God Speaks-Special Needs Edition: Part 3

Welcome to part 3 of a series highlighting how God speaks to people. As a Christian mother raising a child with special and medical needs, I have to hear God's voice. I need God's wisdom and encouragement to raise my daughter and serve my family well. 

As a Christian, I understand God wants to have relationship with people. He wants to speak to those he has created. The Bible tells how God has spoken to people in the past. It also provides insight into how God communicates to people even today. There are numerous examples to look at in the Bible. In previous posts, I have discussed how God speaks through dreams and other people. In this post, I'll share some ways that God has used things in the world to speak to me. 

Photo by Adam Kontor from Pexels

There are many examples in the Bible of God using things in the world to speak to people. After the flood, God put a rainbow in the sky to convey a promise. Moses saw a burning bush that wasn't consumed. It caught his attention, and then God spoke to him. When Saul ripped the robe of Samuel, Samuel had a message for Saul from God: “The Lord has torn the kingdom of Israel from you today and has given it to someone else—one who is better than you." (I Samuel 15:27) These are just some examples of things happening in nature or in real life that carried a deeper meaning. Here are three examples from my own life on this topic:

An Annoying Bird

In 2006, a bird was tormenting me. I suppose the first thing you need to know about me is that I dislike birds. For weeks, a cardinal bird was repeatedly banging into windows at my house. My displeasure for birds only made this situation more annoying. The internet suggested that the bird running into my window wasn't too uncommon. From what I read, it seemed the bird was seeing its own reflection in the window and, thinking it was another bird, was defending itself. The bird just didn't peck and run into one window. It seemed to follow me around the house. It would run into Jaycee's bedroom window for hours, my bedroom, the basement, or the kitchen. It drove me crazy. 

At the same time, Jaycee was just a few months old and getting ready for her first open heart surgery. I was dealing with a lot at that time. I was a few months in to adjusting to the news of Down syndrome and a heart defect. I was giving medications and bottles around-the-clock. I was exhausted and stressed, as anyone would be in my situation. I was also tormented in my thoughts, and I struggled with fear with the health situations we were facing as a family. 

I am a person who looks for signs of God in my everyday life. After a while, I wondered if the bird meant something deeper. It certainly tormented me-much like all the other stressors in my life. I have a Christian signs and symbols book I reference from time to time. I recall looking up the meaning of a cardinal and discovering it can represent Satan. It seemed like the perfect explanation of what was happening in my life. Much like that bird attacking my innocent house, I felt like I was being attacked (and my daughter) out of nowhere. I had never dealt with so much stress in my life. My mind was being battered with thoughts that didn't come from God. I know they weren't from God because they were full of fear, worry, and anxiety. I felt a parallel with the bird's persistence at my windows to Satan's persistence with my thoughts and faith. 

Interestingly enough, when we came home from the hospital from her heart surgery, the bird was suddenly gone. 

Smoke Signals

Probably somewhere around 10 years ago, I picked up Jaycee from my mom's house and headed home. As I left, I saw smoke in the distance. I live in a rural area where sometimes people burn brush piles or farm fields, so smoke is not uncommon. The smoke can be seen from miles and miles away. On this particular day, the smoke seemed to be in the direction of my grandma's house. I had a bunch of thoughts come to mind with concerns about my grandmother and the fire's location. I sped up as I made my way down the road that passed by her house. As I got closer, I realized I had clearly misjudged where the fire was. The fire was miles and miles away from grandma's house. She was safe, and my worries for her were unfounded. 

As I continued on my way home, God spoke to me about what I had observed. Smoke does not always mean danger and loss. Sometimes, fires are planned and controlled burns do good. Smoke can look threatening to outsiders far away but it may not be. In fact, sometimes the smoke is a large puff, high in the sky making one think the fire is a huge disaster, yet the fire is quite small and contained. 

At that stage of my life, Jaycee's medical diagnoses were causing me to freak out completely. I easily jumped to worst case scenarios in my head. The congestive heart failure, Down syndrome, open heart surgery, oxygen use, and other issues were weighing on me. I was worried about so many things. Any new issue that popped up felt gigantic and too much for me to process. I blew some symptoms or issues out of proportion. I worried about Jaycee passing away; it was a real threat in my mind. The fact that doctors are required to give you odds, risks, and chances of death in procedures most likely fueled that fire (so to speak). 

God used my reaction to that smoke as a way to recognize my own reactions and fears with Jaycee. Not everything that seems horrifically out of control is. Not every symptom or issue was uncontrollable or untreatable. Jaycee's conditions weren't necessarily an impending disaster. I was over-reacting and jumping to poor conclusions much like I did when I saw that smoke in the direction of my grandma's house. Ultimately, God wanted me to examine my thoughts, start taking some of them captive, and not let fear run my mind. 

