you guys today.
alice says:
I saw the date on the calendar this morning and remembered Madeline. I drove to work and got overtaken by a purple car and remembered Madeline. I braced myself to read your post. I will forever wish I could do something to bring her back to you and Mike, Annie and James. We all remember her and miss her. Rest in peace, little darling.
Elizabeth says:
I don’t have the words. Just sending extra love to you today.
Wendy says:
I can’t magine what you are going through but you are in my thoughts. xx
Lilian says:
I hate that we are both part of this club. I read your post with tears in my eyes. I relate to everything you say about anger and pain. It’s still so new for me, and I realize that this is a life sentence, and that just seems unbearable. I’m thinking of you all today, and of darling Maddie, and for the next 22 hours, I’ll give all my thoughts to you, and go back to my girl and myself after that. Much love … xxx
Jen says:
I’m so sorry for your loss….
Bessie.viola says:
Love to you all. I have been thinking of you, and we are wearing purple today. She is missed by so many.
Jayme says:
Nor will I. Thinking of you all today, xo
Vicky says:
I’ll always wish things were different for you and your family too. I hope you find moments of peace today.
Sarah says:
I recently found your blog and have enjoyed reading about all of your children. I have a girl (3yrs) and a boy (17 months) of my own so can relate to many of the things you write about. After reading your beautiful post from today I just wanted to say that I am so very sorry for your loss. I know that doesn’t even begin to cover it and I cannot even begin to imagine how you and your family cope on days like today. Through your posts I can see that you do an amazing job of keeping Maddie’s memory alive. I wish you all lots of love to help you get through today together
Sheryl says:
Thinking of you and your beautiful Maddie
Jewl says:
Thinking of you, especially today. I too wish so badly that your story was different. May love and peace surround you today and always.
Tracy says:
God Bless you and your family Heather. Maddie will never be forgotten.
Molly says:
My stomach felt like lead coming to your blog this morning knowing today is the anniversary. I am so sorry that this has become part of your path in life. It is deeply unfair. Wishing you both peace–today and always.
Susie says:
Love to your family on this day.
Elizabeth says:
My thoughts and prayers are with you all today.
Zchamu says:
I was thinking of Maddie, and you, the other day. About how time passes and life goes on but some people are never ever forgotten, never ever unloved. Hugs to you and your family today.
Susan says:
Unfair seems like far too weak a word, but I am so sorry that Maddie is not here with you. Love and gentleness to all of you today and every day.
Bridget says:
Gentle hugs. I’m so sorry.
Loukia says:
My heart aches for you, I’m so sorry. I think about your beautiful daughter often. Love and strength to you.
Lindsay says:
Sending you love. I am sorry for your loss and your unending grief. I have always found your blog to be a celebration of life and family and you inspire me do the same in my own life. Sending you love and thinking of your beautiful Madeline today.
TamaraL says:
Thinking of you all today…
Jenny says:
Maddie’s personality shines through the pictures and stories you’ve shared. Your family is in my thoughts and prayers.
Jessica says:
I read your blog every day and I think of Madeline daily! She will never be forgotten. Hugs to you and your family today. You are all in my thoughts and prayers.
Nancy says:
Thinking of you and your family today.
Susan says:
I wish she was here too. To be your little girl and to be a big sister to Annie and James and cuddle with Rigby. Many many hugs to all of you.
Sinead says:
I’m thinking of Maddie and all your family today. X
Sue says:
There are no words for what must be the worst pain that a parent can ever experience. Maddie will always, always, always be remembered by all of us. Lots of love and hugs to all of you today,,,,,,,,,,,,and everyday………………
Nellie says:
I can’t even imagine an inkling of what you and Mike have gone through nor do I have the words to make things sunny and bright. All I offer you on this day is my heart full of saddness and love for you – may it wrap you in comfort. Madeline was and always will be a beacon of light in our lives.
Shannon says:
I’m thinking of you and Maddie today.
Lisa kisch says:
Heather and Mike, You are right, the pain will never go away but my mom says it gets easier to bare. We had a birthday cake two months ago for my brother who died before he was a year old 55 years ago. I wasn’t even born but i miss him terribly – for who and what he could have been to me and my family. We put a plate of his cake out for him, ( in our culture, you feed the Ancestors and those who have passed). We lit a candle and put it outside in -35 weather with a very strong wind – the candle stay lit for ten hours and we believe it was his thank you for remembering him 55 years later. My Mom (77) sends her love and prayers as do I
JustAMom says:
This is beautiful and heartbreaking at the same time. Your mom and family are in my prayers.
