Location, Location, Location | Waiting for the End

It's been two weeks since our last post, which is far and away the longest time between posts. But this past week was all about stepping away from cancer for a bit, and trying to rest, relax and enjoy some time together without the day to day world suffocating us.

This past week, we were on our Make-A-Wish trip, at a simply stunning location on the oceanfront in Maine. Normally I'd transition into giving you a quick Zach update, but his condition feels very much connected to our trip, so that update is woven into this post instead.   I'm not sure I'm 100% back from the trip though, so this may not be my clearest post ever either. 

The house was set on a point right on the rocky coast. We had 230 degrees of ocean views right in front of us. You can see one of the pictures to get an idea of what it was like. The house had a pool right next to the ocean too. When you walk into the house your are floored by the view, but when we arrived this past Sunday Zach overlooked the view and went right to the pool. He wanted to go in immediately, so we did that. We played catch in the water for a bit. It was high tide and the waves crashed and lapped on the rocky shore below. Seals bobbed in the ocean off to the right, searching for snack. The noise from the ocean was loud enough that you really couldn't hear much unless you were right next to someone.

After playing catch for a bit in the pool. Zach decided to swim a lap around the outside of the pool. He started and did a great job for a kid who only has one leg to kick with it. But as he finished he stood up in the shallow end, and the sound cut through the idyllic scene. He started to cough, it was a rough cough, and it shook him deeply. He coughed for about 20 minutes, with the type of cough that has you crying and your body shaking and writhing in pain. But then it slowly subsided.

It hit me then and there, on the first hour of arrival at our vacation home, was this the beginning of the end? Strike that, I knew, because of what the trip was - a celebration of life to create memories, sponsored by Make-A-Wish - that it absolutely was that - a step toward the end. In fact we've been walking down that road for months. But I am starting to become immune to that reality. I know it's coming, I just don't know when. We are waiting and watching for it. And with every little cough, and every significant coughing spell, we know we are running out of time. So we are going to try to enjoy each and every moment.

That's where the house comes in. We really struggled working with Make-A-Wish to try to create an experience that we couldn't do on our own. Eventually we got there and got to the house we ended up in. That battle was worth it. While I wrote about the scary part of the ocean in my last post, this time the ocean was there to help us relax and enjoy, and that location, being able to sit and stare at the water, hear the waves, watch the changes with the tides, see the seals, fall asleep to ocean sounds, was truly cathartic.

I didn't open my laptop, I didn't watch or read the news, I didn't respond to a single work email.  I didn't even try to write a post.  On my down time, I would just sit there and stare at the ocean and let the view and noise help clear my head and give me a few moments of peace. The location was perfect.

We all deeply needed rest and being able to step away from it all and simply gaze at the shoreline gave most of us the chance to relax and get some of the rest that had eluded us for months. I knew I was tired, but I didn't know how tired I was until I had the time and location where I could rest. Jenn tried hard to rest too, but her sleep still mostly evades her.

But this isn't about us. It's about Zach. He liked the location, enjoyed the change of scenery and the escape from doctors, needles, tests, school, etc, He could just relax. He was able to do some shopping, some fishing, drove his RC car on the beach, swam, made a few Zachtails with the supplies that Make-A-Wish provided, went for a boat tour of the coast and hauled in some lobster traps. The new pace and flow seemed to jibe with him well. The house had a wall sized scrabble board that led to some fun family competitions. He had an enjoyable week, and with the exception of some brief, extreme frustration aimed at cancer, which rears its head each and every week, it seemed like a memorable week overall.

Personally, my favorite moment on the trip though with him wasn't any of that though. It was lying on his bed before bedtime with him, Mythbusters on in the background, and we just hung out and talked a bit. Nothing important, just about the day, and being a father and son. We seem to do that more and more - most nights now - and I cherish each minute.

Now we know the end isn't here, but it's coming. We aren't giving up, we are still fighting. Just a few days of rest from the battle shows us how weary and beaten we are. And while we came back somewhat rested to resume the fight, we don't know how long or how hard the battle will be. It certainly won't get easier.

That brings me to this week's song, Waiting for the End by Linkin Park. It's a soaring anthem with highs and lows about the end of a relationship and the horrors that that brings, but also about the new beginning that starts and how you have to rise up to face it.

Every time I hear it, it stops me in my tracks and gives me goosebumps. I played it more than a few times sitting on a rocking chair this past week letting the combination of music and the ocean take me away for a few moments. While it's not a song about parenthood, I can definitely apply it here with a few key lyrics to summarize how I feel. These aren't the lyrics in their entirety but just a few key selections I've combined to share where my head is at. It's about Zach now, it's about the weight that cancer pushes down on us all, and it's about whatever and wherever the battle leads up, ultimately leading us into an entirely new battle.

This is not the end, this is not the beginning
Cause we're living at the mercy of the pain and fear
Waiting for the end to come
Wishing I had strength to stand
This is not what I had planned
It's out of my control
All I wanna do is trade this life for something new
Holding on to what I haven't got
This was never meant to last
I wish it wasn't so
The hardest part of ending is starting again