The Caution with Chronic Illness in the Family

After this there was a feast of the Jews, and Jesus went up to Jerusalem. ² Now there is in Jerusalem by the Sheep Gate a pool, which is called in Hebrew, Bethesda,^[a] having five porches. ³ In these lay a great multitude of sick people, blind, lame, paralyzed, waiting for the moving of the water. ⁴ For an angel went down at a certain time into the pool and stirred up the water; then whoever stepped in first, after the stirring of the water, was made well of whatever disease he had.^{[b] 5} Now a certain man was there who had an infirmity thirty-eight years. ⁶ When Jesus saw him lying there, and knew that he already had been in that condition a long time, He said to him, “Do you want to be made well?”

⁷ The sick man answered Him, “Sir, I have no man to put me into the pool when the water is stirred up; but while I am coming, another steps down before me.”

⁸ Jesus said to him, “Rise, take up your bed and walk.” ⁹ And immediately the man was made well, took up his bed, and walked.

John 5:1-9 NKJV

Before Jaycee, I had read the story of the man healed at the Pool of Bethesda many times. This man had been an invalid for 38 years. He had spent much time waiting by this pool hoping to be the first to step in when the water was stirred so that he could be made well.

Then Jesus came along. The man told Jesus that he had no one to put him into the pool when it's stirred and that someone steps in front of him preventing his healing. For years, I read this scripture with frustration at the man. He made excuses for why he wasn't healed, but his healing did come in a way he didn't expect.

After I had Jaycee, I got something new from this story. I thought about that man and the other people who stepped out in front of him. He suffered for 38 years, surely the people around him knew it. They never once thought about helping the man into the water first?

No! Instead, those around the water wanted to receive their healing. The passage tells us there was a great multitude of people with all sorts of reasons to want to step into the waters first. If they were first, they received their healing. Their life changed radically. At the same time though, their healing meant that other people (maybe worse off) were not and would have to continue to wait.

Can you imagine having the opportunity to change your life while others still suffer? Did they think about the people around them who would remain there still in their condition?

To me this scripture is a reminder. It is a story about how easy it is for us to be consumed with our own issues and problems and overlook the needs of others.

Early on after having Jaycee, it was very easy for me to become very self-absorbed in the middle of a health crisis. At birth, Jaycee was diagnosed with Down syndrome and a heart defect that would require open heart surgery. When we brought Jaycee home from the NICU, she was in congestive heart failure. After her heart surgery at 3 months of age, she needed oxygen for three months. After that health problem resolved, she started having an issue with her eyes and the beginnings of a very long battle of asthma that would lead to many hospital admissions and bouts of pneumonia. In other words, she moved from health crisis to crisis. Some were harder than others. There were some days of peace mixed in all the chaos, but the first year was extremely rough followed by more years of issues. The world of hospitals, sickness, and health problems was new to me, and I simply didn't know how to navigate it in a healthy way.

When Jaycee had a health issue, it would affect my emotions, thoughts, and attitude towards life. OK, it still affects me but I am armed with knowledge and understanding now. When I would hear about another person's health problem, I literally couldn't take it in. I had my own problems and it was all I could handle. I couldn't deal with anything else. Most likely, there were some people I should have stepped up and supported in times past but I didn't because I felt I couldn't. Not only that, I would get very irritated when someone complained about a health issue that was sooo not a big deal comparatively.

But, I've grown. I understand that everyone is on their own path. What may seem minor to me compared to what my daughter has went through is just the "worst" situation for another person. They need support, and I of all people know that! I have tried to develop patience and understanding for others in their own medical crisis even if I'm in the middle of one myself with my daughter.

This Bible story reminds me and challenges me. No matter how "bad" things are going. No matter what craziness is going on in my life. I need to stop and take a look around at the people I encounter. There may be someone in need whose being ignored by everyone else. Self-pity and self-centeredness only gratifies one person but a life looking outward can reach an unlimited amount of people. This is a lesson I'm challenged by often and hope to have perfected at some point in my life.

This post is written for the 31 for 21 challenge- where bloggers write about Trisomy 21 all 31 days in October. 

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?