Let's go back to Mothers Day weekend, when we traveled to Mississippi to be with family at a beautiful little patch of nature, complete with all manner of wildlife, including close encounters with snakes and fish that seemed to jump onto the hooks of rookie fishermen (including me). I admit that I was less than enthusiastic about the trip. We had been going at a feverish pace in our family, due to extra demands at work, after school activities, maintaining volunteer commitments at schools, our church, and in the community. To top it off, that was the week that we stopped chemotherapy for Philip, having learned that his tumor was not responding to treatment. Mothers Day was the farthest thing from my mind. I was a wreck, and felt spent but had a to-do list a mile long that was not going away.
As we drove to Mississippi that Friday night, my patient husband reached over and grabbed my hand and thanked me for making the trip, acknowledging that it was one more activity in an endless sea of chaos that month. I listened to our two children in the backseat chattering with one another. I closed my eyes, longing for the ability to be more like these children, carefree, innocent, oblivious of responsibility and a smart phone color-coded schedule. As soon as we arrived, I was relieved to be there and felt my spirit refreshed by the joy surrounding me in the form of catching up with family members we had not seen in a while, the sound of children running and laughing together, as well as an abundance of good food and fellowship in store for the next two days.
The next day, we heard an update about a close family friend that is battling advanced cancer. He had been reading a devotion for those facing cancer that encouraged him to spend intentional time with significant people in his life. Later that afternoon, Big Philip and I stole away in the canoe together and paddled around the lake.
"You know Renie, that is what I am trying to do with Philip," my husband said. The canoe stopped moving as I realized this was going to be a serious conversation. Paddles down. He continued.
"We don't know what the future holds for our son, so if that means we aren't able to devote as much time for CTF fundraising this year in favor of spending more time with my son, that is what I'm going to do. That is why being a Cub scout den leader means so much to me. I want to spend intentional time with him. I want to be significant in his life as his father."
My husband is right. There is no rebuttal. We are fighting, doing everything we can to ensure that a cure for NF is found before NF acutely affects our son's life. If NF has its way with my son, I need him to know I did everything possible, that I held nothing back, making a pest of myself in every way possible to garner one more sponsor for the NF Walk, gather one more family like us, that needs to know they are supported and not alone in this fight. I close my eyes and picture the faces of the many NF parents and children, young and old, that I have met over the past three years. Some are no longer with us.
However, the memories we want our son to have of his childhood are no different than the dreams of other parents. We want Helen to be as unaffected by NF as possible too. Intentional time spent with significant people. Making great childhood friends and growing up together, family vacations and trips, camping, swimming, learning to ride a bike, taking healthy risks, laughing so hard that you can't catch your breath. We want these memories to outnumber the countless MRIs, chemo pills, doctor's appointments, blood draws and more.
This is why I have hesitated to write this story because I do not know how to end it. There is no happy ending, not yet, but many happy chapters that continue to unfold. We fight for the ultimate happy ending in the midst of battling for more moments of joy and laughter. There are plenty of these moments, more moments spending intentional time with significant people. It should not take a life altering circumstance like ours to pause and think of ways everyone should be spending more time with significant people in intentional ways.
We have spent this summer working on being more intentional in reflecting on each of our prayer warriors and supporters that never seem to tire of sharing an encouraging word, a helpful hand, a willing spirit to continue to the fight to cure NF alongside us. Many of these same friends and family fight by providing a normal childhood experience for our son, helping to push the shadow of NF away, allowing him to just be a child, full of wonder and excitement, without fear or anxiety for a little while longer.
Thank you to my husband, Big Philip, who is willing to fight my fighting spirit in moments like we had in that canoe that day. As we celebrate our 14th anniversary this week, I am amazed at your patience with me and courage to hold me through the stormy emotions that I sometimes cannot escape. You are my rock and quiet source of wisdom just when I need to hear it the most...like in a canoe in the middle of a lake from which that I cannot escape. God is funny like that sometimes.
And so, our story continues but not without a deeper understanding of what is significant in life to be intentional about and the countless friends and family that are very significant to our family.
