The Silent Choice I Had to Make After the Death of My Mother

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It was the last day of June.

My wife and I walked back from the veterinarian’s office, where we had just said goodbye to our long-time family pet. An old, mixed-breed cat, cranky to everyone but me, who had moved to half a dozen new homes with me over the years.

Before we entered our building, something came to mind.

“You know, I can’t remember the last time that I really grieved,” I said.

I had lost my grandmother a little over a year prior, but I had lived away for a long time. She had declined significantly through dementia by the end, and I didn’t really have much contact with her. I was sad, especially for my own mother who was so close to her.

But it wasn’t grief — I’m not sure that I even knew how to do that. I felt silly that losing this old cat who had been with me since high school seemed to affect me so much.

The next day was the first of July, Canada Day. We were hoping to shake off the sadness by participating in some of the day’s festivities.

Shortly after getting out of bed that morning, the phone rang.

My wife accidentally answered on speakerphone and fumbled around to switch it back. Before doing so the voice on the other end, my sister’s husband, spoke uncertainly.

“I’m sorry to tell you, your mom passed away last night.”

“Hang up the phone,” I said sharply.

I was instantly offended that anyone could play such a cruel prank. After our years of shared struggle, my mother was the closest person I had. Each of the half-dozen or so times she had to leave home to find somewhere happier, safer, it was always she and I who went together. She was the only one who got me, and everyone knew it. She was off-limits.

My wife finally managed to switch the call back from speaker and listened, her face as set and pale as limestone.

I felt my heart beat in my chest, hard, exactly six times.

Then it stopped. So did the rest of the world. My skin went cold.

Mom was 58.

Everybody knows it’s going to happen eventually. While we never seem to fully expect or believe that it will happen, we certainly don’t when it’s 20 years ahead of schedule with no warning.

The death of a parent can mean as many things to as many people who experience it.

For many it provokes grief, for some more intense than others. For some it’s a measure of guilty relief. For all its costumes; there is no right way to grieve. Trust me, self-styled, intellectual types like myself have been unsuccessfully groping around for it for centuries.

For all of us, however, it’s a reminder of perhaps the oldest and only absolute truth.

As certainly as we’re born, we will die.

I’ve spent more than half my life as a participant in the mental health sector — both as patient and professional. For the average person, the concept of parent is among the most profound and complicated.

Everything we are, everything we know for sure, for better or worse, has been germinated within at least the idea of a parent.

The boring little suburban family that still manages to manufacture enough relative melodrama to fill that necessary space in the home. The single working mother who sacrificed a life with her children in exchange for their being able to eat. The accidental father who wants to do right by his kids but paradoxically wrongs them as a means to this end. Same-sex parents, adoptive and foster parents, grandparents and more are not exempt from influence.

All of these that unleash children into the world share a little piece of their family psychology, and of themselves. We usually discover it most offensively when something changes, strips us of all pretension, and lays our basic inner workings bare.

Should we ourselves become a parent, in blood or name, our past becomes doubly weighty.

At the same time that we’re juggling our relationship with our own parents, we’re crafting our own. Usually we do unto ours that which was done unto us. We repeat the refrain we know. Of course, we convince ourselves it’s different this time, every time. Lather, rinse and repeat.

Immediately following the sudden death of my mother, I found myself deciding whether or not I would step off the platform edge into the path of the oncoming subway train. This was my silent choice, twice a day, everyday, for three months.

This part wasn’t new.

As a teen, my mother made up the hours she missed at home by spending them with me in emergency rooms. I was diagnosed with depression and an anxiety disorder in early junior high school, following a suicide attempt. Having not received much in the way of follow-up care or community or family support, I found myself in the hospital so often for suicidal ideation and attempts that they knew me by my first name.

But here I was all these years later, seemingly against every learned emotional impulse in my body and mind, I chose to stay alive no fewer than 180 times in three months.

What changed?

Occasionally we mindfully inch our toes beyond the iron-clad walls of that which is expected of us. We create our own new patterns, anchored in the only life we knew.

I was a parent this time, to start.

Mom was by my side in the delivery room when our son, her fifth and youngest grandchild, came into the world with no lack of dramatic flare, only about a year and a half prior. For much of the labor, she sat quietly scribbling down nursing notes on some scraps of paper in her pretty, even script. She wasn’t working, it was just a thing she did. She wanted us to have these written memories later, so we could be in the moment then.

