Wednesday, January 28, 2015

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.

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Wednesday, January 21, 2015

Does God Make Down syndrome?

There are many great mysteries in this world.

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.
After looking at many scriptures, I came to the following conclusions:

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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Wednesday, January 14, 2015

10 Signs You Are In Hospitals Too Much

Over the past nine years, I have made many journeys to our nearest Children's hospital with Jaycee. Between the surgeries, hospital admissions, and specialty clinics, we go to St. Louis often. So here are the 10 signs that you are in hospitals too much:

10. You can give strong recommendations about the hospital cafeteria food.
9. When you watch shows like Grey's Anatomy, you recognize some of the terms, procedures, and diagnoses they are using.
8. Many of your stories begin with, "I remember that one time we were in the hospital when..."
7. Various staff all over the hospital recognize you and your family.
6. The words emergency, hospital, rare complication, or IV can make you break out into hives.
5. People ask you questions about the hospital and you know the answers to them. (When are visiting hours? Is there a place to do laundry here? Is parking free? Where's the parent lounge?)
4. Stuffed animals and balloons only make you think of being in the hospital.
3. You can never vacation in the same city as the hospital because you have too many bad memories associated with that city.
2. When you tell your other child you're taking their sibling to the hospital for an appointment, they ask what day you'll be back.
1. You and your spouse argue over what health event or surgery happened what year.
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Wednesday, January 7, 2015

When a Talker Stops Talking

Boom!!

Jaycee was trying to take her coat off at church while holding her Bible and her communication device ("the talker") when her device crashed to the hard floor.

I didn't think anything about it. The talker has had many, many falls. On concrete, carpet, the ground, down a few steps, the talker has had many accidents, yet it has always been fine.


This is her talker's home screen when it's functioning properly. It works similar to an IPAD. You push an icon which opens up a related screen. The talker speaks whatever she pushes.


We have had Jaycee's Vantage Lite from PRC for a few years. It has only been "broken" one time when the battery stopped holding a charge. So, it had to be sent off to be repaired that one time. Overall, we have found the Vantage Lite to be very durable. It is considered to be medical equipment, so the talker is $,$$$!! Yes, you would certainly be surprised at how much these things costs.

At home, Jaycee uses total communication. She says a few words, she signs hundreds of words, and she uses the talker to supplement what she can't say using the other methods. 

Anyway, I looked at Jaycee's talker after church and noticed it was on the loading screen instead of the home screen. I knew there was a problem. I did some troubleshooting on the device with no change. The talker would not talk and it was time for lunch.

 My first thought was, "Shoot! We are having a lot of things today she can't sign."

The first problem we encountered, Jaycee couldn't pray. She pushes her prayer button before receiving her food. No talker=no prayer. During the meal, I usually push a button on her talker in an attempt to get her to converse with us about something. That opportunity was missed today. We had to stick with yes and no questions.

Then it came time for seconds on food, she was pointing and gesturing intently but I was lost. Really, I think she was saying she wanted more of everything, but that wasn't going to happen. She was pointing to her plate and making motions. I picked a great day to have tacos and salsa, both of which we use the talker to say. We finally got it figured out, but it wasn't an easy process.

After lunch, we took off the battery cover to reveal that something had come loose from the fall. Fortunately, the talker was fixed and Jaycee was back to communicating!

You don't really know how much you depend on something until it stops working. Just another thing we deal with on our special purposed journey.
 
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