First Day of School, in Three Parts

2009

When L was in treatment, I remember being viscerally angry at all of my facebook friends who were posting pictures of their smiling 4 year olds off to their first day of pre-school. L was being denied that opportunity because he was fighting for his life. It seems silly and petty now. Pre-school isn’t really school. Not really. And, my time would have been better spent sleeping, or studying, or paying attention to my marriage, or to C, who was still just a baby then. I wasn’t really mad at my friends or their kids. I was just jealous and angry at cancer and scared. So, so scared. That’s the thing with fear and grief. They take you outside yourself and make you feel unnatural things.

2011

I wrote this post about the First Day of School. L was finally cancer-free, off-treatment, and we were dipping our toes into the “off-treatment” life. Well, now I can say dipping our toes. I think at the time it was more like a no-holds-barred-white-knuckle-squeeze-every-stinking-thing-I-can-out-of-life-roller-coaster-ride. I was so afraid that the first days of school would be stolen from us, that I probably over exaggerated their meaning, to me and to L. And certainly to C. I over exaggerated everything. At the time, it was the only way I knew how to get back to living. “This could be the only chance we get to do this. Ever. Quick! Where’s my camera?”

Looking back at that piece I wrote, I can see and smell the survivor guilt dripping from every paragraph like spilled honey. Again, fear and grief make you do funny things. I wrote that post in the living room of our house and I remember very clearly thinking about the Mommas who I would soon meet at the 2011 shave. I felt guilty. My son survived. My kid lived. My kid got to go to the first day of school. My kids would come with us to Washington, DC and my survivor would be on stage with me taking the first swipe at my curly hair.

Meeting those Mommas in person, made it worse for me personally. I feel bad saying that, but it’s true. First, I was face-to-face with women (and their kiddos) who could’ve been me. We are (still are, really) just one spot on his lungs away from relapse or one bad blood draw away from a secondary cancer. I knew that then. I know it now. I will never not know it. Second, meeting the Mommas and shaving in 2011 made me feel incredibly guilty. Like I wasn’t good enough, like I wasn’t gracious enough. That I needed to have worked harder for L’s survivorship, or that I owed all these women and their dead children something because my kid made it and theirs didn’t.

NONE of the Mommas made me feel that way. I made myself feel that way. Survivor guilt and PTSD are real. And they manifest themselves in some really effed up ways. In fact, the bereaved Mommas whom I have come to know and love are kind, compassionate, fiesty, determined, and focused advocates for ALL kids. They are genuinely GLAD for L and our family that he survived. It is what they wanted for┬átheir own children and didn’t get. No one knows why. We will never know why. That is the rub. Some kids make it. Some don’t. These women know grief and they will do almost anything to make sure that other kids and their mothers don’t also walk that path. I pray that in the face of such loss I would be so gracious. I don’t think so though.

I didn’t write about the first day of school in 2012 or 2013. I am glad for that. I think I needed to NOT write about it. I needed to just let them happen and not be heavy with so many expectations.

2014

The boys’ first day of school was only last week. Seems like longer. Time is like that. The days are long, but weeks fly by. Last Tuesday dawned sunny and full of energy. This year was great because we were not new. We knew the school, lots of the families, and teachers. The principal knows all of us by name and stands in front of the building and greets everyone as they walk or drive up. I love our neighborhood school and feel very fortunate to live where we do. When we walked inside, I felt excitement and relief. Not relief that L got to experience another “first day of school” but relief that I didn’t feel relief. I was thrilled for my boys. I was grateful and proud. I think the number of pictures I take of an experience is inversely related to how much I enjoyed it. On vacation, I took 20 pictures max. It was one of the best weeks I had all summer. On the first day of school, I took 14 photos. That’s it. And my favorite photos aren’t the staged ones I made the boys take on the front step. My favorites are the goofy ones I took when they thought I wasn’t looking.

September is national childhood cancer awareness month. Around the world, kids and their parents are fighting like hell to get their “first day of school.” Every single one of them deserves it.