Now I had a new set of expectations, obligations and desires. The best way I’ve found to cast a different light on that which has become old is to build something new.

But it was more than this.

There was still that old voice, the voice of depression, that sometimes whispered from the dark corners of my memory for me to end my life. But now there was also a newer voice in me that knew I didn’t have to. This was my voice, and it was louder.

We need to reframe the story of our past as a high floor, rather than a low ceiling. It can help us to stand a little taller. It can help us to take what we all already have and make something new from it.

Sometimes, hope can be found in how you use the pattern you have to create the one you want.

My mother and I spoke by phone the night that she died. She comforted me, in the way that only a mother can when her little boy has lost his pet.

We ended that call with the same words we had for years, for my whole childhood, and all the years after. They’re the words that have become for me a pivot point, from my past to my future. They’re words that have become my own philosophy for parenting, for continually recovering, and for letting go of the past.

“I love you, goodbye.”

a young man and his mother sitting together and smiling
Mark and his mother.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

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10 Things Funerals Have Taught This Pastor

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At the ripe old age of 33, I’ve been to more funerals than most. Some I’ve attended as a friend or family member, but most I’ve officiated at as a pastor. 

Here’s what I’ve learned.

10. Everyone grieves differently.

That 15-year old over in the corner with his headphones in? He’s grieving. He may not cry. But listening to Blake Shelton is helping, and that’s OK.

That 83-year-old who insisted on wearing a loud, flowery dress to the funeral? It’s her way of grieving the loss of her colorful friend.

You might cry at the funeral. You might not. You might cry at the grocery store checkout weeks from now when you can’t decide whether to buy spearmint gum or wintergreen. Grief is unpredictable, and it’s different for everyone.

Be patient. And when you can’t be patient anymore, be as kind as you can be. Realize the impatience is probably part of your grief, too.

9. Let the stories out.

As a pastor, I’m often in charge of crafting the funeral message. Sometimes I know the person who has died; other times I’ve never met them. So when I meet with the family, I start with story.

Some good questions to start stories flowing:

When he was at his absolute best, what was he doing?

What was her favorite time of year? Why?

Did he have an article of clothing that you’ll always associate with him?

When you picture her at her happiest, where is she?

8. Don’t hold people hostage.

Long funerals can be brutal. Not every story needs to be shared. Save some for the reception. Write others in letters.

Grief is exhausting, and long services can wear out elderly relatives, young children and, well, just about everyone. As a pastor I encourage families to keep things on the shorter side — an hour or less — because they will likely be more tired than they realize.

7. The funeral is just the beginning.

A funeral can’t sum up someone’s life. It is just a start.

After someone dies, much time and attention goes toward planning a service. Then everyone goes home. Those facing serious grief are left alone. The meals stop coming. The laundry has to be tended to once again.

It’s helpful to remember the funeral isn’t the end of the grief. It’s a communal remembrance that starts the long, long process of adjusting to a new normal.

If you want to really love on someone who’s grieving, bring a meal a month or two after the funeral. See if they want to talk about their loved one.

6. Food helps.

At the funeral. After the funeral. Months later.

When my great-grandmother died at 103, my husband and I stopped at a Fannie Mae store in Chicago and bought boxes of chocolates. At the reception, we handed out a chocolate to each person. Almost everyone — her friends, her children, the lady who shared a pew with her at her Catholic church — smiled knowingly. To know Gram was to know her love for Fannie Mae.

Food is love. Food is memory. Food brings people together. Food helps.

5. Music helps.

Music opens up doors of memory and emotion. Whether it’s Grandpa’s favorite hymn or junior’s love of “Star Wars,” music gives people permission to let tears out.

I’ve been in funerals with full choral anthems, Dixieland jazz, Appalachian hymns, a capella spirituals, and yes, the “Star Wars” anthem. There’s no right or wrong way to use music at a funeral, but use it if you can.

4. Advanced planning can help.

I don’t mean having a sit-down with a funeral home to choose your own casket. I mean jotting down a few things that’d be meaningful to you.

Do you have favorite Scripture passages, a beloved poem or people you want to acknowledge? Write it down. Even a few notes will be a help to your family.

If someone close to you is near their life’s end, encourage a conversation about these things. One of the hardest parts of planning a service is when loved ones feel paralyzed because they want to honor the person who died but aren’t sure what he or she would have wanted.

3. Having something physical to do can help.

My husband attended the funeral of someone who died in a freak accident much too young. After the graveside committal, everyone stood waitingPrayers had been said, songs sung, Scripture read, but no one was ready to leave. It felt so final.

