I love, love, love music. I can remember music being a part of my life for as long as I can remember. When I was a wee little person, I can recall listening to music on our super-sweet stereo system that was bigger than our television. Seriously. The console was a large piece of furniture that dominated the living room. The top of the console lifted up to reveal a kick-ass turntable. There was a penny glued to the top of the needle to prevent skipping. Tons of those little yellow inserts used to secure 45′s were scattered about. And albums. We had everything. My step-dad liked classical. Mom liked musicals. I loved Peter Frampton. Frampton Comes Alive was my very first album. I asked for it for Christmas in 1976 (I was eight). I played it so much I wore it out. As well as the copy after that. And then yet another.

I did eventually expand my horizons to include other artists but I have struggled in trying to let go of that particular genre. Classic rock is what I love the most. Back in the day I had an impressive collection of vinyl. And I totally played the crap out of every single one. What brings a smile to my face today is when I hear one of my old favorites on the radio and I can still recall the slight hiss of my vinyl or where the record had a permanent skip. It’s so ingrained in my memory that the flaw on my album has become a part of the song. And no one gets it but me.

Maybe there’s one boy who gets it. I’ve known this boy nearly all my life. He’s got a bazillion albums – a collection I used to know many moons ago – but haven’t seen since the late 70′s when I used to sneak into his room and peruse his collection without his knowledge. I understand that his collection today requires its own zip code so he’s expanded considerably. Anyway, I used to be friends with his younger sister. Back then, he had little use for me. But when I saw his albums I was transfixed. Most girls would be enamored with a closet full of clothes or perhaps a collection of dolls. But not me. Those albums were what drew me in. I remember sitting in the basement of their house listening to “Captain Fantastic and the Brown Dirt Cowboy” through those gigantic earphones that only the 70′s could make popular. Oh, the music then was so wonderful. And I was secretly in love with the boy who owned all those albums.

So, I followed him around like a puppy. And over the years we began to like each other as people. We’d talk about music. We’d contemplate the seriousness of life. We’d laugh over the ridiculous. And, eventually, our friendship surpassed the one between his sister and me. His friendship became a priceless treasure. There was nothing we couldn’t talk about.

Then, nearly 20 years ago, I made the poor decision to not marry him. I guess I was afraid that it would screw up our friendship. I didn’t fully understand that friendship was the most incredible foundation you could have for a marriage. We liked each other. We loved each other. And I couldn’t stand the thought of losing that by marrying him. See, I’ve had a total of EIGHT marriage proposals over the past 25 years. I guess I have a hard time taking proposals very seriously (in my defense, I’ve only accepted three and acted on two.)

So I took off. But not before “borrowing” his VHS tapes of the X-Files. Unfortunately, we were out of touch for a while.

Then, over a decade later, we reunited. And it was as if nothing had changed. At least from a friendship standpoint. We still contemplated life. We still laughed at the ridiculous. He had moved on with his life as I had with mine. We were in different places but still the same people who had a deep respect for one another.

Until he asked me about his X-Files tapes. I had no response for him other than I had saved him from a dying technology. VHS was out. He would have had to upgrade to DVD at some point, I just saved him a step. Right? He didn’t buy it either. Truthfully, I had simply lost the tapes along the way, most likely during one of my many moves in Summit County.

This last year he has been instrumental in helping me maintain my sanity. I’ve had so many heartbreaks that if it weren’t for him, I would have drowned. Interestingly enough, I didn’t fully realize that until just recently. See, I’d been seeing someone who used me terribly. Lied to me outrageously. And the whole time, my dear, sweet friend saw right through him. Never once did he try to dissuade me from following my heart. He told me what he thought but then left it to me to make my own decision. And the beautiful piece of it? He remained my friend. He didn’t abandon me because I was making what was – in everyone else’s eyes – a very bad decision. And when it all fell apart he handed me a bandaid and told me to get on with it. We make lists of songs that will help me get over the hurt and nearly every day he encourages me to do the best I can do. Each day it gets a little easier. And then – maybe not soon, but one day – the pain will be gone.

