Thanks so much to everyone who has posted comments so far. One of the best things about being a "sib," as we brothers and sisters of people with disabilities tend to self-identify, is the amazing community of other sibs out there who so easily and warmly embrace one another.
Finding this support from siblings across the country -- support in all forms, from tearful heart-to-hearts, to fall-on-the-floor laughing conversations, and everything (board games, bar hopping, shopping) in between -- has completely changed my outlook on being a sib and has made me all the more able to see how I can play a positive role in Peter's life.
Growing up, I didn't know anyone else who had a brother or sister with a disability. While I saw that every family had its own particular imperfections, I felt very much alone in ours. The first time I sat around a table with other adult siblings, at a support group here in NYC, it was like coming home. All of us could relate to some aspect of each other's stories. Many of us, in our 20s and 30s, were dealing with similar issues related to our careers, relationships and plans to start families. Almost all of us worried about the future, and the time when we would take over caregiving responsibilities for our siblings, whether they were already in a residential program or still living at home with our parents. As I met more siblings from other states, I realized that all of us were united in the unique -- wonderful, frightening, frustrating, rewarding -- experience of being a sib.
I could go on and on about that, but hopefully some of you have some thoughts on sib bonding that you would like to share. My DREAM is for all of those sibs out there who haven't yet found the warm support of other sibs will, one day, find us. This is a goal of the National Sibling Leadership Network, which I am proud to be part of and which I think is going to change the world (for the better) for all siblings (with and without disabilities). Together we can, indeed!
This post was supposed to be about Christmas, since folks wrote such nice things about spending the holidays with their siblings. Christmas is one of Peter's favorite holidays, and mine. We have many traditions, including watching "A Christmas Carol" and opening our stockings (at the bottom of which is always an orange, in keeping with Italian tradition) first. Like many of us, Peter loves gifts, and this is where other traditions that are uniquely ours come into play. At every gift-giving opportunity I give Peter a round-trip Amtrak ticket to NYC so that he can come and visit. This year, my husband, Tom, added to Peter's next trip by getting Peter tickets to a New York Islanders hockey game. The best part? He got 20 tickets for his entire family and some friends, so that Peter will have a night out with "19 of his closest friends," as he put it in Peter's card. We are all looking forward to the game!
Peter is one of the most generous people I know, and he always goes above and beyond at Christmas. I am a coffee fan and, one year, knowing that Peter needs to watch his wallet, said that coffee beans would be a lovely gift in response to his question about what I wanted. Well wouldn't you know, that year there were several packages -- all smelling suspiciously wonderful -- under the tree. By the time all was said and done, I had TEN POUNDS of coffee to bring back to New York with me.
This year, I gave Peter my usual lecture about toning it down in the gift department, with some extra emphasis. We are hoping that he will be able to move to New York soon, to a supportive apartment closer to me and Tom. I reminded him that he would soon need to be better about budgeting, and would need to eventually pay rent. He said that he understood completely.
So when on Christmas morning I opened -- I don't even know how many packages there were, but it came to 14.5 pounds -- I was floored! I would have to open a coffee shop.
"Peter," I said, "What on earth? We TALKED about this!"
"I know, Emily," he said, "But next year, if I am living on my own, I may not be able to do this for you, so I wanted to do it now, while I can, to thank you for all you are doing to help me become more independent."
And that was the end of that. It was one of those special moments in which I understood and felt Peter's total, unconditional love. It was the best Christmas present, ever.
Many wishes to everyone for a happy, healthy new year filled with many special moments!
Tuesday, December 30, 2008
Wednesday, December 24, 2008
The holidays seem like a wonderful time to begin this blog for, by and about the siblings of individuals with intellectual and developmental disabilities. For me, the holidays have always been about family, and my brother, Peter, plays an important role in ours. Peter is two years my elder and when I think back to childhood he was my very first friend. Growing up, I knew that my brother was "different," but I did not have the words that I have today -- Fragile X Syndrome -- to describe why. To me, Peter was an idol, pest and constant companion. He was a source of anger, frustration and jealousy, but also relentless support, silly fun, joy and complete camaraderie. He was my big brother, and together we played, fought, laughed, cried and went through a variety of phases as we reached different stages of life. Today, we are both in our 30s and share a very close, sometimes exasperating, unconditionally loving relationship. My hope in starting this blog is to create a place for the siblings of individuals with intellectual and developmental disabilities to share information, resources, support and stories so that they may play a positive role in the lives of their siblings and families -- while enjoying their own lives to the fullest. The holidays are about family. I cannot think of a better time to celebrate siblings and the unique bonds we share.