supporting role

My daughter, Madeline, is an amazing child. She was born just six weeks after Ben was diagnosed with neuroblastoma and has spent every day of her life since then living in the shadow of her brother’s illness. NOT in the shadow of her brother, mind you, but in the shadow of his illness.

Even her birth was overshadowed. No big baby shower. No swarms of people coming to ooh and ah over her because we basically went from the hospital in which she was born to the hospital where her brother was being treated. The night nurses at Children’s were a big part of her first fan club. They carried her around on their rounds, sat with her at the nurse’s station as she smiled her brilliant, toothless smile at all the suffering children on the unit – she was a little “happy magnet.” You couldn’t help but smile when you saw this beautiful, sweet baby. It’s funny that I was so worried about bringing a new baby into our crazy environment when it was she who single-handedly saved our weary souls.

Maddy was a perfect baby. She was rarely fussy. Other than starting off as severely jaundiced, she didn’t have any medical issues – not even a cold – until after she was a year old. And her brother adored her. That was the best part of all. Maddy was a positive focus that Ben needed. Even at his worst – during transplant – she brought a sense of calm and much needed normalcy to our weird little world.

She knew exactly what we all needed.

As she grew, she had to deal with her major milestones being dominated by her brother’s medical needs. Her first steps were taken as I was rushing around the house trying to gather up all we needed to take a feverish Ben to the hospital. Her first day of Kindergarten was spoiled by Ben’s first relapse. Mad’s Kindie teacher was nice enough to make all the kids “re-pose” for that first day of school photo that all the other kids had taken the week prior, just so I could document her first day of school. She’s missed out on countless sleepovers due to potential germs or dashed plans thanks to a random fever.

And she takes that backseat every single time.

But I don’t feel that this has all been a total loss for my darling daughter, for she knows a compassion that many will never understand. Her heart swells when she hears of anyone ailing. And, as for her friends, she tends to be the voice of reason in the midst of adolescent angst that consumes so many young girls at this age. Man. Does the drama start earlier these days or what? I don’t remember so much drama when I was 10.

Regardless, I know that Ben’s medical woes have made her the person she is. And I absolutely adore who she has become. I was trying to remember what I was like at the beginning of Ben’s journey. I was kind of an assh*le. Self-centered. Entitled. Expected my world to be perfect because I’d worked hard on career. But these wonderful little things called children kinda screwed all that up for me – and I’m so thankful. My reason-to-be doesn’t lie in a career. It doesn’t lie in where I live or what I drive or how awesome everything is. I’m still kind of a self-centered turd at times, but ultimately, when I see my daughter wrap her arms around her brother in hopes of bringing him comfort, I know I’m raising hope.

And that’s what I was meant to do.

The last time Ben relapsed, he wanted to be the one to tell his sister. We had just left the hospital and we were picking her up from an outing with friends. She smiled as she saw her brother cross the room to get to her. I watched from afar as Ben’s lips moved, telling her what he knew, and watched the smile disappear from her lips as she listened. She glanced at me. As our eyes connected, I saw the question of “what are we going to do?” and all I could give her was a teary look. I hope I conveyed some strength in our connection but I’m sure she saw my expression of fear. As she broke her gaze with me, she enveloped her brother in her arms and simply held him, rocking him as her face leaned down to touch the top of his head.

What I saw that day was sheer bravery. From both of them. How brave for Ben to share the bad news with Mad, and how brave for Mad to push away her fear and simply give her brother what he needed. No. I’m not raising little assh*les at all.

All this time, she’s been 20 feet from stardom. All the attention that goes to her brother might be irritating at times, but she knows that her supporting role is the role of a lifetime. And it’s been a star-making role for her. She doesn’t get the credit she deserves all the time, but she knows what’s important.

Before you become insanely jealous that I have absolutely perfect children, don’t fret. They do fight from time to time. But at the end of it, when nobody’s looking, I see one of them wrap their hand around the other’s and hold on for dear life. They’re in this together. Undoubtedly loving each other with all they have. Taking a supportive role to each others’ stardom, knowing that being together makes them stronger. Better. Unconquerable.

Against all odds.