That right there, my dear readers, is a friend. He has forgiven me for the hurt I caused him (mostly over the X-files tapes – not the marriage thing). He loves and accepts me as I am. He supports me no matter what. He encourages me. My life is better because of him.

So, on National Record Day, I want to thank my best friend, James, for standing by me during some really jacked up stuff. You’ve shown me what a true friend is and I’m so blessed to know you. In your honor, I’m going to come up with the five best songs to describe how I feel about you. I’ll forgo the obvious Queen selection. You really are, without fail, my best friend. And maybe someday you’ll leave all of your beautiful albums to me. Except that J. Geils crap. You can leave that to Scotty.

ILUNBS.

*NOTE* I also have a super awesome female friend named Steff. She’s never asked me to marry her or anything but we have a connection that is just as special. I’m just a lucky, lucky girl to have two best friends.

See, the last twelve years of my life I have done it all wrong. I returned to Ohio after receiving my MBA in 2000 thinking I was going to make a fresh start. Instead, I ended up getting pregnant and marrying someone I simply did not love. He seemed to be a nice enough guy, I’d known him for a long time, but he just wasn’t well suited for me. No matter, I was pregnant. And my mom highly encouraged me to marry him, despite my initial desire to just have the baby and never tell him. After re-thinking that scenario, I decided to enter into a relationship with him. I tried to make it work. And, for a while, it did. We had Ben. For the first two years, things were okay. Then Ben got sick as I was expecting Madeline. The stress of a not-so-strong marriage intertwined with a critically ill child and a newborn was completely overwhelming. Add to that the financial devastation from Ben’s illness, Matt’s job losses, difficult family issues (on both sides), and the stress that Ben just might not live.

The initial 15 months that Ben was in treatment was hell on earth. Given the circumstances, neither one of us knew what to do. I would have to say that most families who enter into the world of having a critically ill child either grow stronger or fall apart with most of them doing the latter. Seeing how we didn’t have the foundation that many marriages had, we were lucky to still be standing, let alone make it through that first round of treatment with our marriage still intact.

After a year and a half of intensive therapy, Ben was in remission. Matt got a job in Colorado. We seemed to be starting over and doing better. Then, Matt lost his job again. This was the beginning of the end. Without going into dirty details, life with him became unbearable. I wanted to leave him. I made plans to leave him. I should have left him. Because I had met someone else.

But Ben got sick again. His cancer returned. I lost all hope in having any sort of normal life and knew that I wouldn’t be able to face Ben relapsing the same way that I had to muddle through it all on my own before. I knew I wouldn’t make it through without support. Oh, sure, I had family and friends who were supportive, but not in the way that a spouse should be. I didn’t have that from Matt. And to be fair, I’m sure Matt felt that he didn’t get it from me. But I did have a man who was very supportive and led me to believe that he was my knight in shining armor. I wanted to believe it so bad that I fell for it hook, line and sinker. He was a precious bit of levity that I so desperately needed during my own personal hell.

It was wrong. I was wrong. It was ultimately very hurtful to everyone involved. It is over now and I’m moving on, but it doesn’t change the fact that I was so very wrong. Despite our being formally separated, I should have left Matt entirely before moving on to someone else. But given the change of events with Ben’s health, I didn’t make the right choice. I didn’t want to hurt the children by getting a divorce in the midst of Ben’s treatment.

The affair was a wonderful distraction. Something that took me away from the pain of my abusive husband. Something that sheltered me from the heartache that I might possibly lose my son. That he had to go through this trauma yet again. My new love helped me see the good in what was a seemingly horrible situation. I once again found hope in life. I felt restored and ready to fight again. I was stronger.

And so it went for nearly three years.

I believed he was my soulmate. It certainly felt that way. But, ultimately, it was all a lie. I can honestly say that I’ve never, ever loved anyone like I loved him and oh how it pains me to know that he didn’t deserve it. I know that someday I will emotionally move on, but it has been stinging for a while and I don’t anticipate that it will stop anytime soon.

