Pop

My sister and I received a touching email from our dad this morning. He reminded us that today marked the twenty-sixth anniversary of when he married my mother. He was able to condense his intense love for her, her difficult nature, and his gratefulness to still be a part of our lives in one beautifully succinct message.

I teared up a bit remembering how happy she was to marry Rob that August day in 1987.  She had waited a long time to find someone who treated her with respect – after wading through three prior marriages to men who just didn’t realize the precious package they had in my mother. She was independent. She was strong. She was difficult. She was more than a handful. But she had to be. She loved intensely but systematically chose the wrong men. She had been a victim of long-term abuse during her adolescence and, of course, it spilled over into her adult life and how she approached relationships. When she met Rob, I know it all changed for her. And, despite her difficult nature, Rob was a worthy opponent. He loved her with the same intensity.

I had just turned 19 when they married but I had considered Rob to be an important part of my life since I was 12. He was in his early 30’s when he met my mom. He’d never been married nor did he have any children. But he did more with me in the years between meeting me and marrying my mom than my biological father ever did my entire life.

Rob encouraged me. He bought me books. He took me flying in his biplane. He taught me how to row. He made sure I got to go to France with my classmates when I was 15. He got my mom a car so she could hand hers down to me. He gave me my first camera, which completely changed my life. And, he encouraged me to go to college. I didn’t want to. If it weren’t for him, I probably wouldn’t have gone.

One memory that always sticks with me is the time that I was invited to a high school dance. I’d never really been out with a boy before, let alone get dressed up or get picked up in a car. I was scared to death. I didn’t really know this boy very well and being as super socially awkward as I was, I thought I was going to hyperventilate and die before I could actually get picked up for the dance. I fussed with my hair for hours and wore one of my mom’s dressy suits. As I exited the bathroom from my primping, Rob was the first to see me. He gasped and said, “Oh. You’re beautiful.” And it was sincere. And foreign. I’d not heard that before from someone who wasn’t biologically obligated to say so. I blushed intensely and tried to stuff down my initial instinct to deny what he’d said. I deserved this. I was pretty. And it felt good to hear it.

So, when Rob married my mom in 1987, it was a happy day for me, too. I might have been an adult, but I finally got my dad. Interestingly enough, the night before my parents got married, my college BFF and I went to Ohio State’s campus to bar hop (it was legal for me to drink 3.2 beer in 1987 even though I was only 19… that law changed to 21 less than a month after my 19th birthday.) Anyway, I parked at the Wendy’s on High Street instead of searching for street side parking on campus. After a late night of whooping it up, we returned to Wendy’s to find the car missing. I’d been towed. Apparently, lots of people used Wendy’s parking lot for purposes other than to pick up a “Single cheese with everything.”  They didn’t put up with loiterers. So, I was forced to contact my soon-to-be step dad (who lived just a few miles away) to come rescue us and ante up the cash to get my car out of jail. Looking back on it all, it would have served him well to pay more attention to this rescue, as he’s had to rescue me many times over the course of the last 26 years (Thanks, Pop.)

He applauded my graduation from Ohio University. He embraced me and cried when I was diagnosed with cancer. He encouraged my move to Colorado. He supported my desire to take his last name as my own. He gave me away at my first wedding. He was shocked when I announced my pregnancy (I never thought that I’d have children, so it was a surprise for everyone.) And he  was totally in love with the neat little man we all know as Benjamin.

And as my mom slipped into dementia and suffered multiple health issues, he continued his dedication. It was hard. I fully recognize that. Taking on the three of us as your family has had to be hard, Pop. Mom was a pain in the ass. I was (and continue to be) a pain in the ass. Fortunately, Cassi is fairly self-sufficient, so she’s like the prize in the cracker jack box. You gotta get through the sticky, gooey mess to get to the good stuff. 😉

He was distraught when mom died. We held her hands as she passed away but I can’t even begin to imagine his emotions as her combative presence silently exited our realm. It was peaceful and heartbreaking all at the same time. Unfortunately, my world was ever-so-complicated with Ben’s relapse and travel to NYC for treatment. I had nothing to offer from a support standpoint.

And, for a brief moment, I thought he might be glad to move on from us – the women who had caused him great distress but loved him intensely. I hope you know that, Pop. Mom loved you an immeasurable amount. And so do I. Without you, I’d be much less.

I love where you are at this point in your life, Pop. I love that you’ve found love and married a wonderful woman to spend the rest of your life with. I love how much you care for Ben and Madeline. And I love how much you love me.

I love you so much.

 

 

 

fourteener

Colorado has over 50 peaks that are over 14,000 feet in elevation – otherwise known as “fourteeners.” I’ve been at this altitude many times via car or train or some other mode of non-self-motivated transportation, but I’d never climbed one on my own. When I had a day to myself last weekend I thought I’d give it a try.