Zach Sobiech

I have been kind of whine-y and wallow-y lately for many reasons, some of them legitimate. I struggle sometimes with what to write because I don’t want to complain or appear ungrateful. I have a great life. But, I have also experienced extreme trauma and the recovery from that continues. The PTSD of our son’s cancer diagnosis strikes at the oddest times and without warning. Recently, we had to rent a car to get to NJ for my niece’s first birthday. Our car, it turned out, needed a new wheel bearing. Thanks Michigan winters and subsequent potholes. Then, we had an inch of water in our basement from a busted part in our sump pump. These things are minor, of course. But annoying nonetheless. And, they make me tired. Not sleepy. Like newborn baby, bone-crushing tired.

PTSD.

We have already endured the hardest thing. Haven’t we earned a pass for the rest to be smooth sailing?

Yesterday, I had to take L to a dermatologist for a suspicious mole. It is near the site of his primary tumor and was radiated, so his oncology team and pediatrician wanted it looked at by an expert. I left work early, pulled L out of school early, and then arrived to the appointment early. And then proceeded to wait 90 minutes in the waiting room. Blerg. Blerg. Blerg. Now, this is nowhere near what we endured while L was in treatment, but it is still scary. What if the mole was something? What if they wanted to biopsy it? Lucky for us, our five minute conversation with the doctor revealed that the mole is just a mole. He was nice actually. He didn’t apologize for being an hour late to our appointment, but he was knowledgeable and thorough.

As we drove home from the appointment, I got more and more angry. We waited so long in that stupid waiting room. L and I missed C’s T-ball game because we got home so late. Instead of being relieved that we got good news, I was annoyed and amped up. Turns out, Sean was hit hard, too. He told me later that he kept checking his phone looking for updates from me. Waiting really is the hardest part.

PTSD.

L and I decided to take a walk. As we headed down our block, L slipped his bony little hand into mine and started swinging. No prompting or begging from me. Just a moment of pure childhood innocence. As we walked around our block, he kept commenting on all the trees in bloom and how good they smelled. Lilacs, flowering crabapples, dogwoods, honeysuckle. The sweet, sweet smells of spring (Finally, spring!) in Michigan. “Spring and summer are my favorite seasons, Mom.”

Earlier that day, I had seen a tweet from the Children’s Cancer Research Fund (@childrenscancer) in MN about Zach Sobiech, asking people to share their stories and memories of Zach and how he has touched our lives. Today, May 20, marks the one year anniversary of Zach’s death from osteosarcoma. Although I never met Zach in person, I feel as if I know him. My sister-in-law Annie was his youth minister in Stillwater, MN. She provided updates to us about Zach and his treatment and we prayed for him and his family from the moment he was diagnosed in 2009 until his death. I read his mom, Laura’s Caringbridge posts and like all of us, hoped for clear scans and no recurrence.

I am not sure if I consciously thought about Zach and Laura while I was taking a walk with my own son. But, I think that subconsciously I was thinking about them. The Holy Spirit tapped me on my shoulder, or more accurately hit me over the head with a hammer, and told me to pay attention to that moment with L. There will come a day when he won’t hold my hand, or willingly take a walk with me. I know this. And through grace, I was reminded of that and paid attention to the moment that was right in front of my eyes. In his Soul Pancake video, My Last Days, Zach talks about life being a bunch of beautiful moments strung together. He is very wise.

The truth is, our family did a very, very hard thing. But, we didn’t do the hardest thing. We didn’t bury our son. He is here with us. He survived. And because of that, I must choose. I must choose to enjoy these fleeting precious moments that I have with both of my children. I must choose to make something good come from something so awful. I owe it to L. I owe it to Sean. I owe it to C. I owe it to Zach. I owe it to Laura. I owe it to my 46 Momma sisters who have also lost their children. I owe it to myself.

“I want to be known as the kid who went down fighting and didn’t really lose.”- Zach

Zach, you made one hell of a fight and you didn’t lose. Your life is a shining example to all of us here who continue to live in faith, and work hard to raise desperately needed money and awareness for all kids with cancer. Thank you, Zach.