In the last eleven months, I’ve been asked countless times what to say to parents who have lost a child. I’ve always answered hesitantly. I am no expert even though I’ve been through it. Every situation is different. So when I give advice, it’s based off of what I know we liked and appreciated in our situation.
I was asked by Daphne for this same advice. The child of her friends, Hunter, had his cancer come back for a fourth and final time. Unfortunately, Hunter passed away this past Monday. I’ve also received lots of emails from friends of Layla Grace’s parents. My stomach drops and my heart starts pounding whenever I hear about a child dying. I know the fear and pain and emptiness these parents now feel. It is so unfair.
My response to Daphne was over eight minutes long, and the video below is just a snippet of what I said:
Loss of a Child: What Do You Say?
Sorry about the auto play, not sure how to fix that.
Since so much of my advice didn’t make the cut, I wanted to elaborate here.
First, people are afraid of what to say, and often say nothing. This is a mistake. Many people are afraid to bring up the deceased child, fearing it will open wounds and raw feelings. But in my opinion the hardest thing is when people don’t talk about Maddie. It feels like she was never here, and this is what is heartbreaking. It is nice when people say, “I thought of Maddie today,” of “I saw a kid in a dress like the one Maddie wore at whatever today.” Or “I miss Maddie.” These things help, not hurt. Make us feel she is not forgotten. Sending a keepsake with the child’s photo or name, things that help her be tangibly remembered are nice. We have received AMAZING things and we cherish everything.
Six years ago, one of my friends lost her father. I was living across the country from her, and I was terrified. I felt guilty that I had my dad and she didn’t. So I didn’t say anything, and I ruined our friendship for a while. I am very lucky she gave me another chance. She has been there for me since Maddie passed away. I have horrible regret about the whole thing – all I had to do was call her and say, “I’m so sorry.”
Religion is a potentially explosive way to comfort. Unless you absolutely know 100% percent the person will be comforted by mentions of faith, don’t go there. Religion is a very complicated thing in the wake of a child’s death, and they may be angry at God or confused as to how to incorporate the death of a child into the religion that they have known to have their best interests in mind. Even someone you know to be intensely religious may be having a crisis of faith in the wake of a child’s death, and could be angered/saddened by mention of religion. Especially stay away from, “She’s in a better place,” or “God wanted her more than you,” or “God needed her more,” etc. I don’t care if it is the all powerful creator of the universe, you don’t tell any Mama that anyone wants her baby more than she does.
So many people hate seeing their loved one in such pain and want to fix it. Consequentially, they start talking about how you have to move on, that you will see them again, the child is with God, it will get better in time, etc. All things they think will “fix it.” Don’t try to do this. Follow the lead of the parents. Discuss what they want…if they go to those places you can discuss those things, but don’t try to steer it there. Sometimes I want to talk about Maddie and the unfairness of it all, and other times I want to hear funny stories or talk about reality TV.
Don’t be afraid to show emotion. Many people feel they have to be strong for their friends, that they can’t cry or show emotion. I don’t think that is true. You can be strong AND be emotional. If tears come, don’t fight them. This shows your friends that you, too, are crushed and sad and lost.
Address the horror. People often worry about addressing how awful the situation is, but the parents want to hear that people get the hell they are in. The parents feel alone when they don’t think people understand how awful this is. Saying things like, “This is the worst thing. I am so sorry and sad that it had to happen to you and your child,” helps.
Food is very helpful. The last thing you want to do when mourning is worry about eating. There are always people around after a death, and the last thing you want to think about is feeding them. Mike and I never would have eaten if food hadn’t been sent to us. A gift of food also tells the parents they are loved.
Say or express something you never have before. If you have never told the person that you love them, come right out and tell them that you love them. If you’ve never held their hand, hold their hand. Give hugs. These expressions mean a lot.
Finally, my biggest advice is to not be afraid to take initiative. We often say, “let me know what I can do,” in a situation like this. Well, I can tell you that Mike and I had no idea what we needed. We were so lucky that we had friends and family rally together and just take care of things. A few came to town to help out. One friend organized food, another cleaned my house, two bought the clothes Mike and I wore to the funeral, one put together Maddie’s slide show, a few organized the reception after her service. I could go on and on. I didn’t have to worry about anything because I knew my friends and family would handle it.
Be there for your friends. Call, email, text. Tell them they don’t have to respond. Let them know you are thinking of them, and their child, all the time. Don’t drop away after the funeral – that’s when they’ll need you the most. Be the kind of friend that you would want to have.
If you have any questions or other advice to add, please let me know below.
InDueTime says:
My heart breaks for you, Hunter’s parents, Layla Grace’s parents, and the parent of anyone who has lost a child. I just can’t imagine what you (they) got through.
I continue to pray for you, Mike, Maddie, and Annie on a daily basis. xo
(On a completely different, but funny note, they have you as Heather Armstrong on the video. LOL Oops!)
.-= InDueTime´s last blog ..The Crazy Shit She Says: Boyfriend =-.
claudia says:
you are an amazing woman. this post brings back some tough memories but thankyou for sharing this
tiff says:
I agree with everything you said.
When my son died I couldn’t remember how to make a sandwich but I had the most wonderful friend who was there every single step of the way for me (for us) it made the world of difference and some friends didn’t even acknowledge him – his birth or death and those people aren’t counted as our true friends anymore.
I hated anyone who mentioned it being God’s way or that it was ‘meant to be’
and I hate it still when people say that Will died to make way for Ivy and Noah.
It’s like a slap in the face every time.
Having said all of that , when I am confronted with loss, I often don’t know what to say, Heather, because I know how I felt when people said things that weren’t helpful and I don’t want to make the same mistakes.
Usually it’s just an I’m so sorry.
Will’s angel day is the very same as your Maddie’s and with his birthday and Angel day fast approaching, my thoughts are often with both of our babies.
.-= tiff´s last blog ..The nest. =-.
Mary says:
People said that?!?! That God was making room?? I’m appalled. My thoughts and prayers will be with your family on April 7th, as well as w/the Spohrs.
.-= Mary´s last blog ..Congratulations are in Order =-.
edenland says:
I love that you do this, Heather. You are such an amazing advocate.
It still takes my breath away, everything you have been through. That she is not there, snuggling with you. I think of Madeline so much mate.
XOXOXOX
Mary Jo says:
This is such a touching video. I am so sorry everyday for your loss of Maddie. I think of you and Mike so often… you are in so many hearts.
=====
Um… btw the video says your Heather Armstrong from Dooce.com I had NO IDEA that you are dooce too!
.-= Mary Jo´s last blog ..Health… {Part 1} =-.
Natalie @ Hope Springs Eternal says:
I’m pretty sure she’s not and that it’s a mistake.
.-= Natalie @ Hope Springs Eternal´s last blog ..I Was On TV, Ya’ll! =-.
Mary Jo says:
Yeah I know she’s not… lol thats why I did the wink-y face.
.-= Mary Jo´s last blog ..Health… {Part 1} =-.
Natalie @ Hope Springs Eternal says:
Oh lord I didn’t even see the winky face. Yah for 5:00 AM feedings, ha ha.
.-= Natalie @ Hope Springs Eternal´s last blog ..I Was On TV, Ya’ll! =-.
Kate @ UpsideBackwards says:
You are so wise. I’m sorry you have to be wise in such terrible things. Thank you for trying to make them easier for others.
.-= Kate @ UpsideBackwards´s last blog ..A day at the fair =-.
cj says:
yes…this exactly. i am so sorry. you are an amazing mom to both of your daughters and a wonderful, wise helper to so many. thank you.
Tammy says:
What a great way to put it. I took 4 paragraphs to say what you said in two sentences.
Sarah says:
We love you and Maddie, and we, your blog readers, do miss her all the time.
That you take the time and work up the strength to talk about this is just amazing.
Also, on a completely different note… the title that appears when you start talking says ‘Heather Armstrong, dooce.com’. Maybe the momversation peeps could change that?
MASSIVE virtual hugs coming your way, and a little kiss on the head for Annie.
Natalie @ Hope Springs Eternal says:
This is wonderful.. Great video. My heart breaks for anyone who has to go through this. No parent should have to bury their child.
However.. The video labels you as Heather Armstrong from Dooce. You’re not Heather Armstrong from Dooce, are ya?
.-= Natalie @ Hope Springs Eternal´s last blog ..I Was On TV, Ya’ll! =-.
Ella says:
All very true Heather. After I lost my little one I was also told “shes in a better place”
Its an awful thing for anyone to say.
And I have also lost friendships because people felt too awkward around me because they didnt know what to say – which after losing your child and husband is the last thing you need.
But I agree that the best things are those you dont realise have been done till after. My friends packed my fridge with groceries, fed my dog, cleaned my house while I slept, paid my bills for me – my husbands workmates even kept my yard looking good. Its hard to think about anything else when you are grieving like that, so its nice to have those necessary chores taken out of you hand with no decision required of you.
and as for being told to move on? i seriously think the people who say that have no idea what real loss is like…and you know what? i really envy them.
.-= Ella´s last blog ..Out-running the pain. =-.
catherine lucas says:
I have learned through sad experiences to say to parents who loose their child or to anyone who looses a loved one that I have no words for them. I tell them that I don’t know what to say, as it is the truth… I often DON’T KNOW WHAT TO SAY but to say that I have no clue…
Long ago I read a story in the Readers Digest about a family that lost a mother, and the neigbours picked up the shoes and cleaned all the shoes for the funeral. That story has always stayed with me…
Cleaning shoes can be a very important thing to do… So can saying that you don’t know make a difference in my humble opinion… I guess it is better then the silence…
.-= catherine lucas´s last blog ..Leaving Silver City… =-.
Lynn from For Love or Funny says:
I agree with you about the “God needed her more than you did.” Nothing could be farther from the truth. A loving God wouldn’t rip a child away from her mother. Instead, I believe that a loving God actively seeks to send help and love when it is needed, especially when a child dies. Hopefully, we are the angels that deliver help and love here on earth.
.-= Lynn from For Love or Funny´s last blog ..Peaceful evenings =-.
Cristie says:
Perfect. I am sorry you know so much, but I am thankful that you continue to share it with us.
J. says:
When my mom’s friend lost her teenage son to a peanut allergy reaction, friends and neighbors kept telling the mother how it would all be OK. My mom finally told them to stop, and that it would NEVER be OK, and that it wasn’t comforting to essentially be told “you’ll get over it.” The lesson I learned was that it can be OK to say, “this is just awful,” and that the comforter need not feel driven to try to set things right. I don’t know if I always say the right thing, but I definitely learned something about the wrong thing to say that day!