Lisa says:
Sending all the love I possibly can to you. Maddie is and will be forever loved and adored by so many. I love seeing her brilliant smile in the lovely pictures you took, and knowing the incredible light she brought to your lives in such a short time. What an absolute joy she was.
It’s silly, I know, but all day today at work I’ll be using my purple highlighter in honor of her.
Debbie A-H says:
Love to you all.
Kim says:
You have all been in my heart and on my mind the last few days. I know how hard these days are. Some days are easier than others, but living and raising a family without all our children is so hard and so unfair. I pray for peace in your heart and mind today my sweet friend. xoxoxo
Abby J. says:
Sending extra love and hugs your way today.
Becca says:
Thinking of your family today. All five of you.
Susan says:
You’re all in my thoughts, as you especially are on this day, every year. I wish she was here.
Meg says:
Love and hugs.
Eli says:
Hugs we will never forget your sweet Madeline
Aileen N. says:
Thinking of Maddie and your family today.
Jen says:
Hugs.
AmyG says:
Many prayers going up for you & your family today.
Rebecca Smith says:
I woke up this morning immediately thinking about you and your family. You are in my family’s thoughts and prayers. Madeline will never be forgotten.
Rebecca Smith says:
Lots of love!
Heather says:
My heart breaks for you today. Sending love and prayers your way.
Jessica says:
Thinking of you and your family today. My heart is breaking for you all still. Sending hugs from afar!
Mijke says:
Thinking of you and Maddie today…
Mumtaz says:
Thinking of you all today and remembering beautiful, sweet
Maddie. Sending lots of love and hugs.
Amy says:
I wish things were different for you, too. Remembering your beautiful Maddie today.
gorillabuns says:
xoxo
Courtney says:
Love to you all today and every day.
Nikki says:
A little extra love for your family today. XOXOXO
Mary says:
Thinking of all of you today, and every day.
Kat says:
Your family is so loved. Thinking about all you’re missing with her makes me angry too, but watching your little ones heal you with love (and distraction) has been amazing. Big giant bear hugs to you friend.
Suzy says:
Lots of hugs today and every night-
MG says:
Oh I so wish that too, I wish things were different. Always fearing my choice of words will make things difficult for people grieving or experiencing a tragedy, just know how very sorry I am.
Vicki says:
I’m so sorry.
nicol says:
You are loved and Maddie will always be remembered. Love to you and yours.
Lisa says:
Oh, Heather, I wish there were words that could help. Instead I send all my love and many hugs. We are remembering her and honoring her today.
Kate says:
I think of Maddie often. I’ve had my own first baby since I started reading here 5 years ago. I have given her lots of extra hugs and love in moments when I think of Maddie. Lots of love and peace to your family today. It’s not fair.
Liz B says:
Thinking of you all today.
Mar says:
You’re all in my thoughts
Nicole says:
(((HUGS)))
Ann says:
Today and everyday that I read your words I think about strong you are and how brave you are for sharing your journey. Prayes to you all.
Ann says:
whoops – prayers
Laura says:
Sending you love and strength-not just today, but always. Your daughter is not forgotten.
Heather Hamilton says:
We have never met, but I have followed your story too. We share a similar journey of loss and I hope that we can meet and connect to share some beautiful stories about our kids. Prayers to your family.
Sharon says:
Thinking of your beautiful family today. As a fellow club member, I know all too well the pain of these days with a gaping hole in our hearts and families. Hugs to you!
Jill says:
Thinking of your beautiful family today. Maddie has touched so many lives.
Karen says:
My heart is with you.
Rachel says:
Wishing you love and happy memories of Maddie.
Loralee says:
Big, big hugs, sweet mama. xo
Steph says:
Thinking of you all today. Sending love and prayers.
leanne says:
Remembering Maddie… hugs to you and your family.
Jessi Farrell says:
Thinking of you guys today Heather.
Jess says:
I never met Maddie, but gosh do I think of her often. Praying for you all today.
