Keeping Your Faith When Life Tries to Take It

I know I can be strong. I also know I can be broken.

Life hasn't been easy since becoming a parent over a decade ago. In fact, it's been very, very challenging. Yet, I still have faith in the goodness of God and consider myself a Christian.

My faith in God was strong when my husband and I were looking forward to the birth of our first child. At that time, I would have described myself as a very carefree, optimistic, and joyful person.

When Jaycee was born, I was 25 years old, and it would be my first big crisis of belief. I was expecting to deliver a healthy baby girl and return back at my job in a school a couple of months later. But that isn't what happened.

Instead, Jaycee was born and sent straight to the NICU for 10 days. She was diagnosed with Down syndrome, AV canal heart defect, pulmonary hypertension, and congestive heart failure before we left the hospital. I came home with a baby who needed intensive care, lots of medications, and an open heart surgery.

Having a child with a life threatening condition made me a mess. At the same time, I was also hopeful. I know it doesn't make sense. In the beginning there was faith inside of me that rose up. I prayed, spoke scriptures, and even fasted over her. I leaned upon some of that optimism that came naturally. At the same time, depression started to creep in. This feeling was new to me, and I didn't recognize it right away. I was overwhelmed and shocked by my baby's diagnoses and sudden turn of events that came in my life. 

Over the course of a few months into this battle for my child's health, I became a depressed Christian. Some people may think that's impossible, but I can tell you that it is possible to love God and believe in Jesus but to be sad from an event in your life that spirals you down further than you ever anticipated. Is it Godly or right? No. But, you can have very big doubts while you try to do life.

Jaycee's first year of life left me with more questions and worries than faith. During that year, she had an open heart surgery followed by 3 months of oxygen use at home. She failed a hearing test prompting talk of tubes. She started wheezing when she was sick and asthma began being discussed. Her eyes started to turn in and cross which meant seeing another specialist who talked about a surgery in her future. Her developmental delays required home therapies every week. It seemed like every time we turned around; we got bad news.

Any hope I had in God when Jaycee was born was gone by the time she was a year old. I was worn out in every way and my relationship with God suffered. It wasn't a conscious decision I made. It was a slow process of allowing negative thoughts and doubts to infiltrate my thinking and crush any faith. I also doubted the effectiveness of my prayers. Therefore, they became shorter and shorter and done less and less often.

There were questions I had that didn't seem to have any answers for. I couldn't find justice in our situation. I cried to God about my daughter's health with seemingly no response and no miracles.

I continued my Christianity by reading scriptures, going to church, and trying to love God through so many immense emotional and mental struggles. I waited for things to get better. I waited for Jaycee's health to improve. I waited for me to see something happen in her life to know that God was still working in our lives or that He cared.

What can I say? I wanted things to be easier for me and the rest of my family as proof God was with us. But, that hasn't been the case. Struggles have continued over the years. The events the played out after Jaycee's first year of life until now are too much and too long to explain in one post. Here's a sampling of some things we have parented Jaycee through: 20 something hospital admissions for illness/emergencies, 3 heart caths, 2 open heart surgeries, daily medications, bi-pap at night for 8 years, respiratory distress at home, helicopter transports, etc.

Here's what I want you to understand. Life hasn't gotten magically better for my daughter. She hasn't become verbal enough to speak in sentences. She hasn't gotten off her medications. There aren't less doctors involved in her care. She hasn't stopped having scary health emergencies although they are becoming less frequent. The respiratory problems haven't been outgrown. She can't get rid of the medical equipment in her room. There wasn't a "miracle" in any of these areas, but we have seen God's hand on her life in times of serious illness and other situations. I realized the proof of God I wanted came in other ways, not just "healthy" times.

Despite all of this, my relationship with God is strong. After struggling for awhile  when Jaycee was younger without exactly knowing how to pull out of the place of shaky faith I found myself, I changed. I transitioned from a struggling Christian to a Christian with a renewed love and heart for God and her life. It wasn't easy. In fact, it was really hard at first. But it became easier. I believed the things I originally felt about God, and prayed with the faith that God did listen and hear. Something changed in my heart.

