Monday, October 8, 2007

What's it like having a special needs sibling?

Vicki Forman has written a column in Special Needs Mama about being the sibling of a child with special needs. My daughter Gabbi wrote this piece two years ago and won the Respect Life Essay Contest in the Diocese of Rockville Centre, entitled, "My Sister is Special" .

I don't want to pretend that their relationship is all sweetness and light, there are plenty of spats, but they do have a very close relationship. There are times, when Christina prefers her sister Gabbi's care to mine. I suspect it's because her tears can obtain what she wants more readily from her sister. I'll come home from teaching at the college on Saturday afternoon, to see Christina on her fourth Barney video, face stained with chocolate, and Francisco in the yard mowing the lawn. Gabbi has been in charge, letting the good times roll.

I try not to complain, that will only confirm my role as the 'bad guy'.

I just smile and remember that in years to come, I will not be there for Christina, but her sisters will . They have to be close.

Kimberly Hahn, in her book, "Life Giving Love" puts to rest the idea that having a special needs child means your family has to be small to care for him properly. She asserts that, "The greatest gift you can give a special needs sibling is a lot of siblings to care for him when you can no longer be there".

I have only been able to give Christina two sisters, and since losing three children to miscarriage, and sadly, she has no brothers. I wish, with all my heart, we were like the large family in my parish, the Andrews, who have ten wonderful children, who all dote on the youngest, Clara, who has Down syndrome. But two devoted sisters, who though they do get tired of dealing with Christina's stubbornness, love her intensely, are a great gift to my special needs daughter.

We often discuss what kind of husbands the girls must chose, if they decide the convent isn't for them. Gabbi and Bella know that he must accept the role Christina plays in their lives. I hope, through my writing, to be able to leave a trust fund for Christina, so that she never burdens them financially, and I hope to teach her enough Independence so that she has a happy, productive life, but the reality is, that somehow she will rely on her sisters' guidance as an adult. Once, when Christina was a baby, I was advised by a well-meaning, nurse to 'put Christina in a home so I wouldn't burden her sisters. I have several group homes in my neighborhood, and have observed them these five years. Some residents are happy, and productive there. This may be a choice for some families which works, however, I notice that the employees of these group homes are poorly paid and have a high turnover rate. What kind of care must they be giving to the residents whom they hardly know? I' d rather trust my daughters to care for Christina, and raise her not to be an undue burden on anyone, rather a well loved aunt to her future nieces and nephews. Who knows, maybe marriage could be in her future? It happened for Sujeet and Carrie in Rome, New York last year. But whatever Christina does, her sisters will be an integral part of her life.

The girls' future husbands must accept that before marriage to avoid problems. Besides, I tell them, "What kind of man would say he loves you, but reject your sister? Would you really believe he truly loved you?" "NO!" they reply. They understand what unselfish love is, thanks to their sister, and I trust that they will not settle for anything less.

This answer gives the greatest reassurance to me about the future of my special child. My husband and I work to insure that our daughters' future will be one of love and closeness, and trust the rest to God.

1 comment:

kathylynn said...

What a very sweet post!