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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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I don’t know how long I sat there. My hands were clasped in sweaty-palmed desperation. My eyes were shut and my jaw clenched. The office bustled around me and phones rang. I ignored the morning commotion of the sales office and concentrated. I was praying. Bargaining, really. I was cutting deals left and right with God.

I was praying so hard I was sweating. I was praying with my whole body, physically willing God to listen to me. I laid everything I had in me on the table.

I was praying for my brother to have cancer. To have a specific type of cancer. We already knew that he was sick. We already knew that is was malignant and that it had spread. We had been told that it was cancer. We just didn’t know what type. We were given two probabilities. One awful, the other devastating. I was praying for my brother to have the awful kind of cancer. The one that had a slightly better chance of survival.

And even though every muscle in my body was tense with fear, I had to resist the urge to laugh. The absurdity of my feverish praying. Please God, please. Let my brother have Rhabdomyosarcoma. Please. We will fight it and we will make something good come out of it. Just please, if you can’t make this all go away, please let him have this kind of cancer. 

I don’t know how long I sat in my cubicle going round for round in the deal making. At some point, I unclenched my hands and loosened the lock in my jaw. It was time to leave for the hospital. I took a moment to assess. I decided I felt good. Optimistic. Strong. I was sure in that moment that we were not going to hear fantastic news, but it would be something we could deal with. I relied on this gut instinct to get me out of my chair and out the door.

I stood up and steadied my shaking legs. I had to pull myself together. I ignored the stilted air escaping from my lungs, and walked to my car.

Driving to the hospital I almost felt a sense of peace. It’s going to be ok. With deliberate casualness, I made my way through the sterile halls to my brother’s room. I must have been late, or the doctor was early, but when I opened the door the heaviness in the air spilled out the doorway and almost took my breath away. I took in the scene. Everyone was expressionless, listening to the doctor speak. I looked over at my brother, leaning against the propped up pillows in the bed. When I saw him I went weak with fear. His face said everything and nothing. Stone faced, eyes dark. He didn’t move. He stared at the wall and I felt terror at what he might be seeing. I felt any bit of hope drown in the heaviness of his empty gaze. I swallowed hard and turned my attention back to the doctor as he finished his sentence…

“We have seen some cases of survival.”

Some. Some cases of survival. What does that mean? But I knew what it meant. He had deliberately and carefully emphasized the word “some.” He was going to great pains to not give us false hope. I heard a blur of words as my head started spinning, “Stage four.” “Aggressive treatment.” My brother didn’t have the awful kind of Cancer. He had the devastating kind.

The nightmare we’d all been denying was playing out.

I wanted to scream and rip out the blinds and throw stuff. I wanted to run out of the room and escape. I wanted to run to the doctor and shake him and beg him to make it go away, to take back the words he’d just said. I wanted to run to my brother’s bed and hold him. To tell him that it would be ok. That it was all a mistake. Please don’t be scared. Please don’t give up. Please tell me you’ll fight this and win. I didn’t do any of that. I couldn’t move. He was my baby brother, the annoying kid that teased me and played pranks on me. The brother that I was supposed to protect and look out for. And I felt like I was letting him down, just standing there doing nothing. I didn’t know what to do, how to make this better. I was lost. Completely, fully lost.

We all were trying to process what we’d just heard. We were all doing our best to keep it together and be strong. My brother didn’t move. Didn’t acknowledge that he’d heard a thing. He just stared at the blank wall with a dullness I had never seen in his eyes. The look on his face broke me.

I think I may have let out a whimper. I ran out of the room, disgusted with myself even as I was doing it. Fleeing. Avoiding. I exploded into violent sobs on the floor.  My mind was racing while my body was revolting to the news. I tried to imagine what was going through his mind. Was he thinking about dying? Was he scared? Was he pissed? He just stared. I couldn’t stop seeing his face.

