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When People Say ‘I Don’t Know What to Say’ After My Daughter Died

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I lost my youngest daughter, Blake, this past August. She was diagnosed with a neuromuscular genetic disease called spinal muscular atrophy. She had the most severe form of the disease, referred to as type 1. Her diagnosis was terminal. When she was diagnosed at nearly 6 months old, I knew my world was over. My child was going to die and I couldn’t save her. When she died five months later, my world did fall apart.

Shortly after her death and ever since, I’ve heard so many times over:

“I don’t/didn’t know what to say.”

I understand. I think everyone would agree no one wants to say the “wrong” thing to a grieving parent. You may not say the right thing. But to be honest, in my opinion, there is no “right” thing. Our baby died (they are always our babies, even when they grow up). Nothing changes that, nothing eases that. In addition, everyone is different. The way we grieve, even for our children, is not universal. Some things will bother someone that wouldn’t bother someone else.

My strongest piece of advice as a bereaved mother? Say something. You will be uncomfortable; there is no doubt about that. But if you care, truly care, try to push through that discomfort. There is also the fear of disturbing a grieving family, which creates anxiety. Fortunately, we have so many different forms of communication nowadays: in person, on the phone, a letter, an email, a text message, Facebook. You don’t have to show up to someone’s house to say something.

If you’ve decided to say something but feel like there is nothing to say, I believe there can be. A phrase I have never heard another loss parent I know become upset by is:

“I am so sorry.”

A few more you can say:

“I am thinking of you.”

“I love you and I’m here.” (Only say this if you really do and you are.)

“I don’t know what to say, but I want you to know that I care.” When all else fails, say that you don’t know what to say. That’s still saying something.

Be mindful of making it about your grief. I heard “I don’t know what I’d do if my child died” or “This is so awful, I can’t even handle it, I cry all the time!” a lot. Those types of things can be the opposite of helpful and isn’t tending to the bereaved parent.

If you want to ask the “how are you?” question, be prepared for a real answer. In my experience, too many people ask the question but might not really want to know. If you can’t handle the raw emotions of grieving parents, do not ask them a question like that.

Please, though, keep saying something. In some ways we need support more in the long-term than the short-term. We never forget about our children; we are always grieving them and in pain missing them. The kindest thing you can do for us is show that you care. Continue to think of us and our child. Tell us that you care.

It’s never too late to say something. If someone says, “I should’ve said something, and I’m so sorry I didn’t. I let my own discomfort get in the way. I’m here now and I care,” it might not take away the hurt or the anger, but they are recognizing it and that’s meaningful. It can be a way of trying to show they care.

I may not always remember what someone said to me, but I do remember that they said something.

Follow this journey on Still Finding Sunshine.

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How the Facebook Page for My Daughter Has Helped Me as a Mom and Advocate

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Do you ever wonder why parents have a Facebook page or an Instagram account for their medically fragile warriors? Here are a few reasons I have a page for my daughter who battled and then passed away from a congenital heart defect.

It is important to feel like I’m not alone in the fight. It is helpful to know that others are with me, whether through prayer, donating resources, etc. When I log on to my social media and see that hundreds, maybe even thousands of people are standing by and thinking of our family, it makes a huge difference. It is encouraging to know others care. It can give me strength to know we are not isolated in the journey.

It is a great way to spread information quickly and easily. It may seem like a parent who is in the hospital with their child may have tons of time to make phone calls to update family and friends. But the reality is, it can be very busy and chaotic while being inpatient and even more hectic when home with a very sick little one. It’s helpful to be able to update everyone on important information or changes in the child’s health, all at once.

To spread awareness. I think this goes without saying, but for those of us with medically fragile children, it is imperative to advocate for more funding and awareness. It can hurt when it doesn’t feel like other people place a high importance on us. It may be easy to ignore a post with numbers and statistics, but when others see a picture and update on our beautiful children, it’s not as easy to just ignore what our child is going through. We hope others may feel a pull to help us spread the awareness and educate others on whatever is causing our child to be so sick.

It is helpful to organize fundraising, meals and other tangible support. Hospital bills, medication, equipment, etc. can significantly affect a family financially. Close friends and family can organize a fundraiser or set up a meal train and easily use social media to help rally the family’s support system.

As someone who has lost a child, I have a few additional reasons why I continue to post on my child’s page.

