For parents of a special needs kid, thinking about that unavoidable time in the future when they will no longer be around to love, care for and keep their child safe is overwhelming!
Envisioning our children's futures without us in it produces such devastating emotions that we'd really rather not think about it.
However, it would be negligent and even cruel if we did nothing to prepare our special needs children for our eventual deaths.
Since my daughter Bethany functions like a two year old even though she is an adult, preparing her for a future without her dad and I is proving to be not so easy.
She cannot comprehend what death and dying really mean.
She's never lost a pet or a loved one before.
Her only experience with death is seeing dead animals lying motionless on the side of the road.
As sad as it is to think about, some day Bethany will wake up and be shocked and devastated that my husband and I are suddenly gone from her life.
In our meagre attempts to help her understand and someday cope with our absence, we have begun letting her know that someday mommy and daddy will die and go to heaven to live with Jesus.
We've tried to explain that when that happens, we won't ever be able come back to see her again.
But other people will come to live with her, help her, play games with her, take her to her activities, and love her.
As part of preparing Bethany for her future without us it's also very important to my husband and I that we do everything within our abilities to help her to become as independent as possible.
We believe it's essential to her future wellbeing that she experiences and accepts other people helping her do the things that she will never truly be capable of doing alone, like preparing her meals, taking her medications, shopping, and assisting her in the bathroom.
And, as heart breaking as it is to think about, we also need to gradually become less involved in her everyday life.
Imagining that time in the not so distant future, when my precious, beloved Bethany will not be right by my side every day is almost too much for me to bear.
But for her sake, it’s a good idea to eventually even stop living with her.
My husband and I have a plan to purchase a duplex home where we will, for now, live in one apartment with Bethany while we continue to prepare her for life after we die.
As we gradually spend a little less time with her and let others begin caring for her, my husband and I will move into the other apartment.
We will continue to spend our days with her, but will hire a caring professional to spend the nights with her in her own apartment.
I wish my husband and I could live just one day longer than Bethany so she will never need to live without the care, and protection of the parents who love her beyond measure.
But since that's not likely, the next best thing we can possibly do for her is to gently and lovingly prepare her for our eventual deaths and to equip her to be as independent as possible.