I worried that they could hear me, but I couldn’t control any of it. I was helpless. My body was reacting physically and bearing witness to my lack of control. I couldn’t control the manic sobs any more than I could control my brother’s cancer. It was the first time in my life I had no idea how to proceed. I had never not known what to do next. I had never not been able to find some sliver of hope. I had nothing. I was empty.

My brother began chemo and radiation immediately. Our lives became littered with new language. Words we’d had the luxury of never learning the meaning of before. We learned about the limited options of being diagnosed with a rare pediatric cancer. We learned about the lack of treatments tailored to my brother’s disease. We learned that Oncologists had to get creative when it came to treating diseases like Ewing’s Sarcoma. Our roles changed. My mom had to become a nurse to her 16 year old son. My sister and I took to researching and reading and digging to find any treatment or obscure therapy that could help. We all fought.

My brother fought. He fought with an easy grace. The stone face with the dark eyes I saw in the hospital that day- they were replaced with the laughter and mischief that always played on his features. He joked his way through treatments, he kept us all laughing and strong. He did stuff that teenage boys are supposed to do- hang out with their friends, cut up and get into trouble. I don’t have time for cancer he would say as he would head out the door and brush off my mom’s concerns about him over-doing it. He gave us all a little hope while he did the heavy lifting. We occasionally even felt joy that wasn’t laced with fear.

Eventually, the cancer had it’s way. Cancer took his life from us a few months after he turned 18. The shock of loosing him wasn’t dulled by knowing it would happen. I still have trouble comprehending the fact that he won’t be walking through the door.

I still feel my heart stop when I think about that look on his face that day in the hospital. It’s a memory I don’t visit often, but when I do I’m right back in that room. All of my fears live in that room still. When someone in my family gets sick repeatedly. When my four year old son had an unexplained illness that wouldn’t go away. When the doctors were running test after test. There are many times I’m right there, standing on the edge of panic and despair. The reality of a devastating diagnosis too real, too fresh in my mind.

I have had to learn to fight those fears. I have learned to walk out of that room calmly now. I think about my brother. His fighting attitude. Every time my thoughts and fears threaten to take me back to that place, I remember his words.

I don’t have time for cancer.

 

Today is Rare Disease Awareness Day. Please consider, when you decide where your charitable dollars are going, that some diseases don’t get much attention or research. That parents are spending hours raising money for treatments and clinical trials when they should be able to focus on spending time with their child. That approximately 50% of the people afflicted with rare diseases are children and of those roughly 30% will not survive. That 95% of rare diseases don’t have even one FDA approved drug treatment. 

 

 

 

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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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Sittin on top of the world, Sittin on top of the world.

Remember the times we used to play,

We sing and we’d dance all damn day…

-Lenny Kravitz, Sittin On Top Of the World

 

This is an anniversary I never wanted to celebrate. One I wish I could forget or ignore. Fifteen years ago my little brother died.

It’s still impossible to believe. Impossible to adjust. Impossible to ignore.

I don’t want to reflect on that day. Memories will creep back. They always do. But today I won’t let them. Today I will celebrate.

But all I do is sing the blues,

But have I forsaken you, by telling you what you must do…

And all I do is sing the blues,

But I would never lie, let things go by. Leave you in the road to die.

I will never ever say goodbye.

‘Eff you death. Because today I’m celebrating life. The beautiful laughter filled life my brother lived for 18 years.

Never gonna say goodbye,

Never gonna say goodbye…

Today I’m going to remember all the times we shared. All the times we laughed. Because there was always laughter. Even when there was pain there was always laughter. He was amazing like that.

I was eight years old when he was born. I was indifferent at first. I could have cared less about babies. But then I held him. I’d never seen anything so beautiful. I’d never felt love like that. The protectiveness, the awe. The wonder of this little baby who came into our lives and made our family complete.

We had your typical brother/sister relationship. He loved to bug me. But as he got older we became more friends than siblings. We bonded over music. He loved to hear about the concerts I went to. He introduced me to Eminem long before Eminem was on MTV. He loved hip hop. He made me cd’s, mix tapes. Bob Marley, Tupac, Biggie. And Lenny. Lenny Kravitz was our music. We both loved Lenny.