A Re-Occurring Date

October 19th is a "sign" that I didn't see right away. In 2013, Jaycee survived a 4 week nightmare battling septic shock, ARDS, respiratory failure, pneumonia, and rhinovirus. She required a ventilator for 3 weeks and was touch-and-go a few times. It was a happy day when she was discharged from the hospital on October 19, 2013. 

A year later, Jaycee was baptized at our church on October 19th. This date just happened by chance; I didn't plan it at all. It wasn't until later that I realized her baptism and her discharge date were the same day. When I discovered the linkage, I felt like God was redeeming her life, especially after all she had been through medically.  

A few years later, I was standing in Jaycee's room gazing at the picture of her baptism. My eyes were drawn towards a memory box hanging on the wall too. The memory box had her newborn hospital bracelets and ultrasound that indicated that Jaycee would be a girl. For some reason, I noticed the date on the ultrasound. And there it was- October 19, 2005. 

I had to laugh when I saw the date. To me, it was a sign that God had many things lined up in our lives. There was an order in all of the chaos. The pictures on the wall were taken 9 years apart on the same day and brought me comfort knowing that God was working behind the scenes all along.  

There are dozens of other things I could share on this post, but I will leave it at this. I believe there are things that happen in this world that we can learn from and God can use to speak to us. I hope you are willing to stop, see them, and hear God. I hope you visit back for part 4 in this series. 

God Speaks-Special Needs Edition: Part 2

Welcome to part 2 of a series highlighting how God speaks to people. As a Christian mother raising a child with special and medical needs, I have to hear God's voice. I have to know his heart for me and my child.

I understand God wants to have relationship with people. He wants to speak to those he has created. The Bible tells us how God has spoken to people in the past. It also provides insight into how God communicates to people today. There are numerous examples to look at in the Bible. In part one, I shared about previous experiences with God speaking to me through dreams. In this post, I'll share some ways that God used other people to speak to me. 

Photo by Min An from Pexels

There are many examples in the Bible of God using the interactions between two people to accomplish something great. Eli told Hannah that God would grant her request (1 Samuel 1). He didn't even know what she was praying about, but those words eased her out of sorrow. God did grant her request just as Eli proclaimed. David and Jonathan were friends who worked together to take care of each other and encourage one another (1 Samuel 20). Paul's writings in the New Testament show how he communicated with other believers to help their relationship with God. Several prophets in the Bible spoke messages from God to people to encourage, warn, or direct them (i.e. Nathan in 2 Samuel, Elijah in 1 Kings, Jeremiah, Isaiah). 

For me, it has been imperative to have relationships with other Christians who can speak into my life from the depth of their knowledge about God. I do not have a long list of friends, but the Christian friends I do have know how to pray and speak words of encouragement. I don't know how many times I have been caring for Jaycee at home or in the hospital, and I get a phone call or text message at just the right moment. Sometimes, the text contains scriptures that relate to the situation, and sometimes it's just their own inspired words. Similarly, I have listened to a Christian podcast or a sermon at the perfect time to allow God to speak into my life regarding a situation with my child. 

A few specific examples

In July 2006, Jaycee was 4 months old. She was on oxygen from her first open heart surgery. At the time, I was a youth minister leading a church camp for our kids. The kids at the church knew some of Jaycee's health issues and had watched me take care of Jaycee during camp. During one of the evening services, several kids' hearts broke for Jaycee, and they wanted to pray for her. I brought Jaycee to the altar for them to pray. A sweet girl looked at me with tears in her eyes and said, "Just because she's sick doesn't mean God doesn't love her." 

You may think that statement was juvenile, but it meant the world to me. I was in the 4th month of struggling to process all of Jaycee's diagnoses and sudden turn of events. The shock of her diagnoses was the first real testing of my faith. That girl's words of revelation spoken aloud was exactly what I needed to hear. My daughter's health was not a barometer of God's love. 

In 2015, I was exhausted with Jaycee's medical scares and breathing issues/hospital admissions. Nights were horrible for me. I had several bad dreams, some of which were about the hospital. My body would become so tense during these dreams. By morning, I would wake up with parts of my body hurting so badly from being held tight all night. 

I decided I needed to have someone at church pray with me. That person shared with me ways to pray over myself. She encouraged me not to let these dreams become an open door for fear to breed. She also said, "Your body hasn't caught up with your spirit yet." That was a revelation for me. I hadn't thought about my spirit and body not synching up at the same time. 

Another time in 2015, I had someone pray for me after a serious ICU stay with Jaycee. I didn't know the person on the ministry team praying for me. She told me that I had an easy laugh. It was true. I laugh very easily. I tend to laugh when I am nervous, sad, upset, and happy. My husband and I try to find humor in all of our crazy situations -probably a coping mechanism. The ministry person said, "Laughter is your weapon. The devil thinks you have nothing to laugh about. Your laughter confuses him." I loved hearing this perspective, and I saw my laughter so differently after that interaction. It was even more meaningful because the Lord had clearly revealed that piece about my life to her. 

