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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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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.

 

 

 

photo: ThinkStock/Comstock
photo: ThinkStock/Comstock

“Darkness has a hunger that’s insatiable and lightness has a call that’s hard to hear.”

-Indigo Girls, Closer to Fine 

Do you know why I hate drama? Aside from the fact that negativity breeds like a voracious beast, it’s just so damn wasteful. So much time and energy can be wasted on drama. And almost all drama is manufactured, created… and life is full of enough hard stuff.

I DON’T DO DRAMA.

Because I know what it’s like to have good days and bad days. I know what it’s like to have a day so bad you feel like you’re drowning. Like you can’t breathe. Like there’s no way out.

I know what it’s like to watch someone you love live in unspeakable pain. I know what it’s like to spend the night with your brother in the hospital. Watching him writhe in pain. Begging you to put pressure on his spine, to do anything to make it go away. To run down the hall begging nurses to do something. Help him. To pull them out of other patients’ rooms. Because those patients weren’t in his kind of pain. Because those patients weren’t 16 year old kids. Because those patients could wait because your brother was in pain.

I know what it’s like to watch the nurses shake their head in sad resignation because the doctor’s orders don’t include the kind of pain meds he needs. And it’s the middle of the night. And without a diagnosis no doctor was going to call in heavy duty pain meds.

I know what it’s like to hear a diagnosis. To steel yourself before walking in to the hospital room to hear the verdict. To send out positive hopeful thoughts. To will good news. To be full of forced optimism and hope. To have that all violently wrenched away from you in one moment. With one statement from the doctor. With a diagnosis. With the words “Stage Four” with the phrase “We have seen some cases of survival.” To run out of the room and abandon your family because you can’t breath and to collapse in the hallway in convulsive sobs. And to be ashamed because everyone else was keeping it together.

I know what it feels like to find out the next day that the point on his spine that you were pressing on the night before… that you were leaning in to with your entire body -sweating and grunting with all your might because he was begging you to- to find out the next day that you were pressing on a bone tumor that was eating into his spine. I know what it’s like to be hit with the sick realization that you were hurting him. To feel the bile in your throat and the panic of understanding. That while he was in more pain than most of us will ever experience that you were adding to it unknowingly. That you failed at helping him. That your brother, eight years younger, who you had always felt so protective of, that you had let him down when he needed you most. I know what it’s like.

I know what it’s like to have a bad day.

For me, any day that the people I love are healthy is a good day. Any day that someone I love is not in pain is a good day. Any day that is not riddled with worry and helplessness is a good day. Any day that you can reach out and hold someone you love is a good day.

Sometimes I need a reminder.

Last year I got a big reminder. One that knocked the wind out of me. I was having a bad day. The kind of bad day made of small, annoying things that seem much bigger. That can, if you allow it, take over and sour your mood. I was grumpy and caught up in whatever petty annoyances were going on in my life. Stuff so unimportant that I can’t even remember what they were.

I was sitting at swim practice grumbling internally and generally feeling sorry for myself.  I distractedly scrolled through Facebook until I realized there was a private message. It was from my high school best friend. She and I had lost touch after college and had reconnected a few years earlier on Facebook. Intrigued, I clicked on the message, expecting to see a greeting, a “How have you been, let’s catch up” type of message. I started reading and I felt like my heart actually stopped beating.

She told me that her daughter had been diagnosed with a horrible, rare disease months earlier. That she is only just beginning to be able to talk about it. On the spectrum of horrible diseases, this may be the worst. And I’m not being even a tiny bit dramatic. It affects young children. It deteriorates their brain. It deteriorates their body and their muscle function. It sounded like a horrific combination of two of the diseases I had always feared most: ALS (Lou Gehrig’s Disease) and Alzheimer’s. Except this happens to kids. Little kids. And there was no treatment. No cure. Most kids don’t live past their teenage years.