Mt. Bierstadt is located in Clear Creek county, which is not too far from where I live. And, an extra added bonus: Mt. Bierstadt is considered to be the easiest 14-er to climb in the entire state. So, off I went. I left fairly early because it was supposed to storm in the afternoon and to get stuck above tree line with nowhere to hide from lightning didn’t sound like fun to me. When I arrived at the trailhead, it appeared that many others had the same idea. It was packed. Hiking is usually a quiet endeavor for me. When I used to hike all the time in Summit County, I’d go with a friend in case one of us got hurt or something of the sort, but we were usually pretty quiet. And there weren’t gazillions of people doing the same thing on the exact same trail. I sucked it up, though, and figured that since I was hiking alone (something I generally don’t do) then there’d be gazillions of people to help me if I fell and broke my leg or something.

I haven’t truly hiked in a long time. I’m no longer in my prime physical state but I’m not too bad off. And, if it got to be too much, I knew how to turn 180 degrees and head back down. The first section was really peaceful despite the crowds. As the elevation began to increase, I focused on regulating my breathing and listened to conversations other hikers were having as I passed them. Most people, surprisingly enough, were talking about their jobs. I guess that is a major focus of people’s lives – what they do for a living – and it’s hard to not have that define who you are. It kinda stressed me out to listen to everything these people had on their plate… managing multiple people, in charge of a five-state region, heading up a major marketing campaign, merging with other companies, competing for a promotion, hanging on through another layoff… I guess I’m ultimately glad I don’t have to mess with any of that nonsense at this point of my life – although I would welcome the steady paycheck and security of health insurance.

But what I really enjoyed more than listening to other’s conversations was watching the hikers. I was amused by the young couple who were clearly just getting to know each other. Flirting while hiking can be tough… it’s hard enough to breathe at higher elevations let alone try to look your best and toss compliments back and forth. Ah, young love. But choosing a super-strenuous activity is as bad of a choice as eating corn-on-the-cob on a first date. That’s just my opinion.

My next people-watching gig happened to be a young family of five. The father was dressed head to toe in very expensive gear and was so full of adrenaline that he could barely keep still. Meanwhile, his tired wife was herding three children – my estimate is that they were ages 5-9 – up a pretty steep incline. The dad was getting frustrated with the multiple stops. The kids weren’t really complaining about the hike, but they were hungry or too hot or too cold or had something in their shoe – any number of complaints. The mom was very empathetic while the dad stood with his engine idling at too high a speed, his irritation palpable. “What a turd,” I judged as I puffed past them. Maybe he’ll explode? Those images kept me entertained through the next strenuous stretch of trail. I don’t know their story and I shouldn’t judge at all, but out of all the people I came across that day, he’d be my last choice of someone to share a beer with.

I relayed with a group of three for a while. They’d pass me, then I’d pass them. That went on for about an hour. And as we got closer to the top and the grassy landscape turned to treacherous rocks, the weather turned colder. And colder. My layers proved to be insufficient and my hands were completely frozen. I didn’t bring gloves. It was about 1 PM and the ice fields on the mountain had just turned to pools of sludgy water. I stood for a while, admiring the view and contemplating my next move. I could hike another hour to stand on the summit or I could turn around and head back down. I chose the latter. I was slightly disappointed with my decision because I was so close. But I knew it was just going to get colder and the whole point was to ENJOY my day. I wasn’t going to enjoy it any less if I didn’t make it to the top. I could see for miles from where I was. I found I was sincerely appreciating my life despite the obstacles. I was in a good place. I picked up two pretty rocks, one for Ben and one for Madeline, and headed back down.

I forgot that the hike down is often more difficult than going up. While your lungs might not be screaming for air, your knees and feet are taking a lot of punishment, especially over the rocks. Slowing down gave me time to listen in to more conversations and get out of my head own head for a while. Once the path leveled out, I found a good cadence and my breathing pattern became hypnotic. I prayed for a while; about a friend, about my son’s health, about my daughter’s self-esteem – until an older gentleman came up beside me and asked, “What do you think?” I said, “I think it’s a beautiful day.” He agreed. We kept our eyes downcast on the trail as our strides easily conformed to one another. He told me he was there hiking with his grandchildren. I told him I was on my own. He asked a few questions and I answered. Then he unloaded on me that his brand new granddaughter was fighting for her life. She was born very premature. I listened as he explained the pain of watching his daughter struggling with the unknown. I slowed down and said, “Thank you for telling me that,” because at that moment I realized that Ben’s illness wasn’t just affecting me. Logically I know that. Emotionally, though, I am Ben’s mother and outside of Ben struggling through the horrible chemo, surgeries, radiation, etc, I believed that I was fighting this alone. I’m probably not going to explain it correctly, but I just didn’t see the extent of how Ben’s illness affected my parents. Or my family. Or my friends. I only saw that it affected my son. And me.

