Climbing Rivers: Adventure Is Out There, And I'm Determined To Find It

I shift my feet as I inject the last syringe of medication into my bag of TPN. It’s ten o’clock at night, the end of an incredible day with my family; we drove halfway across the state to see one of my best friends, explored the campground where they keep their camper, and drained blue cotton candy out of my G-Tube. Now here I am, five hours away from home, setting up TPN on the bed of an RV. I’m nauseous from the faint smell of burgers and hot dogs, and a teeny-tiny fluff ball of a dog is sleeping on top of my feet. How the heck did I get myself into this situation?

Earlier today we packed the car full of our bags that we needed to take on our annual adventure. Every year since 2009- for the exception of last year when the family road trip was my family driving out to see me on Easter in a hospital across the state- we pack up and head in a general direction. My family doesn’t believe in knowing exactly where we’re going to sleep or where we will go next. So we wing it. I've gone on road trips since I've had medical issues. For example, we traveled to Niagara Falls where I toured in my shiny, new wheelchair. But never to this extent. This year is the first year we’re road-tripping since I've needed extra baggage like TPN, tube feeds, and a million other things that make leaving home an endeavor in and of itself.

2009 trip ft. my shiny wheelchair

As I stare at the fully jammed car it hits me the amount of supplies it takes to keep me alive for just three nights. The contents of my supplies are as follows:

1 bag of assorted candy (duh)

1 wheelchair

1 sharps container

1 biohazard bag

1 huge backpack full of medical supplies that don’t need to be kept sterile-

2 knee braces

1 wrist brace

3 ace bandages

1 box of KT tape

6 tube pads

1 roll of PressNSeal

1 gigantic cardboard box containing-

4 sets of IV tubing

4 sterile syringes

18 needles for injecting into TPN

4 formula bags

3 sterile caps

8 saline syringes

6 heparin syringes

2 Sorbaview dressings

1 dressing change kit

1 cap change kit

10 needles for my injections

3 enteral extensions

4 batteries

1 Cadd pump charger

1 Infinity enteral charger

1 backup enteral pump and charger

4 enteral syringes

1 box of alcohol wipes

4 Farell bags

1 container of Clorox wipes

8 boxes of formula

1 roll of paper towels

1 huge tub of my medications

and last, but certainly not least,

1 red cooler that holds my life-source:

3 bags of TPN.

The cooler also holds 7 syringes of medications, and two vials of my injections.

All these supplies for three nights.

I now also realize that the car is made up of 95% medical supplies, and that I only have one bag that isn’t medical, and it’s full of clothes. Because of all this extra baggage we need to stay in a hotel that has a refrigerator, ice machine, table, adequate air conditioning and the usual two beds and sofa bed for our needs. This requirements make our spontaneous adventure of a trip a little more tricky than the average family trip.

So why leave the house to drive somewhere I've never been, to try to find a hotel that fits my needs, to spend hours in a car that makes me feel sick, to go through all of this just to go on a road trip?

One word: adventure.

I don’t want to spend my days at home, pent up inside because leaving the house is hard to do.

I refuse to let my health hold me back from going out into the world and having a great, big adventure.

I want to feel the excitement of pulling out of the driveway on the beginning of a trip, knowing the best is yet to come.

I want to take chances, even if it means I may end up tired and grumpy and in a not ideal situation.

I want to feel the wind on my face as we cruise down the highway, with a feeling of uncertainty and adventure looming in the air, since I still don’t know quite where I’m headed.

I want to stop on the side of the highway to take pictures of the valley below.

I want to see new things, meet new people, visit new places.

I want to explore the world.

The Pennsylvania Grand Canyon

Getting to experience the world beyond the walls of my house and the hospital is worth the struggle of lugging my extra baggage around. The only thing that will ever hold me back from going on a trip would be my mindset. As long as I have my determination, my family, a cooler, all of my seemingly endless medical supplies, my dad’s excellent packing skills, and a little planning, anything is possible.