Stronger Than I Look

Happy New Year!

I realize that I’m four days late in saying so, but here it is, already four days into the new year and I’m just now getting around to it. It’s 12:45 pm on a lovely Sunday and I’ve only taken – according to my FitBit – 202 steps so far. That means that I’ve gotten out of bed long enough to go to the restroom and allow my dogs to do the same. That’s it. I’m sure I’ll hit my goal of 10,000 steps by the end of today. Or maybe I won’t. Who knows? I like to keep things in a shroud of mystery.

Writing has been difficult for me lately. Not because I didn’t need a cathartic outlet – you know I always do – but I just didn’t feel like it. I’ve slipped into that weird crack of Ben being healthy enough to not need major care. There will always be clinic appointments and medications and scans and the search for the all-elusive cure, but right now we’re definitely experiencing a “light schedule” of needing anything. It’s weird.

Please don’t get me wrong, I’m totally grateful. Clinic once a week instead of three? Whoa! Think of how much I’ll save in gas money! Meds reduced significantly? Yay! Ben doesn’t have to have a pillbox tantamount to that of an elderly schizophrenic with high blood pressure and diabetes. Sometimes I need the rigor of a demanding schedule. It keeps me focused on DOING instead of FEELING. I don’t have as much time to think or feel when we’re constantly on the go. Then, when I’m told we can scale it back a bit, my brain turns on and I simply flip out. I have all the time to think about all the things I’ve been putting off. What I’ve been putting off for almost two years. The flood overwhelms me and I have to make adjustments on how to deal with that.

But it’s nothing new. We’ve hit these dry spots several times throughout the course of his therapy. Rarely does it last long enough to become comfortable with it before we’re thrust into where our comfort level unfortunately lies: being in treatment. I’m sure when the trips to NYC start up in a month or so, I’ll easily transition back into therapy mode. And part of me will be grateful to having a schedule again – a life where somebody else dictates how we spend our time.

Really? Is that my comfort level? That blows, doesn’t it? I’ve been so afraid to feel for so long that I’ve even drummed the FUN feelings from my soul. Boo.

Since I’ve realized this, I’ve been desperately trying to take those small moments of dryness and making the absolute best of it. All that matters to me is finding the JOY whenever possible. I recently downloaded an app called Roadside America and it lists unusual attractions all over the US. I only purchased the Southwest piece of the map because that’s where we live, but apparently there are little nuggets of wonderfully outlandish things all over the U.S. Yes, it’s a little Clark Griswold-ish, but this is a perfect app for quirky kids – like myself – who like the ‘off the beaten path’ way of life.

Yesterday, I chose Manitou Springs – a city we’ve been to a million times – and found loads of unique things to do. We saw the World’s Largest Beetle AND School desk, we toured Miramont Castle, drove through Garden of the Gods (been there, done that, but still love it every time!), visited a true penny arcade where pinball only cost a quarter, and ate dinner in a revamped military airplane where you could act as pilots and push ANY BUTTON YOU WANTED! No buttons were off limits! We made a full day of it and there was still more quirky things we didn’t see.

Out of all the adventures I’ve taken my children on over the years, this was one of their favorite days. Ben told me on the way home that it was “EPIC.” I’m happy to have had a part in giving my children the delicious gift of being unconventional. 🙂

So. What are my New Year Resolutions? I guess I don’t have many. Sure, I’d like to exercise more, I’d like to manage my free time better, I’d like to widen my circle of weirdo friends, I’d like to finally get that novel published…. But I’m going to stick with the pursuit of finding as much joy as possible and I’ll add in this: Be BADASS. I can be badass anytime, anywhere. It doesn’t require a schedule. It means standing up when something doesn’t feel right. Or putting a jackhole in their place. Or loving the unloved. Or shaving my head for St. Baldrick’s, (which will occur on March 13 – be sure to donate!) Or just simply exuding kindness. And, of course, maintaining my gratitude for all that I do have.