JustAMom says:
Wishing you lots of love and strength today. I am so very sorry for your loss. I think of your Maddie often. Know that there are many, many people praying for your family.
Manic Mommy says:
Holding you all in my heart today and every day.
Lisa says:
I wish Maddie was still here, too. You guys got a raw deal.
Michelle says:
Sending warm thoughts and prayers of comfort to you all today. I think of your sweet girl often. She will never be forgotten… (((HUGS))) to you all!
Pattie says:
Thinking of Madeline, you, and your whole family today. Sending you love and light from Tennessee.
cindy w says:
Woke up thinking of you today. Sending love to you, Mike, Annabel, James, and Maddie. Always.
Bridget says:
Thinking of you today.
Michele says:
You don’t know me–but I’ve followed your journey and your little Maddie. I’m touched by both your honesty and your strength. You and your beautiful family are in my thoughts today.
Lisa says:
Always think of Maddie every morning when I read your blog. Take care, and my best to you, Mike, Annie, and James.
Meagan Francis says:
Thinking of you all today, Heather. I didn’t even know you at the time, but I will never forget that day, or Maddie, either.
PattyB says:
I just recently (April 2nd) acknowledged the 24th passing of my oldest daughter, Brittni. She was 6 months old when she passed from SIDS. The last few years have been extremely difficult for me on the date of her passing and on her birthday. I see what my older girls are doing in life, everything they’ve accomplished, and I wonder what she would be doing. What she would look like, how her voice would sound…everything. I completely get it, and I’m here to tell you, 24 years in, that the majority of the year is wonderful. These two dates, however, get me every time. I think of my granddaughter, and I wonder if she would have had children by now, or if she would be in graduate school or traveling the world. Hugs, thoughts, prayers, and much love to you and your family today, my cyber-friend. April completely sucks. That’s all there is to it.
Alison says:
You do such a great job of honoring her and keeping her memory alive with this blog. Thank you for sharing Madeline and her siblings with all of us. So very sorry for your loss. xoxo
SnarkyMommy says:
Thinking of all of you today.
Jenny says:
Thinking of you all today!!
Molly says:
I am so, so sorry for your grief. So, so sorry the world lost Maddie.
Yadi Perez says:
Your family is in my thoughts today, sending love your way
KeraLinnea says:
I am so sorry. I hate that you and your family (or any family) has to go through this. I think of Maddie all the time. There’s a March of Dimes billboard that I pass often, and every time I look up at it, and think of Maddie, and of you and Mike, and feel so sad for you, but so proud of how you’ve worked to keep Maddie’s memory alive and to help other parents. And I think of you guys every year when I write my check to the March of Dimes. My heart is with you all.
Rita says:
Sending you a virtual hug and hoping today is filled with a few smiles as you remember your amazing and strong daughter!
anna whiston-donaldson says:
Five years. Oh, Friend! I am so very, very sorry.
MA says:
I have always been very sorry for your loss. And I am so sorry you cannot let go of your anger. It’s what makes it harder on you, but I also believe that it will dissipate over the years and you will have a better kind of peace. That’s what age and time and wisdom and yes, love, do. And you have such love from your family and friends. Hoping this day passes quickly. xx
Maggie says:
Thinking of you guys, and Maddie, today & always.
Amy says:
I’m so sorry that you and Mike have to live with the pain of losing a child. I know Maddie is so proud of the legacy you have created in her name. Hoping that you find some comfort today and every day.
Kathy Shipstad says:
I will NEVER forget your Madeline….
chrisgharmon says:
Thinking of you and of Maddie. I can’t believe it’s been 5 years. Much love to you all, always. xoxo
Amy says:
I started reading your blog when you were pregnant with Annie. I’ve “watched” you and Mike deal with the loss of Maddie. I am so proud of how far you’ve come. The pain will always be there. But the fact that you two made it through, together. And have gone on to build this life and accept the the fact that you have to build it without Maddie is amazing. I know you had no choice, but really, you did. And you’ve kept going. I didn’t read this blog when Maddie was with of us, but I’ll tell you that I think of her so very often. And I know I’m not alone. Maddie lives on through all of our thoughts and through the memories of so many. But I know – that’s so not good enough. And I’m so so sorry.
