1. Don’t Tell Me How Strong You Think I Am
I didn’t choose to be strong. I didn’t pick this path for myself. Being strong is not the badge of honor you’re implying it is when you’re trying to compliment me and my efforts at not completely falling apart. I’m just doing my best to carry on. If there are others in the same position who didn’t make it as far or couldn’t handle being strong that day, don’t demean them by telling me how well I’m doing. It doesn’t change anything, for them or for me.
2. Don’t Tell Me My Child Has Survived So Long Because I Take Such Good Care of Him/Her
The cemeteries are full of people who were “good fighters”, and children whose parents took just as good of care of them.
3. Don’t Tell Me You’re Glad You’re Not Me
Duh. I wish I wasn’t in this position either. Thanks for pointing out how crappy it is, I didn’t realize…
4. Don’t Tell Me You Could Never Be Me Or Do What I Do
That’s a nice thought, again intended to compliment or praise, but the truth is that none of us ever thought we could handle something like this and more realistically still…you’re only saying this because just don’t want to imagine having to. It’s a natural defense, the inability to conceive of such a notion, but unfortunately I don’t have the luxury myself.
5. Don’t Talk About How Things Will Be “When This Is Over”
I don’t know how things will be, so you certainly don’t know how things will be. Furthermore, I can guarantee, that for any parent living through the terminal illness of their child “this” being over is unfathomable because that means their child will be gone.
6. Don’t Tell Me He’s/She’s In A Better Place
Assuming you know me well enough to know my religious beliefs, even so, please refrain from offering this useless platitude. For a mother facing the loss, or impending loss of her child, even one who believes in the idea of a better place, this does not help. What the mind can logically process the heart can never truly understand, and for that reason it will never feel ok that our children are not here with us and in our arms.
7. Don’t Tell Me You Understand
Unless you’ve lived the same life as me and suffered the same loss that I have, please, don’t ever tell me you understand. It doesn’t matter to me that your cousin, or parent, or dog died. It’s not the same. Even as another mother, your mind may allow you enough logic and reason to comprehend what the loss of a child is, but I tell you truly, you will never know what it is I feel.
8. Don’t Tell Me It Will Be Ok
You don’t know that, and for some of us it isn’t. Don’t downplay the magnitude of this trial.
9. Don’t Tell Me It’s Time…For Anything
There will be no “moving on”, there will only be moving past. Don’t tell me, based on your narrow outside view when it’s time for me to stop crying, start working, laugh more, yell less, go out, be social, or act “normal” again. I can’t predict when I’ll be ok doing those things, and you don’t have the authority to decide for me.
What you can do is:
1. Just Be There
Don’t stop coming around because it’s difficult for you. I’m sorry that it’s a sad situation. I’m sorry you don’t know how to talk to me. I’m sorry you’re sorry. I may not be best company, or the funnest party goer, but I don’t want to lose the people around me on top of losing my child just because it’s hard for you. I don’t want to be forgotten about.
2. Let Me Be, Let Me Feel
Don’t try to cheer me up or lighten the mood. Sometimes a mood shouldn’t be lightened. I need to process my feelings and get through my grief in my own way at my own pace. Sadness is a big part of loss, I won’t be happy all the time. Conversely, if I am happy, please let me feel my way through that as well. These emotions may change very quickly and I may experience them at inconvenient times, but it’s all part of the challenges of my learning to live life in a new way.
3. Tell Me About Your Problems
I still care about what’s going on in your life. I still want to be included in what’s happening around me. Yes, I’m dealing with something big, but it doesn’t meant that I don’t recognize struggles of any size. You don’t have to keep things from me because you think I already have enough to worry about
4. Don’t Ask What You Can Do For Me, Just Do
Yes, my laundry needs done, yes my grass needs mowed, yes, dinner needs to be cooked…no, I won’t ask you for any of it. And chances are that when you ask if I need anything, I say “Oh that’s ok, I’m fine.” Just bring a meal, come mow the yard, make arrangements for my husband and I to have a night out, give me a gift certificate for a massage, take me to get a pedicure, include our other children in activities. Show me that you care about me even when I can’t reciprocate.
