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The death of a child forces us to question all of our core beliefs. Our relationship with and understanding of God will change.

 

Faith Versus Planning

Is creating a web page (or reading a web page) about preparing for the death of your child indicative of a lack of faith in God? I don't think so. As I've said elsewhere on this site, if true miracles happened as often as we wished they would, they'd be called Commonplaces. There is absolutely nothing wrong with praying for God to save your child. I never prayed harder for anything in my entire life. I asked everyone I know to pray, and they spread the word to pray as well. We had 750 people (at least) praying for Emily. I don't doubt the efficacy of prayer. I truly believe all those prayers had an effect on us. They didn't give us our miracle, but that's not to say they were ineffective. I'm sure I felt the power of everyone's support. I had several experiences which proved to me that God was enduring the waiting and the grief right at our sides.

Planning doesn't negate faith. If you believe in God as an omnipotent being, then you believe God has the power to heal your child. When the Gospels write that Jesus couldn't perform miracles in his home town because the people lacked faith, it's because those people lacked even the faith that he could do it, not because they didn't believe hard enough that he would. They were, in a sense, ridiculing God. I don't endorse ridicule even under the best of circumstances. God most certainly could transform any of our babies into perfectly healthy babies. I believe God could raise my daughter from the dead and heal her even now. Will God do that? Probably not. But I'd be very open to it happening if it did.

St. Athanatius wrote, "Pray as though everything depends on God. Work as though everything depends on you." This became our motto. We prayed for a miracle and planned for a funeral. I don't think there's a magical number or type of prayers that can force God's hand. There is no correct amount of faith that will coerce God into a healing that isn't in the divine plan. We can ask. We can beg. But in the end, God has the final say.

 

Our Nefarious Plan

In the Catholic Church, a person needs two documented posthumous miracles in order to be canonized a saint. The first miracle beatifies the candidate; the second completes the process. I decided, in a move my husband called "mercenary Catholicism" to pick a person who was pretty much bound to become a saint eventually anyhow, and ask for that person's intercession. I'd point out that we could help each other--get me my miracle and I'll lobby to get it recognized by the church. (Catholic readers will probably chuckle; protestants will be horrified.) We selected Fulton J. Sheen, and I even got ahold of the priest (a very holy, helpful man) spearheading the campaign for his sainthood. I still think it was a good idea--these people are bound to get two miracles eventually, and I was asking to be one of them. In the process, I learned quite a lot about a very spiritual man. I'm not suggesting anyone else take this course of action, but it did give a structure to our prayer.

 

How could God do this to us?

This is the book of Job in a nutshell, and I found comfort in that the writer of the book of Job didn't seem to have an answer either. Thomas Aquinas admitted that innocent suffering is a very good argument against the existence of God. Philosophers and scholars have debated this for ages without reaching a satisfactory conclusion, so I won't even try to answer it on a web page.

I don't know what God has in mind. I know several people tried to tell me that they knew what God had in mind, but it didn't help. (But now I know who to ask the next time I need to know the mind of God!)

"Children are a gift from God." The conclusion I reached was essentially that--Emily, anencephaly and all, is a gift from God. I'm not sure why I couldn't keep my gift, but that conviction only grew stronger the longer I carried her. Emily made me understand the preciousness of time and the precariousness of life. I grew to love her individual soul and what I could decipher of her personality. She has changed me and my husband and our relationship to one another and to the world. She has affected the life of her brother. She has inspired many and shown others the value of a life, even if brief.

 

Anger at God

The first thing my parish priest said to me was, "Get angry at God. God can take it." I would think that it damages any relationship to deny a genuine anger more than admitting to the anger and trying to work it out between the two of you. As you would do with a spouse or a close friend, when you become angry at God, talking it through ought to be an option. I count it as a sign of respect and trust when a friend confronts me about something I did, so I hope God does too. When my husband contracted cancer back before we were married, I got so angry at God that I couldn't really pray for two years. I felt the anger and either denied it or else waited for it to go away on its own. It didn't, of course, because I felt God had played dirty with me in the way things unfolded. My husband's cancer was cured, but my anger wasn't. (For the whole dirty tale, check out Holding Hands With God, edited by Ronda Chervin; my story is called "Engagements".)

