My Sister's Keeper

I started a new book today: _My Sister's Keeper_ by Jodi Picoult. I am not sure if I am ready emotionally to read it so it might take me longer than how I usually devour books. This is the story of Anna, a 13 year old girl in good health. She has been through repeated surgeries though. It seems Anna was "created" to be a donor to save her sister's life. Her sister has leukemia. Anna seeks to be emancipated from her family and the burden of saving her older sister.

With a Christian world view, my reactions to this are pretty strong. As a parent and as an advocate for children with special health care needs, my reactions are pretty strong. I wonder how this will all play out.

I have seen many siblings of those with special health needs, including those in my own family. The responses to being in such a family are varied. However, I can say the majority of those I have met in and out of the Christian mindset, all would do anything to help their siblings get better or do better. Many have given of themselves. Four of mine made several trips to the National Institutes of Health for brain scans and blood tests, participating in studies to understand brain disorders (mental illness) in children and adolescents. They knew their efforts could not help their brother, but their desire was to help other children and other families so maybe they would not have the sorrows we endured.

I cannot even imagine the pain of the parents in this book, and I will not judge their choices, having never walked in their shoes. I am thankful that cord blood banking makes such decisions less necessary.

I know Anna did not ask to be born or to be her sister's savior. That is a heavy burden for anyone, much less a child. The emotional pain of growing up in that spectre must be traumatic.

I have sat in genetic conferences where the ethics of genetic testing, genetic predesign, etc, have been debated. I have sat with parents who have had a child prediagnosed in utero as having a chromosomal anomaly and have been counseled by geneticists to abort. Being pro-life myself was not a good enough argument for these seeking parents. The best advice I could ever come up with was that having a child was a roll of the dice for anyone. You never know what you are going to have. The best you can do is pray for the strength you need to love them whoever and however they are, unconditionally.

I once told God if children with special needs had to be born, to please give them to me, because I would love them unconditionally no matter what. He must have thought I was nuts when I cried out in prayer years later with my son, "Why me?" He had just answered my prayers.

Though the path has been long and rocky at times, I do not regret it. Bishop Sartin often said suffering will put things in you and get things out of you that nothing else will. I can now say with my whole heart not just an "Amen" but also a "Selah."