Monday, January 12, 2009
Denial Part 2: I Can't Accept My Child's Deafness
I've changed my tone. I am desperately trying to understand this mother's pain and convey certain fundamental messages regarding disability. I started my Italian blog with the Special Mother Poem, so that parents would focus on the positive and not be consumed by the guilty, nagging feeling that they were in some way responsible for their child's deafness.
This mother flat out said that she does not accept her son's disability. She talked about an experience with her son's coach:
...The coach asked a question to all of the children and expected they answer. After many children answered, one child refused to answer and the coach said, "So can you not hear me because you're distracted or because you're all deaf?"
The coach doesn't know that my son is really deaf. I never told him.
Why? The truth is that I don't want him to be treated differently than the other children. I lie to everyone because first and foremost I lie to myself...maybe this is the real problem.
Please forgive me, I am not trying to insult anyone, but only here do I feel able to truly express myself, and not to fake or always say that everything is okay...
I realize that it is not easy to understand my point of view, maybe because there really is no logic to it. I have these disconnected and illogical thoughts that come upon me unexpectedly and without warning.
There are times when I feel this incredible sense of strength and I'm ready to fight for my kids and then there are these moments of total desperation where I am so totally ashamed of myself.
I have tried to examine myself in these two days that I have been writing to you and the truth smacked me in the face. Not only can I not accept my son's deafness, but I hate the idea of accepting that my child will never be totally the same as other children...And you know? Writing this is not easy. I am ashamed of myself and I so wish that these thoughts about my child would never have surfaced.
While at first the people responding to this mother's post were a bit on the harsh, "pull yourself together" side, now the commenters are being a little more empathetic. This is a MAJOR cry for help. These cries for help are always present on the support groups and are totally normal. I went through these periods where one minute Jordan made incredible progress and the next I felt like he would never speak a word again. The down moments are so totally down, especially when you are alone. Her husband provides no emotional support, he's in denial as well. She lives in a small town where she has never seen another deaf child. She is alone. And she is reaching out.
I won't say "I understand your pain and you have every right to be in denial. Your son is Deaf-what a tragedy!" That is so not what I believe. However, I remember all of the times I said to Luca, "Honey, I'm taking a walk. Be back in a half hour and I'll be a much better mom to my son. Good luck to you." I went for my walk and I breathed. God, I was totally alone and even more isolated by the language difficulties. I think I ate a lot of gelato in that period.
Every day, I read the mothers' cries for help on the support groups and after ten replies from parents who have "been there, done that" they begin to see what is beautiful in their children. They focus on the positive, not the negative. It is a long journey and a very difficult one without support. The more support this mother has, the stronger she will become. Jordan has taught me many lessons in patience and faith...this mom has no idea how her life will be enriched by her son. Once she begins to overcome her sense of guilt, now that she is reaching out for help, she will begin to understand that she is a Special Mother, too.