Two weeks ago, my friend Jen’s sweet little cousin (really, more like nephew) passed away only a few days after his fifth birthday. He’d fought leukemia for fourteen long months. When Jen told me the news, I was so sad. It’s awful that he’s gone. It’s awful that his brother will grow up without him. It’s awful that his parents and family now have a hole in their hearts and lives. Sweet little Cole, it’s so unfair.
I haven’t been able to stop thinking about his family, specifically his mom, because she is the one I can relate to the most. I wanted to write to her and tell her something about my story with the hope that she could latch onto it and maybe find some comfort, like I found from other moms with deceased children. I couldn’t think of anything to tell her…our situations were so vastly different. While it’s obvious that every child’s death is so horribly and tragically unique, Cole’s passing reminded me of some strong emotions I had toward other grieving parents after Maddie died.
Madeline’s death was sudden and shocking, and Cole’s was drawn-out and, for lack of a better word, expected. In the immediate months after Maddie was gone, I was intensely jealous of people like Cole’s mom. They had time to “prepare” and to say goodbye to their children – mine was just yanked away. I would talk to my therapist about how much better off these moms had it, and how unfair it was that I didn’t get to have an experience like theirs. She would calmly listen, hand me tissues, and nod her head.
Eventually my therapist told me about another mother she’d once treated, one whose daughter had died after a long illness. This mother hated moms like me – women who didn’t have to watch their children languish until death. Moms like me didn’t have to hear things like, “at least she’s no longer suffering,” as though death was somehow the best option. Moms like me have memories of their kids playing in the park three days before they died. Moms like her have long hospital stays and agonizing days and nights blurred together as their children’s final memories.
I hadn’t thought about it that way, of course, and at the time I was resentful my therapist had shared the story with me. But with time and clarity I have come back to it many times to remind myself that no situation is better or worse. It’s manure stew or manure casserole – neither is desirable. We’ve all had to say goodbye to someone we didn’t want to say goodbye to, and regardless of how much “better” we assume others may have it, in the end we’re all just trying to choke down this awful plate.
To Cole’s mom I would say that I am so, so sorry, and I would tell her the one thing that I always like to hear – that Cole’s life mattered to me, and that I am different now from having known his story. He will never be forgotten.
Hi Heather. I lost my daughter in a car accident when she was only 5 months old. My husband and I joined a support group for grieving parents and experienced some of what you described. There were 6 couples that lost their children due to illness, us and one single mother named Maggie. They would gang up on us because our loss was “like pulling off a band-aid” while their grief was a long goodbye. They were even crueler to Maggie as her son died of a drug overdose at 26. As if his life had less meaning because of his lifestyle choices. We didn’t last long in that group. What I have come to realize is that no matter the circumstances we all lost our most treasured jewels and we would all stop at nothing to get them back.
Anna, I am so sorry for your loss. And I am also so sorry to hear you were treated that way after your daughter’s death, especially by a group that is supposed to be supportive.
Maddie’s life and Cole’s life mattered to me. Thank you for sharing Cole’s story.
Spoken from deep, down inside your heart, Heather.
Thank you so much for writing this. I’ve never heard the stew/casserole analogy. And it’s so true. I want you to know that my life has been touched by you, Mike, Maddie, and Annie. I smile every morning when I see what you’ve written and sometimes I cry, like today.
I agree with Jenni. I love reading your blog, the funny, the serious, and I love watching Annie grow up. You are an inspiration to many!
Jessica Makuh says:
You are so right. Very well written. Why is it that we get so competitive, even in death? Is it one last chance to make ourselves feel better? To make our child seem even more important? I know someone who just lost her 1 year old son on the 28th. He died 4 months after getting a heart transplant for his heart defect. He was sick for a long time, in the hospital for over a year, but they thought he was getting better and he even went home for 2 days. And then he died suddenly from an infection. I’ve been thinking about her a lot.
I cannot imagine the feelings surrounding the loss of a child no matter how the child goes or what age he or she was when they died. I’ve never lost someone I was extremely close to suddenly. I can’t imagine the shock and the feelings that surround a death in which things that should have been said or done were not. I do know that I watched my dad die a slow death for nearly three years and in the very end he took his last breath as I cradled him. He was 59. There were many times that I thought I’d punch the next person who told me he was better off, or we were better off, or that they knew how I felt since their 89 year-old grandma had also died of cancer. And then there were the people who had worked through grief who said things like this:
” Forewarned is NOT forearmed.” And I can promise anyone that no time prepared me for those last hours, for the bottom to fall out six months after he died, for me to nearly lose my shit in the fallout.
