So I read a post today that centred around this thought of chronic sorrow.  The website navigated to a home page describing something that I can identify so much with as I read it.

What is Chronic Sorrow?

Chronic sorrow is the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions. At its core, chronic sorrow is a normal grief response that is associated with an ongoing living loss. It is the emotion-filled chasm between “what is” versus the parents’ view of “what should have been.”
Sometimes called a “living loss” 1 because it doesn’t go away, chronic sorrow may stay in the background while the family does their best to incorporate the child’s care into their usual routine. If a medical crisis or event occurs which magnifies the loss and disparity between reality and the life once dreamed of, it can trigger a return of the profound sadness.
Parents or caregivers of premature babies, children with diabetes, sickle cell disease, spina bifida, epilepsy, muscular sclerosis, and developmental disabilities may have to cope with chronic sorrow. Caregivers of family members with Alzheimer’s disease or other ongoing illnesses, as well as couples experiencing infertility, may also have chronic sorrow.

Chronic Sorrow: A Living Loss, Susan Roos, 2002 ↩

I fully get this. The to and fro between periods of okayness with an illness and the chaos of a flare up.

I just didn’t realise that it had a name.

My brain thinks about all of this.  This idea of living in the ‘what is’ to ‘what could have been’ or even what still could be (because hope is alway alive in my heart) – isn’t that just life?

Life is often doing a merry twirl on the dance floor known as limbo land.

In Christian speak, we often talk about the now and the not yet.  The gap between what heaven says, what God thinks and what plays out in our lives.  Sometimes the gap is huge and I am so aware of it.

Life is filled with chronic sorrow.  But even as my eyes scan this website, I am super thankful that my faith ins’t in a world labelling system, but my eyes are on a kingdom and a king whose name is above every name – including cystic fibrosis and chronic sorrow.

I’m reminded of my fav Dave Crowder lyrics “Earth has no sorrow that heaven can’t heal”

I choose that space – to hope, to believe, to know Him in the middle of it all.