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I have not lost a child, but I know grief.

I know what it’s like to have a community come together to offer support and comfort and to celebrate a life taken too soon. I know that this comfort can be the thing that holds you up and keeps you from falling apart when you’re hurting.

We could use a little more community these days. We could make an effort to judge less and love more. We are more connected than ever. Some use those connections to support and build others up. Yet others use the access to cast about blame and condemnation on broken hearts.

If you fall into the category of blame and shame, if you find yourself reacting to a tragedy with judgement instead of compassion, please listen to my story…

I have not lost a child, but I know grief.

My brother’s 16th birthday was followed by a cancer diagnosis. A few months after his 18th birthday he lost his battle with cancer.

I know what it’s like to watch your parents say goodbye to their son for the very last time. To hear pain in their voice so palpable you could reach out and touch it. I know what it’s like to feel sadness turn into agony and take over your whole body and make you feel weak and broken down. I know what it’s like to look through eyes clouded with tears and see your parents letting him go. Watching as they have a part of them ripped away forever. I know what it’s like to feel unspeakable pain in your heart and know that it doesn’t even come close to the pain they are feeling.

I know what the aftermath of losing a child looks like. I know the shock that descends upon you. Making your movements slow and heavy, shutting down a part of your heart. And I know that that numbness is only a thin veil. That at any moment a fissure could slowly creep across that veil until there’s an opening big enough for the pain to come rushing out of you. And I know that you hold tightly to that numbness as long as you can, because you know it’s only temporary. You know you could crack at any moment. At any place.

I know the thoughts that go through a parent’s mind after losing their child. The questions they ask themselves. The what ifs, the hows, the blame they will heap upon themselves every day. Self immolation of blame and shame. I know the rationalizing, the thoughts of wanting to welcome their own death. Of not having to walk one more minute on this earth without their child. The warped reasoning that tells them their other family members will be fine without them. They’ll understand. They still have each other.

I know what it’s like to call your mother from your desk at work, every day at the same time. To make sure she made it through another torturous night of nightmares and flashbacks and anguish. To force her to meet you for lunch so that you could try to distract her from the suffocating pain she feels every second of the day.

I know what it’s like when she doesn’t answer the phone and you panic. And you call again. And again. And you call your sister and your Stepfather to see if they have heard from her. And maybe you leave work to go to her house and knock on the door and the relief that you feel when she answers the door in her bathrobe. And you want to curl up against her soft robe like you did when you were little because you’re scared too. And you’re hurting too. And you know that this time your parents need you more than you need them.

I know of the incredible amount of effort it takes to get out of bed every morning after you lost a child. The struggle to find the will to keep going. The struggle that never really goes away. Because even though years have passed and you’ve found ways to stay busy and even ways to find joy, there are days where you are right back where you were that first year. And you find yourself not wanting to get out of bed. You start having the nightmares and the flashbacks again. You start blaming yourself, again. You replay every doctor’s visit and every decision made and wonder what if… I know that this carousel of grief and nightmares and pain will be spinning for the rest of my parent’s lives. That it will slowly ebb up and down for years to come.

And that some days the pain is just as fresh as it was the day we found out it was cancer…

The day they told us it was Stage Four…

The day they told us their were no other treatment options…

The day we had to call Hospice…

The day we had to say goodbye even though we couldn’t imagine ever saying goodbye…

This is just what I know of losing a child, what my parents have experienced. There are many reasons they are still here 16 years later. Still functioning and thriving. They have me and my sister and six grandchildren. They fought through so much of their pain for us.

But it’s also because of my brother. He was very clear about his wishes, in the days and months before his death. There were quiet moments, in the middle of the night at the hospital, when he would tell me and my sister to take care of my parents. To make sure they would be ok. I would nod, a huge lump in my throat because I didn’t want to believe he’d ever be gone.

