A short while back a friend commented on one of my posts: “I see you smile and know you are suffering….I’m sorry you all have to wake every morning and prove how strong you are. I wish for Will’s cancer to someday be just a chapter in your life and not the whole story” and this sentiment has stayed with me since. Our family has been immersed in this cancer story for 382 days and in some form or fashion have been trying to stay positive and tell a story that delivers our friends and family a happy and reassuring ending. The knowledge that it may not end in such a way, however, has been simmering beneath all the while. Even when things were looking miraculous we were tempered by the fear we were being fooled by the evil trickster we had come to understand was Will’s cancer.
But every day Will, his brothers, Stuva and I have had to wake up and prove how strong we are. We do it for ourselves and we do it for the people we love and who love us. We do it because the idea of strength has become integral in the tale we spin to ease your worry and keep you engaged and cheering us on. But truth is we are weary and we are sad and we are broken. We need to know that you still want to hear our story – no matter the ending. That we can be cared for, just as we are. That your fear of not knowing what to say will not get in the way of your love for us.
And although we do know that cancer will be just a chapter in Will’s life and in our lives, this chapter has permeated our story with an experience that has stolen innocence, time together, doused hope and dreams for the future and caused us to dig far too deep into our reserves at a time we should be living life to the fullest. It is, however, just a chapter because Will is so much more than a boy with cancer and our family is so much more than a family in trauma and I do not desire it to rob us of our hope and faith for the goodness of life.
This chapter, sadly, will end sooner rather than later. It is time to let you know that Will’s cancer is terminal and there are no longer any curative options for him. On Tuesday, New Years Eve day, Will and I sat with his oncologist and we all cried together. He bowed his head and heard the words no one deserves to hear – especially not a child. Tears fell to the floor and we just sat with him – our hands on him but stricken with the knowledge that our comfort fell far short of what he deserved.
Will worried about how his brothers were going to handle this news and decided we didn’t need to tell them quite yet because he knew they were looking forward to their New Year’s Eve plans. He asked how long he had left to live (the answer is we don’t know but acute cancers do move quickly.) When I told Will I would do ANYTHING to trade places with him he told me he would never let me. He remarked that he was only fifteen and hadn’t even done anything with his life yet.
But I now say, dear Will….you have done SO much with your life and will continue to do so for all the days you have left with us. You have taught me about love, the power of honesty and speaking one’s truth, the kindness of people and the true nature of those born under the scorpion sign. You have allowed me to be ok with not being ok but you have also shown me how to pick myself back up and keep going. You have taught me to notice the beauty in the simplest things and how touch is truly magical. You have taught me the importance of being in the moment and squeezing each other tight. You have taught me the importance of letting go. You have shown me my third child, my baby, is made of the stuff of legends. And even though the price is far too high and our greatest misfortune, you have inspired countless people around the world…to live better and to love better among a great many other things.
And we are still living with so much hope for each day. Our days are simple – marked by our rituals of care giving and taking care of business – and sometimes very hard. We say goodnight and wish each other peaceful dreams and I say an extra prayer that Will sleeps through the night and escapes for a while from the pain. Will is under the care of hospice but for now we only use them for pain management as he is now on a continuous drip of pain medication. At some point we will need to become more intimate with his care team but for now time at home with the brothers is the best medicine in the world.
As always I ask for your prayers for peace and comfort and be assured we will do the same for you. As Ram Das once said….”We are all just walking each other home…” Amen to that.