I guess I got what I deserve.

The one benefit of it all is that I’m finally free from the marriage that I was in, despite the continuation of the emotional turmoil. I’m sure that his emotional abuse will go on for many years to come. While I had done nothing to deserve his emotional tirades before having an affair, I am now a whore, which gives him carte blanche to treat me however he chooses.

But those are stories for another time.

God, I never wanted to write about any of this. It’s hurtful. My time married to Matt was an embarrassing mistake and my affair even more so. I am a smart girl who has made some seriously fucked up decisions when it comes to men. I am guarded when it comes to relationships. I always have been. I have serious trust issues because of exactly situations like this! I didn’t marry until I was in my 30′s because I wanted to do it right. That didn’t make a bit of difference. I tend to be attracted to the liars and abusers. I swear, they need to develop a chemotherapy to rid the world of these cancerous men.

I understand that I need my own therapy to not make poor relationship and personal choices. I know I was wrong. I take responsibility for that.

There just ain’t nothing funny about any of this. But there it is. My confession. I am free.

Today, however, will always be known to me as the day my mother died. I’m struggling to grasp this fact, because despite it being an entire year ago, it sometimes feels very surreal. During the final few years of her life we had more downs than ups. We struggled on so many levels. She was spiraling into her world of dementia and I was spiraling into my world of… whatever. So many things were falling apart in my life that I just accepted that we were falling apart, too. I’m not going to rehash all of the hurtful things that occurred because there’s just no point to it now. But I have come to the realization that there are times that you always want your mother, no matter how old you are and no matter how dysfunctional your relationship has been.

2011 was a very poopy year for me. Mom’s death was just the beginning of a chain of many other devastating events. Some of them I’ve explained here on my blog but many of them I haven’t discussed at all because they’ve just been too much to deal with in a public venue. But on more than one occasion, I know I’ve said to myself, “I want my mom.” And I’m genuinely grief-stricken to realize that she’s gone. Slowly, event by painful event, I’m realizing that she is gone. No longer can I put my head on her lap and feel her stroke my hair and tell me that everything is going to be all right. She’s not there to kiss away the boo-boos. Or warn me of the poor choice I’m about to make. Or encourage me to do the right thing.

Oh, okay. Those events were few and far between. I constantly struggled to make my mom proud of me. I know I’m overly critical of myself, but if she ever was proud, she was reluctant to say anything to me about it. She had told me on more than one occasion, “I love you, but I don’t like you very much.” Maybe it was because we were both stubborn. We both shut down emotionally when we were wounded. We both struggled with feeling loved. Maybe those issues played into our combative relationship. I don’t know. But whatever it was, we were more at odds with each other than not.

Regardless, there was a time last year where my skin was crawling and I had absolutely no hope of escaping a harrowing situation. My mind swirled with who I could possibly reach out to who would understand and offer me something – anything – other than what I was playing on a constant loop through my head. I wanted to die. I wanted my misery to end. And I knew the only person who would understand was my mom. Never in my entire life had I needed her more. And of all times for her to be unavailable, well, this was really not a good time for me to be without her. I knew she would be the one to help me. I knew she would encourage me to find the humor in the bad. That is one thing that we had in common and were able to share: a biting sense of humor. I knew she could help me if only she was here. But she wasn’t. And I felt as if I had no one.

In actuality, I had so much but didn’t realize until after the fact. I had so many people loving me and helping me and encouraging me, but mom’s glaring absence made the experience so much more painful than it needed to be. I missed her sense of humor. I missed that she would have made me laugh about it. I miss that maybe, just maybe, she would have been proud of how I handled myself in the midst of something truly horrific.

But I never told her that I needed her. Never once. And I think that broke her heart more than anything else. Now that she’s gone, well, that hole can never be filled. Something that could have been so easily reconciled if only she knew how much I needed her. But now, it’s too late. And I’m still stubborn. I don’t need anyone. I shut people out and turn people away and decide that I can do it by myself.

