Talking About Child Loss: Your Comfort Is Not My Primary Concern


Recently, I’ve made an effort to accept invitations to social outings, parties, and other ways to engage more in my community. I’ve also been very happy to stay at home so I don’t have to answer questions about my past. However, for the sake of my 3-year-old son, I’ve been more social so he has the opportunity to meet friends.

Almost always, when I meet someone new, I’m asked the question, “Is he your only child?”

I’m 45 years old, which is old to have a 3-year-old. People are curious and too polite to ask if I’m his grandmother since we very clearly look related. I know the question is coming and usually can gauge how I’m going to answer well before I’m asked. My son is not my only child. I became a mother in 2003 when my daughter, Ella was born. Ella was an extremely medically fragile child because of an injury at birth. Ella’s dad and I worked very hard to make sure she lived a full, rich life until her death at the age of 11.

mother and daughter wearing hats in a boat

This fact about my life frightens people. I get it, child loss is very tragic, but it is my truth.  

Basically, I receive one of two reactions when I tell people about Ella’s death. Many people want to hear more about Ella, her life and death. They ask questions and stay by my side as I elaborate. However, more often, people don’t say a word, give a blank stare, and find the quickest exit to get as far away from me as possible. As if child loss were contagious.

When I encounter either of these reactions, I find myself trying to make the questioner feel better, more at ease in my presence and with my pain. I quickly create a happy ending to my story. Wrap it up and make my pain easier for people to digest.

Sometimes, when asked the pressing question, “Is he your only child?” I’ve answered, “Yes, he is my only child.” However, this response makes me feel extremely sick to my stomach. I feel like I’m betraying my daughter and her memory when I fail to mention that she was my precious first. Nonetheless, when I answer “No, I have a daughter, who died 4 years ago,” I feel pressure to “fix” their feelings. I emphasize that my daughter had a severe disability, cerebral palsy. Somehow, this fact about her makes it “ok” that she died because she was severely physically and mentally impaired.

Finally, I wrap my response up with the tidy and happy story of my surprise pregnancy and our healthy rainbow baby born a year after my daughter died. This response also feels so very wrong, unpleasant, fake and sickening to me. I’m not honoring my own pain or my daughter’s very important memory. In the ridiculous effort to make people feel better, I end up making myself feel much, much worse.

After repeating this situation many times over the past 4 years since my daughter’s passing, I’ve come to the conclusion that this, other people’s comfort with my story, is not my problem.

My responsibility doesn’t extend to people’s reaction to my story. Their comfort is simply not my problem. Trying to sanitize or make my pain more palatable for the sake of others is silly. Life is messy, difficult, and tragic at times. This is reality- life- in its most beautiful form.  I’ve worked very hard to get to the place where I am in my journey of, woman, child, family

Trying to make strangers feel better about my pain is not my responsibility.

I understand my story is tragic. Most people can’t even imagine raising an extremely medically fragile child who ultimately passed away at the young age of 11. They shouldn’t have to; it’s pretty horrible. However, this is my life and if you ask about my history, I will freely share my whole, ugly, painful, beautiful truth with you. My hope is that others will feel free to share their truth with me if they feel inclined to. My story is no more tragic or important than anyone else’s story, grief is all relative. We all have the right to share and be heard.

For me, it’s also very cathartic to share stories about Ella, it keeps her memory alive for me, her dad and her little brother. Sharing stories and talking about my amazing daughter is one of my favorite things to do. She graced our family with her presence for 11 years.

Being her mom was very difficult at times, but is the most incredible thing I’ve ever done. She has been a huge part of my life and growth. I can tell you stories of triumph and tragedy with a huge smile on my face because I survived. I speak the truth, my truth.

Elizabeth Edwards speaks to this:

If you know someone who has lost a child, and you’re afraid to mention
them because you think you might make them sad by reminding them that
they died–you’re not reminding them. They didn’t forget they died. What
you’re reminding them of is that you remembered that they lived, and
…that is a great gift.

mother and child, both wearing shades of red.

As women, we are natural fixers. We fix dinner, we fix boo-boos, and we fix messes made by others.

However, there are some messes that we don’t need to fix. How other people react to your story is not your responsibility. The responsibility lies in our understanding that sometimes people just can’t hear what we have to say and that’s ok. There’s no need to take offense, get angry, or normalize an impossible topic in order to protect a stranger’s feelings.