I think I think about Maddie every single day.
.-= J.´s last blog ..Sexy Slippers and the Pipsqueak Birded =-.
amanda says:
Wow, you have no idea how incredibly helpful this post is. Thank you so much for this.
xo from CT,
Amanda
.-= amanda´s last blog ..sprung. =-.
Anna Marie says:
Thanks for this Heather. I hate so many of the trite things people say like “she’s in a better place”. Utter crap.
I think of Maddie all the time, and my heart aches for the ache that I know you and Mike feel. Thanks for continuing to share her with us – and for sharing sweet, sweet Annie with us.
Seraphim says:
Heather, you are so beautiful and so is your family. Thank you for this video. Love from across the sea xx
Smoochagator says:
This is excellent advice, Heather, and I think it applies in many situations where a friend is grieving – loss of a loved one, divorce, illness. Still, I can’t think of anything more terrible than a parent having to say good-bye to a child. There’s no way to “fix” it, as you said, but actively “being there” for a friend can sometimes make all the difference.
.-= Smoochagator´s last blog ..Emily the Blogger =-.
Lauren says:
Thank you for posting this, Heather. Many of us can not even begin to fathom the horror of losing a child. I know my heart aches for anyone who has suffered such a terrible loss and though it’s something that weighs heavily on my mind for a long time, I never know what to say or when to say it. So thank you…
I’ve never met you, Mike or Maddie and yet I think of her… people all around the world know who she was and will always remember her.
.-= Lauren´s last blog ..Happy Birthday Jeffrey! =-.
Lindsay from Florida says:
Since it helps you in some small way to know that Maddie is thought of constantly, that’s what I’m going to say today. I’ve never met your family in person, and I think of that amazing little girl all the time: when I saw a commercial the other night with Abby Cadabby; when there was a pretty purple sunset here in Florida (or sometimes even when I’m deciding what to wear for the day and choose purple); when the March of Dimes is mentioned. I share her story with others, most recently some co-workers who were taken in, of course, with her eyes and smile. Not a single person who reads this blog is ever going to forget Madeline.
My heartfelt thoughs to Hunter’s and Layla’s families!!!!
Lindsay from Florida says:
That should be “heartfelt thoughTs.” And love.
I’m sorry, it’s early!
java@nevergrowingold.blogspot.com says:
I can’t even begin to imagine what it is to loose a child….its not the way its supposed to be…we aren’t supposed to bury our children…but God sometimes has other plans…other reasons….unexplainable….but he has his reasons…yes its “not fair”…but there are reasons. Don’t ever forget our lost loved ones for they are just missing from this earth and never removed from our hearts and minds.
.-= java@nevergrowingold.blogspot.com´s last blog ..ALL CLEAR: FeedMedic Alert for NeverGrowingOld =-.
Abigail says:
I can’t speak for Heather, but saying God has a plan sounds like it falls in the potentially explosive category of things to say she mentioned in her post. Do you really think someone who has just lost their baby wants to hear that God planned for their child to die? Especially from someone whose children are alive and well? I think steering clear of those kind of statements is smart.
java@Nevergrowingold.blogspot.com says:
Heather said not to say that “God wanted them more”….I didn’t say that and thinks its unfair for you to say that what I said falls in the “potentially explosive category of things to say”….I also didn’t say that God planned for her child to die…please next time be sure to read clearly before you give a hurtful and an uncalled for response.
.-= java@Nevergrowingold.blogspot.com´s last blog ..ALL CLEAR: FeedMedic Alert for NeverGrowingOld =-.
Kim Wencl says:
As a mother who has lost a child I completely agree with everything you have said.
There is nothing that anyone can say or do that is going to make things better. All they need to do is show up, say how sorry they are and give hugs. Then just step in and do what you think needs to be done … asking permission really isn’t necessary.
The most important thing is to continue to talk about your child. We talk about Liz all the time and I think our families didn’t know how they should handle that in the beginning, but they took their cues from us.
Now everyone talks about Liz – whenever we have a family gathering – there is at least one good “Liz story”. It makes it seem like she is there … and I believe she is.
.-= Kim Wencl´s last blog ..Yesterday – a day of mixed emotions =-.
charlane says:
We think of Maddie everyday.
.-= charlane´s last blog ..Proof Of Cake =-.
Leigh says:
A very helpful, honest and eloquent post. My heart breaks for these families. I can’t imagine the agony.
What you said about the amputee and not asking when his leg was going to grow back but rather, how is he doing learning to walk again. That was great.
sheena says:
This helped me a lot- a friend of ours daughter just passed away In january. They have a blog too..
http://blog.cjstuf.org/
Stacey says:
Your advice is great… it’s such a difficult situation and there really is no right answer, so any help is great. I wish I had seen this when we lost Connor because it was so new and scary that I didn’t know what I needed, but what you say is exactly what I figured we needed in the end.
.-= Stacey´s last blog ..Spring Weather! =-.
Heather says:
I saw a March of Dimes box the other day and looked in my pocket for change to toss in. I only had a $10 – a bill that is purple in Canada… I thought of Maddie and put it in the box
Thank you for sharing the words that those of us who have lost a child can’t say outloud sometimes.
~Heather
jen says:
Oh, Heather. I just love you….thank you for expressing what others have always thought but are afraid to say.
(((Hugs))) from here!
.-= jen´s last blog ..Wordless Wednesday- cousins =-.
Jenn says:
Hi Heather,
Thank you for your blog! It was helpful and it also brought me a lot of solace b/c it let me know everything I have done and said to those who have been through the worse situation of their lives.
It takes a lot of courage to say all you did and too be so honest. I’m so proud of you & I know Maddie would be to.
Thinking of you, Mike, Aniie & Maddie…
Your Friend,
Jenn
Jen says:
I don’t comment on here often, but a very good friend and co-worker of mine lost her 16 year old daughter to a motor vehicle accident this winter. We put together a “one word” book on how we would describe Meghan. The catch was, no two words could be the same. We have over 300 words that we made into a book along with pictures of the people who said them. The words are just awesome~from Abercrombie! to Vivacious! (and some of them are self-made words, but who cares; They make her laugh) My friend tells me she often just pages through that book and can see how the world saw her baby.
cindy w says:
That might be the first Momversation video that made me cry. Wow. Well said, Heather.
.-= cindy w´s last blog ..getting in the game =-.
Lindsey in the STL says:
Your words hit home. I lost my Dad to cancer almost 6 years ago. Where has the time gone? It’s amazing what people don’t say….and what people do say. Funerals are hard, especially when you’re not sure what to say. Your “advice” was wonderful. I wish that more people would tell me the good about my Dad. He was far from perfect, but I’m sure if you think really hard, you can find something good to recall about him!
Each morning when I watch Sesame Street with my son, we are reminded of how much you said Maddie loved Abbey! I can see her big eyes and inviting smile each time we watch Abbey! I feel like I have met Maddie. Thank you for sharing her with me!
.-= Lindsey in the STL´s last blog ..My Redeemer Lives =-.
Ashley says:
I think of Maddie every single time I see Abbie, too. Makes me smile.
Cinthia says:
I’m glad you also brought up how this still affects you because I don’t know what to say about Maddie, except that I still wish I had had a chance to know her, and I miss the little adventures you had with her, I admire Maddie’s strength, the situation will forever be unfair and I ill never forget Maddie, as long as I live.
Hugs to everyone, the people who read this site included, because you’re all wonderful.
Sarah P says:
Maddie, although I never met her, always will be in my heart. I will never, ever forget her or your family. That’s because of your writing.
Jara says:
As a purely practical matter, can I suggest that if one is close to the parents offer to be the organizational person. Then when “what can I do” is said, all the parents have to say is “call my friend Jara, she is getting that together”. The pareants can then make any specific requests to the organization person, and the org person can also think on their own (with others) about what the parents might need that has not been requested…food, cleaning help, shopping, rides to airport for out of towners…anything.
Valerie says:
Thank you so much for posting this. The timing is amazing. My best friend lost her 19 month old baby very suddenly and unexpectantly on Sunday and I am currently at her house helping. Its so hard to know what to do or say, and these tips are so helpful and encouraging.
Lisa says:
I think it is so amazing of you to share this information. It is hard to know what the right thing to say and do is. I try to do and say things that I feel I would appreciate. When my father passed away no one talked about him to me, because they were afraid of upsetting me or thought I didn’t want to talk about it, that hurt. I wish they had just sat down and talked to me about him, mentioned his name, shared a memory, etc.
I think about Maddie everyday. Maya’s calls her Maddie’s Monster “Madmie” (her way of saying Maddie) and she plays with her everyday, it breaks my heart and warms my heart all at the same time.
Love and hugs sweet friend.
.-= Lisa´s last blog ..Remembering Layla Grace =-.
Katie C. says:
Thank you SO MUCH for this…. After I lost my baby last year, I felt like the world had fallen in on me. And while I know people were trying to say what they thought I needed to hear, I wanted to scream and punch someone whenever I would hear “This is God’s plan”. How the HELL does anyone know what God’s plan is? And the worst one was “Something just wasn’t ‘right’ with the pregnancy. It’s for the better”. Um, yeah – okay. So if my baby was imperfect then it was better for her to die? I know what people mean, that you don’t want to see a child suffer, and that maybe it was the best thing that my baby went to Heaven before her first breath, but that was NOT WHAT I WANTED TO HEAR after losing my child. And it is almost as though people are on Auto-Play with what they say – like there’s a class on what to say to people after their loved one dies, only that class teaches everyone ALL wrong.
There were several people who knew exactly what to say. I have a wonderful friend who just sat there and listened and ask me questions, politely, and cried with me. She cleaned my house so when I came home from the hospital I didn’t have to worry about a mess. It made up for the people who didn’t know what the say, who said the wrong things, or who didn’t say anything at all…
I have had people say to me, “It’s been 6 months, you need to get over it”. I will never get over it. I know that what I experienced is far different than what you, Heather, went through, or what Layla Grace’s parents went through. I didn’t get to raise my child and get to know her, but I knew her in my womb…. And to think that I could just forget her, just makes it all seem even more senseless.
Your words of wisdom mean SO much to so many, and I wish I could reach out and hug you right now. I wish I could hug away all of your pain after losing your precious Maddie. I wish I could sit and cry with you and tell you how much Maddie meant to all of us.
I live within miles of Layla Grace’s family and went to her benefit the other night. It is amazing the outpouring of love, faith and compassion so many show in this time of sorrow. I look forward to Saturday, for her Celebration of Life. I will get an extra balloon during the balloon release just for Maddie.
