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5 Ways to Actually Help Someone Dealing With Loss

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When someone you love loses someone they love, it’s near impossible to know what to do for them. The first thing I said to the first person I told about the loss of my baby boy was, “I know, there’s nothing you can say.” I knew there were no words that would make me feel better and wanted to let her off the hook.

My experience of losing my 5-week-old son to sudden infant death syndrome has taught me a few things about how to deal with other people who are dealing with loss. I’ve come up with a list of the best ways to really help someone in the emotionally taxing situation of losing a loved one, in hopes of helping you navigate those complicated waters.

1. Write something memorable in their card.
The only thing I really wanted from people was to know they were thinking about me and my family. Whether someone sent a card, flowers, a text or email, it was so great to know they had us in their thoughts and prayers. Knowing so many people were thinking about us and praying for our comfort really helped me cope with those raw, early days following my son’s death.

2. Make them a meal.
For me, the grief from my loss was so consuming, simple things like making meals and cleaning the house were tasks I just could not do on a regular basis. For the first several months, every day was completely unpredictable and I would never know if I’d be able to function that day or be stuck in my bed under the covers. I remember the meals the most and appreciated them immensely because of the amount of time, effort and thought someone had put into that simple act. It’s easy for you but could mean the world to someone who’s grieving.

3. Give them your phone number.
I had a lot of people I could call when I had bad days, I just usually chose not to. Still, when someone just gave me their phone number or email address and said, “Call or email me anytime” I was beyond grateful. The gesture meant so much to me, whether I used them as a resource or not. Then, when days came up that threatened to take me down, I had a network of people to help with my daughter when I encountered an emotional crisis. Some of the numbers I got saved me several times.

4. Check in regularly.
Right after the death of my son, everyone was wonderful. Condolences were numerous and hugs were plentiful. Then, a few weeks after the funeral, the calls and contact became few and far between. This was extremely hard for me because I felt like I had no support. My suggestion to you is to set a reminder on your phone for every two weeks (or whatever amount of time you are comfortable with) to call, text or visit the person who recently lost someone. You thinking about them long after the hubbub of the funeral will mean the world to them.

5. Be genuine.
When talking to them, be as sincere as possible. Look them in the eyes and convey your genuine sympathies. Keeping in mind the constitution of the person, you can hug them or give their arm or hand a squeeze. They will appreciate it so much more than pointless platitudes and standoffish behavior, both of which do them no good. Most of all, do not tell them they’ll get over it or time will heal their wounds. They know that already. They just need your support.

I hope this list was helpful and gives you an idea of how to help someone who is dealing with loss.

What tips or ideas would you add to this list?

Follow this journey on Melanie Meditates

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Why I Was Wrong About the Clichés I Heard After My Daughter’s Death

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When Eva was born and has since died, I heard a lot of clichés, euphemisms and platitudes that get thrown around when something inexplicably tragic happens. After she was born, the clichés I heard the most were the ones about being a special needs parent. I was told I would meet so many amazing people. I was told that I wouldn’t change Eva for the world. I was told that she would make me into a better person, a stronger person.

I hated hearing those things. I was angry and desperately sad, and I didn’t want to be a better person. I didn’t feel like anyone special. And I didn’t want to be. I wanted the life I had pictured. Not the one where through my miserable and desperate life I would become better and stronger.

I also didn’t want Eva to have to take on the roll of teacher. Why should Eva be responsible for teaching the world about compassion? Why should it be her job to teach her mother about how to live? She didn’t owe anyone anything and being born with those kinds of challenges is not a gift. We can do the best we can with the challenges we face, but that doesn’t mean those challenges are fair, or good or something to be thankful for.

Eva was beautiful and taught me so much, but it wasn’t her job to do that. And while I like the changes she made in me, I would change them back if it meant she could still be alive. I would change them back if I could have given her sight, hearing or a heart without a hole. 

But without trying, or having to or knowing it, she did change me.

I talked to a friend recently and admitted I had found the week hard. Some weeks feel that way. We talked about my feeling of wanting the world to stop, and she told me she was impressed with how I mostly force myself to keep up with the world even if it’s not what I always want to do. And then she said something which should have been obvious to me, but somehow wasn’t. She said, “The irony is, I think it’s Eva that has given you the strength to do that.”

