Last week, we started the WORK OF HEART series on our blog. We have asked people all over the country to share their hearts with you and what God is doing in their lives.
Today is Day #6 and we are excited to introduce you to Breck. She and Brian have been married for almost 12 years, they have 3 children (Oliver – 8, Bennett – 6, Avonlea – 2), and she is a stay-at-home mom. Hear her heart…
My six-year old suffers from the life-shortening genetic disease cystic fibrosis, a diagnosis he was given at birth. Cystic Fibrosis causes thick mucus in the lungs and digestive system which can cause lots of complications. The life expectancy for cystic fibrosis is 41 years. Currently, there is no cure. Bennett recently endured his 7th surgery in 6 years where a foot of his colon was removed. On top of this being a significant surgery, it caused complications that required us to return to the hospital. Unfortunately, Bennett suffered a lot during this last surgery, in addition to what he has to endure day in and day out to keep himself healthy. Bennett takes more than 20 pills per day, a total of 9 medications, spends 30 minutes on breathing treatments twice a day, and is fed supplemental nutrition through a feeding pump at night. It’s a lot for a mom to worry about, but even more for a kindergartner to have to do daily…and this regimen is one of a child who is relatively healthy. Unfortunately, cystic fibrosis is a progressive disease. So, we know that over time, his health will get worse and his daily care will become even more complicated. During this last hospitalization and subsequent complications, I felt a sense of despair and rage that I had never felt before. To watch my child suffer in pain without relief and feel helpless to stop it was beyond what I was emotionally able to handle. I found myself very much in touch with anger towards God that He had abandoned us.
Lately, I have had to hold on to what I know about God’s character to get me through the moments when I have felt most abandoned. I know that God does not leave the ones He loves. And I know God loves me. But it’s very hard to not feel like God has chosen to hide His face from me.
I have been blessed with a very wonderful close and extended community of people who love my son and our family who remind me that God is near, even when He feels far away. Even when I fear God has left me, I can embrace that He is present through the kindness of others. When someone brings us a meal or sends me a text to say they have been thinking of us, it is a reminder God is near. But to remember this even in the midst of loss and hurt is challenging. I consistently pray for relief for my son. I wish I could be bold enough to pray for my son a cure, ultimate relief from this terrible disease. But my heart can hardly handle the pain that comes from asking for such a big ask and knowing it’s likely impossible. Even if a cure comes in his lifetime, my son will still have suffered. I pray that God will be near to my son, my other children, my husband and myself in these moments…and I pray God will give him relief.
God has felt more and less real to me through my journey with CF. There are moments when God has felt nonexistent or far from me. And yet there are also moments when God has felt real and close in ways I would not have imagined. I feel like God is most near to me and most real to me in my pain. While I am aware of His presence when life is normal and mundane, He comes to life to me when I am most desperate for Him. I find Him best when I am in the midst of grappling with living in a broken world and aching immensely for heaven. I don’t tend to find myself regularly spending time with Jesus. Instead, I find Jesus regularly spending time with me. I wish God would take away my fears, my doubt, and my anger towards Him. I wish that my faith would be consistent and that I would chose to fully embrace God’s character.
My focus right now is embracing God’s character – believing that what He says about Himself is true – trusting that He has not and will not ever abandon me. The verse that I have been holding on to is:
But Zion said, “The Lord has forsaken me,
the Lord has forgotten me.”
“Can a mother forget the baby at her breast
and have no compassion on the child she has borne?
Though she may forget,
I will not forget you!
See, I have engraved you on the palms of my hands.”
Here is a video with Bennett’s story:
And here’s how you can help: http://initforbennett.com
Read more about our WORK OF HEART series.
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- Tags: cystic fibrosis, guest blogger, Isaiah 49:14-16, parenting, prayer, testimony, work of heart