I can’t stand the thought that the world may forget about my precious child. After the first few weeks following a loss, the strong show of support can dwindle. It hurts to feel like others might be moving on. I want others to remember what a beautiful, special gift my child is. I want to be able to share a particular special memory and know that others get to share it with us as well.

I want to have a place others can celebrate my child’s life, too. Social media makes it very convenient for others to post memories, pictures, etc. about my child. It feels good to see others remembering and also celebrating my child.

I use it as a way to process my grief. I know for me personally, I have gone through more feelings than I even knew was possible since losing my daughter. It’s important to process these feelings. I have sought therapy, talked to friends, joined grief groups; but I also have found posting on my daughter’s page can be therapeutic. I don’t always have the emotional strength to keep up on a official blog, but writing short little thoughts on social media has helped me cope and come to grips with some feelings I was not aware I had.

Parents, what are some reasons you have a page for your warrior or in memory of your angel? Please share in the comments section.

For anyone who wants to know more about our journey, you can view my daughter’s Facebook page, Jaylee’s Journey of Hope.

Thinkstock image by opolja

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A Letter to My Beloved on the Day Our Son Breathed His Last Breath

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If I could go back and write a letter to my husband on the day our son took his last breath and tell him how he could love me best during the years that would follow, it would read something like this…

My Beloved,

Today our beautiful boy took his last breath, and we are left wondering how we will keep on breathing. I know for sure I cannot breathe unless you take my hand and breathe with me. I will need you to hold me, and I will hold you. I will need you to cry with me. Don’t hold it in. I will need you to sit in the horrible space of not being able to fix this hellish mess. I want you to know that you will always have permission to fall apart, and you will be required to watch me fall apart too. When it’s time to stand, I will need you to take my hand. I will be reaching for yours.

There will be fearful times when you worry if I will ever be the same. You should know now that I will not. But I am fierce and I am strong, as I think you have known since the day you met me. So with that knowledge, please trust that I will rise again. You will watch me rise and fall, rise and fall, rise and fall. You will catch me on days when you have strength of your own, and you will fall with me on days when our hearts collapse under the simultaneous rhythm of grief.

It will hurt that you cannot lift this pain from my heart. It will tear at your very being that you cannot fix this thing we are now forced to endure for the rest of our lives.

I will become the safest place and the most terrifying place to fall. I will be the one who can be present fully and understand your pain like no one else; yet I will also be the one who will be a constant reminder of your own pain. My pain will trigger you. Your pain will trigger me. And we will both have a choice, to lean in and live it together or to drift apart. I’m begging you today to always lean into me, to hold on tightly to us.

You will have to learn the very fragile dance of knowing when to give me space and when to pull me close. You know me enough now to know that mostly I need to be pulled in close. You will see me panic on days when I feel you drifting away. You will see fear in my eyes when I worry about you. I’m begging you to live. Don’t give up on you, on me, on us — we are all we have, my love. And when it’s all too much and you need to escape, please always come home. But whenever possible, escape with me.

Let’s take care of each other. I’m going to need you to remind me to eat and drink. I’m going to need you to take me to the gym. I’m going to need you to help me hold our crying children and parent them in the midst of our own brokenness. I’m going to need you to find a good show for us to binge-watch. I’m going to need you to go buy more wine. I’ll need you to talk to me — about your feelings, about my feelings, and about our beautiful son’s life.

Then the day will come when I will need you to dream with me. Dream about a future that looks far different from what we had planned, a future that somehow will allow us to grab ahold of his spirit as we live, heal, create, grow and explore. In this space of pain and healing, I will need you to love me more deeply than ever before. I will need you to love me as if I am now not one, but two — because from this day forward, I am me and I am him. Death cannot separate either of us from this boy who stole our hearts, so as I love you and you love me, we continue to love our son who is woven into the very DNA of each of our souls.

Today as we hold his body for the last time and find ourselves holding our breath, I ask you to learn how to breathe again with me, and love me like I am no longer one, but two.

Follow this journey on From the Heart.

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To the Friend of a Bereaved Parent

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I know you care for me, and I’m so glad you’re reading this. I know you can’t fully comprehend, nor would you want to, what it means to be a bereaved parent. Honestly, I’m still finding out for myself. To live without my child is not something I ever wanted to learn, and yet it’s what I have to.

I see that you want me to feel better. Let me assure you, you’re doing the best you can to soothe my pain, yet it is here and will be here… until it lessens. It won’t ever go away completely, and this is OK. Can you be OK about it with me?

