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Why I Contemplate the 'Now' and 'Then' as the Parent of a Child With a Disability

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Recently, I have been really thinking about the now and then, meaning life and death. I cannot lie, it is deeply horrifying for me to even fathom and it bothers me just as deep to think about. I saw a post shared on Facebook awhile back from Mombie Needs Coffee titled, “Will I Die Before My Special Needs Child or Will He Die Before Me? Both Scenarios Equally Terrify Me,” and it made me go back and read my own blogs from 2014: “Life Expectancy…Do you wonder? Do you ask?” and “Not all moms share the same secrets.”

About a year after I wrote those blogs, my mom passed away suddenly. I remember standing in the waiting room at the hospital after she was gone thinking,

“How could I explain this to Kerstin?” 

“Will she understand that she would no longer see her Granny?”

Even when we are fondly looking at pictures of mom, I wonder what she’s thinking, seeing her in pictures but never seeing her in person even when we have family gatherings.

By now, we have all seen the news coverage of the January helicopter crash that killed Kobe Bryant, his daughter and seven other people. My thoughts go out to all of the victims and their families. This tragic event got me to thinking once again about now and then. Hearing of the parents onboard, dying with one of their children. I thought of them having partners or spouses and possibly other children at home. That meant that those left behind had other children to look after. It also made me think about single parenting; what if one of these people were a single parent and left behind a child to be cared for by others? Or, if they had been single with only one child and their child was onboard that flight too.

I don’t know if it’s natural to think about it like I have so many times, that whenever that times comes, I do not want to be left without Kerstin and I do not want her to be left without me. Sometimes, I just keep selfishly thinking that the two of us dying at the same time would be better. Better for who?  For that to happen, it would probably be sudden and tragic. That ending would be one that is sure to devastate our family and friends.

You see, I cannot imagine a life without Kerstin and I cannot
imagine her life without me. Will she be cared for the way she is used to? Will others have the patience and understanding that I have grown to have. She needs around the clock care for all her
daily living needs.  I will not lie — it is no easy journey.

I am not sure if this is something “typical” families think
about on a regular basis or if, at all.  They may not even prepare beyond wills and life insurance in the event of their own
demise. Raising a child with a disability leaves parents thinking of the daily to dos of doctors, specialists, school, therapies…then there is their life insurance and that of the child, wills, guardianship, power of attorney and quite possibly some things that I cannot even think of right now.

We want to make sure that they enjoy and are good and kind beings. We do all of that, all that we can to make sure our children are loved and cared for. Life is for living — the easy and hard.  We must navigate the hills, curves and valleys as we approach them.

A mother is taking a picture with her daughter who uses a wheelchair.

Do you think about the now and then? Tell us in the comments.

Photo submitted by contributor.

Originally published: April 5, 2020
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