“We choose what we choose. I can smell the Jasmine in the hills.” The old wise man sitting on the Night Train to Kathmandu
The leaves crunched under our feet as we walked the trails in the state forest. Who knew honey colored Timberland work boots were manufactured to fit such small feet. Four of them stepping over stones, roots and branches. Scott had a brother now. There was the occasional trip and fall and right back up again. The out of doors makes one hearty. There is nothing like the vista as a reward for climbing a peak no matter how small. This was the first camping trip I remember attempting with a child who required continuous overnight feeding. I can’t wait to tell you hear how much fun we had.
The tent was missing a stake, but before long a substitute was created from a stick with a jack knife. A woven rug outside the tent removed the woods from our feet. A burette hung from the center pole and the clear tubing extending from a rotary pump on the canvas floor across the small sleeping bag where Scott would be sleeping right next to me. I am sure this sounds familiar to some of you. An orange extension cord ran from the car to the tent to supply electricity to the pump that would be feeding Scott all night. A tiny electric flashlight with the shape of a Coleman lantern dimly lit the cosy space.
After the excitement from the hike up to the lookout, eating from mess kits and enjoying a campfire, there was much giggling and wiggling as I helped my sons to bed. It must have been 9pm before the troops were settled. Prayers were said, the pump was turned on, I sang a few children’s songs and all was well in Zion. I thought.
About midnight I awoke to the smell of stomach acid. Great! A leaking connection or a gastrostomy pulled out. Did I bring the stylette? The details are foggy like my head at the time, but supper half digested was evident by the cold slimy feel as I ran my hand under Scott’s belly in his sleeping bag. I saw that the level in the burette was higher than when I went to bed. Oh brother! I was pumping this little boy’s stomach. I quickly re-taped the connections, opened the flow of glucose to replace what I had taken, checked Scott’s breathing, and placed Scotty on a towel and cleaned up the best I could. After checking the direction of the tubing through the pump literally 10 times, I tried to get comfortable again, but the smell and the guilt kept my mind doing gymnastics. I was so happy to see the glow on the tent walls that marked the sun rising to rescue me from this hell.
After the boys’ morning pee (all of them including dad) on a tree not far from the tent, the boys dad prepared the fire and I cooked breakfast. Ok, I admit it. There is nothing like the smell of bacon on a campfire. Yum. Eggs…not so much.
It was time to wash up. I tied the special toiletries apron made from dish towels around each boys’ waist. The bottom third was folded up and sewn to create “just right sized” pockets for toothbrushes, paste, soap etc. Nothing had to be put down on dirty surfaces in the latrines. Woods dirt and bathroom dirt are two different kinds of dirt in my book. We started our short walk to the cement block wash house.
Exhausted from no sleep, the acrid smell of stomach acid lingering in my nose, feeling like I have a layer of sweat and dust between my underwear and my skin, thinking about the work to clean everything up when I got home were clouding my vision. I attempted to sound enthusiastic about the beautiful new day, the sun shining through the trees and the smell of pine needles. We exhaled with our lips pursed so we could see a translucent stream of condensation flow from our mouths. Science lessons abound in the wild.
As we approached the low impact color cement block wash house, bugs lay dead on the ground, others hung from the spider webs near the yellow bug light outside the entrance, and the slow creak of the screen door to the latrine echoed through the air like a scene from the Adams family. I remember it as clear as if it was yesterday. The kids steps were two to my one and Scott exclaimed with glee, “Mom, we are having so much fun! ” I threw my head back and laughed out loud!
Lesson Learned: Children view their world with fresh eyes and curiosity.
I love your writing style! And I love camping, perfect combo. I’ve never heard of GSD, but I can tell families who are dealing with this, will gain alot from your blog. I’m sure you’ll be encouraging them beyond their own 4 walls – camping, indeed. 😉
Keep up the great work. I hope you’ll be putting out some books at some future date. Have I told you I love your writing style.
Thanks for your encouragement. I do want to write a book about my experience at some point. Glycogen storage disease is quite rare, but I believe stories of people who have lived with chronic disease can help others on similar roads not feel so alone.