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A DIFFERENT KIND OF JOY: Lessons Learned by Anne

A Different Kind of Joy (image)

Photography by Fran Collin

 

If I were doing it now, I wouldn't cry as hard. I'd know I could deal with it and where to find support. I'd open up and give what I'd learned to other people. That's why I'm co-chair of the Westchester (NY) Support Group of the Parents Assistance Committee on Down Syndrome (CLICK HERE for their helpful pamphlet on understanding Down Syndrome).

 

We have monthly meetings at which people come to pass the babies around and laugh and cry and ask questions. I reassure new parents that Down Syndrome is an easy disability, because the kids are typically happy and can be included in family and school activities. You can still have those birthday parties and trips to the beach.

 

I'm on the board of the local branch of The Arc of the United States, a not-for-profit organization serving the lifelong needs of people with disabilities. I keep busy doing PTA work, too,and I'm treasurer of my church. I'm a Unitarian Universalist, and we believe that we should make today's world as good as we can. It's shown me that there are all types of people and we're here to help each other.

 

You have to be aware of the future. We learned that because of competency issues, you have to designate a legal guardian by the time the child is 18. We'll continue to be his guardians, but we're thinking of naming one of Joe's brothers and our older girl as alternates. David's the apple of her eye.

 

What else have I learned? Patience, tolerance of diversity—and unquestioning love!

 

Comments

My best friend

My childhood friend of over 40 years, has become disabled due to a benign tumor on her spine. She has never been married but she has one adult son. She lives with her single sister who goes to school full time and has a brain injury, her sister is 45 years old. She (my best friend) and I are 48 years old. I am married and live less than a mile from her. I help her everyday for several hours a day. It seems that the more I do, the more she asks me to do. Yesterday in an 8 hour time frame I had to bring her the bed pan 22 times. She asks me to give her a bath and I do, but she can wash everything in the front, there is nothing the matter with her upper body, yet she has me wash everything. If I sit down for one second, she immediately asks me to do something else, instead of asking me while I was just up and in front of her. I don’t get it. I don’t understand why she thinks I can just work like a dog all day without a 5 minute break. I feel like she is taking advantage of me, why I do not know. It’s never ending and for the most part unnecessary. I need some advice. Thank you.