Decades ago, maybe even the last time Patti
‘walked’ into a church, we had a Christmas tree lit with all purple lights. Our
young daughter, along with all the children, was invited up to the altar to
talk about Christmas. Long story made short the kids were asked about Christmas
lights. When Megan offered purple, the minister corrected her pointing out there
is no such thing as purple Christmas tree lights.
A harbinger of what she would face in school
when teachers would mis-teach Multiple Sclerosis either working from out of
date textbooks or sharing mild MS as an example.
It would not be until her senior year of high
school that Megan actually had a teacher who personally knew what growing up living
with severe MS was about. She, like Megan, had spent her youth with a Mom in a
wheelchair dependent on others.
Lack of awareness by others is part of living
with MS as a family, affecting not only the mysterious diagnosis but equally
significantly the daily life of all family members.
Holidays are a good time for common denominator
examples. ‘Normals’ put a tree in a stand and admire, while living with MS you discover
you need to secure the Christmas tree as stable as a grab bar. Patti has pulled
more than one tree down on herself while trying to be involved. For years I secured
our conventional tree stand to a square of 3/4” (19 mm) thick plywood. Several
years ago I simplified and bought a 30 lb (13.6 kg) steel stand with a leg span
of almost 3’ (.9 m) made by Bowling Enterprises of Bear Lake, MI.
Being no longer able to stand, legally blind, failing
eye hand coordination, and down to use of only her right arm - were you to
overhear our ‘assisted’ decorating you might be surprised at the laughter of
involvement.
Purple is not only Patti’s favorite color but a
combination of contradictions, hot red and cool blue. Perhaps not traditional
Christmas but then again living with MS as a family we jumped that traditional
track long ago.
Caregivingly Yours, Patrick Leer
videos: www.youtube.com/daddyleer
I like the purple lights on the trees, very unique! However the tree gets decorated (assuming it stays upright) it is all good for continuing to make memories in a family where all our loved! Keep making those memories Patrick and Patti and Megan!
ReplyDelete(taking a bit of a blog break, Patrick; wishing you all a joyous Christmas season and day!)
betty