There was the time that he told my mom, You and Dad have to stay together. You have to take care of each other. He knew. At the tender age of 18, he knew what was coming and how hard life would be for my parents after he was gone. He knew that they needed each other and that so many parents don’t stay together after losing a child.

He knew that it would take all of us to get through it.

He knew that none of us would get through it alone.

At the age of 18, with tumors eating into his bones, causing unspeakable pain, he was thinking of us and looking out for us. He was a beautiful soul who loved even as he was staring death in the face. His words and wishes are the thing that kept my parents going. He’s the reason they are thriving today.

If we could all find a little of that love, a little of that giving and selflessness… if we could all do just a tiny bit of what my brother did and look out for others. If we could think about what they are going through… maybe we could help instead of hurt. If we could all follow his reasoning… that none of us can get through it alone. That we all need each other… maybe we will build the community I think we all really want.

If we could all look past our own pain and fears for just a moment, maybe we would help each other instead of throwing hurt on top of scorching pain.

I promise that you will feel better if you reach out in love to those are hurting. That your heart will be nourished every time you turn to someone with compassion instead of judgement. I promise you that these parents, and every parent who’s lost a child, is beating themselves up in ways you can’t even imagine. What they need is someone to step in and stop the beating. Not throw more punches.

I promise that feeling love and compassion towards others feels a lot better than feeling anger and judgement. You will be happier for it. You will be doing good instead of spreading hate. Let’s try love… just try it on for a little while and see how it feels.

One day, you may find yourself in pain and needing a loving hand. And you will be glad that you extended yours when someone else desperately needed it.

I promise you that love wins, if you let it. Let’s build a community, not burn down the village.

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It was my wedding day.

I found myself standing outside the doors to the chapel. My heart was racing. Pressure began building inside and I felt my eyes fill up with tears.

I can’t do this.

Before I could turn and run, the doors were flung open. I was caught off guard as 80 expectant faces turned to look at me. I scanned the crowd….  I saw my family and friends…. I saw my Dad and Stepfather waiting in front of the alter to give me away.

But I was going to have to walk down the aisle alone.

And that’s not how it was supposed to be.

I don’t know how long I paused there. I felt like I couldn’t move.

Then my eyes found Joe. And right next to him a single candle burning on a tall candelabra. Gulp. I looked back at Joe and knew that if I could make it to him that I would be o.k.

I took a tentative step. I felt as if my knees were going to buckle. I took a deep breath and willed myself to move. Somehow I began walking. It was surreal. I felt as if I was floating down the aisle….  Something was propelling me forward.  I felt a sense of calm. A sense of warmth and serenity that I hadn’t felt in 18 months.

***

Eighteen months earlier, my 16 year old brother had been diagnosed with a rare pediatric bone cancer.

The diagnosis was grim. The prognosis was not good.

He was quick to rally. He was going to be fine. He was going to live his life. He was still planning a future. He packed a lot of living in a short time.

Ten days before my wedding he lost his fight.

That was the day my world forever changed. Nothing would ever be the same. The damage was irreparable. I felt gutted, depleted and seething with heartache.

September 15, 1999 was the worst day of my life.

Fifteen years later I still look back and I don’t know how my family and I made it through a funeral and a wedding. But we did. We somehow walked through it together, feeling our way through a fog of pain and grief.

There would be no postponing of the wedding, as I’d suggested. I couldn’t imagine waking up in a world without my brother, let alone throwing a wedding. Every single member of my family told me in no uncertain terms that my brother would never want me to put it off. He always said he “didn’t have time for cancer”, he didn’t let it stop him from doing the things he wanted to do.

And he would be highly pissed if I let cancer stop my wedding.

So, we pulled it together and summoned our strength. Even though we were still in a state of shock, we had a wedding. There were tributes to my brother throughout the wedding. The single candle stood where he was supposed to stand as a groomsman. There was a beautiful poem in his memory read during the ceremony. His favorite song was played at the reception. And we danced. And we drank. And we had fun.