Have you been struggling? Here's my advice on how to rekindle your faith while your circumstances are challenging.

• Connect with God. I kept going to church and reading the Bible even when it was hard. Faith for me some weeks was just showing up at church saying, "God, I believe in you even if I don't understand my life right now." Other times, I read a chapter looking for anything that would speak into my situation. I still tried to show a commitment in some way.
• Continue to pray. Here's where I messed up. I started to believe the thoughts from the enemy which said my prayers were pointless. But, prayer is always the key! I wish I would have recited the Lord's Prayer if nothing else to keep the habit. Whether you believe God is hearing or not, pray through it.  
• Find a friend who listens. This is hard when you're struggling. You believe no one will understand or no one has gone through what you have. You may know no one in your situation, but I hope you know someone with faith. That's all you need, someone with ears and faith. Maybe you tried to open up to someone and that ended badly. Try someone else. Isolation is not good! Find a friend who will listen and give Godly counsel when you are struggling. Keeping your doubts to yourself with only allow them to get bigger and stronger.
• Focus on the good things. There has to be SOMETHING good that has happened in life. Maybe you made it through the day without getting emotional. Perhaps someone took time to mail you a card. Maybe you got 8 hours of sleep. Sometimes, you have to be grateful for the little things and celebrate the small stuff. When life is hard, it is nearly impossible to find something positive. Find something everyday to be thankful. If your ratio of complaints far exceeds your thankfulness, then you need fresh eyes for your circumstances.
• Be patient. I know some days will be tough. You may feel like staying in bed all day or giving up on your responsibilities. Don't beat yourself up if you had a day full of anxiety or tears. Have patience with yourself but don't allow yourself to stay in an unhealthy emotional place. You deserve better than that.

There is hope in life. Even when things don't turn out the way you prayed, God is still God. Without faith, we have nothing, so fight to keep yours if life is trying to steal it away. Blessings!

Does God know what I can handle?

If you are a Christian going through a trial, I would almost guarantee that you have heard a common saying in the church world:

God will never give you more than you can handle.

This exact phrase is not found in the Bible. Most people refer to 1 Corinthians 10:13 where Paul writes: No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it.

(I know some of you are scratching your head because you are sure that quote about God never giving us more than what we can handle came directly from the Bible. Look for yourself.)

This is a common saying that people use in an attempt to make us feel better. For me, it does the exact opposite.

Whenever someone gave me a sympathetic look and told me God would never give me more than I could handle, it made me shut down. It did not make me feel better.

In situation after situation, I heard this phrase. When Jaycee was having a second heart surgery or a second heart ablation, I was supposed to find comfort in knowing that God knew we could all handle this. Seeing Jaycee on a ventilator for three weeks I imagine was also something God thought I could handle too. No matter what the bad circumstances, these were often the words that people chose to say to comfort me.

I grew to hate these words. I got angry at the people who said them to me. It was as if I was experiencing something painful because I was strong enough to endure it. Huh? Other times, I took this phrase to mean that my trial wasn't anything to sit around and be upset about because God knew I could handle it. Still other times, I felt this phrase was saying God allowed bad things to happen to my life because I could endure it. That's a real motivation to stop praying!

One day, I was surrounded by a few people who were ministering to me. You see watching your child have surgeries, be in respiratory distress, and have numerous tests done some of which you help hold her down for is very mentally draining. I couldn't handle it. In fact, the panic, worry, stress, and fear had such a grip on me that I was not functioning well mentally. Obviously, I couldn't handle all of these trials with my daughter's health. I needed help to get over these things I witnessed, so I set aside time for prayer with some people I trusted. Through the ministering, this phrase came up about God not giving me more than I could handle.

For the first time, I spoke up and said, "I hate when people tell me that!"

My father, who was one of the people praying for me, gave me a different perspective on this quote. He said, "If you are feeling stressed, overwhelmed, and in a situation you can't handle, then it is not God giving it to you."