5. Don’t Forget About Us Down The Road
When a crisis hits people tend to rally, and fast, but ever so slowly they taper off and the large group surrounding you offering support diminishes. A year or two or even more on we still need to know that you think about us, that you remember our situation, that you still care. As time goes on our trials may be different, but trials we will still have. No one ever wants to look up and feel deserted. Keep checking in with us, and keep showing us you’re still there for us.
6. Say My Child’s Name
It will not upset me. I will not be hurt. I did not forget that he/she died. Show me that you didn’t either. Say their name, it’s music to my ears. Give me a reason to talk about him/her. I need to know that’s it’s ok to say his/her name to you. I think about my child as much as you think about yours. You may have already heard the stories and seen the pictures, but please let me keep sharing his/her life with you. I don’t want to make you feel uncomfortable, but he/she is a person who existed, and I need to know that you remember that.
If you’ve lived through the loss of a child yourself, I invite you to respond to this post with information regarding what experiences from friends and family helped you, as well as what didn’t.
Miss Elliott, age two, in her mother’s arms. October, 2010.
Three Short Years Blog 
Excellent advise! Thank you for helping us understand from your perspective. In the Old Testament we are told that Job who had suffered so much loss, all of his children & their mates and then some, had friends who would just come and sit with him in silence. Would that be a comfort to you?
I’ve had a family member come into my home and tell me I’m morbid for having my dead sons picture in my livingroom . So I guess some people think that I should just forget about him like he never excisted 😢😢Its been 20 years since my son died in my arms and the hurt and emptiness is still there. I had 2 more boys after him but nothing or nobody will ever take his place. Mama Loves you Enrique Arnulfo Recinos.
I’ve had the same experiences! Horrible. I agree.
Our son commited suicide at age 35 9 months ago. A piece of me died with him that dreadful dsy. I have all those years of memories to carry me but somedays the pain is unbearable. My husband and his father turned away from me in my darkest hour of need…we are separating after 41 yrs of marriage. Most people say they dont know how I get out of bed each day. But I do as my son would not want me to fade away. I have 2 orher sons, 5 grandsons, elderly parents who all need me…thats why I cry mysrlf to sleep, then get up and start a new day. I work full tine and my “work family” is awesome. Sometimes I will just get a pat on my shoulder as they walk past my desk, others have held me as I cry during a meltdown. ONE DAY AT A TIME.
Such true words. Exactly how I felt too, how I still feel now I am going through it all again. Thanks xx
A dear friend of mine once told me something that I’ve deeply felt but been unable to articulate: the difference between pity and compassion is that pity includes fear — fear of suffering the same fate, while compassion is empathy and willingness to just be with someone.
Wow! Thanks for sharing that insight about the difference between pity and compassion. I loved it and it’s super helpful. It gives us permission to not have to feel like we have to “fix” anything, we can just be present with the person and love them.
Thank you for being so articulate about this, it’s normally seen as taboo subject.
My daughter died in 1990 and yet it feels like just last week. It used to feel like yesterday so I can see that with time, the pain is not quite as raw.
The never goes away, one never gets over it, one simply gets used to it.
(((Hugs)) to other Mothers dealing with this in their lives.
What an articulate piece…my 2 month old daughter died in 1980 from what they called SIDS. It took me until Nov, 2015, yes, 35 years, to figure out she died from vaccine injury. To say I am angry is putting it mildly. It took 9 years for me to process her death, with little to no support from family or friends, my marriage dissolved, I was afloat in a tattered boat and sinking fast. I thought I had finally “processed” her death and was slowly moving past the grief, the pain, the what is and why’s. Then in 1995, I became chronically ill, which set me on a path looking good for answers about my own health challenges. Which takes me to today. I am grieving all over again, now armed with the truth of what actually happened. I want to talk about Kelly, tell anyone and everyone that vaccines are dangerous and can permanently maim or kill anyone, especially children, with little to no immune system. I am using my anger to make a difference in the lives of others and somehow, honor my daughter’s life, short though it was. Thank you for the opportunity to share, one ore time, to speak her name and her truth.