Parents with baby in incubator in hospital

I hope you will have the courage to remember my child with me until we part. Please remember this: You may speak her (or his or their) name, you may remember her birthday or anniversary with me, whether that is by sending me a text message, card or flowers — it doesn’t matter, it’s the thought that counts.

Please do not fear my tears or my sadness. It means I’m thinking of her or missing her. It’s not that I am permanently broken or sick, just broken-hearted and grieving. Please have the courage to sit with me and my pain, without needing to fix it.

At times I might say, “I need some time to myself,” but more often, I do appreciate you being here, even without any words, keeping me company or doing something with me. Other times I might need distraction and I might even laugh and experience some joy and then feel guilty again and cry in the next moment. It’s OK, this is life and death: complex and paradoxical and not always to be understood.

You probably feel I have changed. You might even hope and wait for me to return to the “old me” again. I’m sorry, but that won’t happen. I’m forever changed. Losing a child is like losing a limb. Even though the scars of the amputation will heal, it’s a permanent change, and as much as it sucks, it is what is. I have to get used to it. Will you bear the chance to get to know me as your “new normal friend”?

I’ve chosen you as my friend because you have a big, compassionate heart, yet I know it’s (almost) impossible to understand the unimaginable. Don’t say things like: “Wouldn’t it be time to move on?” or “At least you have…” I know you might say those kind of things in an attempt to support me. I know you’re well-meaning, yet I’ve become sensitive, and certain sentences are like shards of glass on an already wounded heart. Even if you don’t understand, would you allow your heart to reach out and trust the sensitivity of my broken heart? (For examples on what to say instead, click here.)

I might not be up to celebrating pregnancy news. I might even feel jealous of those mothers who are joyously carrying their children. It’s not that I’m mean; it’s because my heart longs for my child, and seeing those mothers with their children is a reminder of what I don’t have.

With time and healing, I will be sad less often or cry less often as at the beginning. This does not mean I’m “over it.” My child lives on in my heart, and I will never get over the fact that I’m never to hold her hand in life. Please do not confuse my healing with “been there, done that.” My child might have gone with the wind, yet I’m still searching the world for signs of its fleeting presence.

Thank you for being here for me and with me.

Thank you for being my friend and having remained my friend through this.

Thank you for creating a new friendship with my “new normal,” self even though we wanted everything to remain as it was…

Thank you for remembering my child and therefore honoring me as her mother.

A version of this post also appeared on Still Standing Magazine.

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When the Sun and the Clouds Illuminated My Loss

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I cried on a plane the other day, fat tears rolling down my cheeks. Thankfully the plane wasn’t very full and I was alone in my row, so I was able to hide the evidence of my distress.

When flying, I manage to breathe through my anxiety during takeoff and landing, and I white-knuckle it through the turbulence. Still, I sort of enjoy flying. So it wasn’t being in a plane that made the tears leak out of my eyes. It was a culmination of a lot of little things, and nothing, at the same time.

Since my son died, I’m always close to tears — I have to acknowledge that as a reality in my life and simply deal with it. Mostly I do that by compartmentalizing: allowing myself to be work-Maria, or teacher-Maria or mama-Maria, when I need to be, and allowing safe zones for heartbroken-Maria to release any pent-up tears (like in the car on the way home from work, or pulling out the laptop to write when the pain inside needs to be vented). The lurking tears do not often ambush me in public anymore; I can usually contain them.

So that was me on a plane heading home after spending a few days in Auckland for work. I was looking forward to going out to dinner when I get home (Thursday night is date night), and relishing the fact that I have a window seat.

I pulled out my iPhone and took endless pictures of fluffy clouds. As I sat there contemplating all of the different guises the clouds presented, I stumbled back to a childhood memory of a picture of God, depicted in his flowing gown with arms wide, atop a big, puffy cloud, beaming love on the world below. That was where heaven existed for me when I was a child, atop the fluffy clouds. As I contemplated the simplicity of the outlook of a child, I thought about my son, living atop the fluffy clouds I was flying through. As one cloud drifted slowly by, the sun burst through like a star. The sun, illuminating the loss of my son.

I didn’t cry, even though I felt that heaven was within arm’s reach if only I’d been able to open the window and stretch my fingers out towards that cloud. If only. I didn’t cry, even though the pang of loss felt so astoundingly sharp as I thought about my sunshine boy, illuminated in his cloud. I didn’t cry.

