Getting On With Your Life...and Other Myths

Whether your child (or adult child) is disabled from birth or becomes disabled as the result of a life altering event, there is never a shortage of well-intentioned advice givers. Every parent instinctively makes a lifetime commitment to their son or daughter's care because it is simply the right thing to do. Obviously, this takes an enormous physical and emotional toll. Friends and family are often at the forefront in offering suggestions on ways to cope.

Most often repeated advice: "You need more help..."; "You need to get on with your life ..."; You need to get closure..."; and "You need to plan for a place of care when you are no longer able to do it yourself...." Everyone is often long on advice and short on direct help or substantive relief.

Yes, we do need more help (hired, of course), but in whose hands would you trust your child? Yes, we need to get on with our lives, but our child IS OUR LIFE and we choose to embrace that life with passion (it just doesn't look like every other person's life). Yes, we are told we need closure surrounding trauma which we witnessed and live with daily, but closure is an impossibility and we choose to embrace what IS; you don't just get over it. And yes, when caregivers get old, you need a plan for your child's care, but "not being home with mom and dad" is neither a passionate nor a compassionate plan for the future.

So, we have each other as a family and we will endure. We are happy with a warm cup of coffee and kind words and your presence. "Love is simply being there when you don't have to......."