Unmet Expectations

Tim:

Today was a hard day.  Michael was really fussy and it seemed like no matter how much we held him or tried to make him comfortable, he was pretty miserable.  Sometimes we wish he could talk and tell us what's bothering him so we could help him resolve it.

On a positive note, we finally left the PICU today.  Apparently all the PICU rooms were full, which gave them extra motivation to move Michael up to the 6th floor for the remainder of his recovery.  His new room feels like a totally different hospital.  No more living in a fish bowl with glass walls and doors, no more nurses coming in every five minutes, and rules such as allowing food in the room are a lot more lax.  Of course it's harder to get help when you need it since the nurses are spread across a lot more patients.  And one of the nurses this evening didn't even know how to operate Michael's EVD (brain drain) even though this floor is specifically for patients recovering from neurosurgery.  We'd seen the nurses in the PICU do it often enough that Liz was able to give the nurse a hand with it.


On a sad note, the neurosurgeon, Dr. O'Neill told us today that because Michael has been leaking cerebrospinal fluid through his incision, it's pretty much a sure bet that he'll need surgery to have a permanent shunt put in to drain excess fluid from his brain to his belly.  He's willing to give Michael one more try to see if his body can drain the fluid on its own, but he's planning to schedule surgery for either this Thursday or next Monday.

We know that having a shunt put in isn't the end of the world.  Lots of people have them, including Whitney's preschool teacher, and they're able to live normal lives.  What's hard is knowing that so many people are praying for little Michael's recovery, including and especially his parents, and this is just one more thing in a long line of setbacks he's already faced in his road to recovery. 

I think a lot of it boils down to unmet expectations.  When we first brought Michael to the hospital we knew he was very sick and likely had a serious illness.  So when we were told he had brain cancer, we were heartbroken, but in some ways we already expected something major, which helped soften the blow of the diagnosis.  But as family, friends, and even strangers united with us in faith and prayers, we hoped that things would go smoothly with Michael's surgery and recovery.  You could even say that we expected it, although we've prayed all along that the Lord's will be done.  With each setback, though, Michael seemed to be having a longer and harder road to recovery than we expected.  Those unmet expectations are a big part of what makes it hard.

You could argue that if having unmet expectations is hard, we should just set our expectations super low so that they'll always be met.  But I think an important part of faith is setting high expectations.  The joy is sweet when the Lord answers yes and those expectations are met or even exceeded.  When the Lord answers no and the expectations are left unmet, it's called the refiner's fire.  We've definitely been feeling a lot of that sort of heat lately.

Instead of counting miracles, we're trying to count our blessings.  And often the line separating the two is indistinguishable.  We're so blessed that Michael survived his surgery, and although he faces numerous setbacks, the problems are usually solvable.  We've had a tremendous amount of support from family, friends, and even strangers.  We have excellent health insurance and my manager and team at work have been very patient and understanding through all of this.  Liz and I have each other to strengthen each other through the ups and downs of Michael's illness.  Our other three children have loving family and friends watching over them while their parents are away for long periods of time.  We are at one of the best hospitals in the nation for treating Michael's cancer.  We have the assurance and hope that our faith and the gospel give us.  And the list goes on and on...