Who needs a hug?

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.

 

The perfect day

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.

 

Choosing hope….

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.