A long time ago I read, "Animosity toward God is still contact with God." I believe that's true. As long as you don't cut ties, you can work through the anger and your sense of betrayal in the relationship. Then you can reach a new understanding.

 

What comforts me?

I believe that God gives children to the parents best able to love them. We can answer or ignore this call, and the newspapers too frequently carry stories of parents who failed to love. However, a thought which comforted me and might not comfort anyone else, is that for some reason Emily needed us as parents more than we needed a healthy child. I had a particular way of loving her which matched up to her needs better than any other woman. You will have a certain style of loving your baby which also will best match up to your baby's needs. You are the best parent for your child.

 

Bible verses

I'll share the ones that came to my mind, but I have to warn you that I'm a bit cynical. The first one was this:

"I am the Lord and there is none else,
I form light and create darkness,
I make good and create evil--
I the Lord do all these things."
Isaiah 45:7

Most of the Bibles I've seen have translated the line with good/evil a little more gently, but my Biblical history professor, who also taught Biblical Hebrew, says that's the most accurate translation. Weirdly enough, that comforted me. I needed to know that this apparent evil done to my daughter was really something under God's control.

My husband pointed out the line from Job (3:10) "Shall we accept only good from God and not accept evil?" Since then I've also found "It is I who created the smith to fan the charcoal fire and produce the tools for his work; so it is I who create the instruments of havoc." (Isaiah 54:16) I know this wouldn't make most people happy, but I felt vindicated at least a little. I don't think I could handle believing what a number of others told me they thought, that this wasn't God's doing but rather Satan's. If it was Satan, that makes us a victim. If it was God, that makes us a part of the plan, and I could deal with that. I just wanted to make sure that God knew I was well aware who was responsible. (Don't let my bizarre theology mess up anyone else's, though.)

Later on I didn't think about those as much. The one below was very important to me, though, and it's one of the passages we had read at Emily's funeral:

"Whoever humbles himself like this child is the greatest in the kingdom of Heaven. And whoever receives one child such as this in my name receives me." (Matthew 18:5) I'd always applied that verse to using natural family planning (since we might well end up receiving one such as those whether we wanted to or not!) but later I saw that we were receiving Emily just as she was, and in doing so, maybe we were taking a little bit of Christ into our hearts and our family. A little further down, "See that you do not despise one of these little ones, for I say to you that their angels in heaven always look upon the face of my heavenly Father." (v 10) So many people--doctors, friends, those who've terminated--seem to despise our babies and will then act as if they despise us. But God clearly treasures them.

I don't have the verse on hand right now, but when Jesus says that whatever we've done for the least member of the kingdom of God we've done for him--that made me feel better too. And in the sermon at her funeral, the priest spent a long time talking about how two sparrows can be sold for a penny but not one falls without God's notice. God did take note of Emily's life. And God definitely made use of her life on this Earth.

I'm interested in passages that helped and inspired others. I welcome input from other faith traditions as well! My familiarity and most of those with whom I've spoken is limited to Judeo-Christian scriptures. Some others' favorite passages follow below:

"Fear not for I have redeemed you; I have called you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Saviour." - Isaiah 43: 1b-3a

"And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose." Romans 8:28

Monika writes:

The first and most important for me :

For what is mortal must be changed into what is immortal ;
what will die must be changed into what cannot die.
So when this takes place, and the mortal has been changed into the
immortal,
then the scripture will come true :
"Death is destroyed ; Victory is complete !"
"Were, Death, is your victory ?
Where, Death, is your power to hurt ?"
...
But thanks be to God who gives us the victory through our Lord Jesus
Christ !
1 Corinthians 15.53-57

God gave me this passage some days after Anouk's diagnosis. Immediately
I decided that it would be on the birth announcement. Even if at this
moment everything seemed lost, I knew through this verse, that it was
only a battle but not the war.

"Man looks at the outward appearance, but I look at the heart."

1Samuel 16.7
helped me to look at Anouk with my heart, not my intellect. It's not
the lack of her brain who makes her less important in God's eyes.

"God is our shelter and strength, always ready to help in times of
trouble." Psalm 46.1 was my device during the last months.

There is also a German proverb I'll translate :
Turn your face towards the sun, so the shadows will fall behind you.

Others?

I would like to hear others' reasoning--what comforts you? Why do you think this happened? What do you think your child's life has accomplished or will accomplish?

 

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