Tap Out

He who controls others may be powerful, but he who has mastered himself is mightier still.” 

Lao Tzu


Uniformed boys peppered the woods.  Young men with dirt smudged faces and tousled hair walked along trails telling stories and laughing.  One boy squatted alone whittling a stick and others gathered around an old wooden picnic table while an older youth demonstrated knots. The sound of an ax striking wood, was muffled by distance and the forest. I imagined myself amid Peter Pan and the lost boys.   It was parents day at camp and I was making an important delivery; sixty carefully weighed envelopes of cornstarch for the last week of camp.  They were stacked neatly in rows in a plastic shoe box for protection from moisture.

The tent where my son’s belongings laid was empty.  He had spent the night in the woods.  I placed the shoe box on his bunk and began the walk toward the ceremony ring.  Tonight was the night of the infamous Tap Out.  Every year several scouts were chosen because of their scouting spirit and were put through an ordeal to prove themselves before being inducted  into the Order of the Arrow. This year my son had been selected.  Scout leaders were concerned about the Ordeal and some alterations were made to accommodate his liver disease and meticulous feeding regimen.

During the day my son had undergone a rigorous day of labor and silence. Food was basic. In spite of the liver disease my guess was the hardest thing for him was the silence.  He was being allowed to participate along side his peers.  He was learning to be self reliant, to believe in his own abilities, to be confident in newly learned skills, to own the power to control his words, his actions and his life.

The council fire was laid by older scouts in a clearing the boys used as a ball field. An old wooden boat was balanced on its flat end and several medium sized tree trunks leaned against it in the shape of a teepee. Smaller teepees were nested within and filled with brush and tinder. The structure stood twenty feet tall.  Parents were beginning to arrive and darkness was encompassing the camp.  The scouts who had undergone their day of silence and labor joined the circle.

The first beat of a drum was abrupt, unexpected and demanded attention. An older scout representing a Native American Warrior recited the story of the order.  A torch was lit, and a scout in a loin cloth raced breakneck speed around the unlit bonfire.  The torch was thrown into the wood and the flames rose up through the timber. The evening breeze carried the flames ever up engulfing the edifice that took most of a day to construct.  Another torch was passed from native brave to brave and to another and another and another.  There was drumming and chanting. My heart beat became synchronous with the beat of the drums.  Scouts who were to be inducted into the Order of the Arrow were one by one pushed from the circle and caught by their peers.  The ritual demonstrated bravery, camaraderie, acceptance, belonging.  Another young scout was on the path to the Brotherhood of the Order of the Arrow.

Lesson Learned: Your child does not have to be left out.

God Bless Alice

“The best laid schemes of mice and men often go awry.”   Robert Burns

The performance was starting in an hour and I found myself doing the usual check.  Children fed and in their sleepers, pump set up clean, rescue supplies available, information about how to reach us and French horn by the back door.  My black dress probably should have been dry cleaned, but who notices what the musicians wear in the pit anyway.

Alice knocked on the front door a few minutes before we expected her and the kids were all giggles and silliness about spending time with the “girl” teenager across the street who knew how to ride a unicycle.  Alice was one of eight children whose mother was a nurse so I always felt confident that if she had problems she could request back up.  Goodnight kisses, two little boys waving “bye-bye” through the back porch window and their daddy and I backing down the sloping driveway on the way to a concert.  Playing my horn was a “filling the vessel” activity for me.  It was a night out alone one night a week, and more during dress rehearsal weeks, to refresh and have a change from the unrelenting responsibilities of raising a family and children with GSD.

Most of the other musicians were already warming up their instruments when I walked quickly to the front of the auditorium to take my place in the horn section.  I noticed my husband found a seat in the mid section not too far from the aisle.  I took my horn out of the case, put the mouth piece in place and blew warm air through the cool metal.  Business as usual.

About 45 minutes into the performance I noticed a police officer walking down the aisle toward the front of the auditorium.  That was weird.  Who needs police protection for a stage play like Oklahoma?  In seconds the police was bending down to talk to me.  The baby sitter needed me.  I quickly left the pit and relayed the message to my husband who immediately left the auditorium to take care of what ever Alice needed.

