Wednesday, May 18, 2016

Zelie

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 tape her face with a tube and switch sides periodically so that her skin on her face wouldn't break down. She would scream and hate the tube being stuck down her nose.  After three months, her weight was improving, but her feeding skills were not.



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.




My husband was in the military and left often to go on missions.  We were living on the other side of the country from my family and friends. I had no help besides what I could pay for. When I became unable to cope with all of the stress, he accused me of being bipolar. He blamed me for not being strong enough.

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.

I am just sorry I promoted this sort of belief when I had NO idea of what I was talking about.




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?

Assuming Zelie lives into adulthood, what about after Fernando and I die? Unless something amazing happens and she surprises us all and becomes self sufficient, what will happen to her?  Her brothers will be charged with it or a group home.  We can only hope that she will get good treatment. Have any of you worked with a nursing home or assisted living?  It's not necessarily a good life always.


 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.










5 comments:

Toi Khong Biet said...

Thank you foe sharing... I agreed with what you said because it is your lived experiences. I just want to share my thought on faith of Jesus. In the gospel, if you read what Jesus taught, it is much different than what we think he taught. Jesus said the kingdom of heaven is amidst you. The kingdom of heaven is hope and joy amidst our suffering. In the beatitude Jesus told us to embrace life embrace reality. He said bless are the hungry the suffering the crying.. Why? Does God wants us to go through that? No. But that is the reality of this world. But even we live amidst that reality, God is with us. The kingdom of heaven is within us. Hope and joy is in us even when we suffer the reality of this world. I listen to christopher hitchen alot. And his problem is not with God. His problem is with humanity. He beared the pain of his brother and mother committed suicide and left him and the pain goes with him for the rest of his life and he seemed like he is fighting against religion but in reality he is fighting against his pain. God bless... St. Michael pray for us...

ajl said...

Hi, Christopher Hitchen died a few years ago.

I understand your love of God. I was a minister and missionary. I know what the love of God looks like and the hope of goodness amidst suffering. But, that doesn't mean I agree anymore.

I am not fighting pain. I am fighting an institution that encourages it. I am fighting something that gave me guilt about not following it's prescription for my life and it almost cost me my sanity.

Everyday I still live with the consequences of these doctrines. People don't need religion, they need help and love.

fRED said...

This is a profound post. As a parent, I can relate to your frustration & helplessness on watching your child suffer. No parent wants their child to suffer, especially futilely and without apparent reason. Our children are born innocent and we want the best for them.

A fellow classmate from HS suffered a similar experience as yours with his first born. It took several months before they realized that something was wrong and then, to their horror, they discovered their child had a rare genetic condition that essentially robbed her of her motor skills. She was unable to crawl, walk, or talk. She had to have a feeding tube in order to survive. My friends tried to care for her but such an immense challenge almost literally destroyed them. Reluctantly, they institutionalized her and she died a while later.

Who can understand why we suffer? It is a subject that religion has wrestled with since the beginning but can only come up with hollow, figurative responses. The book of Job essentially has no answer other than "because." Perhaps we humans truly are unable to comprehend the reason.

An old (90+) Jesuit acquaintance recently sent me a book, "God of Surprises" by the late Gerard W. Hughes (SJ). His obituary might interest you: (http://www.theguardian.com/world/2014/nov/06/gerard-w-hughes ) in that he seemed to struggle with similar questions that you ask. I haven't read the book but his life as described in the obituary seems to affirm the modern stereotype that the Jesuits are not Catholic. It sounds like he was someone who struggled with his RCism and the question of God too.

Fernando Lavana said...

Suffering is a big deal. However, if you look at every productive element in life, we suffer. We make our beds, we cook our food, we work out, we have to learn, and we have to take tests. All of these topics have some sort of small sufferings. I remember when Ashley made the kids a huge play set. It was no easy feat and their was suffering in doing it. However, the end result was happiness for our kids. I would work for this and that, but in the end that means food for our children and and a paying the bills. Suffering comes in many forms. When we choose to suffer, we suffer, but we do it for something good, not necessarily happiness and fun, but for something good for goodness sake.

Perhaps God chooses suffering, i.e. for our daughter for something greater than we know, but not out of sadistic thought, but for something good for goodness sake. I think of often how we discipline our kids and they don't understand the suffering they are having, but in the end they feel more mature in their development after it. They learn restraint. I think there is something to be said about maturity and suffering. The more we accept our suffering the more mature minded we've become. When I was working at the rehab, I've often thought about all of those addicts, and how immature they were because they could not accept restraint and suffering which made them less mature.

Zelie suffering once again would be seen as God choosing for God's purpose not ours and we are not seeing, deny, or fail to see her suffering's purpose. The implication for us, people, is that we are immature if we are not accepting the suffering just like kids or the addicts because we have not seen the ultimate purpose. I think of how she makes everyone happy by just being there smiling as a beautiful purpose.

fRED said...

Suffering is hard.... Suffering is also hard work. In many ways, suffering is life. Life is filled with challenges, struggles, disappointments, heartbreaks, pain and sometimes PAIN. But life is also beautiful, wonderful, delightful, satisfying, etc.

The tough part about suffering is when we encounter it unexpectedly and without asking for it. Then, it catches us off guard and we almost instinctively recoil from it, like what happens when you accidentally burn you hand while cooking or ironing.

The answers we get from religion about suffering often sound hollow and meaningless. Such answers can often inadvertently intensify our pain.

In my experience, suffering is worse when you are alone. My experience has shown that the joy of the companionship during the journey together often can minimize the suffering to the extent that it does not even register. Years ago when I was a regular bicyclist, I found that when I rode alone I would easily tire and wrestle with pedaling. However, when I found a companion to ride with, I often could go faster and with less effort and the time seemed to fly by rather than drag.

I wish I had answers for suffering. Since April, I have been listening to the daily broadcasts (26 min each) of R.C. Sproul's "Renewing your mind" (renewingyourmind.org). Last week (starting Monday June 5th) the topic was "Surprised by Suffering." I don't know if that might help you or not. Listening to those 5 days helped me to remember suffering is part of life. Yes, Sproul has a big Christian perspective on it but, hey, it's something. I would rather think (via religion) that suffering has some sort of higher purpose than to think that my suffering was merely random and pointless. I would like to think that better things are ahead because God has a bigger picture than we can ever conceive.