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.
Mom blogs are on my mind, Catholic ones in particular. A few years ago, I stopped reading them, but I couldn't remember why.
Oh, I remember now. One reoccurring theme I see is a sense of denial at the absolute absurdity of the struggle we put on ourselves to gratefully find God's divine will for selflessness and purification through our exhaustion and stress.
Ok, that was a long sentence. But, what I mean is. Sometimes, we are just tired, and that is OK. Sometimes, we have placed too much on our plates and there is no lesson besides, "wake up stupid." Sometimes, life throws us a hard ball and we are left trying to figure out what is more important, feeding the kids and doing laundry or taking our child to a specialist that will make their lives more bearable.
Trust me, if you haven't dealt with the medical world, trying to fight for basic life decency for a child or spouse or parent, you don't know stress. Well, maybe you do, let me know.
The thing that just IRKS me is this mindless "God works in mysterious ways", "trust in the Lord", "offer your suffering up" crap that keeps too many of us enslaved in exhausting circumstances.
You know, life has a lot of real problems besides trying to figure out how you are gonna feed 5, 10 plus kids. I mean, we have wars and radicals. When we act like radicals, it doesn't help spread reason very much.
Ok, I got it out. Moms, give yourselves a break. Once I finally admitted I am only human, life got a lot more tolerable.
Do you see a
similarity between devout catholics and devout islam? Muslims have their apologists?
Do you see
that objectively both appear very similar in their conviction and truthfulness?
Do you see
the possibility that perhaps you could be wrong? Why
willing to let go of your faith if it went against your conscience? Why
How do you
explain children dying and suffering in God’s divine will? I don't want to hear how it is our free will, I want to know HOW you believe a good and loving God could allow innocent children to suffer.
ever felt unbearable suffering or known someone very close to you who had
suffered disproportionately? In what way
do you see this as the act of a loving God?
Even human parents are willing to take on the suffering of their
children, why wouldn’t God do that? Do you think that is the way a good father
should actually act?
like me, an educated, well meaning, theologically aware, and rooted in a
positive community person, could fail horribly at living and persevering in the
Catholic faith in a sense of whole and positive life, how can we expect
uneducated, perhaps mentally ill, or impoverished people to live the Catholic
a moment that angels, demons and spirits are a fabrication of our imagination,
as fairies, magic and leprechauns, do you see how teaching these ideas to our
kids is actually detrimental and abusive?
How dare we
teach things to our children that are terrifying that we have no actual basis
Can you see
how having multiple children for some people can be very difficult, but NFP doesn't work well in their situation? (As in mine)
Can you see
any basis for morality other than divine?
Seeing as Jennifer Fulwiler has 6 children, is a devout Catholic and ex-atheist who makes her living off of spreading the news of her conversion, I feel a special connection to her.
You see. I was a Catholic convert, very devout, and made a ministry out of spreading my testimony of conversion. I also have 6 children and am now an atheist.
Our stories are so similar and so very different. Our lives are mirror images as she blogs frequently of the perils of Catholic life. I too have lived all these things. The song made out of bad church situations is all TOO familiar to me. The feelings of dissatisfaction of not being able to have our real life experiences of Catholicism live up to all our grandiose ideas. She is excelling somehow at self promotion and pursuing her career in spite of a chaotic home life with multiple small children.
So, if Jen would indulge me.... I have a few questions.
1. Have you pursued any higher education in Theology now that you have become a Catholic and a national (international?) promoter of Catholicism?
2. Would you be willing to deconvert now that you have basically built your life around Catholicism, if it meant losing your notoriety, if your conscience should turn against Catholicism?
3. Do you enjoy the debates in the church about holding hands during the Our Father, wearing veils or not and different rites and liturgies?
4. Does it make you feel secure in your faith knowing that it is 2000 years old, held by millions of people, and extremely organized even though none of these facts actually prove anything?
5. You say in your testimony that you had a feeling in your heart when you looked at your baby. Do you know that Mormons think their religion is true based on a feeling in their heart?
6. I know you have experienced physical suffering and scares. Have any of your children had to go through anything like that?
7. Would you be willing to talk with me more in depth about these types of things?
If you've read this, thanks so much! I really hope to hear from you. As I have given 20 years of my life, a career and six kids in support of the Catholic Church, I think I deserve a little credit. I hope you think so too!
Young people are so easily influenced. Put a multinational institution that claims divine authority and inspiration, and you have a set up for complete deception. I would not care so much if it was about career or music or sports. This is about mind control and guilt and life choices that forever effect the person. Once a person commits to a life of religious influence those choices cannot easily be reversed.
I am stuck in a marriage that is extremely difficult. I have six children who need attention and care. I have a degree I can't use. If, perhaps, I had used my time and talents towards learning real life needs and appropriate decision making instead of trying to follow the spirit and be willing to do things that were not rational, then maybe I wouldn't be in such a mess.
I am especially frustrated and disgusted when I see young people devoting their lives and futures to promoting this ideology that is setting them up for consequences that they are not prepared for. There are false promises of God leading you, and not giving you more than you can handle. The lie that Christ is all you need and that you should hate everything else is comparison to him.
It's all bullshit. It is mind controlling manipulation. I would love if people would stop promoting such unwarranted and destructive make believe as if it were some sort of divine revelation.
What can I do??? I am sick of debating. I am scared of being targeted like the atheist bloggers in Bangladesh. This blog is my effort to share my story and experience. Hopefully it can help someone.