I am so sorry to hear about Hunter… sending prayers to his family!
Mary says:
Oh! I am so sorry to read about your loss. I loss my nephew in the same way, in Nov, the day before he was due to be born. I think it must have been some old-school thing to tell mothers to just move on when there they sit with empty arms that are aching to be filled.
I’m sorry that you didn’t get more time to create more memories of your daughter, but I know that the memories you have of her in your womb are just as vivid. I am so glad we got to connect with my nephew while before he was born~to play with him & thump back & forth with him: these are precious to us all now.
Thinking of you with love…
.-= Mary´s last blog ..Congratulations are in Order =-.
Nikki says:
{{{HUGS}}} and LOVE.
Thank you, Heather. This was delivered right on time.
XOXO from GA,
Nikki
Carmen says:
Heather, you’re doing an amazing thing here! I loved the video. It’s such a tough thing and I am so very sorry. What I find interesting is what you said are the really worst things someone can say. What I find interesting about this, is how the intentions of a person can me pure, when saying for example “she’s in a better place”, or some of the other things you mentioned, and yet hurt the parent who lost a child by saying that. It’s tough because I wonder, how can a person that hasn’t gone through this be expected to say the perfect or “right” thing? That’s why I can almost understand your reaction when your friend lost her dad. Because you didn’t know how to react, just like I wouldn’t know. But what you did today (with this post) really helps in achieving an understand of what to say/what not to say. I really admire you and enjoy reading your posts and seeing how your family is doing.
Hugs
Carmen
Carmen says:
in achieving an “understanding”. Pardon the misspelling.
Mary says:
Another thing I absolutely HATE is “things happen for a reason.” NO THEY DON’T!!! I used to feel that way until Jim passed away right after Hadley was born. He was diagnosed with pancreatic cancer the week before her due date and managed to live for two weeks after her birth. Someone tell me what reason THAT happened for?? So if that’s one of the things that’s been told to you or any of your family, I apologize on behalf of the person who said it. To echo Ella, these people have no idea what true loss is like.
The other suggestion I have is, don’t stop giving the support, doing all those things, and expressing sympathy after one year. In a way, the second year has been harder for me. Someone told me, it’s like losing a leg. In the first year, it hurts and everyone notices and they all want to help take care of you while you’re figuratively in the hospital. But year 2 is like rehab. Your leg is still gone but now you’re in rehab and there isn’t all that help. The hospital is gone, the caretakers are gone (figuratively)…all that’s left is you without a leg being forced to go to rehab. (That made a whole lot more sense to me when she said it to me than it does when I read what I just wrote. Sorry.) My point is, everyone remembers to help in year 1; not many people even think about it in year 2. I guess a person is “supposed” to be “over it” by then…in the opinion of those who have never been through it.
Sorry for the semi-rant. This post just hit so many similar feelings for me. I’m so very sorry that any of us have experienced a loss that provides us with perspective on this subject.
To end on a Maddie note: I walked with Moosh’s team in Indianapolis last year for MOD and I have one of the purple cups. My nearly 2 year old daughter uses it in the bath each night. I always think of Maddie when I see it and I send a little positive thought your family’s way. I will be thinking of you all as we approach April. April 6 is my loss anniversary, so I will be virtually holding your family’s hand as we move from April 6 into April 7.
Much love from this stranger.
Laura says:
I hate ‘everything happens for a reason too’. It is so infuriating!! NO reason can justify the loss of a child. I know people who say that mean well, but it might be one of the worst things to say.
You are so right about being there for year 2 (and beyond) also. I sometimes think that our bodies go into shock to get through the first few months, or even first year, and when that shock wears off is when we need the support of friends and family the most.
Heather (and Mary), our thoughts are with you always. Thank you so much for sharing your insight and allowing others to comfort those in need. You have no idea how much you are helping all of us help those who are grieving. I wish no one would have to experience what you two have gone through.
Lisa @ lists in my pocket says:
This was great advice Heather! So often people are afraid of saying the wrong thing, but they underestimate the power of just being there. My heart goes out to Hunter and Layla Grace and their families.
.-= Lisa @ lists in my pocket´s last blog ..Gap is Green =-.
Sarah says:
That is well written. Sometimes I wish I could print these things out. I did one time and that didn’t seem to make a difference.
On March 9, 2009, we lost our son. I was pregnant and he got a knot in his cord. It happened so fast, I went to bed, he was kicking away, I woke up in the morning and he was dead. I knew b/c the morning was his favourite time, when our girls hopped into bed and talked to him, poked him to make him move.
Most of our family didn’t know what to do or say. This caused a lot of anger in me. I healed from that and forgave.
Fast forward to his 1 year birthday and my darling mom calls. That is it. Not my brother, sister, BIL, dad, MIL/FIL. I suppose dead children don’t have birthdays.
Once again, I am seething in my anger and hurt. I don’t know what to do.
Tammy says:
I’m sorry for your loss, Sarah.
Mary says:
I’m so sorry for your loss. Your son was & is a part of your family. I know you will never forget him & will observe his birth each year. This is not weird: but necessary. I’m so sorry no one called you on your son’s day.
Sending you love.
.-= Mary´s last blog ..Congratulations are in Order =-.
Sarah says:
Thank you ladies
Steph says:
Great advice. I wanted so share another perspective from a friend of mine who recently passed away. She was 36 years old with a 5 year old son and when she realized her terminal cancer was in it’s final stages, she shared some wishes. She was fiercy protective of her son and came up with an entry on her caringbridge site on what to say and what not to say to her little boy after she passed. One of the most important things she said was “do NOT tell him that I am ‘in a better place’. I would never want him to think that there is a BETTER place for me than right by his side or that I CHOSE to go to heaven rather than watch him grow up. It IS ok to tell him that while I believe heaven is a great place, I would always choose to be here with him and his dad. I would never WANT to leave you, you are my pride and joy and I would not choose to leave this early in our lives. It IS ok to say that heaven is a nice place and that I am at peace. I thought it was so thoughtful of her to think ahead to what her little boy might be told and how to avoid some of the conflicting feelings he might have.
dawn says:
I cried reading this – It’s so awesome what she did for her boy.
Tammy says:
I cried too. What a smart mommy.
Mary says:
Yup: crying! What an amazing mom. What a legacy she left for her son!
.-= Mary´s last blog ..Congratulations are in Order =-.
Sarah P says:
And maybe sometimes, you don’t need jerks like me using CommentLuv and linking to completely inappropriate and insensitive content.
I’ve spent nearly the entire time since I posted trying to get rid of it, and I don’t know how.
I’m deeply sorry. I apologize.
Michelle Pixie says:
Heather, Thank you for this… My heart breaks every time I think about the loss of these babies and how lucky are we to have you to help guide us through what to do and say. This was definitely an AH-HA moment for me.
Laura says:
Me too!!!
Mary @ Holy Mackerel says:
So glad you posted this, Heather. Most people really don’t know what to do or say. I think this will really help everyone.
When we were going through our son’s cancer treatments, I didn’t hear from most people I considered my friends. I’m assuming they just didn’t know what to say or do, but I was so angry and hurt, and it took me a very long time to get over it.
.-= Mary @ Holy Mackerel´s last blog ..Scoop on the Poop =-.
Michele says:
Ugh. Where do I start? I always thought I was saying comforting things to you. But who am I…just a stranger from Omaha. I take great comfort in Christ and always thought to share His love with and for others. I never once thought how my “comfort” would come across. I’m so very sorry if I have ever hurt your heart. Not my intention. Ever. I see now through your honest advice how things may or may not help someone cope with the loss you and your family have with Maddie. I can’t tell you the number of times I have cried reading about your Maddie Moo. I can’t tell you the number of times I have asked God to get you through the day. Please know, this stranger, knows not of the immense pain you are feeling..be she DOES love you and yours and keeps you very close to her heart. I’m broke, unemployed, and lack any financial ability to give to Friends of Maddie. All I have right now is prayer, hope, love and my words Heather. But I tell you what, when I get back on my feet…Maddie’s cause will be assisted by me with everything I can spare. I’m not there to hug you and yours but here miles away I am in spirit.
Jane says:
This poem, can go nicely with a note:
i carry your heart with me
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear; and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than the soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
i carry your heart(i carry it in my heart)
ee cummings
rachel cortest says:
You are right on in my opinion. Any time someone says to me or any of my TCF (The Compassionate Friends) parents something like “He is in a better place”, we say, “His place was with us. He was a child” I wish that I had the faith that many parents seem to have because I do know a mom that believes that her child is in a better place.
I remember people asking me what they could do and I would say, “Have us over for dinner in a month or take us out” but so many people who were there in the beginning (and over 200 came to the hospital) later on could not deal with it. I think that when an eighth grader takes his life society does not know how to handle it. As a college professor, I try to educate my students about grief and death.
If anyone is reading this, one thing that really upsets us as parents of a child who died by suicide is when we hear “committed” suicide.
I guess what people have a hard time with understanding that after four years or fifty years, we parents still want to talk about our child. We will miss our child until the day we die. We love to hear his name. We have a permanent bruise on our soul. It does not matter how many children we have, there will never be another Maddie, Layla Grace, Jenna, or Tomás.
Thanks for writing this blog to help people understand. Do you know the music of Alan Pederson?? It has been helpful to me.
But Annie makes us smile as does my two year old Cleo (grandbaby). Life goes on but the joy is never quite as joyful.
dawn says:
Would you tell me more about how “committed” is a painful word for you? I don’t understand – but I would like to ….
Rachel Cortest says:
Thank you for your question. “Committed” is a word used with crime., Suicide is not a crime. It is depression, bipolar disease, or terminal mental illness. In my yahoo group Parents Grieving Children of Suicide, it is the common opinion of moms that we hate that word. Our children were not criminals. As my son wrote, he did not want to die but he did not want to live either. We are losing too many young people to suicide and we need to educate the kids in school but the schools are afraid of the subject. Anyway, thanks for your comment and question. It means a lot to me.
dawn says:
*that* makes sense to me – I hadn’t thought about the link to “committing a crime” – thank you
Mary says:
Wow! Thank you for sharing this & for explaining this. I never makde that connection before but now that you’ve pointed it out, it makes so much sense. I’ll try to never say “committed” again in reference to such a death.
I am so sorry for you loss.
.-= Mary´s last blog ..Congratulations are in Order =-.
Brie says:
Thanks for this. This was so excellent information. I always freeze up in situations where I don’t know what to do. I am going to try to remember your words.
And thanks for writing. I love reading you everyday.