I was overcome as I was reading her words. I looked at my son swimming his laps. At my daughters sitting next to me. I felt like I wanted to scoop all three of them up into my arms and hold them indefinitely. I wanted to reach through the ether of cyberspace and hold my friend. My friend who I hadn’t seen in years. With whom I’d shared years of friendship and good times and laughter. And now she was going through unimaginable pain. She knew what it was like to have a bad day. 

My friend doesn’t have time for drama. The world looks a lot different from the perspective of grief and fear and survival. You don’t have a moment to waste on whispers of “He said, she said.” You don’t have time to worry about what other people think. You don’t have time to dissect every interaction and analyze how it might have been received or perceived. Because you are fighting. You are fighting to not drown under the incredible weight of fear.

My friend is amazing. She is fighting for her daughter. She started a blog. She published her very first blog post. It was about her daughter. It got Freshly Pressed (a huge honor in the behemoth WordPress world). The next day it got picked up by The Huffington Post. Donations started pouring in. The community came together. People are raising money. Raising money because there’s a trial for a new treatment that won’t happen without money. A treatment that shows promise for a disease that had no hope until now. One that has shown reversal of symptoms in the lab.

A possible cure.

My friend doesn’t have time for drama or politics or any of the things that get us worked up or angry or caught up. She is fighting for her daughter’s life. She and other parents. When time is precious and every moment is to be soaked up and absorbed, she is spending countless hours raising money to try to save her daughter’s lives. When all she wants to do is cuddle with her daughter. To read with her and watch her play, she is organizing and promoting and spreading awareness. She is fighting to have a good day. A day with a daughter who’s healthy. A good day when she can hear the words “She’s cured.”

That’s perspective.

The good days that I, that you, that most of us, take for granted… she is fighting for that. My brother fought for that. While he lost his fight with Cancer, he had plenty of good days. He made good days… good moments… he insisted on laughter and fun even when hooked up to tubes and machines.

So no, I don’t do drama.

Because life is short.

For some it’s unfairly and heartbreakingly short.

Because we will all have some bad days.

We will all feel fear and pain and loss. It’s inevitable. So on those days when you aren’t feeling pain… when someone you love isn’t hurting… when you’re not feeling crippling fear… Those days where you don’t feel like you’re drowning…

On those days… enjoy it. Don’t let anyone or anything take it from you. Wrap yourself up in the warmth of a positive thought in the face of negativity. Cloak yourself in comfort when the world throws obstacles. Protect yourself and treat yourself gingerly and with love. And when you see someone who’s struggling, even if they’re spewing anger… give them a hand. Chances are they’re having a bad day. Chances are they’re feeling fear or pain or rejection or heartache. Chances are they’re drowning. Be their lifeline.

If you want to hear more about my friend’s daughter and their fight:

http://www.gofundme.com/abbygracecure

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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.

heart-break15

“I see him sometimes and the look in his eyes

Is one of a man who’s lost treasures untold,

But my heart is gold, I took back my soul”

-Lauryn Hill, I Used To Love Him

I remember my first heartbreak like it was yesterday. I fell in love for the first time at the age of 16. Naive, vulnerable, tender. I fell hard and handed my heart over to a boy two years older than me. This was not the love of my life, but it was my first love. And it brought me to my knees.

Boy (as he shall be called for the purposes of this writing), sucked me in to his world. He made me feel pretty for the first time in my life. He made me feel smart, made me feel important. He would write me poems. He would play me songs that made him think of me. He would look at me in wonderment, always finding different ways to express his feelings for me. It was quite the ego stroke for a young girl.

I put him up on a pedestal. Young love tends to overdramatize and place importance where it is not deserved. It’s not a healthy thing, this love of the young. But it is all encompassing. It rules the world of star crossed lovers.

He would pick me up for school in the morning, his old Chevy Nova covered in black primer rumbling loudly in my the driveway of my childhood home. It was a “work in progress” he said. Then he would grab my hand, squeeze it tightly, exuberant and excited to be with me. His buoyancy was believable, it was contagious. Then one morning he didn’t show up. Didn’t call. Just didn’t show. No warning. Yesterday, on top of the world to call me his. Today, nothing.