He made me tell him, over and over, the story of my first Lenny Kravitz concert. We were supposed to get hooked up with backstage passes. I was dying to meet Lenny. It didn’t happen. The guy gave them to someone else. So of course me and my friends stalked Lenny after the show. We waited by the tour bus with a small group of die hard fans. Finally, he walked out. A giant crocheted hat on his head, dreadlocks trailing beneath. The crowd was hushed. We had waited for over an hour and no one said a thing. Right as he passed in front of me I yelled out, “Lenny!” He lifted his chin in greeting, “What’s up, ya’ll.” Then everyone went nuts as he climbed on to his tour bus. My brother loved that story. Every time he hung on every word as if he didn’t know how it was going to end. A year before he died we got to see Lenny in concert. It was the only concert we ever got to see together.

Remember the times… that we used to share,

You got to remember the times… that we used to share, that we used to share…

Today I’ll remember that concert. I’ll remember the Halloween party we went to at my friend’s house- that he later told me was the best night of his life. Today I’ll remember how he always had us all laughing. His impersonations. Pecking at his plate like a chicken at Thanksgiving dinner. How he would put his finger up in front of me and my sister and say in the most serious tone, “Hush. No talk-y talk-y.” How it always made us stop whatever big sister lectures we were giving and had us cracking up.

Today I’ll think back on how he invented the selfie way before cell phones were in every hand. He would finish up every role of film on my mom’s camera with extreme close-ups, always making crazy faces. I would always flip through the photos, anticipating the pictures at the end of the roll. The ones that I knew would make me laugh. The ones that were always different. You never knew what was waiting for you at the end of the stack, but you knew it would be funny.

Today I’ll laugh when I think about how he would take baby Jesus out of the Nativity scene my mom set out every Christmas. Every day baby Jesus would be missing. My mom would feign annoyance, but she would erupt in laughter when she would see little baby Jesus perched somewhere unexpected. Sometimes she wouldn’t find him until cooking dinner that evening. Or doing laundry. Or going to the bathroom. It was The Elf on the Shelf way before anyone had even thought of that creepy guy. Baby Jesus was always lurking, hiding. Always some place different. Sometimes completely inappropriate. Always hilarious. A tradition that my niece continues in her uncle’s honor every Christmas.

Today I’ll remember how we got through 18 months of chemo and radiation treatments. How he kept us all laughing through it all. His goal was to make his very serious Oncologist laugh. It didn’t take long. He quickly cracked through the veneer of a man who spent every day treating sick children.

I’ll never forget how he still loved to mess with my mom. He loved little pranks. He would sit at the kitchen table while she would flush out his IV line and right as she was pushing saline into the tube he would scream “It’s burning!” She would laugh every time, right after she had jumped in alarm. He loved to trick us, to pull one off, but he was truly happiest when he was making us laugh.

He had a way of making you fall for the same joke over and over. He would call me at work as he and mom were leaving treatments and doctor’s appointments. He would pretend to be one of my customers. I sold pagers to corporate clients. He would use different voices and accents and call me with crazy complaints, irate fake tirades and real creative scenarios of where he lost his pager. He would always erupt in laughter once he was sure I had fallen for it again, then quickly say “Where do you want to meet us for lunch?” It was impossible to get mad at him.

But the only way for you to survive

Is to open your heart, it will guide.

You wanna stay in this world of music and life,

You gotta turn around, Spread a little love and get high..

So, today I’m going to laugh. I’m going to remember every funny Todd story I can think of and I will laugh. I’m going to hold all my happy memories close to my heart and be thankful there are so many to choose from. I’m going to go to lunch with my mom and eat a giant cheeseburger in his honor. I’m going to remember his smile. His voice. His easy going nature that drew people to him. Today I’m going to remember the times that we used to share. And I’m going to listen to Lenny all day.

 

 

 

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“You were fighting every day

So hard to hide the pain.

I know you never said goodbye,

I had so much left to say.

One last song,

given to an Angel’s son.”