Then someone grabbed a handful of dirt and sprinkled it onto her coffin. One by one, everyone in the crowd picked up some dirt. Her college friends started shoveling it with their arms. The air was thick with grief, but burying this dear young girl together was such a powerful experience that my husband still talks about it nearly ten years later.

If you can do something physical — place a flower on an urn, shovel dirt together, walk the long road to the cemetery — it can help.

2. Writing can help.

Get those memories down. Things fade faster than you might expect.

1. Presence is a present.

If you’re ever on the fence about attending a service, remember that your presence is a present. You just being there is a support.

If you’re the one in deep throes of grief, look around and take in the faces of those came to honor the one who died and to support you.

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My First Mother’s Day Without My Mother

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Grief. If you Google it, you’ll get pages of results of blogs, memes, poems and articles. There are many references about feeling like you’re drowning, and, every now and then, you get to come up for air.

Here’s the thing: People expect you to just move on after a couple weeks like everything’s fine. Or they avoid you.

I think this is a conversation that needs to be had. The process. The physical pain, the shock (even when it’s expected), the overwhelming sadness and depression and the guilt.

My mother died on January 30. I literally feel like I have a 5-pound weight sitting on my windpipe. (Maybe that’s where the drowning comparison comes from.)

She had a rare cancer. She beat it, and it reoccurred just months later. I knew it wasn’t good. It was very aggressive, and I was told her chances of recovery would be zero. But we had time. The doctor said we had time. She died in the night of what we assume was a blood clot. Alone. The guilt I feel is overwhelming. Now Mother’s Day is coming up.

When I’m asked how I am, I try not to lie. I’m not doing well. It makes people uncomfortable, I know. I don’t really care. I’m not doing well, and that should be OK. Why is there a time limit?

I’m blessed to be able to stay at home during this process. Sometimes I’m able to laugh, smile, get dressed and shower. Sometimes I stay in bed all day and cry. Most days look like that for me. I miss her. I miss her smell and her voice. I miss knowing I can call her and ask her advice.

Then I realize I will never have those things back. Ever. If something good happens, it almost makes it worse because I can’t call her. So I stay at home as much as possible and lie in the pit of misery that is my life right now.

This will be my first Mother’s Day without my mother. I don’t know what the day will look like, but I certainly won’t be on social media. I don’t think I can see all the beautiful pictures of mothers and daughters.

I’m jealous. I said it. I’m jealous of all of you who still have your moms. Death isn’t fair or kind. Please don’t say, “Everything happens for a reason.” There’s no reason my mom got cancer. She never smoked, she was healthy and yet she’s dead. Dead. Not passed away.

For all of you who are motherless this Mother’s Day, I’m sorry. So very sorry. We’ll get through it. We don’t really have a choice. It’s OK not to be OK. From what I understand, it’s a process, and it never gets better. You just get used to it. Please don’t let anyone push you into being OK. Feel what you feel. Cry when you need to. I am.

Love you, Momma. Forever.

Riley Lee, right, with her mother

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Picking Up the Pieces After Losing My Daughter to a Life-Limiting Illness

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I have had a lot of family and friends come by, call, email, text, etc. to make sure I am OK. I don’t really know how to answer them. I am alive, and I am doing my best to move forward. But no, I am not OK. I don’t know that I ever will be.

Casey hated when people would cry or get angry near her, so I know she would be furious with me if I spent all day, every day just crying and being angry at the world for taking my baby from me. I also want to make her proud of me. I want to continue the work she inspired within the special needs community. I want to keep her name and her memory alive by helping as many families like ours as I can. So for these reasons, I get up every morning (if I slept that night); I get dressed, and I do my best to move forward.

I have spent the past 10 years with one single motivating factor: Everything I did, I did for her. I know, I know, queue the Bryan Adams song. It’s true though. If I was home, I was managing her airway, protecting her skin, giving medications and food by her feeding tube, changing diapers, and working on her schedule. When I was out, I was usually picking up something she needed or working on setting up something special for her and her friends. There were a few occasions I would do something for myself, but even then, it was still “kind of” for her. I had to keep my own health (physical and mental) in check in order to be able to care for her. Luckily we had an amazing team of nurses to help with all of this as well. Even with the nurses here though, the last six to 12 months often required the nurses and myself to tend to Casey’s needs.