And while I was sitting there, congratulating myself for holding it all together in the somewhat stressful environment that is called flight, over the speakers in the cabin the inimitable Roberta Flack began to sing:

“The first time ever I saw your face
I thought the sun rose in your eyes…”

There was an inevitability in that moment, my sunshine boy. You were so present with me on your cloud, just arm’s reach away. And the first time ever I saw your face, I fully believed that the sun rose in your beautiful eyes. And the last time… the last time… the sun went dark, and my life lost some of its magic

And so tears leaked out of my eyes as I sat in that plane, cloud-watching. Because sometimes, the little things all march together and remind me that my life is no longer illuminated by the son, and I miss you every day.

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Being Present and Supportive When a Loved One Loses a Child

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We lost our sweet daughter a few months ago. We were blessed to have caring friends and family, but we were also surprised to see how many people seemed completely absent from our grief process. My hope is that some of these suggestions can offer some practical insight on how to be sensitive to a friend or family navigating this particular type of loss.

Please don’t say:

“Everything will be OK.” No, everything is not OK. My child is dead and that will never change.

“It will get easier as time goes on.” I have spoken to many parents who have lost children years ago. Most of them all seem to agree that the pain never really gets easier. It may feel less raw, but it will always still be there.

“Heaven needed another angel.” First of all, I don’t believe my daughter is an angel. I personally believe she is in heaven but not as an angel. Heaven doesn’t need anything. I do. I need my child. Most grieving parents question a lot, and suggesting that heaven needed our child can just add to the pain.

“At least they are no longer suffering.” This implies that my child suffered. I did everything in my power to make sure she didn’t suffer, that she was always kept comfortable with pain medication, snuggles, and anything else we could do. It is very triggering to be told my child was suffering and now she isn’t. Second of all, science is amazing. In our situation, my daughter was waiting for a heart transplant. If she got a new heart, she wouldn’t be suffering regardless.

“It is so good you have their sibling/siblings.” This is probably the platitude I hear the most. Yes, I am so thankful for my other child; yes they bring me as much joy as possible in this situation. But you know what? It also means I watch them grieve; I watch them cry and ask for their sibling every single day. Watching them grieve is harder then experiencing grief myself. Also, children are not replaceable; having one does not change the fact that I do not have the other.

“My brother’s friend’s sister died too…” I have heard all variations of this. This hurts me a lot because it not only minimizes the pain I’m going through, but it makes me feel as though you do not want to hear our story and would rather talk about yours. Nothing shuts me down faster than this type of comment. I usually am not listening to your story about your brother’s friend’s sister… I am mentally planning out the best and most graceful way to escape from the conversation.

“I am sorry I haven’t reached out. I’ve been so busy with my kid’s activities and life is just hectic.” I get it. Life is busy. But please don’t say this. I would give anything to be busy like this.

Instead, here are a few suggestions for things you could say that I have found helpful. Just remember, everyone grieves differently.

“I am here however you need me to be.”

“Wow, your child is amazing. I would love to see a picture or hear more about them if you are comfortable sharing with me.”

“What can I do? Can I bring you dinner this week? Would Wednesday or Thursday work better for you?” We had so many people tell us to let them know if we needed anything. We were so deep in grief, we didn’t know what we needed. Also, we couldn’t sort out who truly wanted to help versus those who had no idea what else to say. Offering to do something specific shows that you truly want to help and also takes the pressure off the grieving parents to ask you for help.

Here is a list of things you can do that I also found helpful:

Give a gift certificate for housecleaning or food delivery. This is a great option if you do not live close to the family. Modern technology makes this simple. You can order almost any type of gift certificate online and send it to the grieving family’s email inbox.

Set up and organize a meal train.

Offer to do chores or yard work.

Babysit siblings while the parents have some time to work through grief and make funeral plans. Hopefully this goes without saying, but do this for free.

Just sit with them and let them cry while you hold their hand or cry with them.

If you have the finances, send a check to help with burial/funeral costs. No young family prepares for the cost of losing a child. We had several family and friends donate to us, which helped keep us out of debt.

Offer to help with any details that may be too traumatizing for the family. For example, a close family friend dealt with calling the medical company to pick up our daughter’s equipment and oxygen.

Purchase an item for the family to help them celebrate their child. Some ideas include: a necklace, keychain, picture frame, or photo album.

One important thing to remember is to not to add stress by offering to do something but asking the family to arrange it. The goal is to take stress away from the grieving family.

I hope these suggestions come across as helpful and not critical. The most important thing is to be present for the grieving parents.

Image via Thinkstock

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