It was then that this popular quote from Christians became something I could agree with. When I'm feeling stressed about Jaycee's health, I know that God will be there to help me through my battles. He isn't the cause of the trial. He is the answer while I am walking through the trial.

So does God know what I can handle? Yes, but that doesn't mean he is the source of all the ugliness in life.

Will God give me the hope and peace to get me through the times that are difficult? Absolutely!

31 for 21: Taking Courage

Blogging 31 days for Trisomy 21 for Down syndrome Awareness Month Continues with Share a Scripture Sunday.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and let your heart take courage; Yes, wait for the Lord.     Psalms 27:13-14


This is a scripture that I often read when Jaycee is in the hospital. Jaycee's Down syndrome has never been the "hardest" part of our lives. Hands down, the most difficult part has been seeing Jaycee struggle with medical conditions that affects her daily life. Her asthma, obstructive sleep apnea, lung cyst, poor cough response, and heart history combine to make a simple cold very dangerous.

When Jaycee is at home wheezing and struggling to breath, I want to despair. When Jaycee gets worse and has to go into the hospital, I really want to despair. When she ends up in the ICU, well you know how I feel.

It's hard to live through those things once, twice, three times, and then more times than you can remember. That's why I need to read passages like this and remind myself to wait, be strong, and take courage.

Sometimes, I have to reach out and take the courage, it doesn't just come to me. I have to choose it and take it. Trust me, it's better to face obstacles with courage.

If you are facing something in life that makes you despair and doubt God's goodness, don't give up. Take courage today!

Why I Laugh

The 31 for 21 blog challenge for Down syndrome awareness month continues. Today is scripture Sunday.

Here's a scripture I have used in prayer often:

A merry heart does good, like medicine,
But a broken spirit dries the bones.
Proverbs 17:22

I have had many opportunities over the years to be upset. The challenge of taking care of a child with developmental delays and many health problems is sometimes very difficult. The post traumatic stress after one of Jaycee's hospital admissions is hard for me to put into words. There are times when my spirit feels broken. So I pray for myself. I pray that I will have a merry heart.

When Jaycee got out of the hospital this summer, I wisely asked for prayer from someone on the ministry team at church the first time I was able to attend church afterwards. My spirit was broken. I was worn out physically and emotionally from that hospital admission as I once again faced the idea that Jaycee's future wasn't guaranteed.

The prayer started out with me crying sobbing. And it ended with me laughing. I don't know why, but the prayer spoke to me. I did feel better. I felt like laughing, so I did. Immediately, the prayer partner said, "You keep on laughing! Satan thinks you have nothing to laugh about, so every time you laugh it confuses him."

Wow! I laugh all the time for no reason. I laugh when I'm nervous. I laugh at times when I'm mad. In the past couple of years, I have learned to smile and laugh as I'm trying unsuccessfully to get Jaycee to obey me in public while I'm screaming on the inside. I laugh a lot. People who know me have told me that I laugh easily.

Now, when I laugh, I have a new reason to keep laughing. It's my joy. It's my victory. It's part of my testimony. And it's medicine for my spirit.

Where is God when...

Where is God when Jaycee is turning blue from respiratory distress?
Where is God when Jaycee had heart surgeries?
Where is God when my little girl is in pain?
Where is God when we are rushing to the emergency room?


These types of questions have popped in my mind often since having Jaycee. Sometimes, the question was a whisper. It was something I could ignore or easily refute. I knew God was with me.

Other times, the question was screaming in my head making me doubt everything I believed and understood about my Christianity. The question tainted how I saw the world. It made me see nothing good in my life because the problems were so huge. I stumbled around day to day going to church, reading my Bible, and asking for wisdom during trials with Jaycee with lots of doubt hanging over me.

Here's the one thing I have discovered.  When I doubt God's place in my life, I become completely hopeless....about everything.

And that's not a good spot to be in.