A dozen times, I have had people tell me that God considers me a strong person. They all add that I may not see myself as strong, but God does. This repeated message is just another sign that God is moving others to encourage me and build me up. 

Over and over again, God has used other people to speak to me. There are more examples than this, but I wanted to highlight just a few. I am grateful for those people who have felt God's nudging and were obedient to his voice. 

There is more coming to this series. Please check back for part 3. 

A Small Victory for an Anxious Mind

I hate to admit that I struggle with anxiety, but I do. Anxiety is something that has been part of my life as a result of multiple hospital traumas and stress with my daughter, Jaycee, who has special and medical needs. The degree to which anxiety has affected my everyday life has varied over the years. At times, anxiety seemingly plagued every moment of my day, making my mind so busy that I woke up feeling exhausted. Other times, anxiety was a mild factor, and I could actually feel relaxed during the day. If you never dealt with anxiety, it is hard to describe its hold and presence in one's life. I know this- I hate anxiety.

I do, however, love that my daughter has been healthy lately. After years and years of repeated respiratory infections, my daughter is on a successful plan of treatment. She is now on a 15 month streak of staying out of the hospital. (Thank you Mayo Clinic!) You would think that during these months of good health that my stress and anxiety would be next to nothing. The problem is that for years I lived in a state of stress- dealing with one emergency situation or respiratory illness after another. It rewired my brain to stay in a state of anxiety. I have to work hard to keep anxiety at bay. 

Despite Jaycee's good health, these past few months have not been without some stress. The virus shutdowns affected the jobs of both my husband and myself for months. This and a dozen other things have created bumps in life, which I am sure that other people can certainly relate to. 

In the past few weeks, I have been trying to refocus and work on calming that anxiousness that tries to bubble up inside of me. I started reading and working through some exercises in Less Fret More Faith by Max Lucado. Little did I know that I would have a small opportunity to practice what I was reading. 

Three to four nights a week, a nurse works a 12 hour shift at our house, completing Jaycee's medications and monitoring her breathing overnight on her bi-pap. Shortly after Jaycee went to sleep one night last week, her monitor started going off. It was odd, but I figured it was a false alarm. I was busy with my son, so my husband was the one who investigated the alarm. A false alarm can occur due to a sensor going bad, the position that Jaycee is sleeping in, or the sensor not reading correctly. It is a true alarm if Jaycee's oxygen level gets lower than normal or her heartrate gets too high. My husband was puzzled because it seemed that Jaycee had a true, short oxygen desaturation for some unknown reason. 

I wasn't too concerned...until 30 minutes later. The alarm went off again and indicated her low oxygenation numbers. It was bizarre for her to experience this with no other symptom. My husband and I had a quick conversation with the nurse and formed a game plan for the rest of the night if she continued to have these issues. It was getting late, so I went to bed. 

I started reading on my Kindle as I do almost every night. I was torn between going to bed as usual and freaking out about Jaycee's breathing and alarms. My thoughts swirled: The nurse will be watching Jaycee all night, so she will be fine. She will notice anything out of the ordinary. She will take good care of her. But, if she is taking care of her, I won't know what is going on. If I stay in this bed, I won't know what is going on with my own child. If something is off with her breathing, then I won't be able to work tomorrow. I will have to adjust many things quickly in the morning.

My brain was jumping from reasons why I should stay in bed and sleep to why I needed to panic. 

Fortunately, I was able to shut my thoughts down quickly and go to bed. It was a small victory for me. I will admit that I woke up at 5:30 that morning, about 20 minutes before my alarm, because I was ready to get the hand off report from the nurse. However, I rested well all night before waking up. 

I was happy to hear that Jaycee had been completely fine the rest of the night. Nothing else happened. There was no reason to be anxious or panic after all. I was thankful she was ok, and I was grateful that I handled this fairly decently. 

In years past, when we didn't have a nurse, I would have stayed up for an extra hour or two and watched her numbers on the monitor. I would have worried, literally paced the floors, and worked myself up into an exhausted state. Because I would need to see with my own eyes how she was doing, I would not have been able to go to bed. 

The victory that occurred covered two issues. First, I was able to rest and shut down my anxious thoughts. Secondly, I was able to let someone else handle the situation. Having a nurse in our home for the past 9 months has pushed me to give up some of my caregiving. I need help, which is what prompted the initial call for nursing. In the beginning, it was hard for me to accept the help and let the nurse do things with Jaycee that I have always done. However, on this night, I was able to trust the nurse to watch my daughter, so I could rest and continue with my normal activities the next morning. 

