One of the battles I struggled with as we cared for David was a sense of helplessness. I couldn’t stop the disease from progressing, I couldn’t make David’s pain go away, and I often felt I was failing as a father. A dad’s job is to protect their children from harm. Sadly there was nothing I could do to protect David from the claws of Batten Disease. I am grateful for my faith that would often remind me that while things feel and look like they are completely out of control, there is a God who is still in control. He was my refuge when I had no where else to turn.
“Oh my people, trust in him at all times. Pour out your heart to him, for God is our refuge.” Psalm 62:8
Dear David,
Wow, what a rough two days. In fact I would say they were the roughest we have had since you were diagnosed. Dr. Mink thinks he went too high with your Triliptal and boy did it have a huge impact on you. I don’t know if you remember, but you were in physical and emotional pain. You were angry and constantly upset. You didn’t know where you were. You kept saying, “I just want to go home,” or “I want to go to jail.” You didn’t know if you wanted to sit, lie down or walk. You didn’t like it when people touched you. It was horrible David. Two nights ago it took you almost two hours to settle down and go to sleep. Last night you slept well and today you seem much better. David, I was so afraid for you and what else is before us. I wanted to be brave, I didn’t want fear to overwhelm my faith in God, but it was too much. I hated seeing Daniel and the emotional pain he was experiencing. I hated knowing the struggle Brenda, your Momma, was experiencing, and there was nothing I could do about it. I was helpless.
I prayed for you. I asked God to turn his attention to you. I asked him to pour out his blessings on you. I asked him to take away your pain. And while I know God heard me, loves me, loved you, I still felt helpless. I am still struggling with just feeling sad. I can’t shake it. I’m supposed to preach next weekend and I am a little concerned about my emotional state.
I miss your laughter David. I miss your kidding around. I miss seeing your smile. I had a little peak into what it will be like in the future and I don’t like it. David I chose today to acknowledge God is in control. I claim and acknowledge that God is good and loving. Well buddy, it is a quiet Saturday morning. We have changed you a couple times already this morning. Dan Edsall is coming to hang out with you. I hope you have a good day. I love you buddy. Daddy