-Sevendust, Angel’s Son

I never said goodbye. It’s taken me 14 years to realize it. I remember so much and so little about that night. Certain memories stand out like a bad dream on a loop that I can’t pause. I remember sounds. The shrill ringing of a phone. The sound of my breath. Raspy. Shallow. The inexplicable calm in my mother’s voice. “You need to come.” I stayed calm until I hung up the phone. Then I lost it. I didn’t want to go. I can’t do it. My hands trembled uncontrollably as I pulled on my pants. I was frantic and stalling at the same time. I want him to save me. Tell me I don’t have to go. Tell me it’s all some sick cruel joke. He took my hands and steadied them. “You have to go. You have to do this.” I nod quickly, more times than necessary. I manage to find the keys. “Are you ok?” he calls out. I nod one more time and shut the door behind me. If I talk, if I hesitate, I’ll break. I must move forward or I’ll crumble. I remember the sound of the keys. Clanging like a frantic jester in my trembling hand.  My teeth chattering. Nerves had taken over my body and I was shaking. I remember the audacity of a beautiful night. Warm. Breezy. In defiant contrast with everything I was feeling. I don’t remember driving there. Mom met me on the sidewalk to the house. She’d come out to give me the details. To let me know what I was going to see. Dear god, I just saw him two days ago, what could have changed in 48 hours? I tried to follow her into the house, but collapsed into her arms overcome with fear and anguish. I collapsed. I knew I was supposed to be strong for her, but I couldn’t help myself. I was ashamed, but I succumbed. I let her guide my limp body into the house. She sat me on a chair and comforted me. She comforted me. I knew this wasn’t the way it was supposed to go, but I felt more out of control than I’d ever felt in my life. When I finally calmed down and the sobbing subsided I went into the living room to see my brother. He was asleep, but not asleep. I realized quickly that the last time I saw him, only 2 days ago, was the last time I would have a coherent conversation with him. And what did we talk about? I don’t even know. Probably some bullshit. Probably me trying to be stupid and make him laugh. Did he know? While I was rattling off stupid one-liners, did he know that it would be the last time we would really talk? Was he annoyed with my oblivious idiocy? Did he want to scream at me or shake me and tell me to shut the fuck up? To be real? Did he want me to say goodbye? I’ll never know. I’ll never know if my self preservation robbed him of a real moment, of getting to say goodbye to me. He was always so protective, he wouldn’t want to upset me. He would have put my needs ahead of his. He would have hidden his disappointment. And now I’ll never know. That night passed like a dream. I remember some things so clearly. I remember feeling the most desperate panic I’ve ever felt in my life. I wanted to leave, to escape. My mind was screaming inside my head while the world moved in slow motion. I remember disbelief. I had been so hopeful. So optimistic. And still we were here. I remember worrying that he was suffering. I was so intensely scared that he was suffering and couldn’t tell us. I remember feeling guilt. Guilt because I laid on the floor and closed my eyes and drifted in and out of a tortured sleep. Guilt because my sister sat by his side the entire night. Not budging. Guilt because she was having to be the strong one and I reverted to a scared little girl who just wanted to shove her thumb in her mouth and rock back and forth. The details of that night and the next morning are sacred. We were all there. My parents. My sister. Her husband. Me. Joe. We all were there for a moment that is indescribable. It was beautiful and wrenching and I’ll never be able to put into words watching someone precious die. I think we all knew it – that moment. And I still didn’t say goodbye. I held up  afterwards. We all did. The house felt obscenely quiet. We were all in shock. I went through the motions. We all did. I still had wedding stuff to attend to. I still had to plan for the happiest day of my life that was to follow, only ten short days, after the worst day of my life. Planning seemed so superficial. So stupid. I didn’t care. I didn’t want a wedding anymore. I would have been happy with a signature on a piece of paper to make it legal. But my family wouldn’t have it. They convinced me that the wedding had to happen. I had to do it because it’s what he would have wanted. He knew, even before I really knew. He knew that Joe was the one. He told my parents, after I’d brought Joe home the first time,”That’s the guy she’s going to marry” So of course I had to keep on keeping on with the wedding. He would have been pissed if I’d canceled the biggest party of my life. But now, all these years later, I realize I never said goodbye. All these years later, when that realization hit me, it was like someone had cut my legs off. How did I sit by his side for hours upon hours, knowing it was goodbye, yet never saying goodbye? Was it selfishness? Was it denial? I have been told I should write a goodbye letter. The mere mention of that left me open and seething. A wound, this particular wound, that I didn’t even know was there for fourteen years, was now bleeding. I operate between two worlds. In one world I go about my business and tell myself that I’ll see him soon. He’s traveling. He’s busy. That’s why I miss him. This is feasible. The other world is on a more spiritual level. I know he’s gone, but I know he’s here. He’s with me. I know he was with me when I walked down the aisle on my wedding day. I can tell you the exact moment he showed up during the births of my three children. There have been times, random times, when I hear his favorite song and I know he’s with me. I feel the hair on the back of my neck stand up. I have felt him here with me when I’m writing about him. I still don’t want to say goodbye. But maybe I’m still being scared and selfish. Maybe saying goodbye is the right thing to do. So here goes… How do you say goodbye to someone when you don’t want to let them go? I don’t want you to go. I know I can’t put a cap on this, I can’t fold this up and put it in a box. But I do want you to know some things. Your life was a gift to us all. You brought laughter. You brought art. You brought joy. You made us, this hodgepodge family a real family. You gave each of us a part of you. Your smile that could light up a room. Your laughter that could soften the hardest of souls. Your humor that could cut through any moment and bring sweet relief of laughter. You could make me laugh when I didn’t want to laugh. And is there really anything better than that? Is there any greater gift? I want to hold on so tight, my jaw clenched in tight determination, but I also need to release. I am not going to tell you goodbye. I just don’t believe in it. But I will tell you all the things I wanted to say so badly. All the things I kept to myself because you weren’t giving up and I didn’t want you to think I was too. I want to tell you that I love you. I want to tell you how much better you made my life, everyone’s life. I can’t imagine a world without you, so I just imagine you’re still in it. I miss you. I miss you so bad I feel it in every bone. I hope you’re good. I hope you are happy. But I’m not saying goodbye. I’ll never say goodbye.