I briefly explained to my new friend about Ben’s fight over the last nine-and-a-half years. He hugged me as we walked, nearly taking us both down as we awkwardly stumbled into one another. He said, “God has a plan.” And while that sort of statement generally sends me through the roof with irritation, I continued to listen. Then he said, “God loves you, you know.” And I told him that I didn’t know, but for whatever reason, I believed what this nice man was telling me. He hugged me again and said “I need to catch up with my grandchildren. Plus, I’m getting ready to cry.” And off he went, leaving me a little teary eyed in the process. And with that, I understood that I had turned around at exactly the right time.

I used to feel God’s love all the time. I used to believe with all my heart. Until this happened and that happened and none of it made any sense any longer.

I don’t know where I am on this journey to the summit of my life. Am I almost there? Is it too cold to the point where turning around is the best option? What other heart breaks and tragedies are going to set me back another 1,000 feet? I have no way of knowing. But it’s the beautiful surprises of a kind gentleman wrapping his arm around me and explaining that I’m loved no matter what. Or that Ben passed his counts and can start on this next study. Or that Madeline sang her heart out in front of a crowd of adults during her play, breaking through the layer of scared that was obviously surrounding her. The small victories keep me going.

I’m chipping away at my layer of scared, too. I’ve cleared a tiny spot on the windshield and now I’m just waiting for the warmth to melt the rest of the obstruction. It might take a while but, if nothing else, I know I’m patient. It will come.

Soon I will know. Soon I’ll be able to see more clearly. I’ll finally “get” what this journey to the top of my 14-er has been all about.

And what a view it will be.

crybaby

We were under the weather yesterday. Ben was struggling with a cough, Madeline was sniffling, my throat felt scratchy… so we just stayed in bed a good chunk of the day. I was disappointed because I was hoping to go do something fun… summer is quickly running out. There have been a few fun moments here and there but there have been no vacations, no events – even his birthday was shot. It’s been a cruel summer.

Many folks we come in contact with ask Ben if he’s had a good summer off from school. My brow furrows. The corners of my mouth drop into a frown and I give them a look that begs the question, “Are you freaking kidding me?” Meanwhile, Ben says, “Yeah, sure.” Because he is probably thinking about video games and their rhetorical question doesn’t have the same meaning to him that it does to me. I want Ben to shake with excitement as he recalls all the wonderful things he experienced this summer. I want him to have had so much fun that he simply cannot remember all the fun stuff he did. But since none of that is true… well, none of that is true. His summer was spent throwing up and losing his hair and tethered to a bed unable to go to the bathroom without a big set change. Honestly, potty time is a big production – people backstage moving everything around so he could perform the next act in the play… which is simply a moment to himself so he could use the toilet. NOT what a 12-year-old boy should be doing. Then again, he’s not a typical 12-year-old. He’s Ben. And what he is is wonderful. I wish I could face each day with the grace he exudes. Instead, I am a big freaking crybaby.

“Not fair,” I cry, as I make breakfast that he probably won’t eat. “Not fair,” I cry, as I draw up a needle full of medication that is going to burn as it sinks below the surface of his skin… which I have to administer, by the way. “Not fair,” I cry, as I sign the consent form allowing a surgeon to cut into him, to give him toxic medications, to agree to a new rash of terrible side effects. “Not fair,” I cry, as I ask him to participate in signing paperwork that guarantees he will never produce his own children due to the harshness of the therapy. Oh, okay, he lost this skill back when he went through transplant in 2004, but he doesn’t know that. He doesn’t know that he cannot produce biological children. I know there’s adoption and all that jazz, and if I believe all the statistical evidence regarding long-term survival of pediatric cancer patients, then I fully understand that he will never move out of my basement or have a real job, let alone produce any grandchildren for me. Although, daytime television warns us all that just because your child lives in the basement and is unemployed, it doesn’t mean that he’s not out there fathering children. But my Bean will not be one of those. He simply won’t be able to.

So, I cry, “Not fair.” But life isn’t fair, is it? You’d think I’d have a better handle on that by now.

So, after resting nearly all day, I took Ben and Mad to Outback to celebrate the fact that Ben’s bone marrow is all clear. Ben loves Outback. He ordered a gigantic steak that he barely made a dent in. That’s how Ben rolls 😉 Anyway, as we were leaving, Ben held the door open for an elderly couple. They were all smiles as they admired this polite little man without hair. They weren’t sure what else to say but I could sense they wanted to remark about the obvious. They refrained though. The woman awkwardly continued to make conversation, which manifested in her telling me I have really nice legs. “Oh, they’re so beautiful,” she said. I ate it up, I’m an attention hog when it comes right down to it and I have always felt that I have fat knees. So, I enjoyed her awkward attempt to not talk about Ben’s cancer.