And for the most part, I can do it all by myself. But that’s no way to live. I’d like to think that I’ve learned my lesson – her last lesson to me – that waiting to say what you really mean is a waste. Each moment is precious. We only have right now.

While my earthly loss dictates that it’s too late for us I feel that I have to say it anyway: I need you, mom. I’ve always needed you. And I need you now more than ever. I wish we could have been better at being a mother and daughter. I’m sorry for being so stubborn. But I truly did learn from the best.

Our love was not perfect by any stretch, but I treasure it anyway. You have no idea how much I miss you. More than a million and twelve.

Today is also National Grammar Day. Now, I am not always perfect in my sentence structure but I do have trouble with basic grammatical errors. Knowing the difference between your and you’re is important to me. I also struggle when people confuse there, their, and they’re. While I love texting with my whole heart, I despise the “short cuts” of UR and using the number 2 to communicate the word “to”. It’s just one extra letter for crying out loud. But my real struggles come with grammatical errors in verbal communication. For instance, just two days ago I heard a grown man say “I don’t want no soup.” I tried not to shudder, but it was an involuntary reaction. I had no choice. I’m not a snob, I just don’t understand why grammar is so elusive to some. We learn it in the very beginning of our academic lives. It’s not like one needs an advanced degree to use correct grammar. Then again, I’m sure there’s a person out there who feels the same about Math. I suck at Math. I struggle with basic multiplication facts. I’m sure the Math Whiz watches me using my fingers to figure out 8×9 and thinks, “What an idiot.” And they’d be right. I can speak a good game but in reality I have no idea what I’m doing.

What it comes down to is that every single one of us has a deficiency in one area or another. I’m frowning on the grammatically incorrect person sitting next to me, while they’re frowning at someone for not knowing how to do something that THEY find to be important, and so on and so on. We all have faults.

No matter what our names happen to be.

As I was writing this first paragraph I thought to myself, “How cool would it be to have a Real Housewives of Historical Figures?” I can totally imagine Susan B Anthony (I know, she never married, but that never stopped BRAVO from casting their choices), Harriet Tubman, Annie Oakley and Mary Baker Eddy getting together and having some Victorian throw-downs. Oh, okay, my timing might be off, but it’s a good argument for reanimation of the dead. Ooooh! Real ZOMBIE Housewives of Historical Figures. This idea just keeps getting better. From there it can spin off into Real Housewives of American Presidents. I’d love to watch an episode where Martha Washington, Eleanor Roosevelt and Hillary Clinton scrap over whose china is prettier, wouldn’t you? Of course, we’ll have to throw in the occasional Whig. I’m so pitching this to BRAVO. I think this is the big break I’ve been waiting for. Now I just need to find someone to help me with the reanimation piece.

Okay, I’m pulling back from my warped fantasy land where my “brain director,” Steve, reigns supreme and giving myself a little reality check. Let’s see. I only posted once last month… THAT will be changing. I’ve been writing daily – thanks to the encouragement from my good friend, James, but it’s not really stuff that’s fit for posting. I need to get back in the groove but so many things have been making my needle jump track. Life has been so distracting lately, with trying to organize my apartment, doing the job hunt thing, planning the next trip to NYC for Ben’s therapy (hopefully there will only be THREE MORE of these torture sessions for him!), and just all the stuff that doesn’t want to cooperate with the flow of daily life. Like my dog forgetting how to poop outside. And laundry.

Speaking of which, I need to go. Laundry is staring at me and I’m quite confident that if I don’t take Yoshi out in the next five minutes he’s going to leave me another surprise. He has gotten better. I’m sure it’s simply an adjustment period to the new apartment, but we’ve still got a little work to do. Honestly, we’re all working on adjusting.

I’m just glad my anxiety manifests in other ways besides little piles of poop.

Here’s the scoop.  It was Spring Break, 1987. I was a freshman in college and had just suffered a major life-trauma: the unexpected death of my step-mother. Actually, the anniversary of her passing was just a few days ago. It’s been 25 years since she died, which is just so hard to believe. Anyway, her death was completely unexpected (a suicide) and it left me severely shaken. Luckily, I had some awesome girlfriends (Ann and Rhonda) who were planning a trip to the East coast during Spring Break to visit our Resident Assistant, Maurianne (aka: Mo). They invited me to come along, which I whole-heartedly accepted.