And my favorite, “Grief is not a pissing contest.” Crass but true. Is the loss of a young child more tragic than the loss of an adult one? Is my dad’s loss more tragic than that of a 90 year-old? Less than that of a 40 year-old? Is it easier if you are “prepared” or if you don’t dread the day for months or years? Do I not get to grieve the loss of my beloved collie who was my faithful companion for half my life because she was just a dog? Obviously there are losses that “trump” others. But pain hurts whether someone else hurts more or not.
This is all so tricky and grieving people are so broken and words meant to comfort usually don’t. My advice to anyone is to simply offer a hug and words expressing that you’re sorry and you’ll be thinking of them/praying for them. If you were touched by the person, let the family members know how. Other than that, keep quiet.
You have such an amazing way with words. If you haven’t considered somehow working with grief groups, I wish you would. You could be such an inspiration to others. You certainly are to all of us.
My daughter was stillborn at 39 weeks. I was told by some that she was probably going to be retarded anyway, this is God’s will, you have 2 other children already, you’re young and you can have more, at least she died before you got to know her, blah blah blah. I wish I had even just one day with her to at least have some memories. I’ll never know what color her eyes were or what her voice sounded like. She would be 17 this coming May and not a day has done by that I don’t think of her. There is no “better” situation for anyone when it comes to losing a child.
*hugsz* In 2006 I lost my father nine days after a stroke. Four months later, my grandmother died, after a slow decline.
Nobody questioned my need to grieve my father. A few people were less understanding of my need to grieve my grandmother, as she was older and it was to be expected. I had been closer to my grandmother than my father, and it hurt when I didn’t get the same support following her death.
There is no “better” way to lose someone you love. Ever.
And sorry, I hit reply before finishing… I agree with the comment above about you working with grief groups. You are remarkable and have so much to offer others. I wish you didn’t– at least not in this area– but you do.
I agree 100%. You have an excellent way of explaining your feelings while being very compassionate at the fact that other people experience things differently. This was one of your most beautiful posts because your compassion really shines thru.
And I agree, there is no better way to lose someone you love. It pretty much sucks no matter what.
Your post made me cry b/c when I first came to your site, it was the day Maddie passed away – 9 months since my own 10 month old daughter passed away suddenly. What I wanted you to know the most from me was exactly what you said….1) Maddie did & ALWAYS will matter. 2) I hear you & I feel you…your sorrow. 3) Maddie (just like our Maggie) will ALWAYS be in my heart & will never be forgotten. And Heather….I think of Maddie EVERY SINGLE DAY…just like I think of my Maggie & all the kids I have worked with in the pass, who are no longer here!!!!
I agree with you, just like every birth is different, so is every death BUT, THEY ALL HAVE THINGS IN COMMON. THEY ALL HURT LIKE HELL, THEY ALL THROW YOUR LIFE INTO TOTALLY TURMOIL & A STATE OF PROFOUND SHOCK. NONE ARE FAIR!!!!
Yesterday I found out a friend of a friend lost her 4 yr old son to brain cancer. The family was told he would pass within the wk after they realized his tumour had grown out of control. Within a week when they decided to bring him home to die. 3.5 wks later, he passed in his parents arms in the quiet, morning hours.
Yesterday & today I grieve for them just like I did for you….for one mother to another.
Thank you for your insight. I KNOW it will help a lot of ppl. I know it will bring comfort when comfort is not easily brought. Thank you.
Sonya aka Glam-O-Mommy says:
Heather, I think this is something everyone should remember and you put it very eloquently. I’m praying for Cole and his family as I’ve prayed for you, Mike, and Annie. Cole’s life matters and so does Maddie’s. Every child’s life does.
My grandmother had 10 children (my mom was number eight). Her second child, a girl, passed away at two months old. For the rest of her life, my grandma talked about how hard it was to lose that baby, that mothers shouldn’t outlive their children. She always counted her, never saying she had only nine children, although some in the family said that. It’s only in recent years, as I’ve become a mother myself and been reading your blog, that I’ve come to realize what a true sadness she must’ve carried with her always.