We don’t have to filter our experiences to make others comfortable. We don’t need to compromise our own feelings for other people. I’ve found that when I don’t speak from an authentic place I’m not honoring myself, Ella or my family. Omitting my truth closes me off and doesn’t allow relationships to form.  

Not everyone wants to hear my story. Not everyone wants to be my friend and that’s totally fine. However, I should be able to speak my truth without any concerns and so should every human on this planet. Without apology.

Are there circumstances in your life that you omit when you meet someone new? How can we encourage others to share their truth with us?


mom, dad, family, talking about child loss



  1. Thank you so much Julie for opening this discussion.
    As you know, I lost my son Nicolas as well. After 26 years of immense love, dedication, and gratitude.
    Living 26 years with a severely disabled child already creates an impassable gap between you and the rest of society. I had long since stopped trying to explain my ‘privilege’ to parents of ‘normal’ children. During these years at the Center, I met hundreds of families from everywhere, from different cultures and with whom we have immediately communed without even having to explain our daily efforts, battles, hopes, victories and deceptions. I vividly remember the incommensurable love and gratitude you and Dave showed to Ella when you used to come at the Center. How to explain that the special children teach us the very essence of life and that being by their side, serving them is an immense privilege in one’s life?
    As much as society does not understand these things when they are alive, it is beside the point when they pass away. Even worse, many people tend to see their departure as a ‘blessing’ for us (you will from now on be ‘free’ to live your life!!!), while we see it as a tragedy. We lose our landmark, our spiritual leader. The doctor who came to certify Nicolas’ death at home told us: ‘You will from now on be able to enjoy life a little more.” I looked at him and retorted: ‘It will never be up to what we have lived here with him.” He was just puzzled by my answer.
    When I am asked how many children I have, I just say two. Nicolas and his brother Louis-Philippe. Very often, its stops there. If they inquire about their age, I answer 26 and 28. ‘Oh, they are very close to each other!’ they say….’Yes, they are. 15 months apart!” They live close to you? One in Montreal and the other in Heaven.” And then, I see the discomfort you are talking about. But I very rarely have to go that far. People are not that interested in knowing more than their age. I think it is often more us who feel compelled to let know about our story, we are the ones who specify that our child passed away.
    Don’t take me wrong. I am not hiding that Nicolas died. But it is by talking about him at the present tense, that I feel most loyal and faithful to him. Talking in the past tense about him, for me, is acknowledging the end of his existence while in my mind and my heart, Nicolas is fully alive. He just changed dimension. I constantly feel his presence, love and guidance.
    It is my conviction that it is our duty now towards Ella, Nicolas, and all the other angels who give us the immense privilege to cross our life to not just grieve their physical presence but to live the life they wanted for us, they sacrificed themselves for, a life filled with joy and purpose and meaning. They are still around, let’s not disappoint them.
    This being said, you will find very, very, very few people who will understand this in the society. I don’t even try. I limit myself to say: “His presence in my life has been the richest thing I ever experimented.” It makes them feel somehow more comfortable, even if they don’t understand what I am talking about…and to me, that is the simple truth.

  2. Great post. This touches me deeply. I have one son. I’m still within an appropriate age bracket to be perceived by others as young enough to have more children. So I get asked if I’ll have more. And I constantly weigh whether I mention that I was pregnant a second time and lost that child to miscarriage. That the loss was devastating and tragic. That a part of me broke off. That I believe I’m the mother of two. One here and one beyond. I hate the blank stares or the ones filled with pity. I want neither. And so I take it case by case to whether I open up and share. Thank you for reminding me that I don’t need to make anyone else feel better.

  3. Beautiful. As a baby loss mom myself, I appreciate those who speak up. We all want to talk about our children whether they are with us or not.

  4. This post made me feel a bit better about feeling awkward at times when I’m taken by surprise by actual, honest conversation. Sometimes we fall into the trap of going through the motions in social situations. But then if something real is shared, we might not be prepared. I’d rather the truth be offered, and not some kind of homogenized version to buffer my reaction. How pitiful that would make me! And the more experience we have with this, the better we can interact, listen, and share our own truths. Thank you for writing this, Julie. xo


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