Chronic: The Race Set Before Us

I am coming to terms with it.  This is not passing.  It’s not over after a surgery, or two.  Or after a therapy session, or three.  The first year is behind us, but there are more miles in this marathon.  I’m discovering what chronic means.  I’m learning that adopting a child labeled medically complex truly does mean “continuous care” and it will “require services from different practitioners in multiple settings over time“. 

 

We knew it would be a stretch, but we didn’t expect to unravel completely.   We cherished our comfy, together feeling, unaware we were wound around the wrong things.

 

Life is now a marathon of appointments,  surgeries, X-rays, nurse calls, research, MRIs, infection, complications, testing, PICC lines, anesthesia, ultrasounds, therapy, and care taking.  And our emotions dart between fear, hope, tears, weakness, hero mode determination, numbness, faith,  exhaustion, new joy, and gratitude.   Human feelings and supernatural strength step simultaneously together.

 

So we must face what chronic and complex mean.

 

The antibiotics will continue. 
The appointments will continue.
The care taking will continue.
The “catastrophic” insurance medical cap will be met. 
More procedures. More medical supplies.  More hurt.  More miles to go.

 

We wonder if our prayer team will start dwindling.
We wonder if people are weary of medical talk and prayer requests. 
We wonder if we’ll figure out how to truthfully yet concisely answer, “How is she?”
We wonder if telling the truth is whining, because we should be running the race better. 
We wonder if doctors are making the best decisions.
We wonder if God wants us to hope for miracles or accept realities.

 

Well intentioned people in our lives regularly encourage us with, “It will be fine.”  “She’ll be fine.”  “You’ll be fine.”  But what do you do when your heavy heart simply doesn’t feel “fine” watching your child endure continual procedures, tests and hurts?   Should we try harder to be fine? 

 

We wonder how parents of more complex children do it.  We think, “Well that family adopted a child with the much harder XYZ disease and they seem together.”  Or, “That family has adopted four kids with complex needs, and are adopting three more, what’s my problem?” 

 

But our child’s pain messes with us.  When discomfort comes daily, tears flow regularly, painful tests are ongoing, and caretaking that hurts is required, there is trauma to process.    Is my faith growing?  Yes.  Am I feeling blessed and refined?  Yes.  But there is still trauma to process. 

 

No matter the internal or external pressures we feel, we must give ourselves the freedom and time  to feel what is to be felt.  To look at the dark parts of the trail and not look away.  God is allowing us to walk through something chronically hard.  From the world’s perspective our child might end the race “fine”, but a parent’s heart still has steps to take.   

 

Read the rest over at No Hands But Ours. 

 

Special thanks to Tish Goff for her beautiful photographs.