The breeze is more chilled these days. The turn of the seasons bringing with it decades of memories. Fall has always been my favorite season. Perhaps first because I love snuggling up beside a campfire in a sweatshirt. Second, because my October birthday always was something to look forward to. Last year in October, I remember we almost didn’t celebrate. The entire family had just had a week of nasty colds with a lingering wet cough that left us exhausted. But we had the offer of family pictures from my brother-in-law. In the end, we were grumpy, but we hiked a quarter mile into the woods in our sweaters, threw the leaves into the air and smiled for the camera. Months later, when I looked at those photos, I would see something that I didn’t notice on that day. A photo of Isaac looking to the left, a lump sticking out of the right side of his neck.
Grief and guilt and sadness intertwine and I’m not always sure which I’m feeling. I noticed that lump on Isaac’s neck weeks later. He had always had reactive lymph nodes, so I made a mental note, a slight thought of “wow that’s a big one” and carried on with life. It didn’t go away after a couple of weeks and I texted images to my nurse practitioner friends who affirmed my “wait and see” approach. It wouldn’t be until nearly another month later, on December 17, that we would be sitting around the table eating dinner and he would turn his head to the left again to reveal a massive mass on his neck that had popped up overnight. I left the dinner table to call and make an appointment with our primary care doctor the following day, and that ball began rolling and it still hasn’t stopped.
I don’t know if Isaac had cancer this time last year. Sometimes I wish I knew, but mostly I long for the naivety that last fall brought. In January, we met his oncologist for the first time and she beckoned us to believe that this is a very treatable cancer. Her kind eyes made me want to believe, but I quickly learned that once cancer becomes a regular part of your vocabulary, treatable is not synonymous with easy. She told me that for much of treatment, we will be able to go about life as normal. Picture soccer games, vacations, a hair-covered-head back-to-school. However, for so many reasons, normal is something we left behind around December 17 of last year when we first noticed that mass on Isaac’s neck. We will never pick up that normal life again.
That is the first thing I have learned to grieve. Normal.
Some days it’s hard to be in groups of friends making plans to carry on with their life, traveling, mothering runny noses, planning birthday parties. I feel the line drawn dividing the before and the after. They are living in my before. In my before, I would have been planning and laughing along with them, but instead every bruise brings anxiety and every fever has us on edge. It is not their fault. But it feels like our journey of childhood cancer is a big elephant in every room that nobody can see but me.
I think part of the reason why I have been so hesitate to narrate this journey is because I desire to wait for the happy ending. For the hard to be redeemed and for the questions to be answered. But that simply isn’t life. Especially not right now. So, at the risk of being a downer, I’m going to do my best to simply be real. Because grief strikes when you least expect it, and there are many days when I find myself sad about things that I never realized mattered in the first place.
There is only one “but" to this that brings light. BUT God. BUT God’s people. BUT Jehovah Rapha. I found myself in Psalm 56 weeks ago, where it says “you have kept count of my tossing; put my tears in your bottle. Are they not in your book?” Through all of this, God has shown me that he sees. He hasn’t forgotten. He sees my tears and he is telling this story. From the beginning, I’ve had to look at our story with the end in mind… that God has wonderful plans for us and for our boy and that through this fire he will refine us, his people. But the fire burns. I feel my insides screaming and some days I want to crawl out of my own skin to take the place of my boy. I would if I could. I wish I could speed ahead years to when I am certain that we’re okay. I want the story without the journey. I want the fruit without the flames. But refining and healing takes work and it takes time. So we continue to take one day at a time.