Please tell me about Kelly and her story. I would love to hear about it and vaccine injury.
I truly am sorry for your loss. I would love to hear your story. It does scare me however, that many people are not vaccinating their kids now. As a Nurse, I’m seeing horror stories of children dying of diseases that were once eradicated due to vaccines. People coming from Third World Countries bringing back Mumps, Measels, even Polio and other very serious illnesses. One child dying due to vaccines is one to many, don’t get me wrong. I due want kids vaccinated, but I definitely want the vaccines to be safe!
It was helpful to us when someone offered to pray with us when we were having such a tough time. It was also helpful when a couple of people just sat with us, cried and grieved with us. Most people don’t know how to approach someone who has lost a child and they will mostly avoid you to keep from being uncomfortable. Many of the don’ts you mentioned happened to us and still are to some degree. I am thankful that God has carried us through this unwanted journey and we are able to share with others in their journey. Thank you for your boldness and trying to educate others so that they will help and not hurt those in deep pain from the loss of a child. Also, I am very sorry for your loss. My deepest condolences to you and your family.
I have a few friends that stopped coming around. They couldn’t handle the situation. It has been 16 years and they still don’t come around.
The best thing that helped is when people would talk with me about my daughter and let me talk and not be afraid to talk back.
The worst advise was……”Well you are young, you can have another child”. WHAT??? You can NEVER replace a child with another child. You don’t just forget about the one you lost. They lived, they were loved, and wanted.
It also helped to be with mothers that had been through the loss of a child. It made it feel like I was the only one and no one understood. There was a bond there.
I had a new friend that when my daughter died, she didn’t know what to say to me but years later when she lost her own daughter, she called me up and said “I understand now! Can you come over and talk with me?” . It was a blessing to be able to help her in her time of grief. I was glad I was then able to help her in a small way.
And let me just say it hurts just as bad no matter how old or young your child is / was,they are still your baby.my son was 37. So to say at least he wasn’t a baby or child is rediculas. ….
My daughter was 33, she was my first born. It’s only been 2 months, the pain is is indescribable. My friends have been wonderful, but unless you have lost a child, you can not imagine the pain.
I lost my daughter, Kristen, at nearly 1 year to what was classified as SIDS. She had a respiratory infection before she died and had just spent a night in the hospital due to low 02 saturation. We buried her on her birthday, December 29, 1996, in her Christmas dress. Time has made it easier to talk about, but it makes me feel uneasy to talk to others who don’t know my story. It’s like, it knocks the wind out of them. You don’t want to put other people through that. You don’t want them to feel sorry for you. It’s such an odd existence. Part of me lives on here, with my two living children, yet a part of myself is there with her.
I loved what you wrote. I lost my baby girl to trisomy 18 last May 26th and it’s so hard for me to make people understand what I’m going through. Sometimes I feel I´m the one who has to teach them how to be supportive about my grief. Of course, some friends and relatives have been awesome but somehow, I tend to hurt more for those who aren´t. Thank you for sharing this text. Would it be ok if I translated it into Spanish to share with other bereaved parents here in Argentina? It would be of great help for them as it was for me.
I’m so happy to hear that this resonated with you, but of course, saddened that you too must know the pain of loss. Please do translate it and share as you see fit as long as you acknowledge me as the author. Thank you, and God bless.
Thank you so much! Of course I´ll acknowledge you as the author. Every time I share a translation with other bereaved parents, I write a short introduction about the author I translated. Thank you again!
One of the most sincere things that was said to me when my daughter was born still was, “this just f-ing sucks”. Truer words were never spoken. They just understood.
