When Ariana was born I was handed a pamphlet and on that pamphlet in big bold black letters I read “Down syndrome life expectancy”. My little girl was about 3 days old and I was already being told how long she would live, what kind of life she would have, and what she would be able to and not be able to accomplish. 

Not very long ago in 1983 a person with Down syndrome life expectancy was only 25! Now that life expectancy is 60. 

I found a life expectancy calculator online, based on your age and gender it gives you an idea of how long you’re expected to live. Of course this is just a loose number. Health, life style, and family history plays a big part in that number.

Life expectancy calculator https://www.ssa.gov/OACT/population/longevity.html

Based on my age and gender I am expected to live up to 86 years old. America’s average age for a woman in the US is 81 years old. 

So say I live to my 81st birthday, Ariana and I will be reaching the end of our lives together. Of course I would go before her, but two short years later we would be reunited. Say I live to 86, statistically speaking I will have to say goodbye to my baby in this life before I depart. 

My biggest and most selfish fear is dying before Ariana does. I have contemplated sharing this fear with the world. No one talks about. I don’t know why no one talks about it. I don’t want to leave the well being of my daughter to anyone but me. I don’t want to have to ask my oldest to take over for mom. I don’t want my baby in a home. I don’t want her to ever be without me. I don’t want to have someone explain to her why mommy isn’t here anymore. Would she understand? Would she still wait for me? Will she expect to see me walk in her door? Would she understand why mommy doesn’t spend time with her anymore…..

So I pray… I pray that I get my 86 years that aren’t promised to me. I pray that my girl gets her 60+ years. But I also pray that I don’t go before her. That was as hard to write as it was to say… I don’t ever want her to have to experience losing a parent or a sister. I don’t want that pain for her. I don’t want that loneliness for her. 

And maybe I’m not giving her enough credit… maybe she will be okay! And maybe she will understand. 

But that’s where I stand right now, soaking deep in my selfish fears.

And that’s the raw truth.


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