Off we went. Three girls hitting the open road in a sweet white Camaro. Rhonda drove the entire way since it was her ride, Ann sat shotgun, and I rode in the back seat. Being the shortest of the three dictated that I was the wise choice to squeeze in with the luggage. Oh yeah, and my hermit crab, Alvin, was along for the ride, too. Seriously. I couldn’t leave my hermit crab at Ohio University for an entire week all by himself. Who knows what sort of trouble he’d get into?

Pittsburgh was Ann’s hometown so we made a stop there for a couple of days before making our way to Rhode Island. Pittsburgh was a lovely stop in our line of travel and certainly took my mind off what had been going on in Ohio. Then we continued our journey east. When we arrived in Barrington, I fell in love. I decided that it was the most beautiful place I’d ever seen and swore to myself that I’d live there some day. This was a couple of years before I stepped on top of the Continental Divide and decided to live there instead. I walked the rocky beaches, saw the sites, and took comfort in knowing that I was with three of the sweetest friends I’ve ever known and still have the pleasure of having in my life.

One night we decided to go out in Boston. I brought my fake ID along  - yes, I had a fake ID – which gave me the new persona of a girl named Wendy instead of the Sarah we all know and love. “Wendy” was a newly minted 21-year-old from Marietta, Ohio. She had blonde hair and brown eyes but was approximately the same height and weight that I was. I don’t remember the specifics of how I gained this new identity but it doesn’t matter. The ID did what I needed it to do. The bouncer didn’t even look at the stats. All he asked was for me to recite “my” social security number, which I had memorized.

We were in! It was my first time in a real live non-campus bar. Some guys at the end of the bar offered to buy us drinks. Since I was really only familiar with beer, I thought I’d be cool and order a shot of the only other alcohol I’d heard of – tequila. MISTAKE! The first whiff had me gagging but I bucked up and quickly tossed back the shot before I could change my mind. Besides, I didn’t want to appear wimpy in front of our generous benefactors.

A few shots of tequila later, we piled into Mo’s mom’s Buick to head back to her house. On the way, we stopped to take a quick tour of Mo’s old school. Upon getting out of the car I saw what looked like a dog. I called out to it, making kissy noises, slapping the tops of my thighs and begging it to come to me. It didn’t. One of my girlfriends said, “No. That’s a cat.” So I slurred, “Here, kitty kitty kitty kit-TY!” Still. No movement from the animal. We started inching closer – trying to be quiet so we wouldn’t scare it away. Once we were within 20 feet of it we realized it was a freaking tree stump. We fell down on the ground crying with laughter. Something like that can only be funny thanks to the effects of tequila.

On the way home I threw up in the back seat of Mo’s mom’s Buick. Maybe it’s not such a surprise that I was never invited back to Rhode Island. Actually, that’s not true. Despite my severe faux pas I was immediately forgiven. But I haven’t been back to Rhode Island since. Stupid tequila. You mess up everything that is good.

I spent some time as a cocktail waitress when I lived in Summit County, Colorado. I always dreaded the times that a rowdy group of people would order a round of shots because it was almost always tequila. The smell of this demon juice teleports me straight to the back seat of Mo’s mom’s poor Buick. I have absolutely no love for tequila. Not even diluted into a margarita.

So, on today’s holiday, I will stick with what I should have ordered 25 years ago… beer. I don’t know why I decided to deviate from what I know and love but I do know that I will never do it again.

I really don’t have much more to say about that. See, I’m still waiting to celebrate my own Bat Mitzvah. I’ve been waiting a long time to become a woman. Had I been born a Jew, I could have celebrated this milestone when I turned 13. However, being a Protestant of sorts, there is no age requirement – or limit – on when one becomes an adult. So, I’m still waiting. In fact, the only “growth” I’ve experienced recently is the hair on my legs. THAT forest, my friends, is VERY mature. In fact, if you fell one of my leg hairs, the rings will dictate that they’ve been around since the birth of Jesus. I have no plans to cut down Sarah National Forest. At least not until summer. I guess I’ll use today to celebrate my leg hair since, unfortunately, I’m not a Jew.