 

Dying with dignity

I think we’re all a bunch of friggin’ morons. Me included. Why? Because we think we have the right to infringe on everyone else’s life, while living the way we want and getting upset when anyone else has an opinion about how we’re living. Hypocrites. Every last one of us. The Internet and social media has taken this to a whole new level and I’m frustrated to no end. We’re all sitting on our high horse, judging everyone else for simply living their lives. Or choosing to end it. It’s not up to me, or you, or anyone else. So, shut up.

I just read an article kinda slamming Brittany Maynard for her choice to end her life. Apparently, the author of the article states that her mother has the same disease as Brittany, but her mother has chosen to live her life – as is – until cancer completely takes over. The author is mad that people are stating that Ms. Maynard died with dignity… so what does that say about her mother? That she’s a coward for fighting to the end of her life? Well, I for one don’t think that at all. Ms. Maynard made her choice based on her options and this woman’s mother is making her choice based on her options. Same disease? Sure. But not always the same case.

My son has neuroblastoma. If you’ve been reading my blog for any length of time, you know this. This particular cancer is nasty. It’s horrible. It’s debilitating. There’s NO cure. And, so far, my son has beat the odds. Almost every single friend we’ve known with Neuroblastoma (who has relapsed) has passed away. We face this heartbreaking fact every single day. But Ben is still in a good place health wise. He’s exhausted, for sure, but willing to continue the fight. For now.

There might come a time when he chooses to end treatment. His quality of life might plummet to the point of making it unbearable to face another day. I think about this more than I care to admit. He’s getting old enough to make that choice for himself and if he ever does make it, I know it will be something he’s debated through to exhaustion.

Will I be okay with that choice? No. I never want to lose him.

Am I okay with the fact that cancer has beat him up for nearly 11 of his 13 years? No.

Do I want the best for my son? Absolutely. Might that include leaving this disease behind and ending his suffering? Yes.

I’ve seen my son at his worst. During his bone marrow transplant he nearly died three times during a 31 day period. I begged for his life to be spared. During a routine scan, the doctor nearly killed him by overmedicating him. I begged for his life to be spared. During his 3F8 therapy – two long years of horrendous pain – he passed out every day – either from pain medication or the pain itself. I listened to him scream as the therapy attacked his nerves. He once told me that he’d rather die than face another day of that therapy. I begged for his life to be spared.

So far, it has been. And people have told me to “keep fighting” while others have asked “why continue?” And guess what? It’s not up to you. Now that Ben is getting older he has more of a say in what happens to him treatment wise. I want to keep my son forever. But he might get to the point of being so tired that he’ll make the decision to stop. And my job is to support him. Love him. Care for him. Forever. No matter what.

Would I try to talk him out of stopping treatment? Probably. The fear of losing him is something I live with every day. But if it gets to the point where he’s having seizures or I can see the tumors bulging from his precious body or he’s in immense pain, I think I would have the courage to let him go if that’s what he wanted. It will never be what I want, but it might be what’s best.

Many will think that this would be committing suicide. If there’s no treatment options left, then what’s supposed to happen? I have my own theories on this… and I’ve debated this to no end with people of faith. But those same people of faith are not in our position. Even others with Stage IV Neuroblastoma aren’t in our position. We are all very different. If I based our situation on the outcome of everyone else with Neuroblastoma that we’ve known, I would have thrown in the towel long ago.

But today, right now, we haven’t given up. We’re still fighting. And guess what? We’re okay with that. And that’s all that matters. I can’t worry about what you’re doing with your life and how it simply doesn’t affect me. And while I appreciate all the love and support we receive – because we can’t fight this alone – I would hope that you would save the judgment for how you’re living your own life instead of passing judgment on ours.

I promise that I will offer you the same respect.

Should I write while taking dilaudid?

I hurt my back this past Saturday. I didn’t fall, I didn’t pick anything up that was too heavy, I was simply walking to my car when a searing hot pain engulfed my lower back. I ignored it as best as I could because I had plans to see my favorite author, David Sedaris, in Boulder with my friend, Nora. No way, no how was I going to miss that. I took as many OTC drugs as I could find in hopes it was just a passing nuisance and drove myself to Boulder.