She was right. Being Eva’s mother has changed me. I have no doubt that it has made me a better person. And I am certainly stronger. Having the wonderful girl in my life has given me the strength to get by without her. I could say I wish none of it had ever happened. I would be the person I was before Eva, but I also would have never had to face this loss. And I don’t want to do that. When I looked at that “better person” everyone kept telling me about, I couldn’t see her properly. She was out of focus. But now I see part of being this better person is the realization that you love that change in yourself because it comes from your fierce love for your child.

Those placaters were right. I am stronger. I do feel different. Sometimes that difference hurts. Like when I go out with some friends and I feel like I can’t quite squeeze back into that life that I once had. I feel like I don’t belong there anymore. But most of the time, it makes me feel lit up from the inside. It makes me glow. On that same night when I didn’t feel quite part of the scene or I felt like I was on the outside looking in, I also felt a level of comfort in my own skin that I never did before Eva. I felt a confidence in myself that is new to me. Eva taught me what it means to be alive, and she helped me realize it’s my life to live. That I’m the one behind the steering wheel. She taught me I’m enough as I am. Just as she was. She taught me that I don’t need to please everyone and don’t need to be friends with everyone. I can just be me. And that’s enough.

I wish she was living her own life alongside mine. I wish this new stronger me hadn’t come at such a cost. I wish I could have this woman with Eva by my side. But I’ll be forever grateful that I had her in my life at all and that I was mother for a brief time.

A version of this post originally appeared on The One in a Million Baby.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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To the Mom I Didn’t Mind Making Uncomfortable at the Playground

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I truly was enjoying our conversation at the playground. It was full of all the fluff and chit-chat I’ve come to appreciate as the mom of a young child. I find that these random mom meetings are a nice way to pass the time.

Then it happened.

Unfortunately, I knew it probably would. You asked a common and seemingly innocent question: “Is she your oldest?” I knew it would have been simpler if I’d glossed over the question, and I could have answered several different ways, but I made the choice a long time ago to always answer this question honestly.

“No, she’s not my oldest. My oldest passed away shortly after birth.”

The sweet look on your face faded. A look of horror, bewilderment and sorrow blended together before you were able to recompose yourself. I know that wasn’t the answer you expected, and I hate that in a split second our nice happy conversation suddenly shifted into an awkward moment. Silence lingered for a few seconds before you managed to mumble, “I’m so very sorry,” then glanced away.

As I turn to watch my daughter, ignoring the hovering silence, I wonder what you are thinking.

Although I’ll probably never know, I’m guessing you wished you hadn’t asked that question. I know I made you uncomfortable, and while part of me wants to apologize, the other part of me is unapologetic. I’m sure that sounds mean, but I don’t mind making you uncomfortable because my son, however brief his life, was important. He matters. He was cherished and dearly loved. His life had value, meaning and made an impact on this world. His life may have been limited due to his condition, but he still had life. That life is worth talking about, even if it makes others feel uncomfortable.

Although I knew it would make you uncomfortable, I didn’t really care. You see, I don’t just answer this way for myself and for my son, but because I know that many moms bear the burden of pregnancy and infant loss silently, too afraid to make others uncomfortable. This won’t end until we start breaking the silence. Moms won’t share until they know they can do so in a way that will be comfortably accepted by others.

I don’t mind making you uncomfortable because, by mentioning my son, it also gives you the opportunity to share about the babies you might have lost, which has happened several times after sharing openly about my son. If you can overcome the sense of feeling uncomfortable, you will realize that through my openness and honesty I have created a safe place for you to share with me as well.

So next time we meet at the park and you see me sitting with my daughter playing in the sand, I hope you feel comfortable enough to talk to me again. I hope you are willing to ask me more questions, maybe even questions about my son. I’d love to share him with you. And if by chance you’re a loss momma, maybe you will feel comfortable enough to tell me about your children — all your children — even the ones you’ve lost.

bethany conkell playing with daughter in sandbox

To read more about my son, please visit Purposeful Gift.

Author’s Note (added June 15, 2015):

Dear Reader,

Due to a large amount of controversy and confusion that has occurred surrounding my article, I feel obligated to clarify a few points. First, and most importantly, please realize I never wanted to make this mother uncomfortable. That was not my goal, nor my intent in sharing about my son. I simply answered her question honestly and said that my first passed away. By answering honestly, I knew it would probably make her uncomfortable, and that is sadly what happened. When I told her my son passed, I said it very calmly, gently, and in the kindest voice I could use. I did not yell at her, shame her, say nasty comments to her, or try to make her feel bad for asking. I simply answered her question with honestly. Answering honestly is what made her uncomfortable.

