Month: July 2019

3:30 came early.

We arrived on time, got Cam checked in and are sitting in the surgical waiting area at Phoenix Children’s.

Cam is fairly grumpy for having to get up so early. We let him sleep until about 4:15, so he got about six hours of sleep or so, but he hates getting early anyway.

As I wait for everyone to take their nightly baths since we have to get up some stinkin’ early in the morning, I find myself in a very odd place.

This whole time, I’ve been at peace with tomorrow. Sure, I’ve struggled with this condition and what I can or can’t do about it. All the time spent reading, researching, worrying, venting, crying. But I’ve really been in a very peaceful place knowing what lies in front of Cameron, more peaceful that I probably should be.

I don’t know if it’s the Lord’s hand on my shoulder keeping me calm, or if it’s just been the drive to get us to this time and place, or maybe a lot of both.

The last three years have really been all about getting Cameron the help he needs, the countless doctor’s appointments, imaging studies and tests, the numerous failed medications, it’s all for some payoff, a light at the end of the tunnel.

The next week or so will reveal what that light is. Is it the scary light of an answer that could result from consenting to some sort invasive procedure to alter my son’s brain, potential removing or neutralizing the cause? Or is it the light of the proverbial train that is going to signal that this trial is not at it’s ending, but just starting?

I’ve seen more that I could ever want to see. This family has been through hell watching it all as well. I know friends and family have hurt for us. I’ve prayed. I know Mandy is praying. Our family, friends, co-workers, even Cam’s surgical team, is lifting Cameron up tomorrow.

I’m going to be a wreck. But I have to keep it together some how, some way. I’ll lean on my wife and best friend; I’ll turn to my parents thankful that I never had to put them though something like this while at the same time trying to comfort them about their grandson; I’ll hold my other child as he tries to cope with watching his brother go through this; But mostly I’ll lean on the Father Almighty, thanking him for every blessing he has bestowed me with, wanted or otherwise.

Whatever the outcome is to be, it will be. My God has it all in his hands. I don’t pretend to understand it, but I hope he can continue to help me be at ease with it all, because I need that help today more than ever.

We made it to Phoenix just fine, so there is that. Austin decided he wanted to come down even though I think Mom and I wanted him to stay back in Flagstaff to make things a bit easier. But he’ll go home Friday with friends and likely stay there until things are done.

We stopped at McDonald’s to eat lunch before we left Flagstaff and I got a call that Cameron’s procedure got moved up due to a cancellation. We were originally supposed to check-in at 9 AM, but now we get to do it at 5 AM. Yay! He’ll have his MRI around 7 and then off to surgery after that.

Because of the early start, I decided to see if we could check in at Ronald McDonald House early to buy us a little time. We were supposed to be able to have room at the House directly on PCH’s campus, but it was completely full and they didn’t expect any checkouts tonight, so we were directed to the house that was about two miles down the street. They had a few rooms open, but have several families checking in, so we felt best to use the first-come, first-serve policy, and they were nice enough to give us a space. It’s actually a nice little apartment that will work for everyone and has it’s own kitchen space and laundry machines, so it sounds like we got a good hook up here.

We’re off shortly to get my Mother who arrives at the airport in about an hour. Not sure we’ll have any more updates tonight, but I’ll be banging them out bright and early in the morning.