Summer says:
I agree with everything you posted. When we lost our son we also lost a lot of friends. People didn’t know what to say or how to act. Our son was stillborn, so slightly different, but the pain of losing a child is the same I think no matter how old they are.
One of the things that hurt me the most is when people would say things like “You can try again” or “You’ll have more children”. Some people actually said maybe it was God’s way of saying we weren’t ready. I didn’t want people to try to explain my loss or to try to appeal to my sense of logic. There is nothing logical about losing a baby. You can never make sense of it or get closure. It happens, it sucks, and it breaks your heart forever.
Anyway, sorry for the rant. Love the post and the blog. Maddie was so beautiful and everytime I see something purple I think of her!
.-= Summer´s last blog ..Valetine Schmalentine =-.
Mary says:
OMG! I so agree with you! Who says that kind of crap to a parent!!!! May I please aplogize to you on behalf of anyone who said such things to you!
.-= Mary´s last blog ..Congratulations are in Order =-.
Sue says:
I came across this recently, Heather,,,,,,,
Please Ask by Barbara Taylor Hudson
Someone asked me about you today.
It’s been so long since anybody has done that.
It felt so good to talk about you,
To share my memories of you,
To simply say your name out loud.
She asked me if I minded talking about
What happened to you…
Or would it be too painful to speak of it.
I told her I think of it every day
And speaking about it helps me to release
The tormented thoughts whirling around in my head.
She said she never realized the pain
Would last this long…
She apologized for not asking sooner.
I told her, “Thanks for asking.”
I don’t know if it was curiosity
Or concern that made her ask,
But I told her, “Please do it again sometime…
Soon.”
Jennifer says:
I am so sorry that you have had to experience the death of your child, but I also very much appreciate hearing your point of view on the best way for an “outsider” to handle it. Your words are very comforting. Maddie and Annie are very lucky to have you & Mike as parents. Jenn
maya says:
I love you and I miss Maddie every day. So many things remind me of her. I wish that my camera had never been lost… those pictures are just priceless now…
I adore you and mike.
I want to be like you when I grow up.
.-= maya´s last blog ..I Remember =-.
Andrea says:
Thank you for sharing that information. I have a SIL that passed away Feb 3. at the age of 30 after a almost 2 year battle with pancreatic cancer. When I see her parents I am at lost of words because I know realiity is still settling in and I hurt so much for them. Now I know they would probably love to hear of the memories I have of their daughter.
This pass weekend I had my niece and nephew (my SILs kids) over for a sleepover and was unsure if I should bring up their Mommy! My niece age 11 broke the ice and started talking about her Mommy as soon as she got in the car and talked about her the rest of the night. Knowing that she loves to talk about her Mommy brought so much comfort to my heart.
I love your Maddie’s big beautiful smile!
Leslie says:
Heather, thanks for putting all this out there. I think it is so important for people to know. I remember when my best friend lost her brother. He was 23 years old and it was a suicide. She called me in the morning and I came over that afternoon, with food and to just be there with the family. And no one had called, no one had come by. They did not know what to do or say and thought the family needed space. What the family needed was support. People are so afraid to not do the right thing that they do nothing at all.
I can’t imagine your grief and your sadness. Thank you for being willing to share your thoughts. They are going to help so many people.
P.S. I remember your Maddie, even though I never met her – thought of her just last night when I got on the bus next to a lady carrying a gorgeous armful of purple irises in full bloom.
MommaLionessMichele says:
Truly touched by this post, as I am by most of your posts. Especially by the idea that talking about your deceased child is something parents want to do. It’s such a simple concept, but so important. My aunt lost her son 5 years ago, and I make an effort to talk about my cousin when I see her, and I feel like others recoil when I do. But my aunt is happy to talk about Eddie, even if it is through tears. Thank you for the information you provided. I’m so sorry it came from your own experience.
I am seeing March of Dimes fundraising alot these days, and think of your family and especially Maddie each time I do.
.-= MommaLionessMichele´s last blog ..Kyle Gets Cozy =-.
Trisha Vargas says:
You are amazingly strong Heather!
(((HUGS))) from Florida
Denise says:
Very well said. After the loss of our Elizabeth Ann, people tended to stay away…we felt very isolated….friends who I thought once were close friends didn’t come around. I knew in my heart that they just did not know what to do, or say…so they stayed away. Not all of them, but many of them. It was hard to go thru…and even harder to get back to the way thinks were, when they were never going to be the same again. You have it so right – exactly how I felt/feel. I am a believer, and I never experienced anger towards God, but I sure just didn’t understand why us, why we had to go through and experience this. Why my two other daughters had to experience the joy that came when they found out they would be sisters AGAIN, and then the loss of that joy when she died….after 8 years…my youngest daughter just came to me and said, “Mom I need help with this, I can’t do this anymore” – the loss of her sister 8 years ago forever has changed her…we just completed therapy together…something I wish I would have done sooner and so sad that I didnt’. But you think you are strong enough to handle this…I mean our family has always been strong! I was so wrong. I’m thankful she came to me – so thankful. I just want to say thank you for posting this – this helps me after 8 years to SEE my exact FEELINGS in WORDS! thank you for sharing. You and your family forever has changed many lives – thank you for sharing your two beautiful Gifts with us, Maddie & Annabel.
J says:
Thank you for sharing this.
.-= J´s last blog ..Top of the page =-.
dawn says:
More advice – do what feels right to you – I read a lot of comments of “thinking of you, sorry for your loss, praying for you” etc – and those are FINE comments – they just don’t fit my heart right – so when someone loses a parent I tell them it is a sucky sucky club to be in and I’m sorry it was their turn to join. (okay fine, sometimes I tell them it is a shitty shitty club – depends on the person.)
My Dad was a mortician/funeral director/coroner all my life …. Or I guess all my life that he was alive for (and there was an unexpected gut punch as I realized again he’s not here for “all my life” anymore – grief f’ing sucks a duck) – so after Maddie died I finally emailed Heather and said “here – this is my background … this is what I’ve seen … nothing you can tell me will scare me … cuz I’ve already seen it, smelled it, heard it.” I knew I could be that outlet if she wanted.
Mean what you say – if you are saying something because you think it’s the “right” thing to say – meh, you can do better.
If you are scared to death of hurting someone then tell them exactly that – ‘I care so much but I’m afraid of doing the wrong thing and making something worse.”
I’m no expert – but I figure I’ve done a few of these things right since Heather hasn’t junkpunched ME in the last year
linzandkenzsmommy says:
I love what you said here, and it is so awkward when you do not know what to say.
I sent you a baby shoe charm a while back with Maddie’s initials engraved on the back…and after reading this, I am so glad I sent it!
Think of you, Maddie and your family often…wishing things could have been different!
xo
Michelle
.-= linzandkenzsmommy´s last blog ..Sympathy Pains =-.
AmazingGreis says:
Thank you, Heather, for the information. I haven’t watched the video yet, my work blocks video, but the other info is very helpful. With Layla Grace’s passing this week I’ve been in the OMG I have no idea what to do or say boat. I just know I want to be there for my friend now and anytime that she needs a friend or a shoulder or ANYTHING.
Thanks again, and hope you know how much I’ve been thinking about you, Mike, Maddie & Annie the past few days as well. This week has brought back lots of the memories and feelings from last year. XOXO
.-= AmazingGreis´s last blog ..Wordless Wednesday – Twitter Trends… =-.
MamaCas says:
The phrase “she’s in a better place” makes my blood boil. You’re absolutely right….the best place for your daughter is in your arms.
I wish I could tell you how often you are in my thoughts…but I can’t count that high. Hugs to you all.
Maria says:
Soon after I read your blog post this morning, I received this email from a good friend:
A friend of a friend of mine lost two of her three children to childhood leukemia and is now hoping to build a home as a respite for grieving parents in similar situations. She’s in the running to with $250K from Pepsi. You can vote once a day until the end of the month.
http://www.refresheverything.com/ErinsDream
The timing felt like too much of a coincidence, so I thought maybe I should post it here.
Thank you for giving us a better idea of how to help support our friends who are grieving. The right words are always hard to find, but the ‘actions’ you suggest are really helpful.
Laura says:
What a great idea your friends have. I will continue voting for them.
It is inspirational to me that parents that have lost a child don’t just shut out life- because obviously if they curled up in a ball and never got out of it, that would be understandable after what they have been through. Instead, parents like your friends, and Heather and Mike, and so many others, honor their children by making a difference in the lives of children and families that are in situations similar to theirs. It is truly amazing. I can’t even fathom having that kind of strength and grace.
Heather, thank you for what you write today and everyday. Your daughters are so lucky to have a mommy like you!
Maile says:
It’s interesting, the reason people worry about saying the wrong thing is, sometimes they do. I remember my father getting really upset by some well-meaning comments when my mother had cancer. But still, I think you’re right – risk it. Obviously try to think about what you say before you say it to the person, and if your heart really is in the right place, they should feel that, even if your words are clumsy.
Laurie says:
I lost my husband 5 years ago. I was in such shock through the whole wake/funeral process. I agree that if you’re in doubt, just say, “I’m so sorry”. A simple “I’m sorry” is so much better than saying nothing at all. There is at least one friend of ours that never made contact, no call, no card, nothing, and it still bothers me now.
I remember at his wake, a cousin of his, whom I had never met, approached me with her business card (real estate) and said something to me about home purchasing! Really? You really want to make a sales contact with me NOW???? I think that’s one of the worst faux pas a person can make. FTR, I just kind of looked at her like she had two heads and she went away.
Laurie says:
This is such helpful advice, thank you so much. I am guilty of doing a lot of your “do not do’s” and I’m very thankful to have honest advice that will help me comfort others who are mourning.
I’ve said it before, but you are an amazing woman, Heather! I never met Maddie, but (sorry if this is a little strange to hear, but) I miss her, mostly because I can see how beautiful she is – inside and out. My heart goes out to you and your family and I’m so thankful that you have Annabel to have new advertures with! She is so precious!
Kelly says:
Heather, I read regularly but never comment. However, I’m sending this post to my sister, and had to let you know. I know, that at some point in the next few years, I will lose my son. I know, that no one will know what to do. I’m just going to ask her to keep this, to save it for when it’s needed, to share with those around that want to help. Thank you for writing this.
Mary P says:
Kelly, I am so sorry about your son. I can’t imagine how difficult it must be, knowing that you will lose your child. {{{{Hugs}}}
Jenn says:
It never makes sense to me when I hear of a wonderful little child; like Layla or Maddie, passing. I struggle with coming to terms with how it is possible that these beautiful children whose lives have barely begun, have had their lives ended? I don’t think it will ever make sense.
