Where is the Book?

As I find myself in this place called Midlife, I’ve been reading books and magazines geared towards the mature woman.  You know, books like “The Wisdom of Menopause" (ack!) and magazines like “More” (for the woman of “style and substance”).  What I’ve discovered in my reading is a recurring and predominant theme:

Midlife = Me.

This is best expressed in the following excerpt:

Midlife is when we hear the wake-up call that demands that we start honoring our own needs.  Our children are leaving home or long gone, the time for the kind of self- sacrifice demanded by raising a family is coming to an end, and we now have the opportunity to re-examine our lives.

The snag for me is the part about “our children are leaving home or long gone, the time for the kind of self-sacrifice demanded by raising a family is coming to an end”. 

It’s true that for the majority of people, their children are leaving home and they now have the time, financial resources and ability to try new things, travel to new places and enjoy the rewards of years of hard work raising a family and pursuing a career.  I see this with my own siblings, my friends and my colleagues.

But what about those of us who have children with significant medical/special needs who will never leave home or live independently?  Those of us whose children will require the care and attention of a newborn (and then some) well into adulthood?  The demands of caring for our children have not come to an end and, in my case, likely won’t come to an end until I’m in my sixties or perhaps, even later.  

Twenty years ago, children like Jack didn’t survive into their late teens and early twenties.  The technology that keeps Jack alive today didn’t exist outside a hospital.  Medically fragile children simply didn’t live long enough to become medically fragile adults.

How do I reconcile my desire to honor my own needs or take advantage of the opportunity to re-examine my life with the continuing demands of my child who still has so many needs?  Where is the book that tells those of us with medically fragile/special needs children how to navigate middle age?  More importantly, where is the book that tells us how to do this without the burden of guilt?

I’m tired of reading about how everyone else does it.  I want to know how I’m supposed to do it.

Where is the damn book?