I got a ride to school with a friend. I walked, each step heavier than the last, into the open courtyard where students congregated before class. I was immediately surrounded by my girlfriends. They informed me that Boy had showed up with his ex-girlfriend and she was proudly carrying with her a bouquet of roses. I felt like all the air had been sucked out of me. Vision blurry, I made my way to a pay phone as the first bell rang for class. Grateful that everyone was headed indoors, I shakily punched the buttons to call home. My mom picked up and before she could finish saying hello I dissolved. Sobbing uncontrollably. Words broken by the intake of air as I tried to tell her what happened.

She came immediately to pick me up. I will forever be grateful for her understanding. She didn’t minimize the pain I was feeling. She didn’t brush it off as a silly little romance. She didn’t insist that I stay at school. She knew I needed to talk to her and she would never let me down when I needed her.

She comforted me while I cried, she said all the appropriate things. She waited until I calmed down and started breathing normally before giving me the talk. She looked at me with determination, trying to give me strength with her words, willing me to absorb what she was about to say. She told me that I would not sulk, I wouldn’t wallow. She told me that I was strong, stronger than I knew. She told me that I would walk into school the next day and every day after with a smile on my face, laughter on my lips. She told me that I would show him, show myself, that I deserved better. Because I did. She told me that I was destined for great things. That this hurt but that I would get through it. She told me that I was destined for a great love one day. The kind of love that is written about, the stuff of the great songs. And I believed her. I always believed her.

I grieved for the next few days. I woke up from a deep exhausted sleep, the realization hitting me anew each morning, the reminder that my heart had been crushed. But I walked into school every day with a smile. I laughed with my friends. I hid my pain and loneliness behind a smile and a breezy walk. I could do this. I was almost a professional at hiding my true feelings. The whole school was abuzz with the drama of it all. I shrugged it off. I couldn’t be bothered with talk of it. Whatever. But inside, I’m dying.

He came back. He wanted me back. Against my mother’s advice, my sister’s advice- everyone’s advice- I took him back. But I never gave myself, my heart, over to him again. We dated for a few years, through his early years in the Marines. A long distance love fueled by passionate letters and quick visits on his brief leaves. This suited me. I could write about love. But I could never truly give it to him again. Eventually the intense burn of the long distance romance flickered. We were on again, off again. I was having fun with friends, I was planning for college. Then it was over. And I broke his heart.

At sixteen I learned what it was to have loved and lost. I learned to guard my feelings. I learned that I can be forgiving but my heart can’t. I can’t un-ring the bell of hurt and pain. I can go on, I can be strong, but I can never go back. Once forsaken, my heart is done. Never to be reclaimed by the one who tore it asunder. Self preservation? Cold? Smart? I truly don’t know. I just know that it is. It’s how I’m built. I know my limitations, if you want to call it that. But this heart is mine. I’ll do with it what I wish. And I wish to protect it. I will never let it be broken again.

“Remember the times that we used to share…  You got to remember the times that we used to share….  But the only way for you to survive is to open your heart, it will guide.”

-Lenny Kravitz, Sittin’ On Top of the World

I didn’t want a younger sibling.  I wasn’t completely opposed to the idea, it just wasn’t something I had wished for.  What I wanted was a puppy.  The day that my mom and step dad announced they were having a baby I knew the dream of a dog had just died. I acted happy, just kind of went through the motions of how I figured I should feel.  It wasn’t that I was unhappy,  more like indifferent.  I found the subject completely boring and all the talk about the baby for nine months (which to a seven year old feels like about 3 years) got really old and boring.

Then he was here.  My little brother.  Todd.  I was expecting to be unimpressed.  I didn’t expect to really care too much about this little thing that had taken over my family before he was even born.  But I was sucked in.  I had never seen anything so adorable.  I immediately felt love and protectiveness and awe.

My life didn’t change much at first.  Aside from having to tiptoe around our house when he was sleeping, I still went about my business.  I still played with my friends every day.  The only thing that was different was that I rushed home from school to see him before going outside.  There was  a different feeling in our house.  There was a light, an excitement.  He made our little blended family a real family.  We all were madly in love with this little person and we all laughed together at his every coo and grimace.