Inexplicably, we had fun.

Fifteen years have passed since that day.

Fifteen years later and I’m still trying to figure out how to move through life without him.

Fifteen years later and I’m still learning how all of this works… the after part.

And even though I’m sometimes exhausted by all that I’ve learned from that day, I know it’s important to pull my head out of the sand. I know I need to pay attention to all that grief has taught me.

I would gladly trade the things I’ve learned to have my brother back.

But I learned a long time ago that bargaining doesn’t work.

So I choose to appreciate the lessons I learned.

I learned to cut people some slack.

You really don’t know what people are going through. You don’t know what they have endured. You don’t know what battles they may be fighting.

There were the times that I would find myself driving 15mph in the left lane. I would be lost somewhere between grief and exhaustion after a long night at the hospital with my brother. I would arrive home with no idea how I got there.

There were times when I’d look up distractedly at the grocery store to realize I’d been standing in the middle of the aisle lost in thought.

I used to be that person that would honk impatiently and cast a dirty look as I zoomed past a slow driver.

Not anymore.

I learned what it was like to really have a bad day. To be so lost in a world turned on it’s head that you could be completely unaware of your surroundings.

I learned that we all have bad days and some of us have really bad days.

Some of us are just trying to make it to tomorrow.

Now I see people differently. I don’t see people who are trying to get in my way. I see someone who may have heavy things weighing on their mind. I’m sure many people granted me that grace, and I’m grateful. I was so fragile and raw that to be confronted by an impatient driver or shopper would have been too much.

Compassion and grace isn’t giving people a pass when you know they’re suffering.

Real compassion is giving people the benefit of the doubt. Granting them access. Assisting them when you don’t know them. Being patient and kind even when you don’t know what they are going through.

If you have to know the behind the scenes? If you have to know their story in order to be kind?

If your kindness is based on an assessment of their pain… if it is conditional…

then it’s not truly kindness.

It’s judgement.

I didn’t get this before. I wasn’t cruel. I wasn’t mean spirited. But I was impatient. I was easily irritated. That was before I realized the depths that people can be trapped in and look completely normal to the rest of the world.

I learned that comfort  sometimes comes from unexpected places.

There are some people who had such an impact on me, who helped me through difficult times. They probably will never know the significance of their actions.

The soft-spoken coworker who offered me a hug as I was leaving to meet my family at the hospital. We were meeting with doctors to get news of test results. He knew I was nervous. When my shy, reserved friend wrapped me in a big bear hug I was overcome. I knew this small gesture was not easy for him to give. His effort to offer me solace moved me. It reminded me that even though my coworkers didn’t know my brother, there was a whole team of people rooting for him.

There was my brash, loud, jokester boss who let me take off as much time as I needed to be with my brother at the hospital.

There was my friend from work who calmly assured me that I would feel joy again after I tearfully confided my fear and pain to her.

Then there’s my husband’s brother and my sister in law who drove 12 hours to attend my brother’s memorial service.

My sister in law was the person I leaned on during that service. I found myself opening up to her and this was only the second time she andI had met. She helped me get through an emotional night. She seemed genuinely touched by the stories she heard from my brother’s friends. She said that he sounded like an amazing person and she felt like she kind of knew him after hearing about his antics.

I almost collapsed with gratitude. Her words gave me hope that my brother wouldn’t be forgotten, that his spirit and his humor could be translated to people who’d never met him.

I learned that an act of kindness, no matter how small, is never wrong. Sometimes it’s the thing that can help someone put one foot in front of the other. Sometimes it can make all the difference in the world.

I’ve learned that you can, even 15 years later, be blindsided by the cruel reality of it all.

You can be sitting at your kid’s swim practice just trying to write in your notebook when a memory you’re writing about simply knocks the wind out of you and next thing you know you’re wiping away tears hoping no one notices.

