Autism Spectrum Disorder, Autonomic Dysfunction, Chronic Illness, Chronic Pain, Dysautonomia, EDS, Invisible Illness, POTS

a chance encounter with an angel in disguise


A few years ago, we were on a family vacation on the Outer Banks of North Carolina.   It was a hot week.   We rented a condo on the intercoastal.  There was no cross breeze on the deck – even with a fan blowing on us it was completely miserable.   The heat was stifling and not conducive at all to POTS (postural orthostatic tachycardia syndrome) on this trip.

It took a little bit to convince my daughter, Emily, to join us on this trip.  Our family vacation the previous summer in Ocean City had been extremely hard on her, and she did not get to do very much.  Just like I had told her the year before, my ration of thinking was that she could do what she does at home and enjoy a change of scenery.    Just like the year before, she agreed to go again.  On this vacation, the port and iv saline infusions were new to all of us.

For some reason, her cane did not make it into either of the cars, so my husband wanted to run into a drug store to buy her one to use on this trip.

A very elderly man noticed my husband quickly walking towards the front of the store carrying a cane, clearly not the person in need of a walking aid.   He started the conversation with his observation that he noticed he was walking with a cane and shared that his older, adult daughter was living at home with him.   She was disabled and completely dependent upon him for survival and keeping a roof over her head.   He was so worried about her future after he had passed away, and what would happen to her.

A quick, brief message to pick up our heads and look way ahead to the future.

There was a little more conversation between the two of them, but that was the gist of a very quick exchange between the two.   Wow.  What do you say to something like that?   We were so completely engulfed in adjusting to this new life and trying to find specialists who were able (and interested) in helping her, that it had never been something we had thought about or even considered.  It also became something that stayed with the both of us, and something that we started to become concerned about.

This became the last thing we both thought about as parents each night when we lay our heads on our pillows.

What was going to happen to our daughter after we are gone?   at the current time, she is unable to work, drive herself to doctor’s appointments, or pay the medical copays.   How do we do everything that we can to ensure that she always has a roof over her head, so that we can both eternally rest knowing that is covered, and hopefully she will not someday become homeless.

How do we (hopefully) avoid the day when we find one of us having the same conversation with a much younger parent someday?

Over the last year, we have spent some time working with attorneys in the disciplines of estate planning and disability.   the home we currently live in is our forever home and that will (hopefully) never be a problem for her when “that day” does come.

Check out our story recently published in the online magazine “Uncomfortable Revolution”.

great resources are here:

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