Procrastamom says:
Thinking of you both today. And remembering Madeline always.
kathi g says:
hugs and love to you and your beautiful family. Maddie will never be forgotten.
Anna says:
Love to all the Spohrs today!
Deborah Pucci says:
Remembering Maddie today and her smile that turned her face into sunshine! ((HUGS))
ldoo says:
Thinking of you today. I’m so, so sorry for all you have lost. I know you wouldn’t wish that pain on your worst enemy.
Mr Lady says:
I wish it had all been different, too. I remember that night, and the next day, too. I am grateful for and proud of the way you and Mike have continued to live, very largely and gracefully, as you do. It’s been lovely to watch. I have nothing more eloquent to say than that our family loves yours
Kara says:
I am so sorry. I came here today in a bad mood because my husband threw away some of my childhood memories recently and I just discovered it. But it was just stuff. Nothing compares to real people, our real children. I am so sorry.
Cat says:
Thinking of you all today. I look forward to reading your posts EVERYDAY, but never comment. Maddie has touched my life and people in my life as I’ve shared your story. Can’t imagine what you’re going through, but know that people in my life and I have been touched by your family’s experience. There is literally not a weekday that goes by that I don’t think about Maddie because I think of her every time I read your words. I know that probably isn’t much of a consolation, but I do hope you all know that she continues to touch the lives (in an incredibly positive way) of people who are strangers and live states away. Hugs to you all always, and especially today.
Payal says:
Thinking of you guys and sending hugs.
Kathygee1 says:
I wish I could say something to bring you comfort today, but there are no words. Thinking of you all. xo
Shelly says:
I truly don’t know what to so but am hoping it’s better to say something than nothing. We’ve never met IRL but I feel immense sadness for your family. I’m so sorry the pain doesn’t get any easier. I wish I could help. It’s absolutely not fair that your Maddie isn’t here and I know nothing can change that but you are an incredible mother and inspiration and Maddie is changing and saving lives. I regularly support the March of Dimes because of your family and purchased a baby Jack blanket last week when they were offering to match the purchase for your NICU care packages. I don’t know if this is of any comfort but the name Madeline Spohr is an incredibly powerful one. Thinking of you and your family today and all days.
Charlsie says:
Maddie is in my thoughts and you and your family are in my prayers. She is remembered and you are loved.
Debbie B. says:
Thinking of Maddie today and everyday. Hugs to you and your family.
Melissa says:
Thinking of you and your family today. Maddie lives on in your hearts and she will never be forgotten. Watching how you handle such a difficult and horrible situation with grace and love is such an example to me, as I’m currently going through a different, but difficult time. People who have lost children are quite possibly the strongest and most amazing people I have ever met. Maddie has touched more people than you will ever know.
Beth says:
Thinking of you all today. I read your blog every single day. I love hearing what your family has been up to.
Kristina says:
Thinking of you and your whole family today.
Debbie says:
I think of Maddie often and how in such a short period of time she was able to make such a difference in so many other lives.
RookieMom Whitney says:
Heather, I am always impressed by you. You are so generous to share your words, to help thousands of parents name their feelings, to allow them to connect with you. I am furious on your behalf at the unfairness. I think of Maddie everyday.
Alyson Sprafkin says:
Thinking of your beautiful Maddie and the rest of your family today and every day. Wishing you continued strength and peace. Thank you for all you do to honor Maddie’s memory.
Maria Mora says:
Love you, Heather.
Mary says:
Gone but never forgotten. Much love to all of you.
Ericka says:
You are in my thoughts!
Jordan says:
Wearing my purple and thinking of you all. Thank you for sharing your girl with all of us- she is dearly missed by the lives she’s touched through this blog.
Alexis says:
I know we haven’t met but you’re in my constant prayers. I wish things were different. Much love.
Michelle H says:
Still here 5 years later. Still aching for you. Still remembering the sweet sweet baby. Lots of hugs to your family.
Courtney says:
Hugs, Heather. Thinking of you, Mike, Annie, James and Maddie all day. I will always remember your sweet girl.
Jeanne says:
Remembering Maddie today and thinking of you and your family. Your story (Maddie’s story) has touched SO many lives!
Melissa says:
What achingly beautiful words, Heather. I am just so sorry that you have to relive such agony. Life isn’t fair. All your readers are here for you — thanks for sharing what is surely such a painful day for you. Her life and memory live on in you all. Praying for your whole family today and every day.
