16 and a half years ago when Patti’s first major MS exacerbation left her knocked out of the ‘hands on’ side of parenting we discovered a book, “Mainstay: For the Well Spouse of the Chronically Ill” by Maggie Strong.
One ‘lesson learned the hard way’ in Strong’s experience as both a parent and a spouse caregiver whose husband had MS was that the immediate needs of the child must be the focus of the family and not the chronic illness. … While that may sound so logical, yet so many times over the years MS has tried and tried again to demand the center of attention, resources, and focus.
Frankly it has taken much sacrifice on Patti’s part to place being a Mother FIRST, and chronically ill SECOND. With the progression of Patti’s physical and cerebral symptoms and as the spouse caregiver and basically single parent it has been a delicate and often unfair balancing act of time and resources. Megan has certainly faced unusual personal challenges along the way. However, we have stayed the course and tried to keep our family focus on the immediate needs of our daughter.
… You can’t sit through a graduation ceremony and not drift into memories. I’m obviously showing my age and counter culture streak but even with “Pomp and Circumstances” playing over and over; the Grateful Dead lyric “… lately it occurs to me, what a long strange trip it's been … ” seemed oh so appropriate. <grin>