Thank you for sharing.
My 2.5 year old son has been battling lueukemia for the last 14 months. I live everyday on fear of relapse, chicken pox, common colds and just about everything because at this point just about anything can take him from us so easily. I am so sorry for all of you who have lost their baby, they all mattered to me, I don’t now you or them but you are all forever in my heart.
Heather, thank you for sharing this post. It is odd that in so many areas of parenting we can offer advice but the death of you child is not one of them.
I started writing my blog partly because after burying 2 of my sons I thought I should have some words of wisdom. Turns out there aren’t any – or if there are I am still searching for them. To other bereaved parents I always offer peace and hugs. I wish I could do more to help with this difficult journey.
My therapist too offered an analogy about sudden vs not sudden deaths – would you want to know that you are going to get hit by a bus in month or just get hit by a bus? Either way you are getting hit by a bus. And, in either instance you are a parent living in a world without your child (or children).
Take care. Sending peace and hugs.
We lost our baby at almost 28 weeks, and her twin had a long NICU stay. People will try to put a positive spin to make you feel better. In our case it was “at least you got to keep one of them.” There’s no positive side to losing your child. Ever.
katrina @ They All Call Me Mom says:
“But I wanted them both.” would be my reply to that. I know that people try to put a positive spin on it, but wow…I would just never say that to someone. I’m so sorry for your loss
There IS no positive side. Ever. Loss is loss, and it always hurts. Nothing can make it “better” and nothing can make you think, “Oh yea, that makes more sense. I feel better about it now.” But people just SAY things because they think they should.
Heather, it is so strange to get on your blog and read this today of all days. I’m heartbroken because a little 22-month-old girl in my community died yesterday from Leukemia. She fought for her life since she was 9 months old, and her body could no longer handle it.
Here’s her Caring Bridge website: http://www.caringbridge.org/visit/paxtenpearson
As you can see, her family hasn’t even had a chance to update it from yesterday morning’s status. If you have any words or help, I’m sure they could use them.
This is the 3rd death of a child I have read about this week, Ipray for all the families for having to be out through the pain.
still pray for you also
heather, your posts are always so beautiful. i discovered your site shortly after maddie passed away, and ever since the first day i read your site, i think of you, mike and maddie every. single. day. i truly am different for having known your story. even when i don’t comment, i am always following your life, checking in to see how you are all doing. and i am always sending love and hugs your way.
The death of a child sucks no matter how you slice it.
Wishing you love and peace.
Losing a loved one sucks. Period.
It’s people like you that make this world better.
We lost our first son, born at 27 weeks and 4 days. He lived for nearly 3 hours. We knew for nearly 3 months before that if he lived it would be nothing short of a miracle. No matter how long you have to prepare, it is still sudden and violent and harsh. Your world still comes to an intolerable halt, and you don’t know if you can go on another day.
Each and every child that has passed is, and was, a person, who should be remembered. Thank you for being there to remind the world of this.
Cole’s and Maddie’s lives mattered to so many of us who never knew either of them but only read about them through Jen’s and your blogs.
To the other posters here who have lost their own children, my heart goes out to all of you. Their lives mattered, too.
Beautifully written Heather. I know that someone will read this and you will help them. Thank you, as always, for sharing your story.
I am so sorry to hear this. I was diagnosed with leukemia (CML) 2 months ago. It’s the most treatable kind and still scary. I have a special place in my heart for kids battling leukemia.
Every life does matter and all deaths are very, very sad. A good friend of mine lost her mom to cancer last week. Your tips for helping grieving friends really helped, even though it was a totally different circumstance (not someone’s child who died), so thank you.
Grief makes people do funny things or at least think “funny” things. I remember after my first miscarriage my mom thought I should join a support group and I was afraid to because I couldn’t get through my head that my loss was real. I was feeling the loss but didn’t think I was supposed to. I remember a well known person in the community lost her 37 year old daughter. I was so afraid to tell her of my loss because I was afraid shewould say ” I am grieving 37 years and all you have to do is grieve 8 weeks” I couldn’t have been more wrong as I am now wearing her daughter’s sand dollar charm as my own. Thank you so much for sharing your story and your family.
