You can understand why someone feels the way the way they do and still not agree with them – that’s what I keep learning 
It’s 3 : 00 PM on day 808 of my journey towards independence and I’ve managed to stretch my hamstrings, brush my teeth, publish my Disability of the Day feature, practice typing with both hands, feed myself toast, scrambled eggs and sausages for breakfast, watch TV and practice sitting up straight to strengthen my core muscles.
Last night I read I love my disabled child – but I’d give my life to make her normal: The mother of a severely autistic girl makes a painfully honest confession by Meg Henderson – another article written in reply to Dominic Lawson who said he would never want to ‘cure’ his daughter of Down’s syndrome – I really felt for Meg I’m sure it was extremely difficult raising a child with severe Autism with little to no support but I couldn’t believe a mother could write And, forgive me for saying it, her problems are a huge burden to herself and her family. especially since she and her husband adopted Louise and her sister, Marion, I couldn’t imagine how I would feel if I thought my mother thought I was a burden and basically said all the effort and energy she put into me was wasted. Do you often understand someone else’s point of view even though you don’t agree with it?
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I truly believe that women under extreme stress ( and when they allow themselves to be vulnerable and honest) really just need a listening ear. They need to talk and tell people how they feel. I know for sure her words will be different once her stress is either alleviated or managed better. It is very hard to be honest with pople and to open yourself up to people’s misunderstandings or judgement.
Although I know that what she said could appear and even feel hurtful, I think that she said them because she wants to deal with learning how to manage her stress. I’m sure that it has nothing to do with her love for her child, but you’re right, if her child heard those words there would be a lot of explaining to do.
I wish my mother had showed me more of her emotions when we were young. It wasn’t until I had a marriage and children of my own that she started sharing how she really felt while married with young children. Because she never shared her reality-what she was feeling and how she was coping- I thought something was wrong with me when I started getting tired and frustrated. It was such an impossible role model to live up to. I had tremendous feelings of guilt!
I was so hubled to learn that she had breaking points just like mine.
So, maybe what Meg is really offering is a safe place to have a dialogue about the feelings that people have to be aware of in a family that is dealing with chronic illness and/or disabilities?
Great post, Nisha. And thoughtful questions, too.
I’m glad that you got to see that your mom has breaking points too when we put our mothers on pedestals we feel like we have to follow their footsteps and set ourselves up to fail. You’re right I think she was offering a safe place to dialogue I was still hurt by some of the things said though.
I can understand where she is coming from in regards to dealing with the care of a child with chronic illness and how isolating that can be. I think alot of what Meg was saying is coming from years of frustration, fatigue and even guilt from how caring for her daughter affected the lives of her family. It sounds like she hasn’t had anyone she could talk to or vent her frustrations with. In parenting Matt, I’ve learned that people want to hear that things are great and all sunshiney and rainbows, not about how much wheelchairs cost, how crappy your insurance is and hear all about your latest appointment with a specialist. In my experience, and what sounds like hers too, you just hold all of that frustration inside until you just can’t do it anymore. I think that she was just trying to vent, and in her way, open the door for others to do so as well.
I was talking to my husband about this very topic last night, we both said that we could never imagine Matt being any different than he was born. He is very much loved just how he is.
Great job as always, Nisha!
Thank you
I also understand where she’s coming from and I feel for her but I don’t agree with everything she said. I’m glad you wouldn’t change Matt I’m sure he’s great just the way he is 
It sounds like this family has struggled for a very long time with very little support or resources, yet she does express her love for her child. I wish someone could have reached out to them and given them a sense of hope. I do not agree with everything she said, but I feel for her because I know families with severely autistic children and life can be REALLY hard for all involved. I believe that every child, and every family is different. Every special need is different. We have a daughter with a few different special needs. There are some things I do wish there was a “cure” for, like when she doesn’t act like herself. You can just tell that she doesn’t want to be bouncing off the walls, but she can’t seem to help herself. If someone told me they had a way for her to see again, I would help her see. But anything that would take away her sweet and loving nature, I would not accept. I believe she is the way she is because of her special needs, and I cherish her and love her deeply. She has also taken time away from our other 5 children, as our teenager has also
Some children take more time to parent than others. We deal with this by giving our other children a special date with mom or dad when they seem to be a little invisible. We can feel like we are depriving our other children, or we can get our other children on board, be a family, and in the meantime they will each grow and mature in a different way than their friends might.
I appreciate your blog so much!
Thank you
I also wish they had a little more support. I like that you spend one-on-time with your children I think all parents should do that. I’m glad you wouldn’t change your daughter too much because I believe God made everybody perfect just the way they are 