I am thankful, for each and every person who has trusted their heart enough to follow our journey. To love us. To comfort us. To laugh with us. To cry with us. To cheer us on or protect us. And to those who couldn’t handle us, thank you for exiting our lives. That sounds weird, but I am so grateful to the weak who couldn’t hang. Who couldn’t love. Who couldn’t care. Who WOULDN’T care. I can’t deny that it hurts, but I honor those who chose to leave. I send you light and love and heave a sigh of relief to erase you from our lives to make room for stronger support.

Make 2015 “EPIC,” dear friends. Find the joy. Be BADASS. Be kind. But don’t forget to be thankful. Gratitude opens hearts and allows everyone else to see what makes yours beat. Not physically, silly! That would be totally gross. I’m talking about emotional. Allow yourself to feel, dear friends. Allow feelings to guide you to the desires of your heart.

And that’s when you’ll find the courage to LIVE as you should be.

 

 

 

 

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.

 

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.

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.

 

 

 

Yesterday Ben and I headed to the hospital for his regular clinic appointment. They didn’t even draw his labs before determining that the kid needed some fluids and probably some platelets since petechiae (tiny dots of blood/bruising) had formed around his mediport. Sure enough, when his labs came back, he was in some desperate need of platelets. They were at 5K (normal range = 150,000+) despite receiving a full transfusion of them two days prior. His body is just eating them up and not replenishing. Looks like he’s going to be transfusion dependent for a while.

So, I looked through email, caught up on Facebook (I’m on it so much, I know every single thing that all 754 of you are up to!) watched Ben sleep (which he probably considers to be creepy) and then decided to take a walk around the halls as he slept off the last of the required benadryl used to ease the potential side effects of a platelet transfusion.

The floor just happened to be having a parent’s support group (with free lunch) so I wandered in with a resounding “HI!” I scanned the circle of about 10 people, most of them with a look I was all too familiar with: shell shock. It was clearly a newbie group.

I had actually showered that morning and was in a ridiculously good mood given the circumstances – the antithesis of the folks surrounding me. They were all sleep deprived. Probably wearing clothes that they had on the prior day. Worried to leave their kids side for even a single moment, but still found the bravery to walk down the hall to listen/share with a bunch of strangers. It was not a stretch for me to remember those first weeks of my child’s cancer journey. They were terrifying. And not very photogenic.

One parent has TWO sick kids. Another parent didn’t even know what her son’s diagnosis was yet. Another mom had just traveled six hours via car from another state to get her child’s treatment. And yet another had no idea where they were going to stay for the night. They didn’t live 20 minutes away like I did. They were worried. Disheveled. Exhausted. Apologetic for being unapologetic.

Then there’s me. Clearly in my best coping mode: using humor. Someone give me a mic, I’m totally going to make these people laugh. In the middle of my routine, and while receiving a bit of laughter from these weary souls, one of them asked me THE QUESTION: “what’s your cancer story.” Frick. This isn’t going to make anyone laugh at all. “Well,” I tentatively started, “my son was diagnosed with neuroblastoma in 2004 and…” I was abruptly cut off. “2004? It’s 2014. Did you say 2004?”

I know my eyes gave him the best “I’m so sorry” look I could come up with. I hate telling other cancer families how long Ben’s been in treatment. I always assume that they immediately go to the “Holy crap, maybe that will be us, too.” And I shatter their hope and crush their souls. This is what I assume. But as I was relaying this story to my friend this morning, he suggested that maybe they’re not thinking of themselves, maybe they’re feeling pain for what we’ve been through. Maybe I’ve been looking at it wrong all along. But I’m not going to ask during these encounters: “Wait. Are you feeling bad for what could potentially happen to you or are you feeling sad about how long we’ve been at this?” I just never thought to ask. But it did give me a fresh perspective. The truth is probably somewhere in between.