For 10 years all I have known is caring for Casey. Being there, caring for her is all I wanted. I knew from the moment she was born that every moment with her was a gift. She was never expected to go home at all. Making it to almost 10 years is nothing short of a miracle.

I have talked about and am slowly working on setting up a nonprofit in Casey’s name to carry on all of the projects she inspired over the years. A lot of people worry what I will do now. Well, part of what I do now is create a legacy for my baby girl that will make her proud.

Losing a child is not black and white. You don’t grieve for a few days and then snap out of it. There are little sounds I hear, things I see  — sometimes I have no idea what sets off a sadness that overcomes me. My heart is broken, and as I held her during her last hours on Earth, I could feel her spirit lifting away. As she lifted away, she took a very large part of me with her. That part will never be filled. I can function without it, and I can find happiness without it. I can live with a part of my soul missing. It will forever hurt, and I will always hope to see her when I open my eyes, enter a room, or drift off to sleep. I try to focus on our good memories and her sparkle. She really did light up every room she entered.

It’s going to take some time to find “me” again, but I will get there. After doing the same thing every day for 10 years, it’s hard to just change. I still head toward the medicine cabinet at 5 p.m. to draw up her medication. When I wake in the middle of the night, I still listen for the sound of her breathing through the monitors. I still expect to hear a knock at the door when the nurses would typically arrive. All of these things will take time.

I feel kind of like a reflection in a broken mirror. You can kind of tell it’s me, but there are parts missing. As time goes by, some of the pieces will be able to be repaired, but not all of them.

Many people want to know when we are going on a vacation. I understand this question. We haven’t really done anything like that in the past 10 years. However, going on a vacation is not on our list of things to do right away. We are taking baby steps. We are getting out and around town now, and maybe later this summer we will do a day trip or two. We’ll work our way up to a vacation.

The first week after Casey passed, we could not eat or sleep at all. After Casey’s service we were able to bring her ashes home, which has helped me so much. Our house was not right without her here, but after bringing her home I was able to sleep and eat a little more. Some of Casey’s friends who have come by the house go directly to her urn and talk to her. I don’t know how they know to do this, but seeing this fills me with so much love.

We appreciate all of the meals, cards and everyone checking in on us. We think we are doing pretty good on most days, and we just ask that you bear with us. Say her name. Share memories you have of her. Send us pictures you have of her. Let us know if you saw something that made you think of her. We miss her every second of every day. It’s OK to let us be sad. We have to work through it, and some days (or moments) are just going to be hard for us. We don’t have the answers any more than you do. Everyone grieves in their own ways and in their own time.

Luckily, in a way, we had 10 years prepare. And during our last two hours snuggled together as a family, we were able to say everything that needed to be said.

Casey's memorial service: In loving memory of Casey Barnes, April 23 2006-March 10, 2016

Follow this journey on Casey Barnes.

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The Words That Don't Help Me as a Grieving Mother

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On August 13, 2015, I went into labor with my second child. At 4:08 a.m. on August 14, 2015, my world was turned upside-down because as quickly as our son, Trevor, came into the world, he was fighting to stay there. He stopped breathing, and before I knew it, an entire squad of medical personnel descended into my room. I couldn’t breathe. Trevor was whisked away to the NICU before I could figure out what was happening. At the same time, I began to hemorrhage and my mother was not only worried about losing a grandchild, she was worried she might lose me, too.

Those first few hours were agony, not knowing what was going on and not being able to see and hold my child. Finally, a couple of hours later, I was able to see him and all of the cords and tubes that were keeping him alive. Hours turned into a couple of days and still no answers.

We did know that Trevor wasn’t able to move, breathe on his own or swallow and therefore had to be tube fed. I walked around desperately searching for any hope and any treatment options.

Trevor was transferred to another hospital that specialized in children, and there were still no definitive answers. We watched our son’s body shake when we held him because he was in pain and would have been crying if it weren’t for the tubes in this throat. His numbers indicated he was in pain when we would touch him. It was my own personal hell.

Then we heard news that Trevor wouldn’t make it. Our main goal for him was to be free of pain, and that meant we had to let our beautiful baby go. For the first time, I was able to hold him without fear of unplugging cords. I was able to rock him, hold him and sing to him. My husband and I held Trevor until his heart stopped beating and the last breath left his lungs. At that moment, my world turned upside-down and everything felt foreign.

A couple of months after Trevor passed, we found out he had a rare disorder called nemaline myopathy. Nemaline myopathy is a genetic neuromuscular disorder, which affects children and adults’ abilities to walk, talk, eat and breathe.

