Blog · July 8, 2016

Enjoy Life

My trip to Italy with my boys is scheduled for Monday and I couldn’t be more excited. I saved 4 years for this trip! I can’t wait to hug my mom and dad and of course, everyone else! The next few days I will be making sure we get everything we need for our trip. The other day I filled a suitcase with Nicky’s bandages. Not all bandages, mind you, just “some”… well, most. I still need to add somewhere all his g-tube supplies (food, bags, pump, extensions etc), medications and other bandages… and of course, clothes and miscellaneous for all three of us plus all the gifts for my family I bought on the other two suitcases. Yikes! What am I going to do?

I called the airlines on Tuesday morning to get seat information and assignment and give them the info on the power-chair Nicky has (they wanted to know weight, dimensions etc because they will transport it in the cargo free of charge) and to make sure we had wheelchair assistance on our stopovers in Paris (going) and Rome (coming back). I asked many related questions about our travels and while they had to put me on hold several times (I guess my questions were not frequent!) they always came back with the information I needed. We fly Air France all the way to Italy and Alitalia on our way back. I was so impressed! Both airlines truly wanted to hand over backwards for us. I’ve dealt with so many people over the past 19+ years in regards to making accommodations for Nicky that anytime a business “offers” help I am flabbergasted. I am rarely if ever, “offered” anything, I always have to ask. They stated that if I got a Doctor’s note of what Nicky needs to survive (bandages, g-tube supplies, meds etc), they would not charge me any “extra” fees. Well, WOWser! This reminded me of a few other times where accommodations for Nicky were easily given without trouble, such as on our trips to amusement parks, where the “wheelchair entrance” saved Nicky from an hour waiting in the heat and the sun, and the brilliant adventure on our cruise to Alaska, where the room Nicky and his dad stayed in was humongous compared to the closet my husband, Connor and I slept in. It was hilarious. Nicky’s room, since it had to be wheelchair accessible, was easily 4 times bigger. Nicky could not even “enter” our closet room with his wheelchair! I am not complaining, mind you, we just laughed and laughed about it, and made a mental note that on our next cruise (thinking positive, not if we’re going, but when), we’ll make sure we get a room with Nicky, ha ha.

13139312_893935740717815_4373264015474544403_nThe point I am trying to make I suppose, is that life hands us raw deals, and we can either laugh or cry, and while I am not sitting here telling you I’ve never cried, nowadays I try my best to enjoy life, enjoy the little things, enjoy the moment, take it all in. Nicky would be the first person entitled to cry, complain and bitch about stuff, but he never does. NEVER. He’s been my greatest teacher.

With so many nastiness, ugliness, hatred on Facebook, I want to make sure I post none of that and relate happy news as much as I can. We all need to know the world CAN be good at times, right?

This world is crazy, isn’t it? Not a week goes by that there isn’t a shooting somewhere or some sort of violence ensues. And I am not even “giving in” to the election crazy train that has people from all walks of life incite hatred. As if a post (or multiple) on Social Media is going to change any of your friend’s minds! The only thing that changes when I see these kinds of posts is my opinion of them (sometimes drastically) and the fact that I end up “unfollowing” them. I don’t need to have my feed filled with hatred, sorry. The sad thing is that their hatred changes nothing, it just raises their blood pressure and gives them a headache. I will pass.

There is so much suffering in this world and all we need is kindness, love, and some badass cure for EB. That is what I think about all the time. As an Italian saying goes: “Finché c’è vita c’è speranza.” Which translates into: “Where there’s life there’s hope.”

Enjoy your summer everyone! I will try my best! Gelato, here I come!