I can’t even begin to explain what horrible things were said to me. The things I was accused of and the nightmare I went through after the nightmare of loss. I had a family member tell me I only wanted attention because I carried my child’s picture with me for the first few weeks. I was told not to cremate because I’d wind up making a shrine. And I was told that I should be over it after 5 weeks. I was ostracized for not going to a christening at that time. Could you imagine your own family treating you this way. People stopped talking to me, ridiculed me and even tried to humiliate me. It took a horrific circumstance and turned in to an unbearable one. I had to separate myself from them in order to survive. No one should ever have to go through that.
I lost my daughter Emma Rose in April 2014 from trisomy 18. I completely agree with everything that was said by everyone. The only thing that was said to me that really upset me was they day of her funeral my cousin actually told me “well maybe she just wasn’t meant to be”. When I was 20 weeks pregnant and got the diagnosis and was given 2 options, abortion or see pregnancy through and let nature take its course, I never once believed she wasn’t meant to be even after I knew the chances for survival were slim to none. At 36 weeks when they could not find her heart beat and my world came crashing down, never did I ever think that she wasn’t meant to be. I got to hold her in my arms for 6 hours before they took her, and by they I mean the funeral home had arrived, but even then while my heart was being ripped out of my chest did I ever think she wasn’t meant to be.
I lost my son in 2011. The anniversary of his death is today. I agree with all of these thoughts. People should also avoid using any cliches just because they are at a loss for words. Don’t tell me “Everything happens for a reason” even if I believe that it isn’t helpful when my infant son is suffering and dying and I cannot even hold him as I would, since it takes 3 nurses to transfer him to my lap. Also, I don’t believe that everything happens for a reason really. I believe that good things can be made of seemingly terrible situations and the most difficult trials, but no, there is no reason for my innocent infant to be this ill, and for me to not ever be able to take him to the home I prepared for him.
Hi. My name is Stephanie Ford my son Elijah Luke Ford had Trisomy 18 he lived for 34 days. My husband and I found out very early in the pregnancy that our son had Trisomy 18 if it was not for our faith and Jesus we would have never have made it through the hardest time in our life and marriage. We had to fight for our sons right to be born to live and to be treated. After our son passed in our grieving time we had people that judged us stop talking to us. We even had people that told us that they were praying for our baby to die because they thought he was suffering but he wasn’t suffering he never suffered. Let me Witness in our Darkest Hour Jesus never left us Jesus never judged us every emotion and every feeling that we went through Jesus understood and he loved us and he comfort me and my husband and gave us peace Beyond understanding. Through our pain and our suffering we were the closest to Jesus that we ever were we could literally feel and know that his presence was there and he was the fastest pain reliever I have ever taken. Elijah Luke Ford his story and more information is on Trisomy 18 Foundation website. My sisters and I are putting together a 5k in memory of Elijah Luke Ford supporting Trisomy 18.
I lost my son “Jeffrey Allen”, in 1969,. I truly miss him every day~~~ He was only 8 yrs of age. He was hit by a car riding his bike.You never get “over ” losing your child. You are not required to. Memories are our gift from God. I have felt his presence so many times. I see him in a bird or butterfly, when I am outside working in my yard. One lady made the comment “Well, at least she has 5 other children”. NO child can be replaced. I really truly know that he is in heaven with “God”.I will try and send a song to you that is beautiful. I really wish people would realize,we want to say his name ,we want to talk about him ,don’t avoid talking about him,we love his memories. Until we meet him again~~~~~.
Hi my name is Stephanie Ford. I lost my son when he was 34 days old. Elijah had Trisomy 18. That is so true. I love talked about my son. But it’s hard because some people don’t know how to respond or talk to me or they’re very uncomfortable.
When my daughter died at 2 months and 26 days young i went to the to the funeral home to hold her one last time. My mother in law called me and demanded me to put “that thing down” and how disgusting I am to hold “something dead like that”. This was so beautifully wrote! I love it!