Since losing Trevor, I’ve heard comments I think no one should ever say to a grieving parent. I’ll let everyone in on a little secret I’ve come to believe: You can’t make a parent who just lost their child feel better with words. There is no silver lining to losing your child. There is no “There is a reason for everything” or “This will make you a strong person.” I didn’t think I was strong and nor did I care if I was strong if I could trade that for more time with my son. Despite what people think, there isn’t always a reason for everything. Sometimes things just happen.

I have heard from many that they can’t imagine losing a child. It’s a phrase that makes me thankful. I’m thankful you never have to know that deep agony and pain. You don’t want to be sitting next to me feeling what I’m feeling. The pain of losing a child is indescribable.

Grief is a never-ending process. I’ll never be able to move through my grief because grief moves me. I can and am learning how to manage my grief. The learning process is one that has held many hurdles, and I’m constantly falling, but I’m also standing back up and bracing for the next wave.

I can see that grief is intertwined with love because the grief is a result of the love I have for Trevor and is never-ending. Therefore, I will grieve for him until I leave this world and reunite with him.

Sarah Smith with her son, Trevor
Sarah and her son, Trevor.
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Why I Find Grieving Parents Are the Same, Yet Different

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I find parents who have lost their children use many of the same words, metaphors and analogies to describe their experiences. Externally, we seem to be so different; our situations, ages and life experiences vary enormously. The circumstances of our children’s deaths are wide-ranging. I won’t go into the litany of causes — that’s not important.

What is important is that all of us — no matter who we are, where we are, how old we are and what the events surrounding the passing of our precious ones may be — can have the same reaction. Feel the same emotions. Walk around in the same fog, stand on the edge of the same desolate sea, have the same waves crash over us, the same hollowed-out feeling; we grope through the same darkness.

We alternate between agonizing heartache and total numbness and every shade in between. We seek to find meaning in a seemingly meaningless universe, one that has taken our lives and turned them inside out in an instant. We are all ripped apart, devastated, crushed, dreams destroyed, futures stolen, hearts shattered into a thousand shards, nearly unable to go on. Somehow we do. Despite our dissimilarities, at the core our grief can be the same.

And yet, we differ from one another in the myriad ways that humans do. The key difference here is that I have lost my son, Jake, but he wasn’t your son. In the same way, your child wasn’t my Jake. Each of our children, no matter how old or how much time we had to spend with them, is an irreplaceable gift. We each had a special and unique bond with them. In this way, our grief is completely different for every one of us.

Jake and I had a lifetime of experiences together. Our conversational shorthand spoke volumes with few words. We shared many interests and could talk about the most diverse subjects, moving from one to another without a hitch: photography, science, technology, (although he was miles ahead of me there), books, art, machines, cooking, cars, food. The list goes on.

I always looked at him through the lens of his entire life. I could always see all the Jakes, from the moment he was born, through his toddlerhood, childhood, tweens, teens and on into young adulthood. All 24 years simultaneously. The millions of images blended into the picture of the person who stood beside me. No one could ever replace that; it would take a lifetime to re-create. Really, it’s impossible because each one of us is unique. There will never be another Jake. Just as there will never be another of your beautiful children to replace the ones you have lost.

We express our grief in different ways. Some of us write, some paint, play music, knit, find counseling, go to meetings, grief classes. Some of us withdraw, some strive to reconnect. Some seek out companionship, others shun it. We all cry. There is no right or wrong way to do this. It’s intensely personal and what feels right for one can be abhorrent for another.

This is another place where, in spite of our fundamental sameness, we differ from one another. We each have to find our own way through this maze and discover what works for each of us. What is similar is that our lives will never be the same. There is no going back to the “before,” only the forging of the new way to be in the “after.” The tools to do that are available to all, but each of us wields them in diverse ways.

I’m still learning how to use those tools. I have a long way to go. Knowing you’re all on this voyage with me is scant comfort, but comfort nonetheless. We can share our knowledge of what works and what doesn’t as we learn together how to craft a new and different life.

Like castaways, together we have to build a life raft to get us back to civilization. It’s a daunting task. We have so few things to build with; there are so many missing pieces. But somehow, we have to learn to sail the “Ocean of Heartbreak” or remain stranded on the bleak and lonely shore.

Follow this journey on The Infinite Fountain.

Lead photo source: Thinkstock Images

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