Kathryn says:
Thinking of you and your family today. I started reading your blog before she passed, and I remember the shock I felt reading the post by your friend those 5 years ago. You and your family will always be in my thoughts, and now that I have a daughter of my own I can’t even begin to imagine the pain and anger that you feel. Much love.
Lanie says:
I am thinking of you, Mike and Maddie extra today. I think of you all everyday but some dates are just harder.
It will be 5 years this December from the day Sawyer died. Jake died 9 years ago this August. Logically I know I lived through jake’s 5 year deathiversary but I am filled with sadness, anger at the unanswered questions and just plain old dread anyway.
A close family friend died on Friday and I heard someone telling his wife that in time it will get better. They both looked at me for confirmation. I could not look in her grief stricken face and say “yes it will get better. ” Life goes on without our loved ones and it is different but it is not better (in my opinion).
Sending you hope and hugs today and always. xoxo
Jody says:
We are all learning from you Heather, no matter what our situations are. Thank you for being so open with your feelings. Sad for you today and I wish that things were so different for your family. She was such a little sweet heart
and I can not begin to imagine the empty spot she has left in your heart. It will always be with you but so will she. Hugs to all of you today.
Stephanie says:
It’s probably just a coincidence, but I see it as a fitting tribute that today is “Wear Purple” day at my daughter’s preschool/daycare. It’s also the “Week of the Young Child.” Remembering your dear sweet Maddie. Thank you for being able to share with us your journey. xoxoxo
K.B says:
Hi Mike and Heather. Its me, Kandi Ann. I dreamed your family took me in to live while I looked for a place to live. Mike made this huge awesome desk bunkbed thing and when I went to see he, he laughed and it disappeared. (Thinking the april fools day pranks inspired that) you all didn’t talk to me, but you Heather were flitting around tending to everyones needs, (sound familiar?) And the you took me to look at homes, (trailers) and when I picked one, I walked inside and it fell over. Then I woke up. When I reaized today is “the day” I remembered talking to my husband last night about today. Its our 3rd yr anniversary and his 37th birthday. Also my nieces b day. Remember 5 yrs ago, I commented or emailed, because Boogies said Baby in regards to Maddies picture, but she wasn’t really a talker yet. 5 yrs ago today, I found your family through Tanis, and I’ve stayed and I Pray for you often. Maddies picture hangs above my Grandchildren and I asked her long ago to be their guardian angel. Every one comments first on Maddies’ beauty, then on my grand kids. :o) I’m not sure if you saw it, but I’m friends with you both on facebook and I posted a scrapbook page I made for you all for Maddies birthday. I would love to send it to you. I’m always going to be your families Prayer warrior as many also are. Your family has been touched by pain that brought amazing things. I am glad I am here with you all through it from the outside! Love your family as dearly as if you are my own.
AuntieMip says:
In 5 days it will be 45 years since our David died. David John is my older brother. I have shared this here a dozen or so times. Not because our stories are similar. There is no comparison. Not because my experience as a sibling is the same as yours as a mother. It is not. Not because I can say I understand. Because I don’t.
I share again and again because my deepest wish is that you see a family many years ahead of yours who has survived the death of a child. A beloved, irreplaceable family member who suffered and who’s suffering was anguish for those who loved him to endure. A family who managed to keep living, loving, laughing & healing despite a deep, deep wound. My wish is that you see hope.
Five years gone is too long. There is no reward in surviving that. Well meaning people will still say something stupid that will hurt. Hell, I might have though I hope I have not. Every year is equal parts farther away from her, yet closer. The pain of her death will be with you every day of your life.
So what is my purpose or point? I want to say her name so that you know she is not forgotten. Madeline Alice Spohr was a beautiful, spirited, bright eyed little beauty who was the light in her parents, grandparents, aunts/uncles lives. Her life mattered. Thousands of dollars have been raised in her name for tiny babies in the hopes they will survive. Madeline has a sister and a brother and they are learning about their sister and through them her little life continues in some way.