Heather, I really wanted to comment after reading your post today. Although I don’t have any children; I often care for my sister’s little girl. I read your blog every day and just recently my niece climbed into my lap as I was reading and she pointed to a picture of Maddie and squealed; “Baby!”. I wanted you and Mike to know that I think of Maddie daily; especially when I see my niece with her Abby Cadabby doll.
Laney says:
You are an amazing advocate, Heather. Thank you for this.
And, just so you know, I think about Maddie often. She lives on–through you–in all of us.
.-= Laney´s last blog .."It was one of those March days when the sun shines hot and the wind blows cold, when it is summer in…" =-.
Kelly says:
Heather I feel like I type the same thing to you all the time about my gratitude to you and Mike for the grace you extend to your readers.
I agonized over what to type to you when I first learned about Maddie.I felt that if I said something (me, a stranger to you), you might feel that I was just sort of “rubbernecking”.
What right did I have to say a word to you about your daughter and this terrible, unimaginable loss? But as I continued to learn more about Maddie, as I read more of your blog, and most significantly as I saw the devastation you and Mike were willing to talk publicly about, I learned to get over my personal discomfort to say what my heart was saying every time I thought about you and Maddie.
Alas, I do not know Maddie except through your words and photos, but I love her. I love the beautiful, little family you 3 had made together-so hard won, so full of joy. And I love you, her parents, so extraordinarily generous and full of a kind of grace that is so painfully wrought, yet so meaningful.
Thank you for sharing your experiences and advice in this momversation. I will always wish you were less enlightened about the death of a child and had both of your daughters in your arms.
I remember Maddie everyday, smile when I hear Single ladies, and send all of Maddie’s family love.
.-= Kelly´s last blog ..Not You Again!?! =-.
Candace says:
Bawling my eyes out over here No Mother should ever go through this. I just wanted to say that I miss your Maddie posts and Maddie pictures. I like when you post old pictures of her.. It brings a smile to my face.
(btw, I am not trying to take away from the Annie posts, of course I love those too!)
.-= Candace´s last blog ..Just let her do it! =-.
Molly says:
Heather, I think of Maddie every time I see a little girl in a yellow dress. The picture of Maddie in her yellow dress with her beautiful golden curls is etched in my brain forever.
RockyMtnMom says:
The following poem was posted on a friend’s blog…she lost her baby boy after just 23 hours…
The Remembering
Go ahead and mention my child,
The one that died, you know.
Don’t worry about hurting me further.
The depth of my pain doesn’t show.
Don’t worry about making me cry.
I’m already crying inside.
Help me to heal by releasing the tears that I try to hide.
I’m hurt when you just keep silent,
Pretending he (she) didn’t exist.
I’d rather you mention my child,
Knowing that he (she) has been missed.
You asked me how I was doing.
I say “pretty good” or “fine”.
But healing is something ongoing
I feel it will take a lifetime.
~ Elizabeth Dent ~
Love and hugs to all of the Spohrs and the many others who have lost a loved one. My heart breaks for you and I know, through my own loss, that nothing anyone can say helps, but NOT saying anything actually HURTS.
Thank you Heather for taking the time to educate others on how to interact with their friends after such a devastating loss.
Miriam says:
Wow, I couldn’t even read all the comments, my heart breaks to hear of so many parents who lost their children.
Heather, thank you for continuing to share your heart and soul with us. Maddie continues to touch lives through you, and your words.
Krista says:
Its always hard to know exactly what to say to someone who has lost a child. My brother died, it will be 10 years the end of this month. It was hard for me to watch my parents go through this. A year ago a family friend lost their little boy the mother asked my dad how do you get rid of the pain my dad replied, “the pain never goes away it just gets a litlle easier to deal with. We miss my brother terribly this month is especially hard cause its his birthday to. My heart goes out to all those parents who have lost a child.
Stephanie says:
Thank you for writing this. I can only imagine how hard this must be for you and any mother who has lost a child.
My friend lost her baby due to an enlarged heart when he was only 9 weeks old. I think I worry too much about bringing it up to her. I will now because I know she must still be hurting…
And thank you for reminding us that no one should ever say that your child is “in a better place.” Because having my own baby now, I would sucker punch them. No where is better than in my arms…
Crying for you…
Megan says:
Thank you for posting this. I never have any clue what to do or say in these situations.
My best friend lost her father when I was in college. I was 300 miles away, their relationship had been really tumultuous, and when she called me just minutes after finding out he’d died, she was calm and said she was fine with everything. No need for me to come all the way home just for the funeral, she said.
I don’t know what got into me, but not only did I not go to the funeral, I don’t even think I called her the next day. My mom did go, and she called me later to tell me that my friend was obviously devastated and I really should’ve come and supported her. I still kick myself for being dumb and insensitive enough to believe her when she said she was fine. Since then, I’ve kept reminding myself in similar situations that doing nothing is the worst thing I can do.
Kayla N. says:
Heather,
Sometimes I struggle with what to say when I read your blog. It took me a long time to post because I wasn’t sure what the appropriate response to grief was from a stranger. Now I have learned better, and I try to post here from time to time to let you know how much your words have touched me.
Reading your blog is the first thing I do when I get up in the morning. I think of Maddie often, at least once a day and usually more, even though we never met. I don’t know why your story has touched me so much, but I think of your family constantly. The post you wrote a few months ago, the one where you wondered if people would carry Maddie in their hearts, touched me especially. I try to help those around me and be a good person because I know I am carrying Maddie in my heart. And when I see a little girl wearing purple, I always think of Maddie.
Thank you for posting this and sharing your insight and your wisdom. Your words are always beautiful and you are making the world such a better place.
-Kayla
Tina says:
Thank you Heather.
I think of you and your Maddie on sunny days and wish you two could enjoy them together again.
Always in my thoughts and prayers…
Heather says:
Some great advice. I think of you guys often and always smile when I see sweet Maddie’s face
Rebecca says:
I’ve said it before, and I’ll say it again. No parent should ever have to outlive their child. And no child, should ever have to grow up without their parents.
.-= Rebecca´s last blog ..Throwing Stuff At Writers =-.
Tammy says:
Heather,
I absolutely understand what you are saying about religious statements to grieving parents. I hope you didn’t experience too many of those.
You know that a lot of people are praying for you and I hope you take that as an expression of love. (After I wrote that, I thought “Of course she does, dummy.” )
Every time I visit your blog, I take a few minutes to scroll through Maddie’s pictures. It is such a joy to see her smiling face and I am so glad you have all of these pictures. But every time I see them I get a stab of pain about what you are missing out on. I can’t imagine how massive that pain is for you.
Another thing I think of is the duality of having so much joy from and love for Annie at the same time you have so much sadness and pain from the loss of Maddie. “Life isn’t fair” doesn’t begin to cover it.
Hugs and Prayers,
Tammy
Glenda says:
When I wear purple I think of Maddie and my MOM that was my mom’s fav color too. I lost my mom in 2004 and I hate when people say she’s in a better place. NO she’s not… I wanted her here with me. With our family. We lost our niece when she was 1 to congenital heart defects and it’s so unfair that she didn’t have a chance. So Heather, I’m sending you and Mike hugs…and thanks for sharing your life and your precious Maddie and Annie w/ all of us. XXX
Amanda says:
As someone who regularly reads and finds myself pretending I have allergies because I am crying I try and comment but so often feel like I’m failing.
Woo Hoo – that was a run on sentence!
Like just now. I didn’t mean it disrespectfully at all – its just that sometimes I hope that reading along and having someone try and move your mind to a different place for even a second might somehow help.
I never knew Maddie but I think of her so often. A yellow dress, a smile that lights up the room, and oh, the color purple. It does it every time.
I miss Maddie even I didn’t ever know her – I miss her because you do.
.-= Amanda´s last blog ..Ever wonder how I got here???? =-.
laprimera says:
Thanks for sharing this, Heather. Maddie comes to mind quite often. To this day, the purple ribbon is still pinned to my visor. I’m reminded of her pretty smile and what a gift she has been to the world. xoxo
.-= laprimera´s last blog ..oh goodness =-.
Gale @ Ten Dollar Thoughts says:
I just had to close the door to my office, because I’m sitting here crying after visiting Layla Grace’s blog.
Thank you, Heather, for helping the rest of us understand how best to fumble through these horrible tragedies that life doles out. I’m eternally grateful to have found your blog. Your heart, humor, and humantiy keep us all coming back to read your words daily. I’ve said it before but I’ll say it again: thank you for sharing your lives with us.
Scatteredmom says:
My best friend’s husband has cancer and your advice really fits well there, too. When I went to Hubs in a panic and asked “what do I DO?!” he gave me the best advice.
Let her talk, and really listen.
Just be there, and be yourself.
Give her the space to talk about it if she needs to, and just love her. Don’t try to fix it.
Tammy says:
Wow – you have a smart hubs! Great advice.
Karen says:
Thank you so much for sharing this advice. You are helping all of us who know or will know someone who has lost a child, as well as helping those who have lost.
And now to convince my husband I need one of the bracelets from Kinga’s Kreations! I really like the smaller of the gold filled freshwater pearl bracelets
Melissa Multitasking Mama says:
I think what you said about not forgetting about them after the funeral is so crucial. My best friends daughter passed away in April of 2007. I still call her on Mother’s Day, Paige’s birthday and the anniversary of her death. It is so important to my friend that Paige have not lived in vain, that people remember her. Thank you so much for your words of wisdom about such a personal topic. I am sure you have helped many of us know what to say and when.
.-= Melissa Multitasking Mama´s last blog ..Fleeting Moments =-.
Andrea says:
Thank you for this, my college roommate’s mother passed away while we were living together and I didn’t say enough because I was so afraid to say the wrong thing. I’ve always felt as if I failed as a friend by not being able to get past my own insecurities in order to be there for her.
I have read your blog for so long without commenting for the same reason, I just had no words that seemed significant enough. But thank you for sharing Maddie’s story, I think of her often.
TMD says:
Thank you for this post. It is so helpful. I love how gentle and thoughtful your explanation is.
.-= TMD´s last blog ..What I am Thankful for this Thursday =-.
Erica S. says:
Heather-
Thank you for taking the time to write this! Its so very helpful to know! I often have wondered myself what to do and like so many just don’t say anything…
I would also like to say that I am relieved to know its ok to mention the child lost…there have been so many times Ive thought of Maddie bc of a story you posted or a picture I see or the color purple that is my daughter’s favorite as well and I want to tell you but I dont want to make you sad!
Thanks again Heather, sending lots of hugs!