Be strong and let your heart take courage, All you who hope in the Lord. Psalms 31:24

I've blogged previously abut how I don't blame God for medical issues that happen in Jaycee's life. I think some things just happen,. While I don't play the blame game anymore, there are moments when I look around and try to find God during a crisis.

So, as I reflect back on Jaycee's 2 weeks and 5 days in the hospital, I will answer the questions:
 Where was God when all that craziness was happening? Where was God when Jaycee was in respiratory failure and on a ventilator? Where was God when her blood pressure was going too low? Where was God when Jaycee was crying in sadness in ICU? Where was God when I was feeling all alone and scared?

• When Jaycee's breathing was going downhill at 3 in the morning, I was alone in Jaycee's room praying. I felt alone in my stress and worry as I prayed that the ventilator they were threatening would not happen. I thought about calling my sick husband, who was a few blocks away in a hotel, but I didn't want to wake him up. I didn't want to wake anyone up with this news but I needed someone to talk to me. Then at 4:52 am, my phone vibrated. My friend from church, Amanda, sent me a scripture through a text message. I don't know if that's a normal time for her to send a message, but I'm assuming not. I was so happy to have someone awake I could reach out to about this situation, since at that point I was the only one aware of it! I needed that text at that hour. That was a moment from God.
• During my two hours of praying against the ventilator and reading scriptures, I pleaded with God that Jaycee would not need the ventilator. Then finally, a thought came, "What if the ventilator is what she needs? She might need it to get better." It wasn't the answer I was looking for but the thought was from God. It was preparation. She would be fine even if medically she went down a road I didn't want her to go down.
• A short time later, a text message from Amanda again that encouraged me to listen to God. "It's ok if He says yes" that she needs the ventilator. Confirmation of a thought that came to me earlier! And a God moment.
• When my husband and I were sitting in the parent lounge while the doctors were sedating Jaycee, putting in her feeding tube, and intubating her, I was nervous but calm. Then the doctor came out to tell us Jaycee's blood pressure was dropping and wanted permission to put in an arterial line. That was my breaking point. I cried. I let it all out and the words, "I can't do this again," came out of my mouth. I wanted to give up because I knew the days ahead would be really hard. My husband encouraged me. Then the Unspoken song "Good Fight" came to mind. The song stayed with me for days; it was God in the song. Here's some of the lyrics.

"Good Fight"

Until you stop breathing
Until you stop bleeding
Until your heart stops kick-drum beating
When it's hard times
When it's long days
And the enemy is right up in your face
When your back's against the ropes and you're feeling all alone

Keep fighting the good fight (Never give up, never give up)
Keep letting your light shine (Holding it high as long as you live)
'Cause I'm never gonna leave you
Always gonna see you through to the other side
Keep fighting the good fight, fighting the good, fighting the good fight, good fight

Even in the road blocks (yeah)
Even through the rough spots
When you're feeling you've given all that you've got
I'm with you in the next step
Giving you in the next breath
I'll be the voice saying "You're gonna make it"
When you're out there on your own
You are never alone

• Then a few days later, I was listening to the JOY FM Christian radio station on my short 8 mile drive to the hospital from our campsite. And what song should come on the radio? Yep, "Good Fight" came on. God was with me on that drive. It was a powerful moment that brought tears to my eyes.
• God was there when people messaged me prayers and scriptures at all hours of the day.
• When I got the phrase "God's got this" messaged to me from 3 different people, I knew it was a God thing after the second one. It's not a common phrase people message me. Amazing!
• When people reported to me they were awakened in the middle of the night to pray for Jaycee, it was proof God was in our situation.
• And of course, Jaycee getting better and getting discharged from the hospital was a God moment.

So there was God in our hospital admission.

He did not show up in a miraculous move healing Jaycee on the spot and saving us from all those heartaches and tears. That seems to be the thing people look for during a medical crisis: a huge, major victory.

If that is the only version of God you allow yourself to have, you will miss all the little, powerful, and meaningful God moments.

So, I know where God was in our situation. I have no doubt He was there.

Will you be willing to look for Him in your situation?

Jaycee getting therapy post ventilator while she was in the hospital

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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