Back in my seat, I nervously kept playing my part and counting measures of rest.  What could have happened?  3-2-3-4  Did someone need stitches?  4-2-3-4 What did Alice need that her mother could not help her with?  5-2-3-4

I later was told that the boys had been horsing around and Scotty’s gastrostomy had been pulled out.  Old fashioned gastrostomy’s were about 10 inches long and had to be coiled and taped to the skin.  Apparently the tape was not a match for the two pre-school boys doing who knows what. My husband had gone to the pay phone (yes, there was life before mobile phones) to call Alice.  She told him the problem and he talked her through replacing it.

The problem was remedied, my husband returned to his seat in less than ten minutes, and the orchestra played on.  God bless Alice!


Lesson learned: You must care for yourself in spite of unseen risks.

A Trip to the Fire House


“Nothing in life is to be feared. It is only to be understood.”  Marie Curie

“Mommy, what’s happens if there is a fire in the night and the fireman doesn’t know how to unhook me from my pump?”   Compassion rose to my throat and I took my son into my arms.  “Sweetheart, that is such a good question.”

My next response was a pat answer about how they would figure it out and that they would probably take him pump and all.  Then I pictured the safe guards I had initiated to secure the lines filled with glucose for a sleeping, dreaming, rolling four year old.  Tape on the connection between his tube and the main line.  Tape on the bed posts to prevent the tubing from pulling the pump off the dresser.   His Dr. Denton’s sleeper with their custom button hole added near the ankle at the bottom of the zipper where I snaked the tube to meet his G-tube.  He had thought of a safeguard I had not.

The little boy may not know from were this fear sprung (http://www.health.harvard.edu/newsweek/Childrens_fears_and_anxieties.htm) or that the word “fireman” was not politically correct, but he understood the permanence of his nightly infusion.  Never a night passed without the ritual of connecting his gastrostomy to a long line of green tubing and his personal Folkman pump.

The next week my son and I had an appointment with the Fire Chief.  We told him where we lived, the basics about glycogen storage disease and the life sustaining nature of his night time infusion.  We took supplies to demonstrate how to disconnect and secure his G-tube.  Written details were given to this caring man in uniform who time proved would never need to  preform the duties.  In addition, the chief put our home on a registry that guaranteed if the city lost electricity our home would be a priority.  Brief, simple and important.

Lesson Learned: A child trusts you to keep him safe.

My Girlfriends’ Stories

“Friendship is born at that moment when one person says to another: “What! You too? I thought I was the only one.”
― C.S. Lewis

Everyone who has a child needs a break to fill their vessel.  Even a few hours can give a parent a fresh perspective.  If you have a child with Glycogen Storage Disease you need a G-tube to fill yours.  However, I am not sure if Vivonex could give you the lift you need.  Finding people who truly understand the ramifications of late feedings, periods of high stress and feeding aversion is near impossible.  I was lucky to have really great friends who were willing to try.   Following are some of  their experience while tending my children when I was off “filling my vessel.”  The names have been changed…slightly.

“Wonderful Wendy” agreed to care for my two oldest sons who were then 18 month (wild type) and 3 year old  (GSD) at her house while I traveled to Bermuda.  There was the usual paraphernalia that goes with small children with an added pump, IV pole, dextrose, etc.  Wendy told me that the first night she bathed the boys, read them stories and hooked the oldest one up to his pump.   After turning off the light and closing the door she joined her family.  A while later she went back to check on the boys and realized  she did not hear the pump.  It didn’t take her long to realize the electricity for the pump was supplied by the outlet that was controlled by the light switch.  Needless to say, that did not happen again.

“Sanguine Sara” agreed to have my youngest son at her house for a sleep over.  He was a grade schooler so I was still delivering the middle of the night feedings.  I went though the instructions and asked if she had questions. The next day when I went to pick up my son, Sara told me that the middle of the night she woke up and realized she was late for the feeding.  She was horrified.  Her first thought was that she had killed him.  I don’t remember him ever sleeping over again.  I have to admit.  Most of the sleep overs were at my house.

One of my friends is a nurse who is familiar with the rigors and responsibilities of the Intensive Care Unit.  “Piggy Pat” (she collects stuffed pigs)  came to our house to watch the children while we were away.  When I asked her to tell me her experience she said she was so afraid she was going to miss a feeding so she carried an alarm clock with her the entire weekend.

If any of you feel so inclined I would love to hear your stories.  I know I have heard some great ones at conferences; stories even a story teller wouldn’t make up.  Hearing stories of other people’s similar yet unique experiences helps people  know they have company on their journey.


Emergency Department Interval

“Serenity is not freedom from the storm, but peace amid the storm.”

