Comments on: I must have been a Buddhist in a past life.

By: Normalyn

Normalyn — Mon, 28 Dec 2009 11:07:03 +0000

I have read about your blog from “Life with a Severely Disabled child” and I guess I’ll be a frequent visitor. I have a cerebral palsy child and I know I love him. But, there are still times that I wish he was not the way he was. I wish he can run and play like other children not for my sake but for his sake. Right now, I just comfort myself with the thought that God still has a wonderful plan for him amidst his situation. I may not fully understand the why now, but I know there is still some good in this.

By: erika

erika — Mon, 21 Dec 2009 23:29:47 +0000

Interesting post, it really made me think. I agree that wishing for something that is not attainable or that cannot happen is futile. Undoubtedly pointless. Is it a waste of time? I don’t know, I guess it is, if wishing is an action that takes up time and energy or if it consumes you. I don’t know, I think it is possible to accept your child’s disability and your situation, yet still wish that s/he wouldn’t have to go through the pain and struggles and suffering that come from her disability. For me, it’s sort of like accepting the loss of a loved one. When you lose someone who you deeply love, you go through the grieving process, come to terms with the loss, accept the situation and eventually find joy in your life again – but the desire to see the lost person will never go away. I gotta admit, I feel a bit “busted” as I’m guilty of offering limbs in exchange of my daughter’s well-being. In excuse of my silliness, I didn’t really believe that anybody would take me up on my offer, it was just a rhetorical device to express my desire for her to be healthy, or to be able to eat without aspirating, or not choke on mucus. Honestly, I don’t know how to rid myself of this desire when I helplessly watch her struggle with pain or when I see her on the ventilator with multiple IVs sticking out of her body. I don’t know, maybe it comes with time, as I feel very differently about Izzy’s condition now than I did 10 months ago when she was born. And I’m sure it took some time and struggling for you as well to achieve your peace, you probably “worked” for it and earned it, and it didn’t just happen overnight. So maybe in 10 years, I will be all “zen” too :) Sorry, if my comment is a bit “muddy”, I’m still thinking through these things.

By: Louise

Louise — Mon, 21 Dec 2009 18:46:57 +0000

ps, Elizabeth — I think you’re right that our minds construct a way of viewing our situation that makes it livable. I think we frame things in a way that promotes our resilience.

By: Louise

Louise — Mon, 21 Dec 2009 18:41:40 +0000

Hi Claire and Elizabeth — My son isn’t assaulted with the kind of physical pain your kids endure daily. I don’t know how I could accept that.

In the same way that I find nothing redeeming about the fact that my son can’t have good friends.

We are fortunate in that Ben is able to have joy in his daily life — to laugh exuberantly, to watch his favourite shows or play computer games, to ask me (in sign) what I want for Christmas, to help wrap presents, to enjoy hugs. They are limited things compared to a typical child his age, but he has some quality of life through this (a different quality of life, but not necessarily “less” quality of life). If he had medical conditions (like seizures) that stripped these joys from him and destroyed his spirit, I don’t think I would have the same feelings about acceptance.

I know I may not use the terms correctly, but in my mind life-threatening medical conditions that cause pain are different than physical or intellectual impairment (or disability) that doesn’t change over time — in terms of their impact on quality of life. I think when people talk about not wanting to change their child, it’s often in reference to a physical or intellectual disability that is static over time, and has simply become a part of who their child is.

By: elizabeth

elizabeth — Mon, 21 Dec 2009 17:07:46 +0000

While I “get” the zen thing (I am a studying Buddhist as well, I suppose), I find it extremely difficult to “accept” the tens of thousands of seizures that “happen” to my daughter “just because.” From what little I know of Buddhism, I’m certain that that kind of acceptance is not relevant. While I know and accept and love my daughter “as she is,” I also accept that my unique personality and person-hood compels me to stand up for her, fight for her, help her and perhaps, even, NOT accept that her constant seizures are acceptable. I appreciate the sensitivity of your post and don’t disagree, but I wonder or throw out there the thought that perhaps those of us who have had children with disabilities, live with those disabilities or even lost a child construct a world within our heads that enables us to literally live with the fact.