I rode the wave for as long as it would last. I wrote, I coached, I laughed and I smiled, and then it came crashing down on me and I sat once again in my anger and sadness.
Anger over the fact that my Lea is not the same joyful girl with sparkling eyes. Anger over the fact that she can’t run with her friends, or ride bikes, or enjoy life like she used to. Anger over the fact that there is no cure. Anger over the fact that six weeks of radiation will get our kid back to normal (so they say), only to have this tumor return unless God decides to intervene. Anger over the fact that I have no idea if this will be her last Christmas, or if she will even make it until then. Anger over the fact that a sickness like this exists and every day people, and children, and my child, suffer because of it.
Lea was a champ at her second radiation treatment on Friday. She got right up on the large white table sitting in the middle of this massive, dimly lit room, the paper covering crunching under her body. She allowed them to strap her “mask” over her face without protest as my eyes filled up with tears (again) at the sight of what is happening around us, feeling again, totally out of control. Then we have to leave the room as her “light medicine” does its job. The first time we did this I was not ok. Mike and Cara (our child life specialist) were there to help me through it. Yesterday it was Mike’s turn, and I was able to be strong for him. We have come together as a united force there to help each other. So far, one of us has always been able to be strong for the other.
I allow the feelings in. I let them swirl and sit. I let the tears fall. I pray for strength and peace to survive the unknown with grace. And I clean, as I often do to regain some sense of control.
Hearing other families stories is not helpful to me. I prefer to live in ignorance right now, and take this one day and one obstacle at a time. I don’t want to map out the future or think ahead even one week.
We will not allow Lea to suffer on this earth for our own selfish desires. When, and if it is time, we will ask God to take her. We will let her go, knowing we will see her again in heaven where there is no sickness, and no death. We will pray for peace to get us through something no one should have to endure.