Being a parent to a child with significant disabilities is very difficult. But one of the most difficult things early on is wondering whether your child will live or die.
How many nights have you gotten up multiple times just to make sure your child is still breathing? How many times have you sat in a hospital room, clutching your child's hand and praying that they will stay with you at least a little while longer? How many times did you look into their innocent eyes and feel the tears pooling in yours because of fear, fear for their survival?
I've been there, and actually still go there from time to time, as I am sure many of you do. Each seizure, each illness, each pale face and dark circled eyes shakes loose the fear that we try to tuck neatly away in our hearts.
For me, Ashley has survived. She has done what all the doctors said she couldn't do - live. She has definitely had her serious illnesses and her brushes with death, but she has kicked that reality to the curb and is today a pretty healthy and definitely vibrant teenager.
And I find that my fears for her survival have shifted to fears for my survival, and the knowledge that I will one day have to leave her.
Ashley doesn't and probably never will understand the concept of death. If I even leave the house for an hour to go grocery shopping, she is signing and asking for me constantly. And, she will refuse to go to sleep unless I kiss her goodnight. What will she do when I can't give her those kisses anymore?
I know this is a very dark post, but that is where my mind has been recently. Rather than the fear of Ashley leaving me, I fear my leaving her.
There aren't many places a person with deafblindness and medical issues can go as an adult. There aren't many people who even understand her disability. And there are definitely not people who will provide loving care, or even appropriate care, for her.
Though she may not be able to label her feelings, she will feel total abandonment. She will not undestand and she will probably be angry. Those feelings will translate into behaviors that others will not understand and will not support. That lack of undestanding will cause people to make decisions about her that I know deep in my heart will not be good.
Just before I adopted her, her doctors wanted to institutionalize her. If that had happened, she would in no way resemble the person she is today. But does her future without me hold that same threat of institutionalization? If that comes to be, she will lose herself and her life will become my worst nightmare.
I don't have any answers. This post really has no point other than I needed a place to voice my fears lest they totally consume me. Enough for now....