A friend of mine posted this link on her caringbridge site and I wanted to share it too. It's http://www.curepity.org.
The basic premise of the website is this: "...to look beyond the challenges children with disabilities face, and instead realize the enormity of what they can accomplish through spirit, sheer willpower, and leading-edge medical care. I refuse to focus on the obstacles that children with disabilities may encounter; but rather on their determination to face—and overcome—them."
Maybe you know a child with special needs and if so this message is one to remember. I know from experiencing pity in regards to Emeric's situation that it's the least comforting of anything someone might want us to feel. We don't look at him as pitiful so we'd hate for someone else to either and yet I understand too that it's common to react this way because we don't know what else to say or do sometimes. So, for that reason I share this site. I like to get others thinking and I like to be challenged myself!
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4 comments:
ok... i'm gonna try to say this the right way, so if it comes out wrong please bear with me!
i think with your situation my pity is more for you. because i seriously don't know how you do it girl! in emeric's case i can imagine that your world feels turned upside down sometimes with all the info you need to know, all the meds you need to remember, and all the specialized help you give him. when you have a child, THAT'S not the kind of normal (not saying emeric's not normal!) routine that you think of.
i totally understand the perspective of realizing the accomplishments of special needs kids too. although ryan isn't special needs, he IS developmentally behind still. so when i see him try for 5 minutes to pick up something with his right hand and he finally graps it i get so excited for him because of his accomplishment.
but at the same time, it's so easy to pity kids because of the things you know they can't do or won't ever be able to experience.
anyway, good thoughts nicole! hope my comment came out right! :-)
No, I totally understand how you feel. Something specific I can think of is that I used to go to this Bible study last year and this lady came up to us as soon as we got in the door each week and would pat Emeric's head and put her hand on my shoulder and say, "How is your son?" in a "oh that poor child" way. It wouldn't have bothered me had it been once or whatever but it was every single week. And she'd look at him like he was dying. And I don't think of him that way so I guess it irritated me.
Being in quite a few Ronald McDonald houses and being a part of special needs boards it's amazing how many parents get those types of reactions from people and hate it. The biggest one is when someone looks at you with pitiful eyes and says, "What's wrong with him?" because it's usually not in a way as if to say they care, it's typically in selfish, just wanting to know way. Again, it's easy to tell the motives behind a persons questions.
It really depends on your definition of pity and if Emeric were in a dire situation I would understand pitying him and I would pity him. But he's not and while it might look like it to the outside world sometimes with kids with special needs their parents don't tend to see them that way because it's their normal. KWIM?
The definition of pity is "sorrow provoked by the suffering, distress and misfortune of others" or another definition is "to feel sorry for".
The problem with pity is that it does send the message that you think the person is suffering and that might be true in some cases but it's typically not. They might not be healthy, they might even be on their death bed, but unless they're suffering(which to me equals pain) than pity isn't the appropriate emotion.
Empathy seems more appropriate because the definition of empathy is, "the intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another."
This suggests something much different. By intellectually identifying with a person you're playing off of their feelings or what they're experiencing at that time. For this lady to pity me each week at Bible study suggested that she felt like Emeric was suffering somehow and that wasn't true. He was happy, in no pain, didn't have a care in the world. It was draining to feel that the moment I walked in the door I would be bombarded and made to feel like I needed to sympathize with her. If that makes any sense!
I would much rather she would have empathized with me. She could have done this by listening intently when I'd share prayer requests for Emeric or if I was crying about his situation she might cry to.
In fact, this happened too and there was one lady who after I had shared that I was having a hard time and feeling really down came up to me and just looked right at me with tears in her eyes and said, "I don't know how you feel but I want you to know I am praying for you." I have a far more positive memory of that than anything else and I get choked up thinking about it because she was so in tune with how I was feeling, it was obvious.
Anyway, this is getting long. I totally know what you mean and I'm always hesitant to share things because I don't ever want someone to get the impression that they have to be super careful about what they say to me. It really isn't that way and like I said, I can usually tell someone's intention and really that is what matters more than what they say.
Thanks for commenting!! :)
Whenever I feel sorry for myself, I remind myself of all those less fortunate. In fact I don't even feel pity for you or for Emeric. I think he is lucky, he has someone fighting for him, which is way more than so many other kids have.
I hear the horrors of what kids in war torn countries go through every day. All I can see in this country is waste and greed. We think we need the latest and greatest baby stuff. I pity those who have nothing, the people whose children born with special needs who don't even have a chance at life, not those who have to struggle with how to get their child the best medical care they can.
Emeric is lucky! Lucky to have an intelligent mother, lucky to be born white and American. I know it is hard to see sometimes. We are all so easily consumed in our own pity parties, but we are lucky, each and every one of us. We all have the opportunity to express ourselves freely and have hope. The hope of a better life, not only for ourselves but also for our children.
i don't know where to start in reply to your comment, nicole! but yes, i remember you writing something about that lady. that would really piss me off too! it's funny how people have different motives for their pity too---like feeling sorry for someone just so that they appear compassionate, etc.
that's really sweet what that other lady said to you though! geez i almost teared up when i read that! :-)
just wondering: do you find that parents with children around emeric's age pity him more because maybe their child can do something that emeric struggles with?
and i like mj's reminder... we are so blessed to live in this country and have everything we have. yes, the real pity should be for those children who have no hope...
and yes, emeric DOES have a wonderful mother! ;-)
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