Erica
amy says:
Thank you for writing this. I found your blog via Matt Logelin’s blog. I have been reading the archives in order so I can know the whole story. I have made it to Feb. 09. I know that horrible part is coming and its hard for me to keep reading knowing that. However, today’s blog has really helped me understand how to express feelings to friends and even people I dont know but care about their story (like you). Both your children are wonderful and I love your sense of humor.
tonya says:
This is such wonderful advice for anyone who is dealing with someone who has experienced a loss. While I cannot even imagine the pain of the loss of a child, I lost my dad when he was 59 to cancer. I lost not only friends but relationships with close relatives because of the fact that they were either afraid of me, or they were not afraid of me and said absolutely STUPID, hurtful things in during the most painful time of my life. I am religious and have a pretty strong faith, but I still didn’t want to hear about how God wanted my Dad, or how God knows best, or this was God’s plan, or how God had given me a wonderful dad for 36 years, or whatever. All I wanted to do was shoot God and the person talking to me a big bird. I had a cousin, a grown man, come to the visitation and funeral and NOT TALK TO ME. I got a hug, and he traveled six hours to be there, but he did not talk! What the hell? I’ve always said that in times of loss, simple is best. I love you. I’m so sorry. This sucks. I’m praying for you. I loved him/her too. I remember the time……
And on a much lighter note, my girls and I were out shopping earlier today, and my five year old told me that when we got home, she wanted to watch the video of the baby talking about how Daddy just smells like Diet Coke.
Praying for you always.
Marti from Michigan says:
My loss was 35 years ago in February. So long ago, I barely remember what happened then. I do recall making lemon bars for my sister/BIL when they lost their 3 month old son to crib death. She told me later, they were so refreshing, it was all she could eat for awhile, so I continued to supply them. I had a friend who was an artist and I gave her the picture of Jesus with the Children sitting on His lap, and a couple pictures of Steven (my nephew), and this artist painted a beautiful picture of Jesus standing among the clouds, with baby Steven in His arms. It is very touching. My sister still displays this picture in her front room right by the front door. This happened in 1988.
I also know you reached out to missionary friends, Rusty and Lynette when they lost their 28 1/2 week preemie, Olive Hope, and I know I appreciate that, and I know for sure, they do. I believe they still follow this blog as well as Mike’s blog. They have a blog as well. I still read their blog because it touches me as well. http://rustylynette.blogspot.com/
She has a very touching post in there from March 7th that really touched me as well.
You’re so kind to reach out to others, you have big, kind, loving hearts.
Mama Fuss says:
I hope you know how often so many of us think of Maddie – how amazing a little person she was and how strongly her story has changed the world.
I think of Maddie often. I wish I had known her in real life, but her life has touched me and she will never be forgotten.
.-= Mama Fuss´s last blog ..10 on Tuesday =-.
Kathy says:
Great post.
Mama Fuss says:
Also, right now, the video has nothing to do with the topic – it’s now about advocating for your child and you aren’t in it at all.
.-= Mama Fuss´s last blog ..10 on Tuesday =-.
Ray says:
116 comments in I’m sure you won’t read this or respond but I’m writing it anyhow…
I think it was MEANT TO BE for you to write this entry! And this one in particular. My cousin’s father passed away last Monday (the 1st) and I wrote a comment meant to send to you asking for advice (but I didn’t send it). And now you write this entry. Thank you for sharing this with not only Daphne, but with us.
I could quote you on so many things but I won’t because it would take forever. I’ll just quote you on this, “don’t back out after the funeral.” I have done this sadly. I love my cousin with all my heart and consider her my bestfriend. But I don’t know how to be there for her. The day her dad passed away I went to her house, told her I was sorry, cried with her and embraced her. I went to the funeral and was one of the few to be with her at her dad’s actual burial. But after this, I don’t know how to reach out to her and I feel horrible. Like the worst cousin ever.
I am glad that her boyfriend has been there for her (as she’s with him almost 24/7…that’s LOVE for you), but I know that “I” need to be there for her. And I need help with that. I just feel so out of the loop. I don’t know what to do. ;o(
Mary says:
Thank you, thank you, thank you for sharing this with us!! I hate that you have had to become an expert on something like this.
While I do not know you, I do think of you & your Maddie each day. Seeing her big blue eyes & long lashes makes my heart fall in love all over again each & every time!
With loving thoughts,
~M
.-= Mary´s last blog ..Congratulations are in Order =-.
gorillabuns says:
expect nothing from the bereaved. unfortunately, everything seems to be expected of them.
Sarah says:
Well said
beerab says:
You know I never used to like the color purple.
Now when I look at something purple, I think of Maddie and I remember her beautiful eyes and contagious laugh, and I smile
Purple will never again be just a color to me- I miss her too
Rachel says:
I’m glad you wrote about this. I have been following yours and Mike’s blogs for about a year and a half. My heart broke for you two last April but I really honestly didn’t know what to say. I felt that anything I wrote would be wrong. I felt I had no place in saying anything because my child was well. I did write a few comments but I don’t know if they helped or hurt. Thanks for the advice, though I know it is probably not your favorite subject to address. P.S. My daughter loves watching the Maddie movies you post. She always asks to watch them over and over
.-= Rachel´s last blog ..Worms and Dirt =-.
Kim says:
*sigh* I wish you didn’t know all of this, but am so glad that you have a platform to share it.
I wrote a two part series on loss last year – http://prairie-mama.blogspot.com/2009/01/losspart-1.html
http://prairie-mama.blogspot.com/2009/01/losspart-2_15.html
It is hard and it hurts and it sucks big green donkey poo. The thing that we have to realize is that everyone grieves so differently, so what may be right and helpful for me, isn’t necessarily for you.
I completely agree with not trying to comfort with religion and always talking about the person who has died. It makes me laugh when people are afraid of opening up wounds by talking about Emma. Are you kidding?? There are so few people in my life anymore that actually knew her, so when I have the opportunity to talk about her…well, it’s gold and I take it.
I pray that people will read this and will be able to help others. If you wouldn’t mind passing my links along to Daphne, they might help her also.
love you dear friend.
Jenn says:
Heather, thank you so much for writing this. I have often wondered what to say. Not sure if mentioning their child would make it worse or better. Now I know
And just so you know, not a day goes by that I don’t think of Maddie. That is the truth. She was a true bright light in this world and one that is missed daily!
Best, Jenn
.-= Jenn´s last blog ..Gracie’s First Sleepover =-.
Andrea's Sweet Life says:
Hmmm, the momversation I’m getting is about advocating for your child. Also something you’d have a lot of good stuff to say on, but not what I expected!
I am guilty of worrying that I’m *bothering* you or Mike. But at the same time, I never, ever want you to think that Maddie has been forgotten. Not by me, or my kids who still talk about her, and about you guys. There isn’t a day that goes by that I don’t think about Madeline.
Thank you so much for helping us to know what to do and say. Love you, so so much.
.-= Andrea’s Sweet Life´s last blog ..The One Where Matthew Gets His Eyebrows Waxed (For a Good Cause!) =-.
Annie says:
I cannot begin to imagine what it would be like to lose one of my boys. It’s a daily fear in the back of my mind every day. As a former NICU nurse I dealt with death very often. And under lots of different circumstances. Babies born too early that only lived hours. Babies born with a genetic condition that was diagnosed before birth. Babies born early who lived for a length of time and then passed. “Normal” full term babies who became ill shortly after birth and then passed. And of course those like Precious Maddie. Born into the NICU only to go home and have complications later on. When I worked in the NICU I was a grief counselors for our families. I think this subject is so sensitive because everyone is so different. I’ve dealt with families who were not religious who asked for a chaplain as they said goodbye to their baby. And encountered church clergy who were so angry at God for taking their baby that they couldn’t even pray during their darkest hour. But I must say that those who are strong in their faith show the most peace. Not that they are ok with what is happening, but there is a peace about them. Several years ago a child was killed in my family-a first for us. He was brain dead for 16 hrs before he passed on his own. I will never forget that feeling when his father came into the waiting room to tell us. I was crying uncontrollably and SOOOO angry at God for taking this child of such a religious family. His father came out and said, ” Blake has gone to the Lord, but we are donating his organs so he can help people like he always has”. I was in shock and a little angry at him for saying such a seemingly cruel thing. I myself am spiritual but not religious or a fan of organized religion. During the family’s grief the father did turn his back on God for a short time. His wife was patient and never pushy. I only had the courage to speak to her about her loss once. And I just asked her how she could make it each day. First she said she did it for her other children and then she said, “how could anyone survive this if they didn’t KNOW they would see their child again someday? I will see Blake when I die and that will more beautiful than I could ever imagine”. Still amazes me how strong she is. I agree you have to be careful about what you say in God’s name. In my experience I have found that offering to pray for someone is not offensive in any way. Layla Grace’s family is obviously very strong in their faith and you can tell by the blog. Very sad but positive. They celebrate her life with joy because they too know they will see her again. Peace to everyone who has experienced this pain and survived it. You are amazing!
Laura says:
Heather,
Thank you for posting on this difficult subject. Having lost parents at a young age, I can’t tell you how on point all of your advice is. I have learned through my experiences that during the worst of times people usually far exceed your expectations, or unfortunately disappoint and hurt you during an already hard time. Other friends who have lost loved ones have echoed these feelings.
You are so right that saying nothing because you don’t know what to say is absolutely the wrong thing to do. Just sending an email that says you’re thinking of someone and no need to respond is good. Even better, for me, was when people told me stories of people who had been in similar situations and made it through–although I suppose this could feel like minimizing to other people. And also when people reminded me that, despite what I was going through, I had my sister and husband to lean on.
I also could not agree more with the advice of taking initiative. I had one friend who came to the hospital with food without me asking. Some people might think this was presumptuous, but I think if you go with no expectations, the people grieving can just take the food and give a quick hug and say goodbye. My friend wasn’t asking for anything in return–although I did end up talking to her for a bit–just trying to make a bad situation a little better in any way she could.
Thank you again and I hope people take your advice to heart. Not everyone can be one of those people that exceeds expectations during these times, but no one needs to be someone who lets down a friend or family member if they follow this easy advice.
Daphne says:
Heather, you were so gracious in this vid and I am glad you wrote out what was in the EP version. You have amazing heart. Thank you friend.
Tara. says:
This is so helpful, Heather. I’ve never lost anyone close to me, let alone my own child, so I can’t even begin to imagine what that loss would feel like. I only know what I feel when I even try to think about what it would be like and I end up in tears. I think your advice is so great, especially the part about people pretending she wasn’t ever here because they avoid talking about her.
