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By Julie McLellan-Mariano, CT

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I confess; as a girl from New Orleans, my active imagination served me well.  It helped create many memorable Mardi Gras seasons for Barbie and Ken.  But it couldn’t create my role as a family caregiver or the wisdom that I would eventually discover. 

As a girl, I could also imagine myself as “DJ Hot Flap Jacks.”  But I couldn’t imagine my son falling down in a bathroom, being unable to roll over, stand up or walk out.

I never imagined that my oldest son’s life would include: congenital stenosis of the spine, c3/c4 quadriplegia, 9 weeks of inpatient hospitalization, months of physical therapy sessions and countless disappointing (i.e., there wasn’t an instantaneous miraculous recovery) rehab sessions.  Or 11 subsequent surgeries, countless UTIs, chronic nerve pain, bed sores and inconsistent home health care.  Or his abrupt, new and unwelcomed reality. Or the endless parade of questions:  Why him?  Why not me?  Why does anyone have to endure this? Why isn’t there a cure?  HOW DOES HE GET THROUGH THIS?  HOW DO WE HELP HIM?  How do I continue to be Mom to my other children, wife, employee, daughter, sister, sister-in-law and friend?

Sure, DJ Hot Flap Jacks could imagine a perfect playlist for Mondays, but I couldn’t imagine my life defined by so much anger, cognitive and anticipatory grief.  I didn’t know those concepts were hallmarks of my caregiving; honestly, I didn’t even know what those concepts were! And I certainly didn’t recognize the mourning process playing out right in front of me. I did know, every day, I was battling the loneliness, misconceptions and finite boundaries of caregiving.  So much for taking the high road!

When I eventually realized “these are the cards I have to play,” more obstacles greeted me  And they brought their friends:  unemployment, menopause, the 2008 financial crisis, death and check fraud.  But wait, there’s more …who can forget the repetitive challenges to faith, mission and family?


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