As a nurse who has cared for children with cancer for 25 years now I can say that you have it ABSOLUTELY right Heather! Bravo! What matters is that parents hear how sorry you are. That you have no real words that seem right. That you want to hear and learn about their child. That you aren’t afraid to speak their name. That the tears and breakdowns of parents don’t scare you. That you will remember Maddie and her beautiful blue eyes and giant smile , her lovely curls and petite hands, her love of Matt Laurer and a red piano, that you will remember Maddie always. And I will Heather because in your deep and desperate pain you told me about her. So I will speak her name and Cole’s with confidence. Because these two precious children lived and mattered and changed the world! God bless Maddie. God bless Cole!
I saw a post of yours on facebook about his bithday. I sent Cole a bithday card it was the most special card I could find- one I had saved for my own sons birthday. It was handmade with pirates and a ship and was awesome! I hope he got many many cards and had the special birthday everyone wanted. I thank god every day for my two boys because every day is special. .
By the way…I’m glad you reminded me to tell you this truth…I’ve never met you, just read your blog, but Maddie’s life, shared through this site, matters to me, and I am so glad I got to hear about her through you.
Cole’s life meant something to me. I actually sent his folks a card to tell them how:
The day that Jen posted the stats on how many people wrote, emailed and called re: Cole, I was really having a hard time. Seeing the numbers of people who mobilized to help this little boy have a good birthday MADE MY DAY. And I needed it.
I came back to this because it made me think. (I went back to counseling because I never got over my grief of losing my grandma and it makes my anxiety flair up horribly and that has affected huge portions of my life.) I never realized that I do the same thing. When people talk about the grandma’s I get so incredibly jealous. I think “at least you have her”. Or if their grandma died suddenly I thought “at least you didn’t have to watch her die in front of you” but I didn’t realize they were probably thinking I was “prepared”. And I didn’t think that their grandma was “yanked away”. so as always, you made me think.
As I come upon the 9th anniversary of my gram’s passing my anxiety is better. And I wanted to tell you, it’s really helped me, you sharing your stories with us.
As someone who works in the field of pediatric palliative care, I thank you for writing this, Heather. I thank you for sharing these pieces of your very personal grief journey. I take these stories with me as I care for my own patients and their families and you’ve taught me so much. I’m able to better care for these patients and families because of it. You, Mike, Maddie and Annie are making a difference in the lives of people that you may never get the opportunity to meet. I thank you, they thank you. I think almost every family in my line of work has wanted to know that their child’s life, their family’s story, mattered. I hope you get the chance to one day meet Cole’s family and get to tell them that his life and his story mattered to you. I bet they’d appreciate that.
My baby girl was stillborn over a year ago, and just a couple of weeks ago, my husband’s step-dad said to us that if it had to happen, it was “better that it happened the way it did, before you got a chance to know her.” I was so stunned by that comment, I didn’t know how to reply. The truth is, that before I lost my own child, I probably would have thought the same thing. But I don’t know a single bereaved parent who would wish for LESS time with his or her child. Far from it being easier to not have known her, I constantly wonder what she would have been like, and I don’t have any happy memories of her to look back on. I envy any parent who has time with his or her child. But that’s NOT to say it would be easier or “better” to have lost her at any other point in her life. There is no “better” when it comes to the death of a child. I like the way you put it–manure stew or manure casserole. Either way, it’s completely shitty. And unfair.
I have thought about this myself, my father died suddenly. I have friends who have lost their fathers after long battles. I really can’t say which one is “better” Its shitty either way.
I can say that the MINUTE I saw Maddie’s face I adored her. I am a preemie mom too, my daughter was born at 29 weeks. Something about Maddie stole my heart. I think about her often, and you guys. My daughter was born just a few months before Maddie. Her life mattered to me, and I am truly different having known her .
Alexandra :) says:
For whatever it’s worth, I can definitely tell you that Madeline’s life mattered to me. I really hate that I didn’t know about her until after she died and I hate that she’s not here now. I love her eyes and her curly hair. I love watching videos of her (one of my favorite has always been the one with her singing and busting a move in her high chair, also Maddie’s music video always makes me smile). She was a gorgeous little girl and the world became a lesser place when it lost her.