by Cari Cornish
I once lived in a lively forest. A forest full of robust foliage and critters. My daily life revolved around caring for our beautiful, disabled daughter.
She was a joy to care for. Sweetest personality in the forest!
She was born with a rare disease, and we were told when she was just two years old that we would have to say good-bye prematurely.
We grieved, but somehow we foraged a fulfilling life for our family. We had another child. A son who was as devoted to his big sister as a brother can be.
We adjusted our lives, and Jessie became the center of this forest.
There were medications to be given and special food to prepare. Diapers to be changed and baths to be drawn. Doctor visits were a regular part of our life.
I juggled this and a small law practice along with all the ordinary aspects of caring for a family. I knew how to manage this forest.
Now I am in the desert. It is the silence that cuts through me.
What I wouldn’t give for a face to wipe or a cry to console.
The desert is bleak. I have lost the ability to manage even the smallest of tasks.
It is hard to get up in the morning to this desert. I miss the lushness of the forest.
People that know us think that the forest was difficult and that things should be easier now.
Caring for a special needs child is work, but it is not a chore.
I want the people around me to know how much I miss the forest and that things have changed so dramatically that I often don’t recognize my surroundings.
I know that the forest is gone. It only lives in my dreams and my memories.
The desert is today. I must go forward and learn to navigate its boundaries.
I don’t have the proper tools yet, but I’m getting there.
Cari is the mother of Dylan and Jessie. Jessie had a rare disease, MPSIIIA, and passed away in 2015 at the age of 13.