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.

Related Post: Does God Make Down syndrome? 

The Why Game

Often between ages 2-4, children will start to question "why."

I remember conversations with Elijah going like this.

"Let's get ready for bed, Elijah."
He asked, "Why?"
"Because we have to get up early in the morning," I said.
"Why?" he continued.

At times, the why question kept going on and on until I didn't even have a good response for him. Yet, the questions kept coming and coming and seemed meaningless. He just needed to listen to me and move on.

I've been thinking lately about how many times I have gotten stuck in the 'why' mode and couldn't move on. When something went wrong with Jaycee's health, I would often ask God why. Sometimes, I would ask doctors why Jaycee was so sick often. When they didn't have a good answer, I would go to google and search for one. Other times, I would analyze everything I had done prior to a big respiratory distress looking for a reason as to why it happened. This often resulted in me cleaning neurotically to get rid of any allergens.

For me, I think that I often want to know why something occurred because I don't want it to happen again. If Jaycee gets really sick, I want to know if there's something I can do or medicine can do to prevent it from happening again. Most of my why questions are really motivated by fear.

Why is such a small word yet has the power to keep us in a spot where we don't need to stay. Sometimes, there are no good answers. Just hunches or guesses from our human understanding. I am convinced that most of the time whatever reason we come up with to satisfy our need to understand is probably all wrong.

Take this passage:

Acts 28: 3-6
But when Paul had gathered a bundle of sticks and laid them on the fire, a viper came out because of the heat and fastened itself on his hand. When the natives saw the creature hanging from his hand, they began saying to one another, "Undoubtedly this man is a murderer, and though he has been saved from the sea, justice has not allowed him to live." However he shook the creature off into the fire and suffered no harm. But they were expecting that he was about to swell up or suddenly fall down dead. But after they had waited a long time and had seen nothing unusual happen to him, they changed their minds and began to say that he was a god.

The natives knew there must be a deeper reason why Paul was bitten by a viper. Obviously, he had deserved whatever he got was their first thought. When he didn't die from the bite, then they did a 180 and decided he was a god. They were playing the why game too.

Asking why isn't a bad thing, but it is if it keeps you in a mind set that doesn't allow you to move on. Not everything can be explained. Not everything has a good and justifiable reason to it.

Here's where faith comes in. When you have questions, when you don't understand, when you have doubts, you must pray and give it to God. Faith is moving forward with your life even when you don't understand. God is still there whether you have answers or not.

Whether Jaycee is healthy or sick, she is still loved by God. He is there. Whether or not I understand everything that happens in my family, God is still God. He is there. He cares. Staying faithful in times of not understanding is really the true test of our faith.

Getting Focused

Walking down the street, Jesus saw a man blind from birth. His disciples asked, "Rabbi, who sinned: this man or his parents, causing him to be born blind?"
Jesus said, "You're asking the wrong question. You're looking for someone to blame. There is no cause-effect here. Look instead for what God can do."
John 9:1-5 Message Version


This week I read this passage as part of my daily Bible reading. I love this passage of scripture for many reasons but this is the first time I have read this scripture in the Message version of the Bible. This version spoke new things to me.

When something bad happens, it is often human tendency to figure out the why of a situation. Why did my loved one get sick? Die? Get into a horrible accident? Be born with a condition? Some people blame God for their situation, some see a situation as a test from God, some blame Satan, some blame the sin of the person, some blame the sin of their ancestors, and on and on. Ten different people can come up with 10 different reasons why something bad happened. It can be confusing. Some people get stuck here in the 'why' spot trying to figure out what happened, who to blame, and possibly how that can get them out of it.

I know I have in the past.

It took me years to get past trying to understand why a God serving Christian could have a baby born with Down syndrome and a serious heart defect that caused congestive heart failure. Everyone gave me their opinion. To some, I had sinned and caused this to come. Other said Satan was to blame for the situation, trying to steal my baby's health away. Others told me Jaycee was a gift from God that He wanted me to have. One kind soul told me my daughter "had a demon" in her causing her Down syndrome.

I learned that as I struggled to understand why Jaycee was born with a syndrome and health problems, other Christians, who knew us, were struggling too. As I write this, I want the readers to understand that we were upset with the fact that Jaycee was going to have a harder life, physically, mentally, and medically, than any other child.

Asking questions and trying to understand why isn't horrible unless it impedes your relationship with God. If you get stuck in the blaming and the reasoning and don't move on, then that's a problem. Just as Jesus said, you're asking the wrong question. Your focus is on the wrong part. Look instead what God can do.

The bottom line is....no matter what situation you are in, God is the solution, the peace, and the source of joy. Focus on what God can do in your situation.

In the past few weeks, I have had a few people ask in my presence, "Why would Jaycee have to go through this sickness? I don't understand it."

I don't understand all of it either, but I have found an "answer" that satisfies my soul that maybe I'll get into in another post. I'm not upset that Jaycee got really sick recently. A few years ago, I probably would have been upset. I would have questioned God and been upset that He didn't prevent it from happening. But, not this time. All I feel is gratefulness that God was able to supernaturally bring Jaycee from the brink of death back to life and back home to us again.

God did something in my situation. I'm not looking for someone to blame. I'm not going to lose my focus.