Regardless, here was freshly showered and fairly photogenic Sarah telling them to chin up! Yes, it sucks but you HAVE to find the joy. And while my words probably bounced off exhausted ears or ricocheted off the tiny bits of their brain not loaded up with too much cancer information, I did the only other thing I knew how to do: I gave them all a hug. Some were more hearty than others. Some were with minimal contact… especially the mom with the kid going through BMT where the tiniest germ can kill you. One dad cried. I don’t think he’d had a hug in a long time. And it felt good to let him just hold on to me and shed a couple of tears.

I’m not sure if my words helped. I’m fairly confident my mini comedy routine was better received than my cancer story. But I KNOW my hugs went a long way. And it helped me, too. Because I know what these people are going through. I’ve lived it. I’ve felt it. I’ve cried about it. I’ve wondered when someone would simply hold me and let me cry.

As a parent, I’ve gotten so good at comforting my children whenever they need it. But dammit, we parents need some comforting sometimes, too.

Which reminds me of the old Ohio Bell (now AT&T) commercial jingle “Reach out, reach out and touch someone.” It seems that we’re so inundated with ways to communicate that we’re simply overwhelmed when it comes to actually communicating. I’m guilty of this, too. Cell phone, computer, tv… I can get caught there, too. But instead of escaping into yet another coping mechanism, maybe we should simply reach out. Connect. Commit.

And find more joy.

 

When looking back on days that really meant something to me, December 4, 1991 always pops into my mind. I was officially an adult: I had recently graduated from Ohio University and was actually using my degree. I was taking my first, real vacation – one that I paid for myself. I was going alone. I chose the destination. I set my itinerary. It wasn’t going to include visiting relatives I barely knew or doing things that didn’t interest me. It was solely my gig.

I chose Summit County, Colorado. I had exactly one contact there – a girl I’d met while working at a summer camp for over-privileged children (yes, despite working towards my degree in social work, I chose to work at a camp where my skills were not welcome. I know, I’m weird.) Regardless, this chick was a real cool cat and I was really looking forward to hanging out with her in between all my skiing and sight seeing. She picked me up at the airport in Denver and took me further west to the most beautiful place I’d ever seen. As she drove to the summit of Loveland Pass, she insisted that we stop at the top. Everyone stops at the top. It’s a Kodak moment for all tourists. Except this was late at night and not exactly when most tourists visited. However, on this particular evening, the moon was full and there were a bazillion stars dotting the sky. There was not another soul in sight. I got out of her car and was simply stunned by how bright the moon was as it reflected off the snow. I could see absolutely everything. I could see more mountain peaks in the distance. I could see my friend as if it were daytime. She was encouraging me to follow her to a path that lead to a set of steps that went even higher. I tried to catch my breath in the thin mountain air, feeling the severe lack of oxygen. The only things I could hear was the echoey laughter of my friend bounding up the stairs, my boots as they crunched through the packed snow, and my shallow breathing. I had to work hard for the view, but once I got there, I truly felt like I was on top of the world. I’m not sure if I said it out loud or not, but I made the determination then and there that I would live there one day.

Two years later – almost to the day – I made good on that promise to myself, packed up my little Ford Escort (which mostly contained my massive stereo, remember when speakers were big enough to be buried in?) and headed west.

But wait. I’m getting off track. Back to that perfect day…. We woke up early to get a jump on skiing. I was fairly new at the whole skiing gig but I couldn’t wait to get out there. My only other experience was Ohio skiing, which is pretty sad in comparison. Anyway, we skied, met lots of fun people, made dinner plans with a group of her awesome friends… the entire day was nothing but high energy fun. I felt amazing the entire day. If I had to choose one word to describe that experience, I’d pick “Wheeee!”

I know I’ve mentioned my issue with depression before – and it might be hard for someone who doesn’t understand depression to “get it” – but there wasn’t a single moment in that day where depression crept through the cracks. I’d never experienced that before (and honestly, have had very few days like that again – depression is a really bad boyfriend that even though I try really hard to break up with him, he always finds a way back in.)