This week is also International Friendship Week. I do have some International friends. One of my dear friends is currently sailing around the world with her husband. She’s American, but she’s currently International. That counts, right? My college roommate recently moved back to the States from Singapore so I guess I can’t count her any longer. Hmmm. Who else do I know Internationally? My friend, Wendy, is moving to Alaska. That’s pretty close to Russia, which counts according to Sarah Palin, right? Never mind. I guess I’m not as worldly as I thought. I know God, though. That’s International! Heck, that’s Intergalactical. So, I suppose I’m “other-worldly.” How very “X-Files” of me (YES, James. That was just for you. The truth is out there. Your tapes, however, are probably not.)

Actually, I just watched a movie called “Letters to God.” It’s about an eight-year-old boy who has cancer. I usually steer away from these movies because they are very rarely accurate. I like a good fantasy picture now and then but since I’ve lived this experience I can be very cynical when it comes to depicting this particular topic. “Dragonfly”, for example, was a piece of garbage. Another Lifetime movie had a little girl who needed a bone marrow transplant for her cancer therapy. Her dead-beat dad abducted her because he wanted a ransom for her AND his stem-cells that would save her life. She would occasionally cough and say “I have the cancer.” It was ridiculous. I usually get disgusted and bitch about how inaccurate the portrayals are, yet still watch them through to completion. I guess I ultimately like to complain. Anyway, this “Letters to God” movie was VERY realistic. The little boy was without hair. Check. He even lost his eyebrows. Check. His brother was mad at the boy for being sick and felt like he wasn’t as loved as his brother. Check. The mother was struggling with her relationship with God and how could He possibly be doing this to her son. Check. And all of his school friends rallied around him, yet one classmate made fun of the boy for having cancer. Check. It was extremely realistic. The family even went to Give Kids The World for a Make-a-Wish trip. We did that. It brought back a flood of memories. Anyway, the little boy maintains his faith in the Big Guy Upstairs and even writes Him letters talking about his thoughts and feelings and fears. The mailman, who is going through tremendous personal crises of his own, doesn’t know what to do with the letters and ends up reading them. He eventually becomes very close with the family and his relationship with the boy transforms his life.

I bawled my eyes out. Trust me, I wanted to be cynical. I wanted to say “that’s not how you do it.” I wanted to throw it out as an unbelievable piece of garbage that has nothing to do with the world of pediatric oncology. But it does. It was beautifully – and accurately – portrayed. I highly recommend the movie, even if you don’t believe in God.

I used to keep a journal that was dedicated to my writings to God. I recently re-read them and was fascinated to find that my struggles then are very close to my struggles now. The situations may have changed but the feelings have remained the same. I came to realize that this life is just a long dress rehearsal for a story that is never going  to be aired. I don’t know what I’m waiting for. I don’t know why I’m just not getting on with it already. The situations will change. Sometimes they will be better.
Sometimes they will be worse. And as Andy Dufresne said in the “Shawshank Redemption”, you gotta “get busy living or get busy dying.”  I’m choosing the former even though I sometimes feel like doing the latter.

Life is hard. Right now it’s really flipping hard. But I’ll think about that tomorrow. After all, (as stated by Margaret Mitchell’s character Scarlett O’Hara) tomorrow is another day. In the meantime, I’m going to go inventory my leg hair. And maybe write a letter to God.

All I knew on Wednesday was that a child had died. As I mentioned in my prior post it was clear that the staff were struggling with something tragic. The air was heavy. People were moving as if they were existing in a surreal state. I didn’t ask any questions but I heard enough throughout the day to garner an idea of what had happened.