You can be eating dinner at a restaurant and the waiter looks just like your brother. You can’t stop looking at him. You feel the loss and pain take over and overwhelm you. You are again surprised at the cruel force of grief’s ability to blindside you. And you almost want to stalk the waiter just so you can pretend for a minute that your brother’s still here.

You can watch your kids doing something especially mischevious and your thoughts unwillingly flicker to images of your brother. Memories of the antics of a little boy long ago. And then, imagining what could have been. Him egging them on, encouraging their exasperating behavior.

And you can almost hear him laughing, enjoying every second of finding a way to torture you as an adult as he did as a little kid.

And your heart hurts because you know he would have had so much fun with your kids and they would have loved their uncle so much.

You could bottle yourself up and try to insulate yourself from it, but it’s not going away so you might as well let it happen.

You’ll feel it, you’ll hurt, but you’ll be ok. You will be ok. 

And I’ve learned that I still feel my brother’s presence.

I see him in each of my children, in their personalities…  in their sense of humor, which is what my brother was known for.

I feel him sometimes. I feel the hair on the back of my neck stand up. I feel a warmth come over me. A warmth hard to describe because it’s unlike any sensation I’ve felt before.

I feel him when my family is together and my sister and my parents are laughing and we’re giving each other a hard time.

I feel him kicking me in the ass when I’m about to chicken out on doing something that scares me.  I can almost hear what he would say in those situations.

Don’t give up. You’re better than that.

I’ve learned to recognize these moments, when I feel him with me. They are bittersweet. They are welcome. And they tug at my heart because they will never be enough.

My brother was supposed to walk me down the aisle.

When we knew, in those last weeks, that it would not be possible for him to do that, we contemplated our other options.  We considered having both my dad and stepfather walk me down the aisle… or having my sister’s husband walk me down the aisle.

But in the end, I decided that my brother was who I had chosen to walk me down the aisle.

There was no understudy.

There would be no last minute stand in.

I couldn’t imagine replacing him in that role.

I didn’t know how I was going to manage making that walk without him. I didn’t have much time to dwell on it.

And what I’ve learned is that there didn’t need to be a replacement.

My brother showed up.

He kicked me in the ass a little and told me not to be scared. He reminded me that I didn’t have time to let my pain stand in the way of my wedding, my happiness.

My brother showed up…

he  was there with me on one of the best days of my life.

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“And I know it aches and your heart it breaks and you can only take so much….  Walk on.” -U2, Walk On

It was my wedding day.

We had spent the past year and a half planning every little detail, the string quartet, the candles, the sunset. Yes, even the sunset.

One year before our wedding date I stood outside and watched the sky. I studied the sun as it gracefully slid into a warm golden light. Letting it soak in, I marveled at this moment. The warmth and beauty of the world awash in a sublime glow, this gift for us to witness most evenings. I’ve always felt moved, spiritually connected to the sunset. It’s a daily reminder that anything is possible.  As the sun’s dance came to an end, it washed the sky in pink and purple, one last flourish to remind us of the promise of the sun rising for a new day. This was the moment I wanted our wedding to take place, the beginning of our new life together.

A year later, on the actual day, it was beautiful, the sun was putting on it’s luminous show right on schedule. I stood outside of the chapel and watched as my sisters and best friends filed inside. The strings started playing Canon in D and it was time for me to take my last walk as an unmarried woman. My heart started racing and I could feel the pressure building inside of me, the surge of tears threatening to spill out of my eyes. I looked up at the sun, willing it to work it’s magic on me. Let me feel the hope and promise, the assurance that  it would greet me the next morning and everything would be all right.

Nothing.

I felt completely alone, the sunset wasn’t giving me strength, my family and friends had all gone inside. The only person there was the sweet old lady who worked for the chapel and was there to make sure all went as planned. She looked at me nervously, her eyes darting from me to the door of the church.

And all I could think was, “I can’t do this.”