More than anything I hope to give you a little glimpse down the road to what life after the death of a child can look like. Heartache, grief and joy can walk hand in hand. Those perfect memories of Maddie will never truly fade because they are born of love and love endures forever. I have asked my mom countless times how she did it. How she managed to give us a great childhood. How there was happiness and not this cloud of black hanging over us all the time. Her answer is not really all that profound, she had 4 other kids…what choice did she have? For me that was the greatest choice of all. Oh, and the pain? She said to tell you this again. While it is always there, in time it ceases to hurt so damn badly!
Danielle Smith says:
As always, your words are such a gift. Thinking of you and sending love.
Glenda says:
Thinking of you, Mike, Maddie, Annie, James and your families!
visitor says:
Your family is in my thoughts today.
Mary says:
Thinking of you all, today and every day.
Stacey says:
My thoughts are with you and Mike today.
Jennifer Rosenberg says:
Your beautiful daughter is in our thoughts today. She will never be forgotten.
Sadye says:
In the Jewish faith on the anniversary of a death (I I also do birthdays) you light a yortizite candle. You buy them in the grocery store in the “ethnic section”. They burn for 24 whole hours. Jews say the prayer for the mourning of the dead, but I always give one to friends of all faiths who are grieving. This is something we do for the entirety of grieving. It’s a wonderful way to honor the person. You see that candle burn and it’s almost like you can speak to them. It’s as if automatically the space where the candle burns becomes a peaceful santuary of rememberance and peace. I’m not someone who believes in a higher power but certain aspects of my religion I do find quite soothing. Maybe you will also.
Paula says:
I’m so sorry. I read your blog everyday, but never comment. I never met your family, but I’ll never forget your beautiful and adorable Maddie.
Carol says:
Sorry, continue to celebrate her wonderful, but way to short life.
Jolene says:
Nothing more poignant to say that hasn’t already been said but just wanted to let you know here’s another person sending you all hugs today. I hope that you are able to create some beautiful memories today with your two living blessings. Maddie would want you to. My heart aches for you all. Your beautiful little girl will never be forgotten.
Casey says:
A longtime lurker here to tell you that I will never forget your sweet girl. Praying that today brings your family peace.
Paula says:
Every time I think of Maddie I hug my girl a little closer. You give words to the grief of so many – Maddie is the face of my babies lost before they were born. Your voice is the voice of that aching pain inside me that I can’t express. Your strength and honesty, and the beautiful family you and Mike have built despite your loss is inspiring to many. And Maddie lives in in so many memories and in the legacy of Friends of Maddie. And in your work with March of Dimes. Love to you all.
RookieMom Heather says:
Nothing I can do or say but throw a little more love at you with a virtual hand-squeeze.
Alexandra :) says:
I’m still so sad that this sweet angel will never grow up. You are all in my thoughts
Mom101 says:
Heather, you are all in my heart today. Much love xo
Lenora says:
I’m so sorry you have to endure this. We will always remember Maddie. I will be thinking of you and the whole family.
Tami says:
Thinking of you!! Life is so unfair and Maddie is missed by so many!! My heart break’s for you and your family as each year passes that you don’t get to be with Maddie. Hugs
Jenny from Mommin' It Up says:
I still think about her all the time. She was a treasure, and I am so sorry she is gone. Love to you all.
Jill @BabyRabies says:
Love, hugs, prayers for you all today. I am so very sorry.
molly says:
*tears* A beautiful little girl that I’ve thought about many times over the years even though I never met her. Hugs to you.
Lisa says:
Thinking of you today and often. It is unfair, and it is so unbelievably sad. You didn’t deserve this, no one does, and I’m sorry that you have to feel this pain. I won’t ever forget Maddie and the good that has been done in her name, but I’ll never stop wishing she could just be with you instead. (((hugs)))
J+1 says:
Prayers and love coming your way today, and always.
Alex says:
I remember reading about your family when she died. I think of you all often, and will do so especially today.
Denise says:
I’m sorry that your beautiful daughter passed away. I will remember her and pray for peace for you and your family.
Laura says:
I am so sorry that you and your family have to live with this pain. Although you won’t ever be able to make sense of your loss, please know that Maddie has been an inspiration to many, and her radiant smile continues to inspire me to cherish every moment with my children.
Jessica Stringer says:
Sending love, hugs and prayers for you all on this tough day. What a beautiful soul she is.