I’ve spent a lot of time trying to recreate that day. I used to catch myself mourning that I haven’t topped what I’ve deemed my “Holy Grail.” So, I decided to give up that particular quest. That day was perfect from a standpoint of not having any depression. What other things can qualify as perfection? First of all, it’s a very personal quest. What makes me happy probably doesn’t make you happy. A day of skiing might sound like a personal hell to you.

But who says it has to be a whole stretch of time? Why can’t I simply have perfect moments? Okay, so Monday, I took my son to the hospital. He didn’t want to have any infusions at all so he was really disappointed when he needed two. After we dealt with the setback, we made the most of our time while he was tied to his bed via an IV. As he drifted off to sleep due to the benadryl required before a platelet transfusion, he asked “Do you know what you mean to me?” My eyes welled with tears as I thoroughly lived this moment of perfection. I soaked it up so I could use it to help me get through the next dark bit that might be coming my way.

Someone challenged me a while ago by asking, “Don’t you see your life getting better as you get older? You make a little more money, you drive a little nicer car, you move to a roomier home…” And while this topic might fly at a typical cocktail party, I had to smile and say, “not in my case.” And it used to make me really sad. Oh, okay, sometimes it still does. But my life isn’t like your life which isn’t like their life. Comparisons will get you nowhere.

We each have to find our individual joy (and damn anyone who tries to take that away from us.) For now, my joy is listening to the soft snores of my unintelligent dog and the clicking of the controls on my son’s DS as he plays a video game.

I might not ever have another “perfect day,” but I have a million perfect moments.

And that’s enough.

 

Shortly after Ben was diagnosed with Neuroblastoma in 2004, I attended a conference in Chicago that dealt specifically with this insidious disease. It was an annual (now semi-annual) event put on by a mother who lost her son a few years prior, but was dedicated to continuing the fight for others. She collected all the experts in the NB world to come speak on the topic. Being a newly immersed mother in this NB nonsense, I felt that this conference was mandatory. I packed up my infant daughter and drove to Chicago with my friend, Patty, while Matt stayed behind with Ben, holed up in the hospital.

The conference blew my mind. So many people milling about to discuss and learn all they could about a supposedly rare cancer. I heard stuff I didn’t want to hear. I saw videos of things I didn’t want to see. I saw too many parents leaving the room when the “angel group” was called, which meant they had lost their precious child to the Beast. I was absolutely shellshocked.

During a Q & A period with one of the presenters, a veteran mother was asking some questions. I listened with one ear while I was playing with my three-month-old, begging my baby to smile at me in the midst of all this heartbreaking news being shared. The mother was asking when the next new therapy would be available since her child had been fighting for years and was nearly out of options. The doctor expressed that he didn’t know. And then she made a statement that I don’t think she meant to state out loud: “Maybe it would just be better if my son died.”

Nobody seemed to react to this statement but every cell in my body seized. Is this what we’re up against? This sense of lost hope? The dread of running out of options and horrified that nothing else is available? And why were all these people okay with what she just said? I wanted to run out of the room AND hug that poor woman all at the same time. She was exhausted. She was tired of watching her son die right before her eyes and being absolutely helpless to stop it.

Now that I am in her role – that of a veteran mother – I have to say that there have been some times where I’ve lost hope, too. When a relapse occurs. When he’s terribly sick from treatment. When he’s unable to simply be a kid. I’m guilty. I’ve thought similar thoughts. Maybe he’s getting too tired. Maybe this won’t work. Maybe.

Maybe.

But in a conscious effort to STFU (Google it if you don’t know what it means) I’m taking a look at all the hope that is out there. Ben just finished a high dose of radiation and had a 99% response rate! This is phenomenal! One thing is for sure, my son is a fighter. He’s battled four times and has won four times. Of course, I have to be cautiously optimistic, this is a cancer that LOVES to return and get meaner each time it comes back. But, STFU Sarah, Ben is good right now. 

