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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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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.