Karen says:
Such a beautiful little girl. Thinking of you all, much love xxx
Melissa says:
I am hugging you and your family in my heart.
Brenn says:
Today, I made a donation to the March of Dimes in Maddie’s memory.
Hugs to you all.
Carrie says:
Praying for your family today. Maddie is not forgotten.
Debi says:
Sending you hugs and prayers. But remember Maddie is with you every day. Look at Annie and her beautiful smile, and her personality. Look at James and see his eyes and his beautiful smile. They are Maddie.
Kayla says:
Please know that I’m always thinking of and loving your family, every day, but especially on days like today.
And know that I love Maddie, present tense, and will always remember her.
Susannah says:
There is nothing I can say except I hear you, I remember Maddie (from your blog), and I’m sending you all strength and love. Maddie is not forgotten.
whoorl says:
Sending so much love and light to your family, Heather.
Dave says:
I saw this post today thanks to a Facebook friend. My heart aches for you and your family. Mine is in the early stages of dealing with my two and half year old daughter who has a brain malformation the doctors believe was caused by some as yet undiagnosed but likely fatal metabolic disorder. The pain, anger and grief that comes with it can be debilitating, but I cannot claim to know what you and your family have gone through or now feel. I know just enough to be brought to tears by your words and your journey. Maddie is beautiful.
Linda says:
Thinking of your family today and wearing purple. (I still wear purple every Tuesday.) I will never forget Maddie. Thank you for sharing your thoughts with us.
Suebob says:
Me too, sweetie. I do believe that one day, we will be together with our loved ones again, and when that happens, it will seem like not a moment has been lost. That is my hope.
Diana says:
Thinking of you, your family and Maddie. Sending you lots of love today. xo, D&G
Amy C. says:
Amy C. says:
Sigh. I meant that as a heart. Okay, I will just say the word then, “LOVE”. Holding you all in my heart today.
Laura says:
Thinking of you and your family today. xoxo
Sandra says:
Love and light, today and always. Your sweet Maddie will never be forgotten.
Bridget says:
Thinking of you today. Remembering Maddie. Holding my little ones a little tighter and a littler longer in her honor.
Meg says:
Much love to your sweet family, and the memory of your darling girl.
Krystal says:
Sending all my love to your sweet family. I remember Maddies always but especially on this day.
Norm says:
Maddie and your family will always be in my heart.
Jeanie says:
Thinking of you and Mike, Heather. Blessings and hugs to you.
Camels & Chocolate says:
I’m so sorry, Heather (and family). Know that so many people who you have never even met are sharing in your love (and your grief) for Maddie.
TonyaM says:
Extra prayers and love today.
Auntie_M says:
Sending even more love to you & yours today…
(Letting go of the anger(speaking from the experience not of a parent but as an aunt who lost a nephew and–in a different way completely–as the victor over being sexually abused as a child) will be scary, and freakin’ hard, and may feel like it takes forever (and indeed may take years or in “sections”) but in the end, worth it as it won’t be able to eat you alive. In the end, it will be one more way you honor Maddie and lose some of the chains that can strangle one’s soul.) I’ll be rooting for you.
Gwen says:
Although we’ve never met, I’ve read since before Maddie died, and I am still SO, SO sorry that this happened to all of you. I wish she were with you with everything I am. Know that there are so many out here who would ease your sorrow, if only there were a way.
Lindsay says:
Love to you and yours. So much love. I will never, NEVER forget Maddie.
Paula R. (fka preTzel) says:
Miss Heather – your wishes should never go away. Wishes are memories and hold on to them as tight as you can. I so wish I could make all your hurt and pain go away. I can’t but I want you to know that I will forever remember your Maddie Moo.
Mieke says:
Thinking of your family today. I have often thought about your sweet Maddie. My mom passed away last year and also loved purple. I think of them both when I see the blooming purple flowers. Wishing you love and comfort today.
Karen says:
M M M M M M M M M M M
Veronika says:
I’m so sorry for your loss. She was a beautiful little light and it’s not fair that the world couldn’t see her shine as she grew up. Sending you lots of love and strength.
Katie says:
I’m sending all my love your way today. I truly cannot conceive of the pain you carry with you and the strength it takes to lug that load around. Madeline was as blessed to have you as a mother as you are to have her as a daughter. I only wish you had more time together. xoxo
Caroline says:
Love to you all and love to your angel Maddie.