And right now is all any of us have. This is the truth for every single one of us.

Appreciate each and every moment. And choose hope for what lies ahead.

 

 

 

Dear Ben,

My dear, sweet ray of sunshine. A child who very rarely complains, choosing to hold your fears close to your chest. I am amazed by you, yet my worry is immense. I hope you know I’ll do everything possible to ensure you have an amazing life here on earth.

You were my first child, born June 22, 2001 after what seemed to be years of labor. Seriously. You took your sweet time getting here, but it was well worth the wait. I didn’t know what to expect. Heck, I’d never really been around a baby before, so this was going to be a new adventure for both of us. Gazing into your eyes let me know you were an old soul. Your innate wisdom threatened my newbie parenting status, but instead of worrying about it, we just let it unfold.

For two years, life was pretty good. I watched you hit all your important milestones along the way. This parenting gig was going so well I decided that another baby would be a great idea. A few months into my pregnancy, however, you started getting sick. A lot. Visit after visit to pediatricians and Urgent Cares proved nothing. You had a virus. No, you had a hip infection. Wait, you were just constipated. Actually, I was just a “nervous first-time parent.” Seriously! A medical professional actually said this to me! No one thought to run a simple panel of blood tests. I even asked our pediatrician, “Do you think this could be something more ominous?” She shook her head no.

A few more months passed. You stopped walking. You cried a lot. You had a constant runny nose. I decided I had to stand my ground because I KNEW there was something wrong. We went to the Emergency Room – by this time I was seven months pregnant – and sat there until someone had an answer. Within a few days, we learned the horrible news: Neuroblastoma, Stage IV, unfavorable tumor, high risk for relapse, 20-30% chance of survival. Everyone in the room with us was in shock. You were asleep in my mother’s arms. My dad sat nearby, completely silent. My then-husband held onto me as I sobbed into his chest, repeating “My baby! My baby! How can this be?”

At the tender age of 2 1/2, they hooked you up to poisons that could easily kill an adult. And the funny thing is, you immediately started feeling better! Finally, the cancer was dying and you felt great! I just knew you were going to respond to this therapy. Unfortunately, those first 15 months of therapy were grueling: Multiple chemo treatments, too many surgeries to count, a bone marrow transplant, radiation therapy, and experimental therapy. But you made it through. After 15 months, we heard the precious words that you had No Evidence of Disease.

And, you got a new sister six weeks into the journey. I was so worried about how I’d bring a baby into this hellish environment, but it worked out wonderfully. Madeline Grace was a breath of fresh air we all needed. She gave us a focus even when we were terribly overwhelmed – and you simply adored her.

2005-2009 was a time we were getting our groove back. We moved from Ohio to Colorado. Life continued and we only thought about cancer when your quarterly scans came up. I never seemed to let go of the anxiety revolving around scan time – it was always excruciatingly nerve wracking. But you endured. You started Kindergarten. You made friends. Things were normal.

Unfortunately, right after your eighth birthday, we learned it was back. A routine scan showed a mass behind your heart, attached to your lung and one of your ribs. After I finished hyperventilating on the phone with your oncologist, I came downstairs to tell you. You looked into my eyes as I delivered the news. I had to force myself to tell you. And as the words came out of my mouth, you simply listened. No tears, no emotion. As it was sinking in, your one and only question was, “Does this mean I’m going to die?”

I searched for the sugar coating but (thankfully) couldn’t find it. I told you the truth. I said, “I have no idea, sweet heart, but I can guarantee that I will be by your side every step of the way.” And that seemed to be enough for you. Within a few minutes, you were back to playing/fighting with your sister.