Many folks stated that I should have continued the conversation to help the other mom understand and ease her discomfort. Please realize that I typically do try and continue the conversation. I typically follow up my initial statement by sharing what a blessing our son’s life has been ( even if it was short), how he became an organ donor, how proud we are of him, and how he continues to touch lives. Unfortunately, people do not always give me the opportunity to continue the conversation or share these things. Sometimes people allow their level of discomfort to end the conversation and do not give me the ability to continue sharing. I would have loved to share more with this mom! Sadly, I was not able to this time.

When I first lost my son I felt horrible when I mentioned him and saw how uncomfortable it made people. I would apologize profusely. However, I no longer apologize and I no longer mind making people uncomfortable (as I stated in the article). I have come to realize that there is a horrible stigma around infant loss that needs to be changed. I also have become confident in the fact that my son is worth talking about … even if it makes a person uncomfortable. This was the point of the article.

Some people also did not realize the entire second half of the article was the internal conversation that I had with myself. I did not actually say those things to this mother. The second half of the article shows why I believe it is important to share about my son and why I would encourage others to share about their loss as well.

Finally, I realize that not everyone in the loss community is comfortable sharing about their loss. That’s okay. I was not saying that others have to share about their loss – rather that I know many wish they could.

Thank you for reading. I hope this clarifies and helps. Hugs and prayers for the families who read this article and have experienced the loss of a child.

Bethany

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When a Man Asked If My Baby's Death Felt Like a Relief

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I was at sign language class last week, and the instructor started going around to each person, asking them if they had children. This was all without words of course. I was sitting beside my new friends with their gorgeous baby girl at the end of the circle. As he asked each person, I felt panic rising in my chest. Do I say I have a daughter? How do I indicate she has died? I didn’t know the sign for that, and all the things I could think of to indicate it were grotesque and inappropriate. I thought about the silence that would descend on the already silent class after I signed that yes I had a daughter but she was gone.

When he got to me, I shook my hand and head. No. No children. I’d promised myself I wouldn’t deny Eva, ever. But in a language where I couldn’t explain, couldn’t reassure, couldn’t sum up, I was stumped.

I thought about it all night. A week later, I’m still thinking about it.

This baby should not be denied.

The next night I met a man who worked at a pediatric cancer fundraiser. I told him about Eva, and he was asking various questions about her. Then he paused and said, “I’m going to ask you something you’ve probably been asked before.” I tensed up, ready to respond.

“When she died, did you feel relieved?”

I didn’t pause to think.

“No. No, I didn’t feel relieved.”

He nodded and smiled, and I saw pity in his face. Like I should have felt relief. Like I was under some spell that stopped me from realizing the truth. Like he knew better and I was the lovestruck mother who couldn’t see the forest for the trees.

I wanted to make him see.

“I know where that question comes from,” I started. “I think before Eva I would have thought someone in my position might have felt relieved.”

I paused. How do I convince him or anyone that her life was worthwhile in and of itself?

“She was a very happy baby,” I started and faltered.

Telling people she was happy isn’t enough. People have this idea of children with disabilities — that their happiness doesn’t shatter. It’s a myth. Children are children. Children with issues around mobility or senses or development will find some things frustrating, just like any other child. That frustration can be difficult to handle. I can imagine when Eva got older, she would have made that frustration clear to me, either physically or verbally. I’m confident it would have been difficult. Very difficult. For me and for her. This difficulty would have challenged me, but its absence doesn’t make me feel relief. When our toddlers hit us and bite us and scream at us (which they all do, condition or no condition) we might throw our hands up. We might find it difficult. We never once wish them gone permanently because of it. An afternoon off, sure! But their death would not be a relief.

Maybe I was spared of those moments, those times when Eva wasn’t a “happy baby.” Maybe I’ve been spared of a future where Eva, like many other kids with CHARGE syndrome, decided to stop sleeping at some stage of toddlerhood. I will never know what her future looked like. And that doesn’t feel like a relief. It feels like a life sentence. I can imagine what she might have done, but I will never know.