The times of alarm clocks, fear of intestinal flu and trips to the emergency department are in the distant past for me now.  However, I remember some of those trips quite vividly.  I learned early on that letting the hospital know you are on the way is key.  It didn’t guarantee that the attending physician knew what to do, but it at least increased the chances. I understand that now families enter the emergency department with letters of instructions complete with glucose infusion rates and glucose weaning strategy for the attending doctor. Brilliant.  Why didn’t I think of that!  😀

In the early 1980s glucose monitors were not universally used in glycogen storage disease so I was cognizant of mood changes, fatigue, lethargy, sweating, tremors, etc. to detect hypoglycemia.  An hour before I made the decision to take my son to the hospital I called ahead and explained the situation to a doctor in the emergency room. I gave him the phone number of our endocrinologist so he could confirm the information.  My oldest son who was not quite three was not managing to keep anything in his stomach, least of all his cornstarch.  Fever had worn him out and there was no resistance when he was gently wrapped in a blanket and lifted out of his bed to leave for the hospital.

I carried my son through the doors to the hospital and was greeted by a doctor with a butterfly setup in his hand. All I can figure is that my endocrinologist put the fear of God in him.  It was a busy night and all the rooms were full.  An examining table in the triage room had been prepared, the IV was started immediately and bloods were drawn.  It was seamless.

My son slept peacefully with his head on my breast as I swayed back and forth in an uncomfortable waiting room chair.  My eyes were closed but I was acutely aware.  I felt his chest rise and fall with each breath and the warm weight of his baby legs rested on mine.   Filtering through the sounds of beeping monitors, people talking and  babies crying, I heard my son’s pump rhythmically delivering glucose into his exhausted body.  Oddly comforting.

A room became available, the nausea past and the sun rose.  It was a new day.

Lesson Learned:  Peace comes from within.

One Scoutmaster’s Nightmare

“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.

Creativity and a Little Help From Friends

“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


The “Polar Bear” on Nobscot Hill

“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.

Can You Bake a Berry Pie?

“It is simple, come with me.”  The Simple Prince  by Jane Yolen

The smell of a fresh New England blueberry pie permeated our family’s campsite one hot afternoon, tempered by the evergreens that surrounded us.  Out of place, honestly.  Our family prides itself in being unusual in all sorts of ways.  Glycogen Storage disease just adds dimension.

How does one decide to bake a pie in the woods anyway?  Well, it all started with a hike which I chose not to take.  Three boys and their father came running back into camp with the bottoms of their pint sized shirts filled with hundreds of tiny blueberries not much larger than tapioca pearls which is typical of wild blueberries in the Northwest region of the United States.  “Do we have enough!”  The gauntlet had been thrown down!  My kids had no doubt in their mind that I could accomplish this request.  Their concern was if they had picked enough. “It sure looks like it,” was my response.

The boys were eager to get started. They knew from experience that in the woods this would require teamwork.   We needed a fire.  Not just any fire.  We needed a hardwood fire that would burn slow and even for 45 minutes after coals were formed.  Their dad was the master of fire and they were his disciples.  For the next 30 minutes their was wood gathering, reflector oven designing, wind checks and so on.

I always camp with the basics (flour, butter and sugar) and pies require nothing more. The crust was rolled out with a tall tin cup on a picnic table covered with a red and white checked vinyl cloth. The lack of humidity in the air was perfect for pie crust. The kids cornstarch is my thickener of choice for blueberries. I just wished I had known back then that corn syrup should have been my sweetener of choice for kids with GSD. The crust bottom was placed in a round cake pan I had packed for making French toast and filled it with tiny sweet blueberries tossed in cornstarch.  After the top crust was sealed and crimped  I carefully cut vents in the shape of three wheat shafts replete with kernels, the mark of my mother and grandmother.

The pie was placed on a flat rock at the edge of the fire next to the reflector oven made from sticks and aluminum foil.  It was carefully rotated over the next 45 minutes to ensure even baking. It was perfectly imperfect!   Only one side got burned , a little.  “Mom, this is so cool,” commented at least one of the boys.

Living with GSD can be unrelenting.  There is an air of freedom in the woods. Preparing a family to go camping, especially one with special medical needs, is much work, but worth every minute.   Can you bake a berry pie in the woods?  It is simple, come with me.

Lesson Learned: Being successful just outside our comfort zone translates to competence, creativity and confidence in the possibilities of other areas of one’s life.

Camping in October

“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.