For almost three years we traveled to NYC for a horrendously painful therapy. More radiation. More surgery. More yuck. You told me at one point that you were ready to die because it hurt so bad. You forgot your statement the very next day and I haven’t brought it up since. Once you graduated from the 3F8 therapy in NYC, we found another experimental study in Kansas City. Less invasive. More manageable.

Didn’t work.

Relapse #2. The day we were told, I lost my mind. We were in a doctor’s office in Kansas City, you were listening to something on YouTube through your headphones. I collapsed against your doctor. She held me as I cried “Not again!” over and over. I’m sorry you had to see that. Your simple statement, “What’s wrong, mom?” sent me into another wave of tears. Your doctor explained that you had relapsed again and you said, “Well, I guess we’ll just have to fight again.”

We started more therapy back in Denver. You turned 12 in the hospital while battling pneumonia and kidney stones. Your beautiful hair fell out for the umpteenth time, but this time it bothered you because you’d be starting middle school in the fall.

You fought another year only to relapse again July 4, 2014.

My darling, you’re back in treatment. Again. I know you’re getting tired but my first promise to always be by your side still stands. I’m not going anywhere. We’ve lost many friends along the way. Your parents got divorced. The financial struggles feel insurmountable. Some people don’t understand how much we need them and how it hurts when they retreat.

You’ve been fighting for TEN YEARS. And that’s not fair. But your tenacity is amazing. You’re here to fight another day. Even when it hurts beyond belief. Even when you’re sad about losing another friend. Even when you’re angry that you can’t be a normal kid. Even when you simply don’t want to.

Now, that, I am afraid of. I’m afraid you’ll get to the point where you simply don’t want to fight anymore. But I’m so proud of the young man you’re becoming. The sweet, sensitive, loving boy who gazed at me with those deep brown eyes 13 years ago changed me in such a profound way. And while I can’t be happy about all you’ve had to go through, I admire you in ways I simply can’t explain.

I am so very proud of you. And we’ll keep fighting, together, even when it gets too tough. I’m here. I will always be here. It’s more than my job, it’s my mission.

You’ve changed me for the better, my dear son.

I love you,

Mom.

 

 

A few months ago, my dear friend and fellow cancer mom, Sarah, introduced me to an organization called “Team IMPACT.” Their goal is to pair critically ill children with a collegiate sports team, all with the mission of improving the child’s quality of life through the “power of team.” Her nine-year-old daughter and cancer survivor, Jamie, was recently paired with the Regis Women’s Soccer team and was LOVING the experience.

Jamie is a super outgoing type of kid. My Ben, however, is a solo kind of kid. He’s spent so much of his life making friends only to lose them to cancer. Or making friends at school only to lose them because he couldn’t make it through a full day – let alone a whole year – of school. He is fine with his solitary status: playing ridiculous amounts of video games or watching YouTube videos on his phone. It’s his comfort. In fact, I know he did so well with his MIBG therapy isolation because he was equipped with an iPad and all the time in the world to watch videos. If there’s a cute animal video out there, Ben has seen it.

Not that Ben is antisocial, quite the opposite. He is the most compassionate kid I’ve ever met. He genuinely has a heart for others who are suffering or having a hard time, often putting his critical status on the back burner to attend to others’ needs. His heart is huge. I think what it has come to, however, is that he simply doesn’t want others to worry about him. From what I’ve heard him say to others, he has the impression that he’s a burden. He recently told his grandpa that he wishes people didn’t have to worry about him. He’s sorry that people worry about him. He doesn’t want to be in the spotlight or be a spokesperson (despite having an amazing story to share) or bring attention to himself. It’s way out of his comfort level.

So, when Sarah introduced this organization to me, my first thought was “no way will Ben be interested.” First of all, he’s never been a part of a team. Second, he’s not a sports kind of guy (with the exception of following the Avalanche with his hockey obsessed mother.) Third, he will hate the idea that this will put him in some sort of a spotlight. But, what the hell. I’ll ask him. Nothing to lose.

