I found this at Are We There Yet?, a blog written by a woman whose son has Ataxia-Telangiectasia, a rare degenerative neurological disease that degrades his body and mind, makes him prone to cancer, immune problems and will eventually kill him. I cannot imagine the grief she has to endure in raising a son who will never reach adulthood.
I've posted this in hopes that it will help people know how to react to those who are dealing with difficult situations.
I wish you would not be afraid to speak to me about what is going on in my life, and to ask what you can do to help.
If I cry or get emotional when we talk about them, I wish you knew that it isn’t because you have hurt me. The fact that I have suffered has caused my tears. You have allowed me to cry, and I thank you. Crying and emotional outbursts are healing.
I wish you wouldn’t pretend that nothing is happening to me, because it is a large part of my life. I need my friends and family by my side.
I will have emotional highs and lows, ups and downs. I wish you wouldn’t think that if I have a good day, my grief is over, or that if I have a bad day, I need psychiatric counseling.
Grieving and what I’m going through is not contagious, so I wish you wouldn’t shy away from me.
I wish you knew that all of the “crazy” grief reactions I am having are in fact very normal. Depression, anger, frustration, hopelessness, and questioning of values and beliefs are to be expected during and following what is happening to me.
I wish you wouldn’t expect my grief to be over if and when I appear to be smiling or happy.
I wish you would understand the physical reactions to grief. I may gain weight or lose weight…sleep all the time or not at all…want to surround myself with business or be all alone, all of which may be related to my grief.
A birthday, anniversaries of big days, holidays, and the day I found out, are all terrible times for me. I wish you could tell me that you are thinking about me, and if I get quite withdrawn, just know I am doing my best to cope. Please don’t try to coerce me into being cheerful or tell me that it will be better soon.
It is normal and good that most of us re-examine our faith, values, and beliefs throughout this journey. We will question things we have been taught all our lives, and hopefully come to some new understandings to include those with God. I wish you would let me tangle with my religion, opinions, and beliefs without making me feel guilty.
I wish you would not offer me drinks or drugs to ease the pain. These are just temporary crutches. The only way I can get through this grief is to experience it, and sometimes immerse myself in it. I have to hurt before I can heal.
I wish you understood that grief and difficult situations change people. I am not the same person I was before I experienced it nor will I ever be that person again. If you keep waiting for me to “get back to my old self,” you will be frustrated. I am a new creature with new thoughts, dreams, aspirations, values, and beliefs. Please try and get to know the “new me”…maybe you will still like me.
**This post was altered from the original to correct a misspelling of Ataxia-Telangiectasia.