My glee was short lived, however. As we drove away from Outback, I passed what appeared to be an older lady – I’d say mid-to-late 50’s, wearing a visor. It was clearly part of a fast food uniform. I got sad for a minute that this woman was working fast food at her advanced age. Not knowing anything about this woman, I felt bad for her, which is not fair. Maybe she likes working fast food? Maybe there’s a backstory there that I know nothing about. But what I do know is that I worked fast food when I was 16. I hated it so much that it only lasted six months. It’s a thankless job, pays nothing, and the management usually stinks. If they have any issue with you, you end up on lobby detail, which includes cleaning the restrooms. That job is one I’m sure is on the job board in Hell. I imagine Hell has a board full of job postings, right? Bathroom detail must be high on that list. Anyway, as I drove past her I thought to myself “there’s my future. I’m going to be a 61-year-old woman working in a fast food restaurant.” Madeline asked me to restate what I’d just said, which alerted me to the fact that I’d said it out loud. “Oh, nothing, honey,” I reassured her. “I’m just saying that I’m probably going to work at Hooter’s when I’m 61.” To which, my brilliant daughter retorted, “But they’re going to have to rename “Hooter’s” something like “Floppy’s” if old people are going to be working there.”

Pause two beats. Then let the crying with laughter begin. Of course my brilliant Madeline knows how to bring levity to the situation. That’s one skill where we excel. Too bad it doesn’t pay.

As long as I can intersperse my bouts of being a crybaby with joyful moments of crying with laughter, I guess we’ll all survive this mess in the long run.

Birthdays

Happy Birthday, Colorado. You’re 137 years old today. Of course, you’ve always been here land wise – so you’re really much older – but just because you drew some new boundaries you get to knock a few years off. I’m going to do that, too, when I finally get my face lift.

So. What’s new? Well, summer is almost over. Our “summer of fun” list sits neglected, overtaken by stupid cancer nonsense. The good news is that Ben is currently showing no evidence of disease after his biopsy. The bad news is that we have to find a maintenance regimen for him to be on – probably for the rest of his life. I can’t seem to get used to that. The threat of a monster attacking is much different than having to learn to live with the monster systematically attacking. My yearn for normalcy has been relegated to living in a cage awaiting appeal. It might never get out. It’s not that I’m being negative, I’m being realistic. It’s a whole new world to get used to. Ben will most likely always be fighting cancer. And when he’s not fighting cancer he’ll be fighting the side effects. And, on top of that, he’ll have to navigate the usual weirdness that comes along with adolescence. Some days, my heart simply can’t take it.

The moment he was placed in my arms my whole world changed. So many mothers feel that deep inner shift when they meet their child face-to-face, but for me, I never cared much for children, so my inner shift was quite profound. It was a shock to my entire being. I felt a love that I had never experienced before. I never wanted to be away from him. I hated going back to work because I knew I was missing something wonderful. He became my everything. We had so much fun together. And when he was diagnosed I just didn’t understand. This beautiful child. This wonderful boy. My heart. And we were living under the threat that he’d be taken away at any moment during that first year of therapy. When he got better and stayed healthy for four whole years, I thought he’d beaten it.

I thought for a long time that he’d get better and better and have a pretty strong chance at being a normal kid. But each time this monster strikes his body gets weaker. It gets harder. Not just physically, but emotionally, too. And while I don’t ever want my son to suffer, I just can’t bear the thought of losing him. None of this is okay. None of it.

So, what’s my option? Suck it up, I guess. Continue to be his caregiver. Stroke his bald head as he worries about a stupid needle poke. Hold the yellow puke bucket as he wretches. Tell him that I’ll never leave his side during this battle. I’m his sidekick. I’ll even wear a stupid costume if it would help anything. But the days keep going. I still have to wake up. And do the normal stuff. Even thought I’d rather not.

How do you train your heart to take repeated beatings? When will I ever get to the point where I’m not worried about losing him? My heart silently screams nearly all day long. I rock it and pet it and try to get it to quiet down, but there just doesn’t seem to be much relief. I’m hoping that this next study is the answer for Ben. People get all caught up in what worked (or didn’t work) for their kid versus what worked (or didn’t work) for mine. The reality of it all is that it’s a total crapshoot. Nobody knows. We’ve been able to slow it down here and there. We’ve even been able to beat it twice. But we just don’t know. We won’t know if he gets that next birthday until we reach it.

For now, I guess we just have to let it ruin a little bit more until we get it under control again. But it’s something that doesn’t want to be controlled. And I’m afraid that it will show us – again – that it’s stronger than we want it to be and we simply don’t have the tools to fight it.

How unfair is that?