Before I had the chance to say anything, the doors were flung open. I was caught off guard as 80 expectant faces turned to watch me. I scanned the crowd….  I saw my family and friends…. I saw my Dad and Stepfather waiting in front of the alter to give me away, but I was going to have to walk down the aisle alone.

And that’s not how it was supposed to be.

I don’t know how long I paused there. It really was surreal. Like time stopped.

Then my eyes found Joe. And right next to him a single candle burning on a tall candelabra. Gulp. I looked back at Joe and knew that if I could make it to him that I would be o.k.

I felt myself move forward, effortlessly gliding….  Something was propelling me forward.  I felt a sense of calm, warmth and serenity that I hadn’t felt in 18 months.

Eighteen months earlier, my 16 year old brother was diagnosed with a rare pediatric bone cancer.

Given a grim diagnosis, he remained steadfast. He was going to be fine, he was going to live his life. He was still planning a future. He packed a lot of living in a short time.

Ten days before my wedding he lost his fight.

This was the day the world forever changed for the six of us that were there with him. Nothing would ever be the same, there was something deep inside  each of us that had been irreparably changed. I felt gutted, depleted and seething with heartache.

September 15, 1999 was the worst day of my life.

Fourteen years later I still look back and I don’t know how any of us made it through a funeral and a wedding. But we did. We somehow walked through it together, feeling our way through a fog of pain and grief. There would be no postponing of the wedding, as I’d suggested. I couldn’t imagine waking up in a world without my brother, let alone throwing a wedding. Every single member of my family told me in no uncertain terms that my brother would never want me to put it off. He always said he “didn’t have time for cancer”, he didn’t let it stop him from doing the things he wanted to do. And he would be highly pissed if I let cancer stop my wedding.

So, we pulled it together, summoned our strength and even though we were surely still in a state of shock, we had a wedding. There were tributes to my brother throughout the wedding. The single candle stood where he was supposed to stand as a groomsman. There was a beautiful poem in his memory read during the ceremony, and his favorite song was played at the reception. And we danced and we drank and we had fun.

Inexplicably, we actually had fun.

Fourteen years have passed since that day.

Fourteen years later and I’m still trying to figure out how to move through life without him.

Fourteen years later and I’m still learning how all this works, the after part.

And even though I’m sometimes exhausted by all this learning, I know it’s important to pull my head out of the sand every once in a while and pay attention.  I would gladly trade the things I’ve learned to have my brother back…

but I learned a long time ago that bargaining doesn’t work.

Perhaps one of the most important things I learned came from a friend I worked with. I confessed to her that I didn’t think that I would ever feel joy again. I knew I would feel some level of happiness, but true, full, unadulterated joy? I couldn’t see that ever happening. I really thought the part of me capable of feeling with abandon had died. She adamantly refused to agree. She said that I would feel joy again. She was so sure. It actually kind of annoyed me at the time. But her insistence also gave me hope.

And she was right. When I had my son 15 months later, I felt joy, a pure unfiltered happiness. And I’ve felt it many times since then. With my daughters, with my husband, with my friends and family. My son’s birth filled a hollowness that had been residing inside my soul. I have thought of her many times since then even though we aren’t close any more. She gave me something no one else had been able to give me at one of my darkest moments. As an outsider she was able to guarantee me that I would feel again. See, she had a daughter already and knew that when I had a child I would have no choice but to feel joy, that my love for my baby would override the pain. The birth of my son didn’t take away the pain of losing my brother, but it allowed me to open my heart up again to hope.

It gave me permission to feel happy.

I learned to cut people some slack.

You really don’t know what people are going through, what they have endured or are battling. I had many nights and early mornings of driving home from the hospital after staying with my brother where I truly don’t know how I made it home. There were times where I caught myself driving about 15 mph on a busy road. Before my brother’s illness I would have been irate over a slow driver holding me up. I still sometimes get a little annoyed but I always remind myself.

