We have just come back from our little vacation/bucket list item earlier this week. We did a quick cruise from Galveston to Cozumel with the Big he’s dad and bonus mom. Those two are frequent floaters and have wanted to go on one with us but we never could make schedules work. We made our schedule work this time.

Have you heard that song by the Zack Brown Band where the lyrics go:

I got my toes in the water, ass in the sand
Not a worry in the world, a cold beer in my hand
Life is good today Life is good today

That pretty much sums up the trip. While we did not have our @$$ in the sand all the days, life was good.  The trip was a getaway from everything. Yes, the Alpha Lima Sierra is always with us but for those four days we were closer to normal then we have been since the diagnosis. The toll that a terminal illness takes on not just the body but the mind and spirit can be enormous. I follow others with Alpha Lima Sierra and I am in awe with the way they handle things. I want that to be us and it is part of the time, but the other part we just can’t get into that mindset.

So the trip was just what we needed to recharge the batteries and prepare to face this reality of ours. I think one of my favorite times was when the Big he and I spent the morning/afternoon just hanging out being “us”. The “us” before the diagnosis. The “us” that can just spend time together talking or not talking (those that know me, know there is not a lot of silent time when I am around because I can always find something to talk about). The Big he and I just laid out on the lido deck people watching, enjoying a cold beer or two or three,  and enjoying our time together. The little he would check in with us, give us kisses and then would be off. It was great watching our little he explore and enjoy some teenage freedom. For that day and the other three days, I can say “life was good”.

But the trip is over and we are back to the grind. We are still trying to get the Big he retired. I will start a new job next week so I am spending this week running errands, cleaning/purging the crap, and of course sleeping in and napping when I can and chilling with my little he. We still have not settled on a contractor but need to. Oh and our new car broke just days before the cruise so we are still waiting to get it fixed. Apparently, it is hard to find parts for a 2016 vehicle because they don’t anticipate them breaking or having a faulty part so the parts are not readily available. Go figure!

I think I will just go outside, close my eyes, play me some ZBB and imagine what that sand and water felt like.

…I got my toes in the water, ass in the sand
Not a worry in the world, a cold beer in my hand
Life is good today Life is good today

All my love,

The She

His update: About the biggest change we have seen is in his right hand. It is atrophying and now seems to be getting weaker. We continue to  pray that Alpha Lima Sierra slows to a snails pace so my big he can see a management or cure before its too late.

Our request to you: Support any and all efforts for the right to try investigational drugs. http://righttotry.org/. This means reaching out to your elected officials and letting them know you support the right to try. While there are so many worth causes, we do ask if you can, support ALS financially so a cure/management can be found. Please keep in mind at this time, there is NO cure or treatment for ALS. It is terminal, not sometimes or for a small few but ALL THE TIME for 100% of those that get it.

The walk to defeat ALS is coming up in the fall. We will start a team called what else, Tom’s Troops. Please consider walking in your local walk as part of Tom’s Troops.

Also, every August is the Ice Bucket Challenge. So you have time to think how to be creative with it and see how you can do this not just in style but raise awareness and $$$ too. If you #tomstroops when you do the challenge, I will let the Little he pick his favorite and we will send you a Tom’s Troops T-shirt. I know the prize alone makes you want to get your video out now. 🙂

So there you go and as always, #suckitals