Tag Archive | Self Care

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.

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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.