So, I have a friend who has a sister with Down syndrome, and I am constantly in awe of my friend and her entire family and their approach to life in general. And my friend just had a baby, so her family was in town, and a different sister of hers slept at my house, and we had the opportunity to talk.
Some months back, my friend's mother was telling me that when her D.S. daughter was born, she was afraid to look at her. "They had to tell me, 'It's okay, she's not a monster,'" she told me. This was such a powerful thing for me to hear, because this woman is, like, the mother I want to be. What she has done for her daughter is astounding to me, and she is so amazing. Her faith is strong. She is patient -- but tough as nails. But kind. But strong. Amazing. I am constantly amazed by her, and it was so, so good for me to hear that these qualities did not just come from nowhere, but rather were cultivated over many years. It gives me hope that I can do these things for D. one day.
Anyway, I was talking to my friend's sister, who was all of a year old when their D.S. sister was born. I told her what her mother had said, and she was so touched to hear how it had affected me. We talked about the different approaches her parents have to life, to her sister.
"When people would tell my father that my sister was a bracha (a blessing)," she said, "he would say to them, 'You think this is a bracha? You want my bracha? I'll give you my bracha.'" She told me that she was always horrified by this comment, and he basically told her, "When it's your child, you can tell me how to feel." Recently, someone said to him how amazing his daughter is, how much she has accomplished. "And he said, 'Really? You think it's amazing? I think it's disgusting,'" my friend's sister told me.
This is one of those statements that pretty clearly divides the people who have children with special needs from those who don't. If you don't, you hear that this man thinks his daughter is disgusting, or that he doesn't love her. But if you do, you hear it very differently. He's not saying that his daughter is disgusting. Not at all. He's certainly not saying that he doesn't love her. He's saying something else entirely. That this reality is disgusting. That it is disgusting that God would do this to his child, this daughter he loves so powerfully. That he rages against the forces that have dared to inflict this on his child.
I know where that anger comes from. I know exactly what he means, and why he says it. Because it is incredibly frustrating to hear again and again how lucky my child is to have such strong parents. It is insulting and demeaning to hear that you couldn't handle my child, that what we do is so hard, so amazing, so wonderful.
It is disgusting that people are constantly astounded that we would do these things, as if they are out of the ordinary.
She said she's tried to tell him that if he would let go of the anger, he would have a better life. And I hear her argument, but I also know how hard it is to let go.
Monday, October 25, 2010
On Anger
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4 comments:
Wow. I don't even know what to say. I have never thought that about my daughter, and I'm sad to hear that father saying that. I get that people might feel that way, but as a mother, I guess I don't really GET it. I am so proud of my daughter, so happy to be her mother, despite the many challenges my dd brings. Great post.
ok, here's the thing. i have a kid with down syndrome. i can't tell any other parents (or siblings, or grandparents or anyone) how THEY should feel. all i can say is that I LOVE my own kid. i don't feel that Hashem chose to give this kid specifically to me - i guess i have more of a view that genetics is one of those things that Hashem set up and now it runs its course...rarely does someone say "oh, it's a good thing you're x's parents, because YOU'RE strong enough to handle it" (and it's probably a good thing, too, because i hate to hear that...like the header of a blog i read "if i were a weaker person, would my daughter be normal?" (http://disableddaughter.com/)
most of the time, i feel parenting this child is just like parenting any child, perhaps with a few more drs appointments, a few more teacher's meetings...but then sometimes life slaps me in the face and i can't look away from the the things that the world finds lacking in my kid - so lacking that most pregnant women would choose to deny their child life if they found that they were carrying a baby with down syndrome...
when i'm angry, it's usually about my child's shortcomings in relation to what society perceives as his deficits...i might feel differently if he were in pain or had no way to express his joy in life...but in general i feel like our children are all a crap shoot - even the most normal, the most typical can bring us worry and heartache, can not live up to our expectations, can waste their lives or not accomplish anything...
so, yes, i can understand that mother's honesty. and i can also understand that father's anger. and i thank you for this post. and sorry my reply is so long!
Hey WG if you figure out how to let go of than anger please let me know.
I often think of a post you wrote a long time ago in which you stated that you could not handle this but that we are not allowed to leave our kids in a ditch and walk away....
So glad you wrote about this. I love my son with all my heart, but I absolutely hate what he has to go through. I cannot stand to see my son in so much pain and anguish, I hate what his special needs have sometimes done to my family. I live knowing that his illness could be fatal and that it can come in the worst of ways, and yet, when I see him in such pain and anguish I sometimes wonder if it would be better, and then I hate myself for thinking that.
As I said, I love my son with all my heart and I cannot imagine life without him. But I would not wish this on my worst enemy.
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