Monday, June 25, 2007

The Sister's Perspective

What is it like to live with a brother and sister who have a disability? First off, I love my entire family and I wouldn’t change anything about any of them. And I really don’t think about Hilary as being disabled. She can talk, walk, eat, go to school, and do everything that someone without disabilities can do. The fact that Hilary is deaf is not the life changing factor in our family. Jack on the other hand, cannot walk, talk, eat, or do most the things regular kids can do. Jack is the one who is stared and pointed at. He is the one who needs nurses and special attention. Jack’s nurse Kristi is absolutely wonderful though and I’m not at all sorry she is in my house everyday. When people ask about my family and I tell them about Jack, most of the time they get this look on their face, a face that has sympathy and pity on it. It’s the face I absolutely hate. I get frustrated when people say they are sorry, I'm NOT sorry!

There are days when I think to myself, “why me?” Why don’t I get to have the life of a normal family, going on normal family vacations, and having normal brothers and sisters? But when I think about it, what exactly is normal? Everyone in my family has come to hate that word. Personally, I don’t think there is a “normal”. Every family has their struggles and their weirdoes. Not that Jack is the weirdo; I leave that up to Hilary and Eric :-)

The way I see it, life could be much worse. For instance, if there was no Jack. To me that would be even worse. I worry about him and what will happen when he gets older, but I worry about everyone in my family. I am part of this family for a reason. I’ve decided to just deal with the fact that I don’t have a “normal” family. For those of you who know Jack personally, you know he is the sweetest 8 year old out there. I don’t care that he isn’t “normal”. Jack makes me happy and I love him very much.

Everyone gets frustrated and has those days. I am very lucky to have Jack in my life. I have met some very amazing people because of him, and I have come to know and love many of you and your kids too. Besides, without Jack and Hilary, we wouldn’t be "our" family, we wouldn’t be unique. So those of you out there who worry about your other children, don’t. They will be frustrated, they will think “why me?”, but I guarantee you they wouldn’t change a thing if they had the chance.

Age 14
(in her own words)

I noticed after posting the above picture how remarkably similar it is to the picture of me and Jack. Do you think she is her mother's daughter?


Anonymous said...

You should have told me that I would need a tissue for that. Oh my goodness. Mary you wrote that beautifully. Very well done.
Your family is lucky to have you in it. Jack is also lucky to have you as a sister.
Lots of love,

Anonymous said...

That was the coolest thing I have read in a LONG time. She is Jacks sister but also her Mother's daughter :-) Very straight and to the point, I love it! I could not agree with her more, you would not wish for it but you would not change it. Glad I checked in today, that made my day.
Thanks Mary!
Kristina :-)

Anonymous said...

She is her Mother's daughter! Mary, I absolutely love you (Nick too), your beautiful spirit and your wonderful outlook on life.

Ann, you have the best kids!

Lots of Love

julie w said...

Ann - Mary obviously gets her talent for writing from her mother. What beautiful words, and so nicely put. Well done Mary, its nice to see things from a different perspective, thank you.


Melisande said...

Well written, Mary! You have much to share with the world and with many adults who aren't nearly as wise. You have a gift in your family and you are a gift to your family as well. You are most definitely your mother's daughter. Not a bad way to be, if you asked me. My mom is a strong woman too and it can be difficult to follow in such shoes, but what an amazing person to call Mom?
Hugs to you and your mom and Jack, Hillary, Eric and your dad!!

Anonymous said...

That was great, and completely true. There is no such thing as a normal, and with my brothers handicap, I think the exact same way. God has blessed you with a great family, even with some handicaps.... =) thanks for showing me your perspective!
-Breanna Jo, brother to Brian Dargel

Cindy said...

Well done Mary. As I always say, normal is boring. No, you don't have a normal family and you are not a typical "middle child" (that's a compliment;-)