Amy says:
I am an everyday reader of your wonderful and moving blog, Heather. I had to write today to say I am so sorry for the loss of your beautiful girl, Maddie. Your and Mike’s love for all 3 of your children is inspiring. In Maddie’s honor, I donated to the March of Dimes walk last month. Thinking of all five of you today and thank you for sharing your journey and family with us.
Leah says:
What a beautiful little person.
cj says:
i wore purple today for your beautiful daughter. i’m sorry and am praying for you and your family.
Skye says:
Maddie not being here is so unfair. I am so very sorry. Because of you, I will never forget her, even though I never met her in person. xoxo – I hope your family feels all the love being sent to all of you today.
HeidiLee says:
Hugs and prayers for all of you….the purple rhododendron that I planted for Maddie will bloom soon…thank you for sharing your family.
Michelle says:
I have been thinking of you guys all day. I wore my purple just for maddie.
Kirsten says:
I’ve been reading this blog since Maddie got sick, I was directed here by another blog asking people to give you love and support. I read her whole life, every blog post in your history, and by the time I had finished, she had gone. I think about her every day, I hug the children in my class of toddlers every day just a little longer and tighter and try to make an effort to make their long days at daycare fun and memorable because they are beautiful little people and you never ever know what life might bring. I will never forget Madeline Alice Spohr. I remember.
edenland says:
I love you Heather. xxxxx
alexandra says:
I can’t believe I’ve known Maddie over five years. And you’re right, the shock may slowly go away, but the pain, always right there. I lost my nephew in January, and some days, out of nowhere, I can’t even swallow. I wish you continued peace and I am so happy you have this community to hold you up.
Christa says:
Sending you and your family lots of love today!
Annie says:
I’ve read about you all since the day after Madeline died. I was hosting a MOD walk when a family who was asked to speak told your story. I came home and searched for your blog. As a NICU nurse, preemie stories are my obsession. That day I read the post of when Madeline had the sniffles. The next post I read was the one that was posted after she was gone. I felt nauseous. Anxiety hit me and fear as I thought of losing my children. How would YOU ever survive this? How does anyone? Could I, should this horrific thing happen to me? Would I even want to? I’ve followed you for 5 years. Cried with you and for you, though you never knew. I celebrated when you were pregnant and cried for all of your losses: your aunt, Jackie, your lost baby. I talked to my husband bout you and called you by name like we were friends…even though we weren’t. I cry again tonight reading this. Hurting so badly for you and wondering why in the hell this baby was taken away from you. But I am also smiling through my tears as I think about your posts over the last 5 years. I have laughed until I almost peed my pants (the DC trip to the bathroom). And I have wished and prayed for your family to have peace. To feel happy. To feel Madeline’s presence, though it is only in spirit. Hugs and love to your precious family, friend<3
Bec Waterhouse says:
I can’t believe it’s been five years. I don’t know what to say except my heart is still broken for you and I have not and will not ever forget Maddie.
Lisaj says:
Still following, still thinking of all of you. Nothing but love coming your way.
Lori McBride says:
SuZ says:
Sending love and prayers your way…
Andrea says:
The loss of a child never completely goes away, you carry their memory, their smile, their love with you every day. I watched my grandparents endure the loss of their eldest son, when he was almost 50 to cancer. I carry the loss of my twin son with me daily…It’s been 4 years, and I’m no longer looking at my surviving son wondering what his brother would have looked like, what he would be doing, if he would have the same delays as his twin. This journey of grief, mourning, healing is not easy, nor is it the same for anyone. The anger and pain that used to hold such a place in my heart, I finally had to give it over to God. Give it completely, fully, to Him to not let it consume me. I’ve had to forgive the doctors that failed my boys and myself, my ex husband who didn’t care about our boys, and forgive my body for not carrying my boys to term. You are such a strong woman, a wonderful mom to all of your children. My heart goes out to you, my prayers are with you and your family. Hugs
Maren says:
love to you
karen j says:
i dont know you but i have been reading your blog since maddie was born i will keep in thought today.
Nicole says:
Praying for you and your family, Heather !! Hugs
Nicole says:
Praying to Jesus for you and your family, Heather !! Hugs