Denver: Part Three

This will be my final post about our trip and then I promise to move on to something more interesting, or at least more positive and cheery.


I had such high hopes and dreams for this trip.  People tried very hard, with little success mind you, to keep my expectations in check.  Even Alex said a few times that he thought we would go all the way down there and have to come home with nothing fixed.  I became quickly irritated with these people, not understanding why they just couldn't stay positive and dream along with me that this may provide us with the answers we had been hoping for.  Negative people usually bring me down but I was determined to stay positive.  This was going to work, I thought.

As you know, we came back knowing not much more than we did when we left.  Cale endured a week of doctor appointment after doctor appointment, a trip to the ER and an overnight stay in a crib that looked more like a prison cell than a bed, and countless pokes and prods that I'm pretty sure have instilled a fear for doctors so great that not even a computer or cell phone will be able to distract him.  As he became more aware of our surroundings, he quickly learned the driving route to the hospital and immediately started crying and trembling.  Having to drag him through those hospital doors day after day made me feel like the worst mother in the world, wishing I could just whisk him away to some place where he could just be a happy four-year-old little boy.  I often thought of the day when we could go on an airplane that took us somewhere other than another hospital.  Disney World is going to blow his mind!  Having to explain to over a dozen different doctors what is wrong my with my son very quickly became incredibly emotionally taxing.  I want to go some place where people just look at Cale and tell me everything that is right with him.

I had a moment of clarity as we were riding the elevator to go to another appointment.  Riding with us was a dad and his daughter, probably around the same age as Cale.  She was hooked up to an IV and looked very sick...exactly the way Cale had looked just a few days prior when he had been admitted into the hospital.  I suddenly realized that Alex and I are part of a very elite club, where its members know all too well what the others are going through.  We don't stare at little kids in a wheelchair or at children tethered to IV poles.  We don't make small talk in elevators asking how their day is going because we already know the answer.

 I don't want to be a member of this club.  I don't want hospital visits and doctor appointments to feel normal.  I don't want to have to drag my son into a doctor's office while he's crying and telling me that he's scared, all the while faking my way through the phrase, "it's all going to be okay".  I don't want to have to put on a brave front when in my mind I'm also running for the door at mach speed.  Some day Cale is going to be able to see right through me, and then what?

Now that we've been home for over a week and we've made the changes in his medicine, I continue to find myself hopeful that these changes are going to work.  I know in reality that if the medicine was going to help it would have started working by now, but each morning I wake up thinking maybe today is the day!  Cale has almost seemed worse the past couple of days, thrashing and writhing in pain after he eats, and last night he threw up in his bed after we put him down for the night, but I'm still hopeful.  I'm pretty sure that's the definition of insanity.

At the end of the day, Alex and I can rest in knowing that we as parents have done all that we can to help our little Cale.  I suppose this is all just part of the process of elimination, and someday we will reach the end and have our answers.