We all have bad days and some of us have really bad days and are just trying to make it to tomorrow, so I try to keep my irritation in check. I’m sure many people granted me that grace, and I’m grateful. I was so fragile and raw that to be confronted by an angry driver or shopper at the grocery store would have been too much.

Compassion and grace isn’t giving people a pass when you know they’re suffering.

Real compassion is giving people the benefit of the doubt, granting them access, assisting them when you don’t know them, when you don’t know what they are going through.  If you have to know the behind the scenes, well then you’re kind of sitting in judgement, right?  I wasn’t an asshole before, but I don’t think I really recognized the depths that people can be trapped in and look completely normal to the rest of the world.

I learned that comfort  sometimes comes from unexpected places.

There are some people who had such an impact on me, who helped me through difficult times and they probably will never know the significance of their actions. There was a coworker who, as I was leaving the office to go to the hospital, stopped me to give me a big bear hug. He knew I was worried about the news we were getting from my brother’s test results, and while I had talked about it with my shy, reserved friend I was completely taken aback with his show of affection. It was a small gesture that I knew wasn’t easy for him to offer. His effort to offer me solace moved me and reminded me that even though many of them didn’t know my brother, there was a whole team of people rooting for him.

Then there’s my husband’s brother and his wife who drove 12 hours to be here for my brother’s memorial service.

My sister in law, who I barely knew was the person I leaned on during that service. I found myself opening up to her and this was only the second time she and I had met. She helped me get through an emotional night and she seemed genuinely touched by the stories she hear from my brother’s friends. She said that he sounded like an amazing person and she felt like she kind of knew him after hearing about his antics.

I almost collapsed with gratitude when she said those words to me.  It let me know that my brother wouldn’t be forgotten, that his spirit and his humor could be translated to people who’d never met him.

I’ve learned that you can, even 14 years later, be blindsided by the cruel reality of it all.

You can be sitting at your kid’s swim practice just trying to write in your notebook when a memory you’re writing about simply knocks the wind out of you and next thing you know you’re wiping away tears hoping no one notices.

You can be eating dinner at a restaurant and the waiter looks just like him and you almost want to stalk him, just so you can pretend for a minute that he’s still here.

You can watch your kids doing something especially mischievious and your thoughts unwillingly flicker to images of your brother egging them on, encouraging their exasperating behaviour.

And you can almost hear him laughing, enjoying every second of finding a way to torture you as an adult as he did as a little kid.

And your heart hurts because you know he would have had so much fun with your kids and they would have loved their uncle so much.

You could bottle yourself up and try to insulate yourself from it, but it’s not going away so you might as well let it happen.

You’ll feel it, you’ll hurt, but you’ll be ok.

And I’ve learned that I still feel my brother’s presence.

I see him in each of my children, in their personalities…  in their sense of humor, which is what my brother was known for.

I feel him when my family is together and my sister and my parents are laughing and we’re giving each other a hard time.

I feel him kicking me in the ass when I’m about to chicken out on doing something that scares me.  I can almost hear what he would say in those situations.

I’ve learned to recognize these moments, when I feel him with me.

They are bittersweet.

They are welcome.

And they tug at my heart because they will never be enough.

My brother was supposed to walk me down the aisle.

When we knew, in those last weeks, that it would not be possible for him to do that, we contemplated our other options.  We considered having both my dad and stepfather walk me down the aisle, having my sister’s husband walk me down the aisle.

But in the end, I decided that my brother was who I had chosen to walk me down the aisle.

There was no understudy, there would be no last minute stand in.  I couldn’t imagine replacing him in that role.

I didn’t know how I was going to manage making that walk without him, I didn’t have much time to dwell on it.  And what I’ve learned is that there didn’t need to be a replacement.

My brother showed up.

He kicked me in the ass a little and told me not to be scared and that I didn’t have time to let my pain stand in the way of my wedding, my happiness.

My brother showed up…

he  was there with me on one of the best days of my life.

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