This is Zelie. She was born with bilateral syndactyly of her third fourth and fifth fingers. We knew right away that something was different about this little girl. Her cry was so quiet.
She was extremely peaceful and happy.
Her weight was always below average and when she was about 6 months we realized she would not eat anything through her mouth. She would only nurse, and not very well. At nine months, her weight began to decline and she was diagnosed as failure to thrive. She had to get a ng tube (nasogastric) which allowed us to feed her extra nourishment.
We had to come to the very hard decision of having a g-tube placed. My little one year old quiet daughter had to have surgery where they cut open her stomach and put in a "button" in order to feed her. I wasn't prepared for how traumatized she would be after that surgery. My girl, who rarely cried, howled in pain.
When she was just 18 months she had to begin her hand surgery to release her fingers. We had to dress her wounds and deal with a very small child enduring excruciating pain. Blood was everywhere. My husband and I fought, both tormented by the agony of our child.
I had two other children. My oldest son was also dealing with mild autism. At two, Zelie needed eye surgery to correct esotropia (a type of crossed eyes). That was followed by at least a year of patching her eyes to strengthen them. For a few years there, I was in doctors offices and therapy centers and surgery and follow ups IEP meetings, you name it, most days out of the week.
Why am telling all of this? Because, for me, it was a major factor in my disillusionment of faith. Catholicism gives a special virtue to suffering and I had believed it deeply. It teaches that we are purified and united with the love of God through joining our suffering to Christ's on Calvary. Only problem was, why did it seem like my innocent little daughter was being disproportionately targeted? What had she done? Was her suffering there to make me more holy? I began to see this logic as absolutely cruel and unusual.
Which one of us would approve this kind of moral teaching for our children? How many of you would choose to injure and disable? Zelie has autism. Zelie cannot talk. She cannot eat.more than small nibbles. She is not potty trained. If something happens to her at school or while I am away, there is no way for her to let me know. When she hurts, she just cries and I have to try to figure out what it could possibly be without her being able to show me. No, my understanding of a benevolent all knowing God would not allow this kind of thing.
And the truth is, Zelie is so much better off than so many children. When I go to the specialists I see children with much more severe ailments. The thought that there is a God allowing this is just appauling to me now. It makes much more sense to me to admit, that we are a fragile species on a fragile planet. Unfortunate things happen. That is life. In this I can find peace. Neither Zelie or I DESERVE this treatment.
This understanding of the acuteness of real pain and suffering has also made me much more sensitive to the argument for Euthanasia and abortion of severely sick abnormal fetuses. I find it merciful to not make a child suffer unnecessarily. Have you ever been in so much pain that you would rather be dead? Imagine never being able to stop feeling that way?
Zelie is a very beautiful girl who has such an optimistic outlook on life and finds joy in silly little things. But does that make her suffering go away? Is it worth it for her? I hope so. I am just so glad I live in America, in this generation, where there is a respect and dignity for special disadvantaged people. Thankfully we don't live in a time or country where these types of children and adults are just shipped off to an institution.