I watched as his amazing eyebrows knitted together and raised as I was explaining what Team IMPACT was all about. He listened intently. And when I was finished explaining, his first question was, “Do I have to say anything?” I told him that he’d have to interact with his teammates but I didn’t think he’d be called on to make any inspirational speeches. He surprised me when he said “I’d like to do it.” I immediately started the process of getting him paired with a team when cancer struck again. The summer – as you all know – was filled with yet another round of trying to fight the stupid beast hell-bent on taking Ben from me. Team IMPACT would have to wait.

Thankfully, as my overwhelmed state focused solely on supporting Ben, Team IMPACT kept reaching out to check on how Ben was doing. I knew immediately that this was a special organization. THEY did the work. I didn’t have to reach out at all. And once we got to a place where Ben was doing better, they got right on it and paired Ben with an AMAZING group of guys: The Men’s Soccer team at the University of Denver.

Now, we know minimal about soccer, but Ben was excited about the pairing. Coach Bobby Muuss invited us to come to Vail for Ben’s “draft.” The minute I walked in and saw Ben’s name, I started to cry. They were so ready to make Ben a part of their team. Player after player came up to us and introduced themselves, shaking our hands and letting us know how excited they were to have Ben on the team. It was overwhelmingly beautiful. The thought of this group of guys caring about my son blew me away.

Ben wasn’t feeling well that weekend – and I’m sure he was way out of his comfort zone – but he still stated that he was excited to be a part of the team. My emotions, however, were all over the place. I guess when I first saw Ben’s name projected on the wall, I was hit with the distinct possibility that this will never truly occur for my son. His disease statistically dictates that he will not live long enough to go to college, let alone have the strength to play sports. Not at a college, not in high school, not even on a playground. But, lately I’ve been obsessed with living in the moment (mostly due to my amazing counselor telling me that I MUST live this way) so I drank in the beauty of this group of wonderful young men wanting my son to be on their team. It was a priceless moment that helped mend my broken heart.

Ben’s had some physical ups and downs lately. He’s been so tired. But his teammates have sent encouraging messages and videos offering support. I think Ben likes that. It’s hard to tell what Ben’s thinking sometimes, but I have a good idea based on those eyebrows of his. His expression can show no indication of what he’s feeling but I’ve deciphered so much based on those eyebrows… and when they raised up during the viewing of a recent video the team posted offering their support, I know Ben was touched by their sentiment.

Ben went to his first game last night. He sat on the bench with his teammates while Madeline and I sat in the stands. I found myself only occasionally glancing over at Ben – I knew the guys would watch out for him (he has low platelets right now and a ball to the face could leave a mark.) Madeline and I cheered the team on to a 2-1 win. But the most amazing moment was when I glanced over to see the entire team – including Ben – jump off the bench during an exciting moment of the game. My heart soared.

Getting to see that – watching Ben being a part of the team and getting excited over something that he’s only beginning to understand – did my heart a lot of good. Any “normalcy” I get to experience with Ben feeds my weary soul. I didn’t realize how much I was craving that. I just didn’t understand how I would feel to watch my son simply enjoy such a moment.

And when he came off the field after the game, he gave us a high-five. He expressed how much fun he had, how much he enjoyed the excitement, and couldn’t wait to do it again. As we walked through the halls of the Ritchie Center of DU – the sports complex on campus – Ben stated, “I sure would love to go here someday.”

Yes, Ben. We’ll have to rob a bank (since I am still paying for my own DU experience 14 years later) but I sure would love for you to go here, too.

Thank you, Team IMPACT. Thank you, Coach Bobby Muuss. Thank you, fine young men of the DU Men’s Soccer team.

And thank you, Sarah Crook, for loving us enough to know we needed this. You are the absolute best.

