My quiet tears moved to audible moans and eventually to inconsolable screams.
Brian and I had dreaded all day what was going to be happening that night to Bennett, our six year old having to endure a colon clean-out with very little pain meds while his rectum suffered excruciating pain still healing from rectal surgery.
How does a mother even comprehend and cope with that amount of pain?! Surely, there is no pain relief for me either.
My anguish was overwhelming. At first I felt anxiety and then sadness, helplessness and then anger...not just anger but rage. Why was this happening? Why has CF pushed our backs up against the wall like this? Why has God abandoned us - abandoned Bennett?!
Last night, Brian stayed at the hospital with Bennett while he was undergoing the colon clean out. I stayed at home, partly because I needed to rest and partly because I was in no emotional place to cope with Bennett's uncontrolled pain.
Brian texted me throughout the night. For a long time, Brian kept texting that Bennett was doing fine, resting peacefully under the control of a muscle relaxer.
Maybe he was peaceful but I was not. My heart was being torn in to a million pieces and I didn't know what to do. I texted Brian about how angry I am at God.
In response, Brian sent me several verses from Job and Psalm that spoke the words we feel:
"If only my anguish could be weighed and all my misery be placed on the scales! It would surely outweigh the sand of the seas— no wonder my words have been impetuous. The arrows of the Almighty are in me, my spirit drinks in their poison; God’s terrors are marshaled against me.” Job 6:2-4 NIV
“Hear me, Lord, and answer me, for I am poor and needy. Guard my life, for I am faithful to you; save your servant who trusts in you. You are my God; have mercy on me, Lord, for I call to you all day long. Bring joy to your servant, Lord, for I put my trust in you. You, Lord, are forgiving and good, abounding in love to all who call to you. Hear my prayer, Lord; listen to my cry for mercy. When I am in distress, I call to you, because you answer me. Among the gods there is none like you, Lord; no deeds can compare with yours. All the nations you have made will come and worship before you, Lord; they will bring glory to your name. For you are great and do marvelous deeds; you alone are God.” Psalm 86:1-10 NIV
I called from home the charge nurse and asked for her to page the doctor on call to give me an immediate call back. Brian also asked Bennett's nurse who was supporting him through this clean out to get the doctor to come asap.
The doctor on call came and watched what was happening. She could see Bennett was agonizing in pain and, with some pushing, agreed to care for his pain appropriately. Within a short bit of being given pain med, Bennett was calm and in deep sleep.
It was all too much for me to handle to be far away from Bennett who was helplessly hurting and to be away from Brian who was having to absorb Bennett's pain alone. I couldn't stay at home.
Our dear babysitter Peyton had come to spend the night last night to watch Oliver and Avonlea so I could rest and be ready for the next few nights at the hospital. But I could not rest at all. I decided to grab my stuff and drive the thirty minutes to the hospital at 1:30am.
Brian was shocked to see me at the hospital in the middle of the night. I hadn't told him I was coming. He was also sad because he had really wanted me to stay at home and get rest. He had really wanted to protect me from seeing Bennett's suffering.
But after the inner desperation and rage that built inside me earlier in the day and after the overwhelming helplessness that overcame me as Bennett's colon clean out began to kick in from afar, I could not stand to be separated from my son and my husband.
I was so angry at the team's absurd approach to allow a child to suffer that I also came down because I couldn't miss a meeting with the Attending physician/Pediatric Surgeon who had made this call and would be visiting Bennett's room the next morning.
I will blog about that meeting and how our day went today soon. But I wanted to share something that was comforting to me even in the midst of utter despair at seeing my child suffer last night.
Yesterday during my moments alone in grief, I asked my friend, Emily, who is an adult with CF, how those with CF cope with these kinds of terrible personal hells. I asked, "Will Bennett suffer forever because of this? How much can one person handle?!"
She wrote words that I will forever hold on to...words every parent of a child with Cystic Fibrosis or any chronic disease should hear. She wrote:
"Will it affect him? Yea.
What will he remember? How in the horror of the hospital experience, you and his dad were his relentless comforters and companions and advocates -- and never left his side. How he wasn't in any of this alone. How it was a family journey. How home is where the family is. How through the worst pain and fear and agony, we can survive... and rise and thrive again.
You have to keep just putting one foot in front of the other right now, in autopilot mode, until you get through the sludge and see the light again.
But you have to remember, this will be just one memory of one experience in a quilt of many more. And most of those other ones will be wonderful patches."
