The following was written by Maria Sjodin, an older sibling to Leah Sjodin (4p-). Maria wrote the article for a Families Career Community Leaders of America in 2006. Thanks you for sharing this with us.
I can say now that being a sibling of a child with 4p- hasn’t always been easy. It has been a long 12 years. But I wouldn’t trade my sister for anything in the world. Siblings are the ones that can be forgotten in the back sometimes, or shipped off to a relative when the other sibling is in the hospital.
They are the bag holders and car door openers. They are the other siblings’ savior in the times of medical ‘torture’. We are affected by how our parents give care for the other sibling with 4p-. My parents have always loved my sister first and not focused on the syndrome. I believe that has given me a great life lesson.
That everyone, no matter what they look like, they deserve to be treated equal. My parents also have always treated our family as ‘normal’. That has taught me that there is no ‘normal’ in the world and that it does not really matter.
My parents have also told me straight out what could possibly go wrong with my sister, everything has been very honest. That has helped me stay grounded and less selfish, because I know my sister sometimes has it worse than I do. I believe that is the sibling wants to know, tell them everything and the truth. Don’t sugar coat it.
You may think that it is too much information for a young child to know, but knowing is better than being lied to. I have always wanted to know the truth no matter how harsh it may have been. I knew what my sister’s medications were since she was born, and all of her doctors. I have a little memory key to help me remember what they do. I am very involved. Another thing my parents have done is treat me different and they try to find special things to do with me alone.
That has helped me know that I am different than my sister and feel important. The thing that I think is the key to being a parent of a kid with 4p- is to love them first and not worry about the syndrome (that doesn’t mean ignore it completely, just try not to make it a huge focus of the family life). Us siblings are affected by the way you parent the child with 4p-, so watch what you do and leave a good impression. Because, one day we may follow that.
Watch Maria’s interview during the 2006 National Conference as she discusses having Leah as a sister.