Watching this amazing man on stage reading his work reminded me that this is what I want to do with my life. I want to write stories and read them aloud. I want to meet people from all over the world. I want to make them laugh. Make them think. Bring them joy. One of the reasons I love David Sedaris so much is that he reminds me a bit of myself. Wandering from job to job, never finding anything that sticks but taking amazing stories away from each experience. If he wanted to, he could make his readers fall in love with a rock. My skills might not make you fall in love with a rock, but I think I could get you to like it a whole real lot. Anyway, I love his style of writing. I love his ability to make people laugh. And I love his self-deprecating sense of humor.

I laughed so hard during his show that the threat of wetting myself occurred more than once. Sure, my back hurt, but the laughter made it bearable. And after the show, Nora and I waited in a long line of admirers, book in hand, anxious for an autograph. Along with some staff from KUNC public radio, there were also people encouraging attendees to sign up to “Be The Match,” which is a National registry for bone marrow donors. Now, this cause is near and dear to my heart due to Ben’s journey but I am not allowed to join because I am a cancer survivor myself. My stem cells are no good. However, my friend Nora completed the form, which took us to the front of the line so David Sedaris himself could swab the inside of her mouth before signing our books. We weren’t allowed to take pictures (DARN!) but I watched in awe as this literary genius swabbed the mouth of my friend, slightly envious that I wouldn’t get the same intimate attention. Stupid cancer, yet another thing you’ve taken from me! I had taken two books because I couldn’t decide if I wanted him to sign his latest work or if I wanted him to sign my beat up copy of “Me Talk Pretty One Day.” This is my go-to book… the one I read whenever my depression dictates that I can’t take another step. I’ve read it countless times and it still makes me laugh to the point of tears. If I’m ever faced with a fire gutting my home, after ensuring that my kids and dogs are safe, I will reach for a couple of photo albums, mom’s jewelry, and my beat up copy of “Me Talk Pretty One Day,” which now bears the signature of the man who can make me laugh so hard that I cry.

I was star-struck. I couldn’t say anything to him. He asked how we knew each other and Nora explained our connection, which truly is an interesting story, and that between us we have six children with red hair. He then asked if they bore names like Fergus. I persisted in my awe-struck state while Nora continued to chat. I lowered to my knees so I could hear him better and nearly burst into tears because my back hurt so bad. Don’t cry in front of David. Don’t cry in front of David. Don’t cry in front of David, I kept repeating over and over to myself, so I missed anything else he said until he noticed that I was carrying a second book. “Do you want me to sign that one, too?” I could hear the angels singing and the sky opening as I slid my second book across the table and exclaimed, “Oh my stars! I would LOVE that.”

Really? Oh my stars? My eyes closed before rolling back to look at my brain. Oh my stars. Seriously? This is what I said to David Sedaris? I half expected him to punch me in the throat for being such a dork. He drew a picture of an owl and signed his name, probably under the impression that drawing a picture was better than leaving an inscription because it was likely that I didn’t know how to read. He was clearly ready to meet the signing needs of the next 300 people in line behind me. And that was it.

Nora and I parted ways and I drove back to Aurora, pretending to be on a talk show – Ellen was tonight’s host – and discussing the time I embarrassed myself in front of my literary hero, David Sedaris. The embarrassment I felt definitely masked any physical pain I was having.

I woke up the next morning recounting the “Oh my stars” incident and attempted to roll out of bed. The searing hot pain was back. I tried some stretching which resulted in many tears. I drove myself to the emergency room and allowed them to ply me with dilaudid and muscle relaxers. I told them I didn’t have a ride and they said that I could hang out for as long as I wanted. I fell asleep. Then the doctor woke me up and said that I needed to leave because they needed the room. I exclaimed something about having rights and some other groggy nonsense, but to no avail. I got a ride from Matt and spent the rest of the day in Fuzzy Brain Land.

I’m still kinda living in Fuzzy Brain Land, interspersed with brief reminders that I said “Oh my stars” in front of David Sedaris. I’m sure I didn’t leave a lasting impression on him, but if I did, I sure hope he writes a story about it.