Monday, December 13, 2004

We are NOT the Cratchit family

Sunday evening was disappointing. We hoped to wrap up holiday lighting and decorating. Patti was in a rotten mood when I picked her up and unable to associate any particular reason. MS fatigue was apparent and transferring was difficult.

Negative energy seemed to snowball. I felt more like a cowboy than a caregiver herding tasks into available time. Patti’s ‘wants’ to get back and go to bed rapidly deteriorated into demands. Total elapsed time: 2 hrs 30 minutes.

Obviously this particular holiday season is under unique pressures and seen through a different emotional veil. Living with MS in the family has always been challenging. While Patti is safer and better cared for with 24/7 attended institutional care, family dynamics are puzzling.

Last year, home caregiving had reached such an overwhelming level that a Christmas tree was brought in but never even decorated. If one gauges life in terms of completion of Christmas tree decorations than this year is better than last <grin> even though downsized and forced.

Living with MS in the family, or living with any disability or physical challenge can be so frustrating trying to find peace in the holiday season. Health is so underappreciated and taken for granted by so many. With progression you can find yourself outside looking in and challenging some basic premises.

Christians celebrate the birth of Jesus but forget his adult life when he expelled the merchants from the Temple. In Christianity the body and mind is the Temple. How ironic that the merchants have turned the celebration of Jesus’ birth into the super bowl of merchandising.

I wonder if the warm and fuzzy “Tiny Tim” is a help or a hindrance? “Tiny Tim” has enshrined the disabled in the pantheon of holiday characters.  Charles Dickens himself suffered from epilepsy; but did he really know much about the challenges of living with a physical disability? We are NOT the Cratchit family.

Fortunately there IS Santa Claus  …. (or I would have given up long ago)
     “Yes, Virginia, there is a Santa Claus … He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy. … in all this world there is nothing else real and abiding. … “ Francis P. Church

1 comment:

  1. The tree is lovely and I am sure Patti will enjoy it.  I am sorry your evening was difficult, I honestly don't know how you do it.  The journey is hard and for me, it can be very lonely.

    Hugs to you and your family.



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