I’ve always been a pluviophile – or one who finds solace in the rain – and I’m fortunate in the way that my children have picked up on this trait as well. Especially Ben. One thing I love about Colorado summers is that when it rains, it’s usually a doozy. When we hear those first drops hit against the window, we’ll run out to the car and lean the seats all the way back to watch the rain hit the sunroof. We all take comfort in those drops – sometimes breathing deep and sighing – like our souls have been rejuvenated through the precipitation.

The rain washes us clean.

Last night, I was cleaning up the makings of banana bread when I first heard the thunder. Madeline was already asleep but Ben had just laid down so I knew he wasn’t asleep yet. I peeked into his room and said, “It’s happening.” I saw a thin smile despite his not feeling well. He crawled down from his loft bed as I grabbed a blanket and headed out to the balcony. I keep a big papasan chair out there where I often write my short stories (btw, book to be completed by the end of this year, friends!) Ben wandered out and stepped over the mess of yet another fairy garden that Madeline and I are creating (I think we have an entire village of fairies living on our balcony now.)

It was pouring. Ben sat next to me on the big chair as I pulled the blanket over us. Just as we were snuggling in, he asked if we should wake up Madeline. She hadn’t been feeling well, either, so I told him to let her sleep. I kept thinking that I would take the opportunity to talk to him about “stuff,” like “How are you feeling?” or “Do you want to talk about anything?” or “Are you ready for what’s next treatment wise?” He’s 13 now and I know he’s starting to pull away from the whole concept of “Mom.” He loves me, for sure, but he’s a teenager now. There are things he just doesn’t want to discuss with me. Unfortunately for him, that has no bearing on my ability to be a “smother.” I’m all up in his business 24/7. That’s my job, after all. And given his medical history, I’m hawk-like in my attention to what he’s doing. I know when he throws up. I know when he’s having bowel issues. I know when he’s dizzy or how much he’s eating or how much water he’s had for the day, so when he forgets to tell the doctor any symptoms, I’m there to back him up. Like I said, I’m a smother.

So, as we were sitting there, watching the sheets of rain from underneath our blanket, I kept thinking “ask now.” Then something would stop me. Sometimes it was a crack of lightning. Sometimes it was listening to Ben’s exclamations about the amazing light show. For once, he was watching what was before him instead of focusing on an electronic of some sort. The storm had his full attention. And I decided that it simply wasn’t the time to talk about cancer. He deserved this. He needed a break.

Mom needed to keep her mouth shut. And my reward for that was the moment Ben leaned his head over to rest on my shoulder. The soft sigh taking his body to a relaxed state as the rain soothed the storm that was consistently battering my son. Yes. He deserved this moment. And I soaked up the weight of his head leaning against my shoulder, knowing that I am comforting him as best as I can.

For once, we were facing a storm that we could manage.

With each crack of lightning, he gazed in wonder as I admired his profile. The soft slope of his nose. The slight upturn of his lips. The deep wisdom of his eyes as he looked at the lightning with childlike wonder. And as his head hit my shoulder to relax again, I felt the downiness of his hair. I swear, for a split second, I could smell the scent of Ben as a baby. I smiled as I remembered the good of the past 13 years. How far we’ve come. How hard we’ve fought. And the fact that he’s still here to sit beside me for another day.

He kept his head there until the rain let up. We must have been sitting there for thirty minutes. He told me that he was getting pretty tired so I encouraged him to head in to bed.

Then he said, “I won’t ever forget this, mom.”

I smiled and said, “I love you so much, Ben.”

I expected him to say “love ya,” because as he gets older he’s moving away from the gooey aspect of sentiments like expressing a full dose of “I love you.” But he humored me. Or maybe he meant it because it was such a moving moment.

And as he told me “I love you, too, Mom,” I let it wash over me like the torrents of a storm. The comfort I found was more than refreshing. I let it slide over me and soak me to the point of making my fingers pruny. I closed my eyes, breathed deep, and smiled.

Before he turned to go back inside, I let him know that I would never forget this moment, either.

No matter what happens. I’ll always do my best to give comfort during the storm.