As parents, there is one thing we all most likely have in common, there is nothing we wouldn’t do for our children. So when you have a child that is severely sick, having to trust in others expertise is incredibly frightening. You pray with everything you can muster that the medical professionals are making the best decisions for your child and you rely on them as best you can.
You watch as they pump your child full of poison, brutal chemo that hopefully kills the cancer but also completely deteriorates their bodies. Cancer treatment is torture. What we do to these babies, human rights wise, would never be legal at Guantanamo Bay, but we do it because we have no other choice. We trust and we cling to that hope that our child will be one of the “lucky” ones. One of the kids that lives to tell.
When Hayes’ brain tumor symptoms returned, we took him into the ER, desperately seeking help. The chemo had fixed him once, we were ready to do it all again. We could not fathom losing our perfect baby and we were never going to stop fighting until cancer was a distant memory. So, when the doctors came into his hospital room and explained that there was nothing left they could do, I was in complete shock! It still makes me sick to even remember. It felt like they were giving up.
I remember so clearly, pulling up every Children’s hospital I could find and reaching out to their oncology department. Someone had to have an answer. I even found myself reaching out to holistic doctors begging for help. But, it was all in vain. How could everyone just “give up”? I was grasping at anything I could, some glimmer of a hope that was quickly disappearing.
When we brought him home, he slept in my arms. Almost constantly. I had so much time to think. As I held that perfectly peaceful baby in my arms and stroked his still perfectly soft cheeks, a realization came to me. It was no longer my choice, Hayes’ fight was just that…his. I was an active participant in his fight, but it was still his internal battle. He was the one that had to endure the excruciating pain, the dripping poison chemo that surged through his veins and all of the physical therapy. I had to watch in agony and realize that I had zero control in ANY of it.
I remember the moment so clearly, the moment I realized that letting Hayes go was a gift to him. He didn’t want to feel the pain any more. He wanted to run and be free of tubes and wires. He wanted to be a little boy. The only control I had was accepting that he was done, he had won his fight! I needed to accept the lifelong pain of losing my Hayesey in order to give him the beautiful freedom from cancer. I would do anything for my children and I did…I let him go, I let him win, when he was ready!
I can assure you, our time apart will be temporary, but that pain in my soul is worse than I ever imagined and will last a lifetime. It eases my heart so much to know that he is full of joy and watching over me! But, the thought that I have to wait a whole lifetime to see him again hurts so much. It is now my pain to bear. My gift to him. And I would gladly do it a thousand times again to experience the joy he taught me. Families are forever and my love for Hayes is infinite. I will honor him my whole lifetime by telling his story and fighting for other warriors like him.