Eventually the baby became a toddler and no less cute.  He continued to charm us all.  But our roles became clear.  My sister was like a second mother to him.  She was 11 when he was born and had always had a maternal side.  I was his sister.  I doted on him briefly, then I would go do my thing.  As my brother got older, it was clear he and my sister had a very special bond.  He adored her and was very attached to her.  And it was clear that I was his sister.  I was the person he would harass when the urge struck.

I was defenseless against his antics.  I couldn’t respond in kind.  I was 8 years older than him and any retaliation would have resulted in swift punishment.  I couldn’t even really complain or tell on him.  The response would be Really?  He’s 8 years younger than you and you’re tattling on him???   I’m not saying he was ever mean to me.  His stuff was just mischievous little brother shenanigans.  But annoying to an older sister for sure.

One year, his best friend brought him a souvenir from a trip to Asia.  It was a Japanese spinning drum, just like the kind used during the final fight scene of Karate Kid 2.  I was about 15 or 16 years old.  Like any typical teenager, sleep was incredibly important to me.  Not at night, night time is fun.  But in the morning.  All week I would look forward to sleeping in on Saturday morning.  My brother was an early riser at that age.  He would get up early on Saturday mornings with my Stepdad and they would watch He-Man cartoons and eat Cocoa Pebbles together.  At some point, when he got bored with cartoons, he would sneak in to my room with his little drum and get as close to my ear as possible and spin it fast.  I would wake to the sound of this hellish toy, jumping out of bed in a startled flurry.  “Todd!!!” I never really yelled anything else.  Just his name.  What else can you yell at a little mischievous twerp who is so good natured at the very moment that he’s pestering you?  He did this off and on for months.   He would scamper out of my room gleefully.  He wasn’t scared of me at all.  And he was super proud of himself for riling me.

Other times he would sneak on to the phone while I was talking to my friends.  I would only realize he was eavesdropping when we would say something that made him laugh.  I would hear his laughter that sounded like light bouncing around the room.  He didn’t even try to muffle it.  “Todd!!!”  I would yell, then apologize to my friend.

When I went off to college our relationship changed.  I was still his sister and he still enjoyed playing his little jokes on me, but this is the time when we became friends.  He missed me.  Or maybe he missed having someone in the house to harass.  Either way, I had transitioned from his annoying older sister to his cool sister who was in college and did all kinds of cool stuff like go to awesome concerts and parties.  He occasionally would call me at school to ask for my advice about girl problems.  The first time he did this I got off the phone and cried.  My little brother was growing up, he was starting to be in to girls.  And he wanted my advice.  I was honored.

We both loved music.  He leaned more towards hip hop and I was definitely more into rock and alternative, but sometimes our musical tastes melded.  He started liking Bob Marley.  I started liking Biggie.  We both loved Lenny Kravitz.  I would make him cd’s when a new Lenny album came out and he made me cool mix cd’s of rap songs I liked. Even though our relationship had matured beyond sibling rivalry, he still didn’t miss an opportunity to tease me or make a joke at my expense.  Except now his humor had evolved and it always had me laughing hysterically.  I couldn’t stay mad at him.  He could annoy me one second and have me laughing in spite of myself the next.

Then Todd got sick.  Real sick.  He had Stage 4 cancer.  It was bad and we were all devastated.  He was only 16.  Somehow he still managed to be funny.  He took his comic antics to the chemo room with him, to the hospital, everywhere.  No one was safe.  His Doctor, who was brilliant and wonderful was also quite serious.  My brother always found a way to break through his facade and get him to laugh. He had a gift for making you fall for whatever prank he dreamed up.  When the nurses would flush out his i.v. lines, he would act like the saline was burning him.  They would fall for it every time, panicking for a second before realizing he was just having fun with them.  A lot of people laugh in the face of pain, but we were all amazed at his way of coping with things.  He actually was having fun, he was finding little moments, little pockets of time, when he could lighten the situation and have a good laugh and look around at a room full of smiling, laughing faces.