It doesn’t feel like relief to me.

I wasn’t prepared for that man’s question. I will be next time.

Trying to define her worth by saying she was a happy baby is not enough to me now. Her life had quality and an essence all its own. She was a person. She didn’t have to be happy for anyone else but herself. She didn’t have to prove anything to anyone. She showed people a lot, but that wasn’t her duty. She existed and experienced and laughed and loved. She owed no one anything. Just as I owe no one anything. And you owe no one anything.

This man’s question comes from a specific place. He works with families with sick kids. Families who may see their children suffer. His question comes from a place of seeing Eva as a baby who was suffering.

CHARGE syndrome is not an illness. It was something in Eva’s genes, just like her blue eyes and her lovely blond hair. It was in her, but it did not define her. She didn’t suffer from it, although parts of it did cause her pain and sickness.

Eva was a person who I was excited to see grow and develop in whatever way she saw fit. She would have had challenges, and I was ready and willing to help her face them. I was looking forward to trying to make the world fit her, rather than the other way round.

Eva was not my burden. So no, I don’t feel relieved.

A longer version of this post originally appeared on The One in a Million Baby.

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To the Strangers Who Tried to Save My Desperately Ill Son

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To the doctor who told me that she could fix my 11-month-old son’s reflux issue and patted my shoulder when I started crying from relief…

To the same doctor who cried with me the next day when my son was readmitted to the hospital and we didn’t know if he would survive…

To the team of doctors and nurses who tried to save my desperately ill son…

To the doctor who sadly told us there was nothing else to be done…

To the night nurse who gently rearranged Sammy on the bed so I could cuddle with him all night on his last night on Earth…

To the unit coordinators who strung beads on bracelets so our entire family could have SAMMY on our wrists…

To the person who came and took handprints and footprints of our baby boy…

To the day nurse who turned on a Christian radio station and reminded us to have hope…

To the same nurse who turned off the monitors and the medicines keeping our son alive, and wiped her own tears as she left the room so we could cuddle our baby as he left us…

You were all strangers to us, yet you showed such compassion and care. You made the worst weekend of our life the best it could have been. I don’t remember any of your names, yet I remember the love I felt as you cared for Sammy and our family.

Thank you doesn’t seem to be nearly enough, but it is all I have for you.

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The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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What I Wish Others Understood About Almost Losing a Child

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Most people dread looking at the back of the fridge, fearful of seeing some lost piece of deflated mystery food. I hate looking in the back of my fridge because sitting there is a tiny bottle of morphine. Our hospice kept it at our house to help my daughter pass away peacefully. My daughter, by some miracle, grace of God or luck, is still alive and kicking. And boy, does she kick hard! But that little villainous bottle still sits there, tucked away, as a grim reminder of how close we came. I avoid venturing too deep in the fridge for fear of seeing it accidentally. All those emotions, pain and uncertainties come rushing back the moment I lay eyes on that small prescription bottle hiding in the shadows.

My daughter graduated hospice care in March of this year. When all this started, her doctors told us to “enjoy each moment” and “treasure every memory.” Code for: “Your child is going to die.” While we did and still cherish every moment we have with our daughter, we’ve reached a level of normal. Well, our normal anyway. God, do I love our normal. I wanted normal more than anything on Earth. The routine of bedtime stories, baths and toys has replaced monitors, oxygen and daily labs. At least for now.

When you almost lose a child, you never forget that feeling. People expect you to get over it because he or she is “better now,” but a small part of you will always be stuck at the bedside of your dying child. You will always play the “what-if” and “could-have-been” games in your head. You feel cheated and angry at times, sad at others.

It’s important people understand this: Not everything is fine just because your child is doing better. There is so much grieving that happens when you have a child with a life-long disorder and that doesn’t just go away. It may get routine, it may get more bearable and it may become (your) normal, but it doesn’t get easier.

Despite this, we have to keep going forward, even if we know the future may not be everything we expected. In the midst of those scariest moments, I didn’t think we would be where we are today. I have no idea what the future will bring and that is OK. We’ll roll with the punches.

I’m getting rid of that little bottle in the back of the fridge. I need to let it go. I need it gone. We all have our own reminders of those uncertain times. I hope many of you can clean your fridges out too, when you’re ready.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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