As Ben slept through his treatment I sobbed. Even though I didn’t know this child or his family, I felt so many intense emotions. I imagine it’s like how many of you feel for Ben. A lot of you don’t really know him. But you rejoice when he does well and your heart is heavy when he struggles. Personally, I’m grateful for that. I love that Ben has so many supporters. I adore all of you who are pulling for him, praying for him, rallying around him. It’s made the journey easier.  And I’m happy to say that our journey continues. We’re still going strong and Ben has an excellent prognosis.

But not Eli. His earthly life is over.

When Ben and I got back to the Ronald, we went downstairs to the playroom to meet up with Justin. Ben immediately took off to play video games with his buddy. Justin’s mom, Lori, was hanging out with two moms I hadn’t met before. She introduced me to Sara(h) and Chris and I just kind of listened in to what they were talking about. All three of them are in different stages of a new treatment protocol for their kiddos. They’ve all done the 3F8 protocol (been there, done that) and now they are on to yet another treatment plan. I can’t imagine the exhaustion they must be feeling. But worse yet, they all knew Eli and his family. They filled me in a little bit about what had happened.

Apparently, Eli’s therapy had intensified over the last few months and they had been in NYC quite often. I can’t remember where they’re originally from – I want to say some mid-western state. Anyway, there’s a younger sibling involved, so the mom left to go back home on Monday to care for the younger child. Dad stayed here in NYC with his son.

Eli was not expected to pass away.

So, when Sara(h) found out that Eli had passed away on Wednesday morning, she bolted over to the hospital to support Eli’s dad. He met her outside of the room and explained that Eli was still in there. She hugged the dad and then said that she was going in to hug Eli, too. She told us that this was the second time she’d had this experience. Two times that she’s held a kiddo who had passed away. I could not imagine how overwhelming this would be. How tragic. How beautiful. How painful. How monumental.

Sara(h) said that Eli’s dad was well taken care of. Someone had swooped in and was there for him for the aftermath of losing his son. He had a place to go other than back to the Ronald where all the painful reminders of losing his precious son would be staring him in the face. The average person might not realize this, but when you stay at the Ronald, your kiddo is inundated with “stuff”. You get a toy when you check in. Usually, each night, someone hosts a dinner at the house and often times there are “goodies” that come with that… more toys or balloon animals or treats of some sort. You almost always come away with more than you came with. It’s hazardous to that pesky 50 pound weight limit the airlines put on luggage.

But this time, when Eli’s dad goes to the airport, he’ll just have himself to get through security. He won’t have to be stopped and asked to open every single bottle of liquid medicine required to get your kiddo through cancer therapy. He won’t be lugging the 50 extra pounds of goodies that his kiddo picked up at the Ronald. He won’t have to keep that watchful eye out for his son while in the airport. He won’t have to do all the things he might have originally found to be a nuisance but is oh-so-longing to do now that his son is gone.

And his mom. She left here on Monday most likely NOT expecting that she would never see her son alive again. To not be with her son in his final moments. To not hold him as he drew his last breaths. To not cuddle him and sing to him and just simply be with him as she watched the life leave his body. I just cannot stand it. It makes no sense. This has to stop. I’m furious. Heartbroken. Crying. Exhausted.

But we’ll keep going. Despite the loss and the heartache and the pain and misery, we just keep going. Because there are silver linings. There are stories of survival. There are beautiful moments interspersed between the ridiculous. We find ways to cope with the tragedies and push the rest of the bullshit away.

Life is so short, friends. Unfortunately, we’re reminded of this simple fact all the time because cancer keeps death so close in this world of pediatric cancer. But every single one of us is in the same boat. Life is precious. And we need to make the most out of it. If you can’t stop wasting it and start living it, you’re only cheating yourself.

What a fun holiday today is because I LOVE words!  Today is Peter Mark Roget’s birthday. He was the author of Roget’s Thesaurus. He started writing his collection of synonyms in 1840 and finally published his work in 1852. Since then, it has never been out of print! So… I don’t feel so bad not having finished my assortment of short stories. If it took Dr. Roget 12 years to amass his synonyms, I can take a bit of time for my compilation. I need to get going though. My 12 years are nearly up.

