Why does an infant die? Why does a loved one gets diagnosed with a terminal illness? And my own personal struggle of: Why is an innocent baby born with Down syndrome and congestive heart failure?
There are many things that happen in this world that don't make sense. Yet something within my human nature looks for the deeper understanding of why these things happen.
When my daughter was born with Down syndrome and a heart defect, it seemed that there were two strong schools of thought in the Christian community on this subject.
1. Down syndrome is something that comes from God.
People who believe this say things like: God has to make so many people with Down syndrome, and He chose you. God gives special children to special parents. God chose you to be her parents because He knew you could handle it. Having a child like Jaycee is a special blessing from God. Special kids are special blessings.
The Down syndrome diagnosis is something that should be embraced and accepted. It is viewed in a positive light.
The best scripture I found that supports this idea is found in Exodus 4:11 when God is speaking to Moses. The Lord said to him, "Who has made man's mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I, the Lord?..." NABS
Then there's the other thought in the Christian world that I have encountered:
2. Down syndrome is not from God, so it needs healed.
People who believe this say things like: Perhaps you sinned and brought this into your child's life. Maybe your child was born this way because of a generational curse or a demon. You need to pray that God will take this away from your daughter. If you prayed hard enough or had enough faith, your child would be healed. God doesn't want your child to struggle.
The Down syndrome diagnosis is seen as a problem. It is a sign that someone mostly likely did something wrong that caused this bad thing to happen. The diagnosis should be prayed against and not accepted. You should have faith to believe God can take it away or at least make the child function close to normal even with the diagnosis. In other words, Down syndrome is a very negative thing. Pity, shame, and condemnation can come to parents with this viewpoint.
The best scripture I found that supports this idea is found in Matthew 4:23-24. Jesus was going throughout all Galilee, teaching in their synagogues and proclaiming the gospel of the kingdom, and healing every kind of disease and every kind of sickness among the people. The news about Him spread throughout all Syria; and they brought to Him all who were ill, those suffering with various diseases and pains, demoniacs, epileptics, paralytics; and He healed them. NASB
Which is right??
Here's where I struggle with the first idea. If God does make someone with Down syndrome, how can I pray for Jaycee? How can I pray for God to help her read or talk or be better if she was created that way? With all of Jaycee's health issues and struggles, did God create someone to suffer and be sick often? Did God intend for her to struggle for some great lesson?
I have problems with the second idea too. If God doesn't want anyone to have Down syndrome, then how do I accept the fact that she does have it? It seems like if I accept her Down syndrome as is, then I somehow lack faith to believe she'll be different. And if I can't pray it away, then what does that mean for me? Am I to always be looked at in a negative light with "open doors" because my kid is sick often? If I no longer wish to spend my prayer time praying for her to be healed of her Down syndrome, am I giving up? When the Christians who talk about how abortion is never acceptable just because of a prenatal diagnosis but then demand that child be healed when they are born just seems completely odd to me!
Some people are very comforted by the thought that God created their child with Down syndrome for a purpose. Others are fine with thinking their child needs prayer for the Down syndrome to be removed. I have never been 100% comfortable with either scenario. I felt there was too much focus on her disabilities and labels and not her soul and humanity.
Is there a third option?
My pastor at Crossroads Bible Church did a series on Spiritual Living and it offered me new ways to think about our lives here on earth. Here's some things I learned from that series:
- 1 Thessalonians 5:23: Now may the God of peace Himself sanctify you entirely; and may your spirit and soul and body be preserved complete, without blame at the coming of our Lord Jesus Christ. NASB Jaycee is a spirit being with a soul (mind, will, emotions) in an earthly body.
- John 4:24: God is spirit, and those who worship Him must worship in spirit and truth. God is a spirit.
- Genesis 1:26: Then God said, "Let Us make man in Our image, according to Our likeness; and let them rule over the fish of the sea and over the birds..." We are ALL made in the image of God, even Jaycee!!
- Then I started reflecting on the Lord's Prayer in Matthew 6 which specifically tells us to pray: Your Kingdom come. Your will be done, on earth as it is in heaven.
- I also reflected on John 10:10: The thief comes only to steal and kill and destroy; I came that they may have life, and have it abundantly.
I don't believe that everything that happens is necessarily God's will just because it happens. We are told to pray for God's will to be done on earth. I don't believe that every diagnosis and every bad thing that happens is God's will.
I think when God made the earth and put Adam and Eve on it, He had a great, perfect plan. When Adam and Eve messed up, disobeyed God, and brought sin in the earth, the earth no longer had a perfect plan. There were negative influences that disrupted that plan that sought to steal, kill, and destroy the earth and the people on it.
While I do believe that sin, generational curses, our poor decisions, and our actions CAN result in a negative outcome manifesting in our life on earth. I also think that bad things happen because we live on an earth that isn't perfect. The earth is not Heaven. Heaven is a place our minds can't comprehend because heartache and suffering are regular parts our lives here on earth. I do think bad things can also occur for no reason at all simply because we live on earth.
I think when the doctor told me that Jaycee's extra chromosome was just a fluke occurrence that happens to an earthly body, I can FINALLY accept that now. I no longer search for a deeper meaning to it. It happened because stuff can happen to our earthly bodies. People can think I sinned or fell short or God made her that way. But, I found more peace when I just accepted the first explanation as to why Jaycee had Down syndrome that was given to me by that NICU doctor. It just happened. It could have happened to anyone living on the earth, but it happened to me.
Jaycee is still made in God's image regardless of her chromosome count. She has a spirit that will spend eternity in Heaven and has a soul. She feels emotions, she has will to choose, and she has thoughts....many of which involve Barney the dinosaur. God sees a person that He loves when He looks at Jaycee. The world judges her as less than or as less successful but God looks inside. I can look past her perceivable imperfections on her body and look deeper inside. She is someone that God loves regardless if she is healed or not. I think I'll focus on that instead.
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