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.