“FEAR is an acronym in the English language for ‘False Evidence Appearing Real.'”~ Neale Donald Walsch
Grant’s army-green duffel bag was bulging at the seams and his cornstarch for the week was meticulously measured into coin envelopes and tucked into a Clark’s show box. I always save Clark’s shoe boxes for this purpose. They are so sturdy….the shoes and the box. Somehow organizing these envelopes in neat rows made me feel better about allowing Grant to go to Camp Quinapoxet alone. His brothers had paved the way, but I am not sure if that was a good thing. They were all good fire builders and let’s just say… they were creative. But that is another story.
I helped carry a few odds and ends into the camp site where all the tents were on platforms. The air smelled like only a woods can in New England in July. The heat of the sun drew the smell of the pine needles into the air and the sticks and twigs snapped under my hiking boots. The scout master’s living quarters were situated in the middle of the site. No surprise, but Grant was assigned the tent next to the Scoutmaster.
At home I had been working diligently helping Grant to be independent with his night time regime. The scoutmasters wanted to circumvent any issues that could be avoided, so they took the responsibility for giving Grant his cornstarch at night. I had to acquiesce, because they were in charge of over twenty boys and avoiding a possible life threatening situation was key. I felt guilty about someone else having to get up in the middle of the night to do what I did every night of the week at 6 pm, 9 pm, 1 am and 5 am.
The trip home was quiet and took much longer than the trip there. I prayed everything would go well and that I would use the opportunity to get some much needed sleep. Dropping a child off at camp when they have glycogen storage disease requires faith and trust.
Just recently, 16 years after this event, the scoutmaster to whom I entrusted my son told me this story. He said he set his alarm carefully every evening. One night he woke up without the alarm. He opened his eyes and there was a bright blue light illuminating the tent walls from the exterior that appeared to be the light of day. He was immediately panicked. He did not remember giving Grant cornstarch in the middle of the night! His initial thought was ” Good Lord, I’ve killed Grant!” He jumped out of his sleeping bag, threw open the flap, and then realized that the blue light was the glow of a newly-installed bug zapper hanging just outside. It was still the middle of the night, Grant was not yet due for his cornstarch, and he hadn’t killed him after all.
Many of my friends who have been caregivers over the years have expressed fear, anxiety and near misses when tending my children with GSD. They “lived” in my world for a few days. I plan to dedicate a whole section in this blog to caregivers stories…and sometimes nightmares. God bless them everyone.
Lesson Leaned: Things are not always what they seem.
“You can’t use up creativity. The more you use, the more you have.” Maya Angelou
One of my sons with GSD wanted to earn the rank of Eagle in scouting. At the age of ten he started earning merit badges, going on camp outs and taking hikes. There was never a question about if it was possible.
Recently I spoke with one of their scout masters and learned about the one hundred and fifty yard swim that is part of the Swimming Merit Badge required for Eagle. While practicing at scout camp, the scout master related to me that he trailed my son in a boat and periodically checked in to see how he was feeling. The “Village” often stepped in to keep my sons safe when it would have diminished the experience had I been there.
One of the badge’s requirements even today, is to jump into the water fully dressed, remove your pants, and inflate them so that they can be used as a life preserver. My son’s own pant legs were too short to tie around his neck after they were inflated, so he borrowed a pair of jeans from a friend with longer legs. I have seen my son accomplish so many things with creativity and a little help from others.
In sixth grade, one Sunday he was the youth speaker in church. He said,
“All of us have trials in our lives. Some are permanent and some are temporary. We can learn from our trials if we have a positive attitude. My disease is a permanent trial. I am learning to practice self-control because when kids make fun of me, I want to pound their faces in. The kids in my class used to call me names because I am short for my age and my belly sticks out. I had to learn to ignore their comments because they did not understand. Now that I am in sixth grade, the kids who know me don’t make fun of me anymore. Being a child of God helps me understand the things that happen in my life.”
Lesson Learned: “Where there is a will there is a way.” English Proverb
Parts of the preceding blog appeared in an International Children’s magazine, The Friend, in 1990 http://www.lds.org/ldsorg/v/index.jsp?hideNav=1&locale=0&sourceId=95fe86881daab010VgnVCM1000004d82620a____&vgnextoid=21bc9fbee98db010VgnVCM1000004d82620aRCRD
“Be Prepared.” BSA Scout Motto
One Friday afternoon in January the thermometer was dipping below ten degrees Fahrenheit and Scott was loading his pack with long underwear, fire starters and matches. He was going on his first Polar Bear campout! I am half convinced the reason boys like to camp and endure the elements is so that they can play with fire. Excuse me…build fires.
We did not have proper camping equipment for such a night, but his brother Greg was too young to go so Scott took his sleeping bag and planned to sleep with one bag inside of the other. There were Coleman lanterns, camp stoves, cooking equipment, etc. Water was packed in a thermos for the middle of the night cornstarch ritual.
On Saturday afternoon the campers returned. When they came into the house they smelled of sweet wood smoke and looked a shade darker then when they left. The brothers and I were eager to hear the stories. Yes, it was bone-chilling, their feet were cold, but they took turns keeping the fire going all night. The unanticipated hitch was that, “The lid to the thermos with my water for my cornstarch was frozen shut in the middle of the night. Dad had to breath on it to get it to thaw.” Wow! Awesome.
Lesson Learned: You can’t think of everything.