59445258-woman-crying

“Welcome to the inner workings of my mind
So dark and foul I can’t disguise,
Can’t disguise.
Nights like this,
I become afraid
Of the darkness in my heart…
Hurricane”

-MS MR, Hurricane

This has been a crazy year. At the dawn of 2013 I declared that it would be “The Year of Not Learning.” The previous year had been kinda tough. There were revelations, there was a touch of drama, I learned a lot. So I decided that for 2013 I was going to just coast. I had done some work on myself and my relationships already, it was time to take a break and just “be.”

It’s funny how the Universe doesn’t always listen to me. Maybe it’s because I’m not a walking Chinese Calendar. But it’s such a reasonable request. A little blissful ignorance is all I was asking for. I guess starting therapy for the first time in my life probably didn’t help. Therapy makes you think. A lot. About stuff you really don’t want to think about. That’s why you pay someone else to make you do it. Like a trainer at the gym. You could go do 500 sit ups and 500 lunges on your own, but you won’t. Sure, I could sit and think about my life, think about my thoughts. Work through some issues. But I won’t. I’ll half ass it the same way I do at the gym. I won’t really dig deep and feel the burn.

So, therapy and all that. It makes you feel stuff. Stuff you purposely have avoided feeling. It makes you (if you’re doing it right) take the lid off of the stuff you had so carefully put in a box, buried in the back yard and placed a giant boulder on top of. That stuff.

Sometimes life calls you out.

I started this blog the same month I started therapy. Coincidence? Who knows. But the things you learn about yourself when you start sharing your thoughts and your writing with the world- it’s fascinating. The things I’ve learned from reading some talented writers on their blogs- some of those things have been moving. Profound. Touching. Some of these things have knocked me off of my feet.

