Tuesday, January 10, 2017

When People Say My Daughter's Down Syndrome Needs Healed

A small replication error causing three copies of chromosome 21 is the definition of Down syndrome in it's simplest form. The fact that this happened to my daughter Jaycee was completely random. It was no one's fault.

But, Down syndrome and it's medical definition is not a good enough explanation for many people. Over the years, many well meaning people have offered me the deeper reason why my child has Down syndrome. Some of these include:

-God gives children with special needs to special people.
-God blesses people with children with special needs who can handle it.
-God makes so many people with Down syndrome, and He choose you to receive one.
-God does not want anyone to struggle therefore, she needs prayer for healing.
-A demon, sin, or generational curse brought this upon your child, so you need to repent/pray.

I understand why people have offered me this information over the years. I too have looked for deeper meanings in the big and small things that have happened in my life. I even searched for the deeper meaning when Jaycee was born.

I struggled with how to pray for Jaycee initially as I tried to understand why my daughter was born with a disability.

At first, I felt it was my duty to pray for her to be healed completely or at the very least have Down syndrome with minimal effects. But, I started to not like those prayers. I felt that those prayers were selling my daughter short. I felt my prayers were only focusing on what was wrong with her and how she needed to be "more like everyone else." Did God view her as imperfect as my prayers seemed to suggest?

Here were some questions I had as I muddled through the subject of disability, God, and Christianity:
-Is the presence of disability the absence of God or is it something else?
-Can a person with a disability serve and love God?
-Can God accept a person with a disability? 
-If everyone should be healed, why didn't God heal Moses of his speech impediment instead of appointing Aaron to be his "mouth?" (Genesis 4)  Could I be Jaycee's Aaron?

I want to make it clear that I believe in healing, prayer, and miracles. I believe all people with big and small ailments need prayer and benefit from prayer. However, I do believe people in the church can show a lack of acceptance of those with disabilities when they only interact with people with disabilities to pray for healing. This post isn't necessarily about the topic of healing but how to approach those with disabilities in the church.

Let me tell you a personal story.

Some time back, I decided I was going to start and host a small group in our church. My group was going to be for parents of children with a diagnosis. I wasn't sure if there were even any other families in my church that were like mine besides the one family I was already acquainted with.

One Sunday was declared the small group sign up day. I stood by a table near my sign up sheet hoping and waiting for other parents to come and sign up. After a few minutes, someone approached me that I was only slightly familiar with at church. The person asked me how my daughter was doing. After my response, she went on to say she is still praying and believing for my daughter to be healed of her Down syndrome and encouraged me to keep believing for that too.

I was taken aback. I smiled and probably told her thanks, but inside I was screaming. There I was hoping to meet and support other parents in a similar journey. Instead, I was reminded just how some Christians view my child, as someone who is incomplete without healing.

I stood there another minute or two and then joined my husband who was waiting for me in the van with the children. He was surprised to see me so soon, since I told him I would be at my table for awhile. I had to get out of there. I started crying as I recounted the story to him.

It may not seem like a big deal to you. Perhaps, you think that person did nothing wrong. They didn't really. But their approach was what upset me. The only topic of Jaycee was her Down syndrome and her need of healing. Period. Jaycee is more than her diagnosis. I have to battle this is the real world all the time, and I don't want to have this battle at church too.

The miracle of 2013
After that experience, I prayed about what happened. I asked God how I could respond to people who only want to talk about Jaycee in terms of needing healing.

You see, I don't feel like God sees Jaycee's Down syndrome as such a huge problem that we do. Jaycee has not been healed of Down syndrome, but she has received healing and grace in her life during her many illnesses and hospital admissions. She was literally on the brink of death once in 2013 when she was maxed out on support on the ventilator. I truly believe that God heard our many prayers for Jaycee during that time and is the reason she is still here.

I know that God works through her even if His healing power isn't manifesting the way everyone would expect it.

Because of all of this, I decided that future people who want to pray Jaycee's Down syndrome away will be reminded of this one thing from me:
Jaycee's body isn't perfect, but her spirit is.

I believe Jaycee's spirit is God's main concern since that is what will join Him in heaven. In that regard, she is way ahead of us in living a life that is Godly. I am not opposed to people praying for Jaycee. But, I do hope they want to get to know her, appreciate her for where she's at, and acknowledge the ways God has worked in her life.

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