I’m currently at the hospital in NYC with Benjamin. We’re doing day three of round 10 of antibody therapy. Monday stunk pain-wise. Tuesday was very “hive-y”. Today is a mixture of pain and hives – neither of which have been too terrible to handle. It’s nearly four pm (EST) and he’s still sleeping. I’m hoping we get out of here in the next hour or so… he’s got friends to play with back at the Ronald (namely his good friend, Justin).

I’m looking forward to a change of scenery, this little room gets really old after sitting here for hours on end. I did try to pass the time by taping a couple of videos for my new blog project. I taped them on my iPad and uploaded them to youtube but am having a hard time connecting them here. I know I can’t do it from my iPad so I’m going to try from my laptop. Wish me luck.

Today’s vid-log (I don’ t know what you really call them, weblog? vlog? webbyvideo? wideo? I dunno.) was actually hard to do. I kept crying during initial takes because I found out that a kiddo died here this morning. I don’t know who the kiddo was – I didn’t see them – but the air upon our arrival to the hospital this morning was very heavy. The staff was clearly struggling with something. I later learned that a kiddo passed away (the walls are thin here… it’s easy to hear everything, especially when our room is directly in front of the nurse’s station). And it broke my heart. Ben was already sedated and treatment was underway so I broke down and cried my eyes out. I cried for the child who lost their life. I cried for the family that lost their pookie-pie. I cried for the wonderful fact that my son is doing well. It’s so difficult balancing between the dichotomy of heartbreak and elation over the same damn disease. I hate cancer. In fact, I have a big, white butt that it can kiss. After all, I’ve never heard of butt cancer. Colon cancer, sure. But “butt cancer?”. No. It can get as close to my butt as it wants. Kiss away, cancer. You deserve a big “ass-sandwich.”

So, if I ever get my vid-log/wideo/whatever-it-is, to load you’ll see some tears at the end. I’ve decided that I don’t like the facial expressions I make when I cry so I’m just not going to cry anymore. Ever. I’m done. Yeah, right. I’ll probably cry starting in five, four, three, two….

And there I go.

Love to all of you. Take a moment to spread some love, especially to someone who might feel really unloved right now.

Actually, I’m just kidding. I don’t want to talk about that either. The alternate holiday for today is BEAN DAY! And you KNOW I want to talk about that. My Bean. Bean is my nickname for Benjamin. I don’t really know where it came from but one day I called him Bean and it stuck. He went through a small phase of rejecting it but now he fully embraces it. For instance, he’ll state something like “Let the Bean show you how it’s done.” He’s just so stinking cute.

So, hackers did a number on my site recently. Some revamping has had to occur, which is actually a good thing because I haven’t made any changes since starting this blog in 2009. One of the things that I’ve done is write an “About Ben” page that people can click on to learn more about Ben instead of having to read every single entry of my blog. Now, I think it’s a good idea for people to read every single entry, but it’s not fair to newcomers to have to weed through the site to garner information about my fine young son and his battle with cancer. So, the “About Ben” page was born. I sat down and wrote it yesterday. It was exhausting. In thinking back over the chain of events of the past eight years I get a bit misty. Oh, what am I saying? Sometimes I just flat out break down. It’s heartbreaking to relive all that he’s been through. The beautiful thing, though, is that he’s still alive. And he’s doing well. I cannot complain about that.

One of the other things that I want to begin is a video component to my blog. I’m working on that today and hope to have something to post soon. It will be a short entry – about 1 or 2 minutes in length – but I thought it would be fun to mix it up a bit. I love to write but something else that I love to do that I never really realized until recently is do some public speaking. I’m not just a writer. I’m a storyteller. And while I believe I’m a good enough writer to convey emotion and all that jazz in my written posts sometimes it just has to be told. 

So, here’s to a new phase. A new year. A healthier web site. New challenges. Being stronger than we look.

And that’s that. Think about the Bean today. Right now he’s finishing Math at school – his least favorite subject – but I know that if he can get through cancer, he can certainly get through long division.