I do have to disagree a little bit on the religion part. I do know that some people take that too far and can be really insensitive. Yes, saying something like “God must have needed her more” is a terrible thing to say. But I strongly feel that if the person whom is offering prayer or comfort it is because they truly believe this is what should do and they want to do it. Sometimes that’s the only place you can go when you feel lost and angry and hurt and alone, is to God in prayer. But I also strongly believe that the best way to show someone you care, and that you know God is in control is just to love them. Bring them food, sit with them when they cry and don’t speak unless you’re asked to. Don’t give opinions or try to offer an answer. Just love them and be there instead of saying something stupid like, “She’s in a better place now”.
Abigail says:
“But I strongly feel that if the person whom is offering prayer or comfort it is because they truly believe this is what should do and they want to do it.”
The problem with this statement is that it is making it about the comforter and not the mourner. Just because a person truly believes it and wants to say it doesn’t mean they should. At times like these it should never be about what the comforter wants, only about what the mourner wants.
Shelly says:
Who are you to keep correcting other people’s responses? You did it up on another post too! That isn’t what this site is about! We all have our own opinions and you really don’t have any right correcting other people!!
Linds says:
great post. although the pain of every loss is different, i would have loved to hear some of the things you wrote after i lost my father, and that was a COMPLETELY different kind of loss than yours. those sentiments and gestures – “i’m so sorry, this sucks, but i’m here for you right now”, bringing food, texting, remembering- are universal.
i seriously cannot stress enough how much more painful it is when people IGNORE your loss! just because you aren’t talking about it doesn’t mean I’M not thinking about it. that is the most insensitive thing people can do, in my opinion.
mythoughtsonthat says:
Really good advice. The most important part was to talk about what happened, even if it’s hard. My sister’s baby died 13 years ago and she still loves to hear what I have to say about my niece’s short time on this earth.
Faith….Hope….Love….Peace.
.-= mythoughtsonthat´s last blog ..Hope, Revisited =-.
Chrisie says:
Heather,
Maddie will always be remembered and she will be forever missed by so many! I think about her all the time!
((((HUGS)))))
Camie says:
Thank you for this– it’s always so hard to tell people when you’re the bereaved what they should do. I never met Maddie, but I think of her often. And I love seeing pictures of her sweet face! She is pure sunshine and grace.
Kim ~ CraftyMamaof4 says:
Thank you for this post. When my cousin lost her dear sweet Annie 6 months ago I felt as if I lost one of my own children. I agree with everything you said and have done these same things with my cousin and have had others comfort me in the same ways as well. It was the greatest feeling in a time of such darkness.
I so agree with the show emotion part, I recently visited my best friend in Nashville while I was at Blissdom, I had talked to her on the phone as everything was happening last fall but we had not physically hugged each other. While I was there I had a complete breakdown when I went to church with her (I have been unable to go to church since Annie’s passing) and it felt so good to cry together with her in real life and feel her emotions as I struggle with my own. As we both sat there with tears and snot running down our faces, t was the most healing moment I have had since Annie died. (I’m crying now as I type this thinking about how emotional it was)
I think of Maddie everyday and it gives me peace to know my Annie has her to hold her hand.
.-= Kim ~ CraftyMamaof4´s last blog ..Wordless Wednesday ~ Future Rocker =-.
Anne Lalla says:
WOW – this is an amazing post with so much valuable information! I always wondered “what should I say, what should I do” and you helped me more than you know! Thank you, thank you!
Funsize says:
Very well said. I think that covers everything a parent who has lost a child has gone through or felt.
.-= Funsize´s last blog ..Ticking Away =-.
MelissaG says:
Here’s my question…is it ever okay not to say anything? The only reason I ask is because I remember you going to something (a blog conference or something?) and saying not to do that crazy head tilting/half-smile thing and say something like “how are you” or “I’m so sorry” (sorry, can’t remember exactly)…I think you said, a simple hug would suffice. When you described that, I totally tested it out and realized that is 100% something I would do and say….so I try not to now. My dentists son passed away and I didn’t say anything to her…I was grateful we had to go back the next week because I got to say something. I didn’t know exactly what to say but I did tell her we had been thinking of her and were sorry. She seemed grateful but was on the verge of tears (something I’m sure is always there).
Another great reminder to me about religion. I personally feel that every baby is in heaven that passes but would NEVER tell someone God wanted their baby more than them. I’m so sorry that someone would say that. I think I may have mentioned heaven in a past comment and I’m very sorry if that was unwanted/hurtful. I’m thankful for your insights…sad that you have first-hand experience but thankful that you are sharing. (sorry for such a long comment)
Issa says:
I think it’s great that you said all of this. I think when anyone dies, people aren’t sure what to do…but when it’s a child, it’s even harder. No one knows what is right to say, or do. Most do want to help though.
Totally random? Friends of Maddie was the ad on my BlogHer ad’s all day yesterday. Made me smile.
.-= Issa´s last blog ..Thursday whines =-.
Savannah says:
This was beautiful Heather. Much of what you’ve shared is what my therapist tells me when it comes to dealing with any sort of emotionally painful incident (sadness, anxiety, etc). Others mean well when they tell you to “move on”, but the truth is, you have to allow yourself to grieve, to cry, to let those emotions run their course–and often the course lasts a long, long time.
It’s okay though. The person grieving just needs to know that they’re not alone, that you *get* their pain, and that the situation is horrible.
Jenny says:
I wish there was no need for such advice. Thanks for sharing it.
.-= Jenny´s last blog ..Sometimes Family Members Are Different =-.
Dawn says:
Heather,
I started out following Mike’s blog and then headed to yours when he headed back to work. I followed because your little family brought a ray of sunshine into mine.
I would tell my friends what you and Maddie had been up to and the funny pictures you would post of her. They often would question me how I knew you. I would say, “I don’t, but I sure feel like I do.”
Last year, when I read about Maddie’s death. I bawled. I couldn’t believe this little girl I had grown to love was gone. I also couldn’t imagine the pain you were in…and, yet, you had the strength to tell all of us (ppl you don’t know) how you were feeling.
You amaze me!
I want you to know that seeing a purple sky ALWAYS makes me think of Maddie!
.-= Dawn´s last blog ..my forgotten smile…and a WHOLE lot of stressors =-.
Kayla says:
I love that you have the strength to help other grieving parents in the face of your own horrifying and devastating loss. You are an amazing person Heather Spohr, and as always, I love you.
– Kayla.
Juli says:
i am only a dedicated reader but i must tell you that the strength that you show helps me get through the days following my own loss. thank you for sharing your life. thank you for being brave and sharing both of your beautiful daughters, they both help put a smile on my face during my darkest days. you are the strongest person i know.
~Juli
Michelle W says:
My cousin lost her baby when she was 7 months pregnant and our Auntie expressed her condolences by writing “….these things seem to happen for the best”. I was horrified and crying when I read this and wondered how anyone could possibly say anything worse. We were both pregnant at the same time and my guilt was all consuming. I expressed my condolences in writing but couldn’t bare to call her. She called me after I had my little girl to congratulate me and it was all I could do not to absolutely bawl at the sound of her voice and knowing all she had lost. Some months later after she miscarried her second baby I wrote the most difficult letter I think I’ve ever written. I was terrified of saying the wrong thing but knew I’d be haunted forever if I didn’t finally let her know how much I was truly hurting for her. She later told me how much she appreciated the letter and that she put it in her daughters keepsake box. It confirmed for me that reaching out was the absolutely right thing to do, even if I made 1 or 2 missteps. I’ve made the mistake before of not reaching out because of fear but no longer.
Thank you Heather for these wise words. How I wish you didn’t have the life experience to share them. Madeline’s joyful exuberant face always jumps off the page and fills my heart with both joy and sadness.
Lanae says:
OK,
I appreciate, respect and agree with the advice given, especially from the perspective of someone who has suffered loss. My aches for all who have suffered losses; since I have 3 children and couldn’t bear the thot of losing any of them, I particularly ache for those who have lost children. Layla Grace definitely captured my heart and I wept for her.
However, one thing I want to say – I don’t think saying ‘ she is in a better place’ is always so wrong. It’s not something I would be saying in general, or am saying should be said, don’t get me wrong. But I wouldn’t be mad if someone were to say that to me, because I would/do believe it. Yes, I would rather have my child in my arms than in God’s, I would rather have my child in the flesh here with me, I would rather God never take any of my children home before me – but if that were ever not the case, really, what better place for my child to be than in God’s arms, with Him, if he/she cannot be with me? If people are not spiritual/religious, no, they won’t find that comforting; but for me, my thot is that heaven is a better place than earth, and God, Jesus, the angels, far better to be with than me!
I think in the case of Layla Grace’s parents, they appear to be spiritual people who do take some comfort in their child being with God and His angels, if she cannot be with them. I know their hearts are broken by her suffering and passing and they would rather she not have passed, but I think perhaps they are the sort of people who can find a spiritual comfort from the thot that she went home to God. Some wouldn’t find that a comforting thot, I know. But some would, so to say that ‘being in a better place’ is a terrible thing to say is not respecting those who would believe it and do take comfort from that belief. Again, this is something I wouldn’t make a practice of saying to just anyone – but I think if it is said it is not as insensitive, thoughtless, or hurtful as some other things that could be said.
Annie says:
Wonderfully said.
mel says:
I’m sorry that you were able to speak upon the topic in this video, but I think many will appreciate and refer back to your advice.
hugs to you heather. You and Mike and your entire family.
red pen mama says:
I usually tell them how sorry I am for their loss. I posted recently on Glow about “not getting over it”, but unless I knew someone terribly well, I wouldn’t tell her/him that. I wouldn’t want them to take it the wrong way.
If I were physically close to the parents, I would cook for them, absolutely. And I think I would offer to help them go through the child’s things, because that’s one thing I found especially painful after I lost Gabriel. We had had a shower for him (for us) a few days before he died. Suddenly I had all the STUFF to deal with.
I, too, was incredibly blessed with supportive and helpful friends and family.
I would say some of the WORST things you could say are “At least you didn’t know him/her well.” My husband and I got this one a couple of times and it boggled us. I had had that baby in my body for nine months. I knew him incredibly well. I agree with not invoking God — my faith was helpful to me, but Dan really struggled with it. And “it’s part of God’s plan” or “it’s for the best” or anything along those lines. They are just incomprehesible for a grieving person.
.-= red pen mama´s last blog ..Eat You Up =-.
Leann says:
We lost our son suddenly when he was three years old. It still hurts and it’s been almost 2 years. Two things that I heard a lot that just made me grind my teeth was…
1) I understand what you are going through. My daughter lost her best friend or my niece lost her daughter or my neighbor passed away…’ Every death is different, you do not understand and cannot know what that person is going through.
