31 January 2016

Bennett's Colon Clean Out, My Despair and Rage

Yesterday afternoon, I came home to rest.  But instead, I just cried.  I cried and cried and cried until my cheeks were sunburned with tears and I was utterly exhausted.

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 

“Lord, you are the God who saves me; day and night I cry out to you. May my prayer come before you; turn your ear to my cry. I am overwhelmed with troubles and my life draws near to death. I am counted among those who go down to the pit; I am like one without strength. I am set apart with the dead, like the slain who lie in the grave, whom you remember no more, who are cut off from your care. You have put me in the lowest pit, in the darkest depths. Your wrath lies heavily on me; you have overwhelmed me with all your waves. You have taken from me my closest friends and have made me repulsive to them. I am confined and cannot escape; my eyes are dim with grief. I call to you, Lord, every day; I spread out my hands to you. Do you show your wonders to the dead? Do their spirits rise up and praise you? Is your love declared in the grave, your faithfulness in Destruction? Are your wonders known in the place of darkness, or your righteous deeds in the land of oblivion? But I cry to you for help, Lord; in the morning my prayer comes before you. Why, Lord, do you reject me and hide your face from me?”  Psalm 88:1-14 NIV 

Once Bennett's colon clean out began, Brian and I decided we could no longer tolerate what was happening. Bennett needed pain medication and we resolved to do whatever it took to get it.

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."


  1. My heart hurts and is broken for you and your sweet boy. I really hope that Bennett's pain able to be managed without causing more bowel impaction. What agony. :( I hate that you're going through this. Sending you so much love.

  2. I feel angry when I read about his pain and your pain. What a powerful message and gift this girl has given you in her words. Tim asked me who I thought was the best mom and I know without a doubt it is you. he didn't hesitate to agree. Know that you have a world of people interceding for all of you- we are in it for bennett

  3. Father, I pray tonight that you erase the memory of pain for Bennett. I pray that you cover and protect his little mind from any memory of his anguish today, and that you continue to restore his little body and heal his insides from the surgery. Father, I lift up Breck and Brian to you in the Name of Jesus, and I pray your peace and protection over them as Bennett's parents. Lord, I pray they may be equipped with knowledge and patience for assisting with his care in the hospital. I pray that Bennett's doctors would wisely and judiciously care for Bennett and manage his pain levels appropriately. Lord, I pray for Bennett's siblings, that they would have peace about their brother and his care, that they would trust You and know you care about each and every one of them. Father, I pray especially for Breck tonight, that she would rest in Your perfect peace, and find strength in this time of pain for her as a mother. Lord, hold Her beneath the Shadow of your Wings, and comfort her heart as only You can. Hear our cries as parents, Lord, for our children, and Help us be Your Hands and Your Feet as parents and caregivers to our children. Help us to submit to your will for us, and to learn to love our children as You love them, Lord. Lord, help Bennett to rest tonight, and to sleep peacefully and in no pain, so his body can heal properly. Thank You, Jesus, for working a miracle in him and through his story, and Thank You, Lord, for calling us to pray for this precious family.--Amen

  4. The agony of the pain you feel for Bennett's CF is unbearable . I understand that kind of pain in my loss of Greg. No one should have to endure it. I'm so sorry Breck, I can't wait for this trauma to end for you and your family and for Bennett.

  5. I am sorry your son is needing a clean out. As a mom to a 13 year old daughter with CF that had MI at birth that required surgery and many blockages since. I have been in your shoes. We have been inpatient at least 6 times for clean out and done them at home as well. Every person is unique but my daughter has not needed a clean out in two years since I made some diatery change. She is 100% gluten free, mostly dairy free, limited sugar (I use maple syrup, coconut sugar, and fruit to sweeten things) and NO eating after 7:00 pm. I have also added in coconut oil and apple cider vinegar into her diet. She has always taken a probiotic daily. This was not recommended by a GI doctor, I was just tired of seeing her struggle with blockages and thought it would be worth far it's working. She has gained 25 pounds (gaining weight was a struggle before because her tummy always hurt) and grown about 9"! Hope you find something that helps your son.

  6. Breck, this is horrific. I am so sorry. I am praying for you all. - Diane Pickles

  7. Breck, this is horrific. I am so sorry. I am praying for you all. - Diane Pickles


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