I recently had a blogger respond to one of my blog posts. This is a writer I have a lot of respect for, so when she said she could relate to what I’d written, I was honored. I felt gratified, like maybe I’m doing something right. Maybe if my writing connects with at least one person then it’s not totally indulgent. When I started writing in response to what she’d shared with me, I started to feel like a fake. I felt like I had touched on some things I was feeling but I kept them on the surface. Because that’s what I do with the really hard stuff. I keep it on top where I can see it and keep an eye on it and control it. And this writer, she doesn’t do that. She’s hilariously funny, some even say she’s snarky. But when she’s real, she’s gut-wrenchingly real. She’s the kind of writer I aspire to be. And her comments to me were more real and had more depth than my 1000 plus word blog post. I felt like a fraud.

I don’t know if I would have realized this without therapy. It doesn’t really matter, but what does matter is I’m starting to feel. What I’m allowing myself to feel isn’t fun. It actually kind of sucks. But I know it’s healthier than keeping it buried and pretending like it doesn’t exist. There’s a lot of stuff buried in that box. It can be overwhelming at times. If this was an anonymous blog I’d write about it here. What I will say is that I have realized that anger and grief are the two emotions I don’t allow. These are the two emotions I have shoved away my entire life.

Grief.

Fourteen years after losing my brother, I’m realizing I never grieved. I’ve had sad moments, I’ve cried, I’ve missed him so much it hurts. But I haven’t grieved. I got married 10 days after he passed away. My new in-laws stayed at my house for two weeks after my wedding. Then a few months later I was pregnant with my son. I never had time. And the truth is, I didn’t want time. I wanted to dive back in to work. I wanted to stay busy and preoccupied. But over the last few weeks, I’ve felt it. The only time I truly fell apart was at my brother’s funeral, at the grave side service. I collapsed in tears and wept uncontrollably in front of everyone as we were walking to our cars. But I gave myself about 45 seconds of tears before I pulled myself together.

Last week was the very next time that I cried like that over my brother. I wept uncontrollably, I didn’t try to stop it. I let it happen and I felt it. I wrote through my sobbing. I could barely see the computer screen but I wrote. And it helped. I don’t know if I’ll ever post what I wrote, but it helped writing it. It felt like purging. I was pretty sad for the next few days and my husband knew something was up. I kept brushing off his questions. Then Saturday night as we were putting together the kids’ Easter baskets, I started crying uncontrollably again. I had to explain to him through my sobs why I was crying, what had happened a few days earlier. He got it. Thank god he got it. He held me and let me do what I had to do. I wish that was it, but I’m pretty sure it’s not. Two good cries aren’t going to get the job done. But I now know that I can allow it to happen. I will try to loosen my death grip I’ve had on all these feelings.

Anger.

This emotion baffles me. When I feel it, I don’t know what to do with it. I usually don’t even know why I feel angry. And then I decide that if I don’t know then it must be unfounded, so I squash it like an annoying little bug. But lately, I’ve been really feeling it. Not often. But for someone who doesn’t usually operate in anger, I have had some random fury building up inside of me. And I do mean random. I shouldn’t want to throw a plate across the room because one of my kids forgot to put it in the dishwasher. That’s not a normal response I would have to such an offense. I haven’t actually thrown a plate yet but it’s been real hard to resist. Like I’ve had to pry my hands off the plate and walk away. So obviously I have some work to do there.

I want to be real here. I am walking the line between writing about what moves me and what’s on my mind and keeping some things private and respecting the privacy of the people I love. Sometimes it blocks the flow. What I am yearning to write about I can’t. Then I have to try to get creative and pull something else out that still feels real. It’s an uneasy push and pull and I’m really hoping I don’t fall on the wrong side of that line. I’ll write through some tears I’m sure. And when I’m feeling angry I’ll find something, some issue, some place where someone’s being an ass. Someone that is putting people down, stifling progress or passing judgement. And I’ll write about it. I’ll exorcise some demons through words. I will transfer all that rage onto some unsuspecting prick and I’ll love every minute. Or I’ll throw a plate… damn you, feelings.