2) Wasn’t he sickly? My son, Jabez, had CP and epilepsy. Both were controlled by medication and was not terminal. This would make me so angry, like because he was sick that some how excused it and I should have been prepared for it.
I remember the first Christmas after Jabez died. His name was not mentioned once. It was so awkward and painful for Danny and I to sit there, open presents, and try to not mention the ‘white elephant’ that we felt in the room. They even ignored us/became more busy when we started to cry.
I would also like to mention that grief last a long time. Some people are still surprised that I have down days. I lost my son…this wound should never be healed.
.-= Leann´s last blog ..You there?!?! =-.
Shellie says:
I would address one person’s question:
Is it ever okay not to say anything? The only time I think it is okay not to say anything is if the only things you can say are the stupid things – the ones like – you are young, you can have more children, it’s been six months, a year, ___ however long, you need to move on with your life and get over this. In those instances, maybe it is better not to say anything. But generally, I think it is almost always better to say SOMETHING.
The other thing I would add/emphasize is to keep mentioning the child. There is nothing that makes a mother (and father, in many instances) happier than hearing their child’s name after they have passed away – to know that people still acknowledge them and consider them important and part of current life. And not just for the first few months or even year. I lost my baby (stillborn) six years ago. Her twin sister survived, but she didn’t, and it kills me when people act like she never existed. I love it when people bring up her name and acknowledge her as her rightful part of our family. And acknowledge that no, even six years later, it is NOT OKAY. Yes, I have integrated the loss into my life and my daily existence, but I will never, ever be OVER IT. And I cannot imagine how much worse the death of a living child would be. So my added advice would be to not forget to keep acknowledging that child as the years go on. He or she is still part of the family and the mother and father still want people to remember and talk about them. And the mother and father still want people to acknowledge that, although it does get easier as time goes on, it is not something that you magically “get over” just because some period of time goes by.
Dee Dee says:
Thank you so much for your great advice. I remember so vividly my mother who was not religious but believed in a “higher power” and she was dying of terminal liver cancer. The hospital preacher came by every morning and as my mother put it “tried to force his religion down her throat” and one day I was there. He turned to and told me “I know this is hard but, what doesn’t kill you will only make you stronger.” My dear mother took the words out of my mouth and I am sure scarred the preacher for life when she told him “the kill me now because the pain of lying here dying while my daughter’s heart is breaking is the worst f***ing pain I have ever been in”. Sometimes words that are meant to “comfort” really just become another knife wound…
Tiara says:
I always hesitate to write here because you get soo many comments and I am sure at this point they blur together. I just want to say thank you for writing this. I lost my older brother in October very unexpectedly. It really brought my strong mother to the brink and as her daughter and a mom myself, all I could do was climb in the bed with her and watch her cry. Almost equally as hard as losing my brother has been watching my mother grieve. I know its hard for you and I just want to say I really admire your strength and your grace. Thank you for being my friend in grief – although we never met.
mom, again says:
I think of your Maddie a lot.
Last april, I was living in the UK, with my then almost 2 year old son, and preparing to move back to SoCal. I was contemplating calling you, because no one I knew here has little children. His sister, my Maddy (age 22 then), was visiting. I made a point, when I finally had time to go online, of pulling up your blog to show her YOUR adorable girl. and that is how I found out she was gone.
So I’m home now & quite often when I see my Maddy & my son, I think of your Maddie & what good friends they might have been.
IzzyMom says:
Heather, thank you so much for sharing this advice. I have been the awful person who doesn’t know what to say and is so afraid of upsetting a grieving friend or loved that I say very little. It’s not that I don’t care. To the contrary, I care very much but despite having been there myself many times, I always feel so clueless in the face of grief. This is incredibly helpful.
Lisa says:
such an important post. i think everyone, at one point or another, is faced with this dilemma and it’s really helpful to hear your views. Thank you.
.-= Lisa´s last blog ..Taking A Day Off =-.
Al_Pal says:
This is going to help so many people.
I think about Maddie all the time. I have a few purple pieces of clothing that I was inspired to get by her.
My mom’s older & only brother died when he was 15. If I had known this stuff as a kid, I would have asked my grandparents about their son.
*hugs*
Colleen says:
I’ve thought for a few days on how to respond to this post. I love it for a lot of reasons so thank you. I started reading your blog the day Maddie passed away and as much as I’ve fallen in love with Maddie and Annabel (and you too, of course) now, at first you offered me a window in to the world my dear friend had recently entered when her darling almost 3 year old daughter drowned in their swimming pool. My friend shut a lot of people out and I never knew what to say and I’d cry and cry over how I imagined she’d be feeling. I think reading your posts helped me grieve for my friend and her daughter. I still grieve, who am I kidding? Since she lives in another city I send my friend cards by post about 4 times a year and I write all over her FB wall. She doesn’t like to talk much on the phone and I’m respecting her. I just want her to know I think of her and her daughter every damned day.
When our first born’s twin brother passed away in utero I was bombarded by well-meaning friends who said “Well God has a plan” or “God wanted him more than you” or “God doesn’t give you more than you can handle.” While my head told me that these friends didn’t have a clue what to say or how to say it and were lovingly intentioned, it made me want to scream over and over again. God’s plan sucked. God DID NOT WANT HIM MORE THAN I DID. And so what you’re saying is God didn’t think I could handle twins so he killed one. Yeah, I was crushed and felt so incredibly guilty when people said this. Of course I just nodded because how can you bite off the head of a friend who is trying to be there for you? Silently I crumpled inside.
Anyways – thank you for writing this and offering us perspective. I appreciate you!
.-= Colleen´s last blog ..Getting My Bitch On. =-.
Tracey says:
Heather, I think it’s awesome you’re sharing this. I was at a loss with what to say to people, then good friends of ours lost their 29-year-old son and for the first time I saw raw grief up close. I have learned to say more about their son (who was a friend of mine and my husband’s), share memories — I even shared a really nice dream of him in which he helped my son. I have talked with his mom about you sharing your grief and how much it has helped me, so I can’t imagine how many you are touching through all of this. Thank you.
robin says:
I got chills reading this. I am lucky enough that my girls are healthy, and I can’t even imagine what it would be like to lose one of them. I feel so much pain when others lose their children, but this isn’t even a drop in the bucket compared to your feelings. To Hunter’s parents’ feelings.
I am currently a member of Team in Training. We are training for a triathlon and raising money for the leukemia and lymphoma society. Hunter was one of out honored teammates. I was devastated to find out his cancer had returned, and even more so to learn he had lost his battle. I hate the idea that children have to die, for ANY reason. I appreciate you posting this. It is often so hard to know how to truly help. We cant take away the pain. We cant wish it away or help it away or sorry it away. But knowing there are some things that may bring a bit of comfort, or alleviate worry about minor details, is helpful. Thank you.
Margaret says:
So well said Heather. Thank you I want you to know I have a picture of Maddie inside the cabinet door in my kitchen. Everytime I open it, I see your girl. I hope you don’t think its weird, I have other cherished pictures of loved ones that I need to see every day with her picture. Love from MN.
stepho says:
Heather, thank you so much (as always) for your bravery, and for sharing this advice. I don’t have a child of my own yet so I can’t even imagine the immensity of your loss. However, my dad passed away in 2003 when I was only 19. Even though the circumstances were different, I 100% agree with everything you wrote here.
I think the hardest thing for me, my mom, and brother, was when everyone disappeared after the service was over. Though our emotions were so raw and intense right after he passed, we got lost in the hussle and bussle of getting his affairs in order and planning a funeral. When that was over, and the friends and family went back to their lives, it felt like there were tumble weeds blowing through our house. I wished so badly more of those loved ones would call, or visit, or email….anything. Just to know that people were thinking of us meant the world.
Good luck you and Mike and Annabel. Maddie will always be missed, but because of your guys’ courage, at least you know she’ll never be forgotten.
katie i says:
wonderful post, and very needed! when my dad died, i also noticed the food, cards, flowers, people dwindled down after the funeral. the weeks and months after are the most crucial for support for sure! my heart goes out to you, as my oldest is 22 mos and i think maddie was born around that time. love reading about annie as my little henry is almost 5 weeks. enjoy following your daily tweets, we are going thru the same fun newborn stuff again. and big kudos to you for all you have done in maddie’s memory. you guys are so amazing! and i know maddie would be so proud!
.-= katie i´s last blog ..Our new little blessing =-.
Beki says:
I’ve followed your blog for quite a while. Never before commenting, but I just wanted to say thank you for this information. No two situations are alike, like you said, but it is wonderful to hear what some actions mean to those dealing with loss.
Caren says:
I am so sorry for your loss. I cry everytime I think of what you both have been through. As the mother of a 2 year old girl, your posts help me remember to cherish every moment (even the ones where I want to pull my hair out). I, too, will never again look at purple as just a color. Even though I never knew Maddie, I think of her often.
Lori says:
A co-worker of mine lost her 20 year old son a few weeks ago. When she came back to work, I was dodging her because I didn’t want to confront her because I knew I would cry and I didn’t want to upset her. After a few days, I approached her and told her how sorry I was and how I was thinking about her and her family. Yes, I cried and then she cried but I am glad I approached her. Thank you for talking about this, and for your advice. I am so happy I stumbled upon your blog one day. You and your husband are amazing people, no wonder Maddie had the strength and charisma to charm the world! Your daughters are very lucky girls! BTW, Annabel looks just like Mike! Sorry Mama!
Catootes says:
My sister and I talk about this topic pretty frequently. Her 25 year old son fought a 10 month battle with bone cancer but lost that fight in February ’08. It’s really the hardest thing ever. People don’t want to mention him, for their own awkward feelings, not for my sister’s.
Thanks for the frank statements. Maybe some will read this and not feel so uncertain and offer the much appreciated comfort where it is needed.
.-= Catootes´s last blog ..bring on some smiling tiki’s =-.
Judy Christensen says:
You are sooo right on–it’s been almost 5 years since we lost our son and it still is the worst of the worst. Don’t forget them. They have only memories to hold on to and if no one mentions them–they can be lost. Don’t change the subject or “shut down” when we need to talk about our child–they are what we have.
Jamie says:
Very well thought out list. I truly had no idea what I needed people to do at that time. I would add, and it may already be in the comments, to not stop with the support and mentioning my child a few months after he died. It’s been 3 years for me and it feels very much like everyone has forgotten
Lindsay says:
I know it’s been many years since you wrote this but it stuck in my memory. I hate that I needed to find it today, but I did. And I thank you for writing it.