He took to prank calling me at work during this time.  He was missing a lot of school for chemo treatments and I would often meet him and my Mom for lunch near the hospital on my lunch break.  But he couldn’t just call me and tell me where to meet them.  He had to take advantage of these moments and be my little annoying brother once again.  He was a master at using different voices and dialects.  He would call me up, claiming to be one of my customers and would make up crazy stories about his pager and what he “accidentally” did to it, or he would be an angry customer getting me all flustered before revealing his identity with his trademark laugh.  A laugh that was pure joy and glee and self satisfaction.  I was barely able to feel happiness during this time.  Yet somehow he laughed and joked and didn’t let the situation get the best of him.  And in the process he helped all of us get through those days.  I know his intention when he would pull these pranks was not to brighten my day, he was doing what he loved doing.  Finding a situation that no one else would think of laughing about and figuring out how to make it funny.  Every time I would hear the laughter over the phone and realize I’d been had, I always said the same thing, “Todd!!”  I still had no other words of recrimination for him.  Even being the butt of his jokes I had to laugh and aside from the early Saturday mornings, I can’t say I every truly minded.

For 18 months life stood still and moved at breakneck speed all at the same time.  We packed a lot in to a year and a half.  Every Thursday Todd and his girlfriend would come over to the apartment where Joe and I lived and we would go out to eat dinner and go see a movie.  We took them to one of my friends’ Halloween parties with a lot of my college friends.  He later told me it was the best night of his life.  We took him to a Lenny Kravitz concert with us.  We spent a lot of quality time together for those last 18 months.  That time was a gift that I will cherish more than anything the material world could ever have to offer.  I got time with my little brother.  Time to bond as adults.  Time for him to really get to know my husband before we got married.  Time to laugh.  It was by far the most difficult time in my life, yet the most precious.  In spite of the gripping fear I felt every day that I would lose my brother…  in spite of waking up every morning for 18 months and being hit with the realization that it all wasn’t some bad dream…  in spite of everything, I wouldn’t trade those 18 months for anything.  And through those last months, he gave me the greatest gift.  He was still my little mischievous brother.  He still played his pranks, he still made me laugh.  He still annoyed the hell out of me.  I still said my exasperated “Todd!!”  multiple times a week.  He always said he didn’t have time for cancer.  By that, he meant that he wasn’t going to let cancer stop him from living and having fun.  But he also showed me that cancer wasn’t going to change our relationship.  Yes, it evolved, as it would have if he hadn’t gotten sick.  But he still was the little boy, catching me off guard, pulling off his jokes and making me laugh even when I wanted to get mad.

Even now, I revert back to those times.  Sometimes when my husband has teased me or pulled off a prank at my expense.  Or when one of my kids does something mischievous and funny at the same time.  I catch myself blurting out my little brother’s name in mixed joy and frustration.  Those moments, I know they happen out of a conditioned response to certain behaviors, but I also think it’s my brother’s way of telling me to lighten up a little.  There’s always a reason to laugh, always a reason to smile.  And it reminds me of what he and I shared.  Yes, it was sibling rivalry.  But out of sibling rivalry comes the best friendships.  And when I look back on my memories of him, the ones that come to my mind the most- the ones that make me smile- are the ones where he was being my little brother.  Those times when he irritated me and exhausted me and frustrated me, those are the times I cherish the most.  Those memories are the ones I share with my children so they will know who their Uncle Todd was.  Those memories are the ones that I reach for when I’m missing him most.  Those antics that helped me laugh through 18 months of pain and fear, and those are the memories that help me now.  After 14 years I still get caught off guard and overwhelmed with the pain of missing my little brother.  But I always think about those times.  Inevitably they have me shaking my head and smiling… laughing through my tears.

remember-the-time-blog-hop

Once again I have the joy of participating in the “Remember the Time” blog hop.  The subject this week was “Sibling Rivalry”.  I’m so grateful to the hilarious and talented writers of The Waiting and Are You Finished Yet for creating this and allowing me to participate!