 

 

photo: Deviant Art

“Happiness hit her like a train on a track…”

-Florence and the Machine, Dog Days Are Over

I have written before about being happy. And I wasn’t lying. Most of the times I am content and pretty happy. Happy is my default setting. But sometimes, behind the smile is a little sense of dread, a little apprehension, a dark shadow persistently tapping me on the shoulder.

Waiting for the other shoe to drop. I don’t know where this phrase came from. It doesn’t really matter, we all know what it means. That other shoe is the thing that floats around in my subconscious. It is my nemesis, the thing I am battling constantly. I refuse to let the other shoe and it’s haunting presence take away my decidedly determined good mood. I will be happy, damn it.

There have been times in my life where everything seems perfect. Things feel almost blissful. And then BAM. Life slaps you in the face with a shit storm. The most memorable and significant incident went like this:

Joe and I got engaged. I was excited, I was in love. I felt incredibly fortunate. I had never been more content and sure of my life and where it was going. During this time I was struggling with a close friend who seemed displeased with all my happiness. I told a mutual friend “I feel incredibly lucky, my life has never been better. But should I feel guilty for being happy?” This was expressed as gratitude for my happy situation and confusion over the other friend’s cold reception to our engagement news. Those words that I spoke, those words would haunt me in ways I could never have imagined.

A week after our engagement we found out my brother had Stage 4 cancer. Wind, sucked out of sail. Balloon, deflated. It literally felt like the sky changed from sunny blue to colorless and stagnate. A gray suffocating blanket of pain and fear and disbelief.

That shoe dropped hard. But there was no time to wallow. We had to fight. We all, my whole family, had to strap on our boots and steel ourselves and be strong for my brother. The other shoe would continually drop for the next 18 months. Hope would be raised only to be squashed. He would seem to be getting better, only to have a scan show more tumors. The final shoe that dropped crushed us all.

We all forged ahead. We found ways to be happy again. Four babies have been born since then (I had my 3 children and my sister gave birth to her third child). We all healed a little with each tiny soul that entered our world. Each baby opened up our hearts a little more to allow some joy. Each one of them gave us permission to feel a little more happiness.

In those early days with my first child, I felt like I was constantly looking over my shoulder for that other shoe. Behind my joy and wonderment was a paralyzing fear. What if something happened to him? What if he got sick? What if someone took him from me? I had come to believe that with joy comes pain. That for every happy event, there was an equal and opposite devastating event.

I have been fighting these thoughts for all these years. They come less frequently now, but they still pop up occasionally. I have honed my mental shoe battling skills. I remind myself that I can’t possibly predict when the other shoe will drop. I can’t foresee it and therefore control it or try to prevent it. It’s ludicrous to think that I can control fate. Life will deal what it deals. But part of me is standing watch like a sentry. Part of me is ready to see that shoe falling and by seeing it coming I can step out of the way. I can pull my family to the side and watch it hit the pavement. Whew. Close one.

I don’t know if this is healthy. I know it is a way of coping with the trauma of life sucker-punching you. And coping skills can be a great tool. Until they’re not. Until they are impeding you form moving forward. Until they are preventing you from living you life.

Right now, I am happy. I think about that other shoe a little bit less. I’m still scanning the world around me vigilantly. My eyes track back and forth, along with my mind. I don’t think I’ll ever not be on watch. Part of that is being a parent. It’s our job to keep our eyes trained our young subjects. But I might be standing a little stiffer, a little more vigilante than my neighbor. Having seen that the unthinkable can in fact happen, I have no choice. But I will keep my watch with a smile on my face. I will break this vigilance to play and engage and relax. But I will never be off duty. When I’m having fun with my kids, my ears will still be listening. While I’ll sleep soundly, my rest will serve to make me more vigilant when awake. I am working feverishly to not live my life in fear of that other shoe, but if it does drop, I will be fighting like hell to keep it from landing on those I love.