Some victories come with accolades, trophies, or headline news. This victory was an anxious mom sleeping in her bed. I hope and pray that I can be victorious the next time. 

Scriptures and Prayers for Family in the ICU

Over the course of my child's life, I have been in the ICU over 10 times with her. Some of these ICU stays were planned after her heart or airway surgeries. Most of them were not planned and were the result of an illnesses suddenly attacking her body. 

The shortest amount of time my daughter has been in ICU was under 24 hours. The longest stay was 3 weeks. I don't know what it is like to be the sick person in the ICU. However, I understand what it is like to be the loved one sitting anxiously beside a hospital bed looking for signs of improvement. Yes, I am no stranger to the beeps, alarms, tests, machines, tubes, lines, pumps, doctors, and flurry of activity that is in the ICU. It is certainly no place that I want my child to be, and it has become a place that I associate with panic, stress, fear, and anxiety.

I've prayed many prayers in the ICU over my child. Some prayers were said out of desperation and fear of what I saw in front of me. Other prayers were full of faith and ended with the assurance that all would be well. I have said prayers that were long and powerful. Others were short and incoherent from exhaustion. Some prayers were simply, "Jesus help," because I couldn't think of anything else to say. I've come to realize that all of these prayers were all of value. 

In the middle of the chaos and crisis, I often make a decision to pray. The important thing is that I uttered words to God from my heart. I've discovered that prayer is powerful even if you don't have the "right" words to say. 

Today, I'm sharing some scriptures and short, sample prayers that I have said in the ICU over the years. However, I want to encourage you to simply pray from your heart. Whether it be long or short, eloquent or rambling, fear driven or faith inspired, let your prayer come out and share your thoughts with God. 

The Lord is my light and my salvation; whom shall I fear? The Lord is the strength of my life; of whom shall I be afraid? When the wicked came against me to eat up my flesh, my enemies and foes, They stumbled and fell. Though an army may encamp against me, My heart shall not fear; Though war may rise against me, in this I will be confident. Psalms 27:1-4 (NKJV)

God, I know your scripture says there is nothing to fear in You. You are the strength of life. You can provide life for my child. There is nothing to fear in the ICU because You are with me. Though I look around and see scary and disheartening things in the hospital, help me to not be in fear. Help my child, who may not understand everything that is happening, to have perfect peace. Let me be confident that you are here, fighting this battle with us, and will strengthen us all for this battle. Amen!

The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly. John 10:10 (NKJV)

Lord, I know that sickness is not from you. I know that any threat to my child's health is not from you. You give life. You give it abundantly. I ask that You let life stir up inside of my daughter. Strengthen her body, mind, and soul. Let sickness leave; let health come. Give new life to her heart, lungs, and vital organs. I declare that my child has many long days of life ahead of her because she is your child. Thank you for healing my child and giving her life. Amen!

God is our refuge and strength, a very present help in trouble. Therefore we will not fear, even though the earth be removed, and though the mountains be carried into the midst of the sea; though its waters roar and be troubled, though the mountains shake with its swelling. Psalms 46:1-3 (NKJV)

I thank you, God, that you are a help in our troubles. In the ICU, there have been many troubles. There are things trying to destroy and to disrupt life. I thank you God that you are bigger than any of these things. Help me to not focus on the "big" things going wrong around my child. I pray that the discouragement be removed for me and my child. Let us walk through this knowing you are our helper, healer, provider, and can restore all. Your word says you are a very present help in trouble. Let my family know this today! Amen!

 

Related posts:

Prayer for Lungs

More Prayers for Lungs

A Year Without the Hospital

I'm working hard to change the way I think. 

Over the past few years, I have come to think of my daughter as a "mostly sick kid with times of health." The fact that my daughter, Jaycee, has been in the hospital 2-5 times a year for the past several years has contributed to that line of thinking. Besides the hospital admissions for pneumonia or respiratory infections, there were plenty of illnesses in which Jaycee was intensely treated at home. After years of challenges, I am happy to report that things are finally changing for the better. 

If you have been following this blog for awhile, you know the complexities of Jaycee's health. If you don't, this might be a good background read for you. The repeated respiratory infections have been devastating for Jaycee's quality of life, and it's been distressing for the rest of her family. That led to us taking Jaycee to Mayo Clinic for a third opinion on her lungs last year. 

By August 2019, Mayo Clinic had a plan in place for Jaycee's sick lungs after extensive testing. The main changes were:

-taking an antibiotic 3 times a week 

-adding in two new nebulizer medications to use daily

-increasing the settings on her vest airway clearance machine

-and obtaining a cough assist machine to be used daily.

In addition, we were given a different plan of attack whenever Jaycee did get a respiratory illness. It was more aggressive but necessary given the state of her lungs. 

Once we started her new intervention plan, I was cautiously optimistic. The team felt Jaycee would do well and promised a new, healthier future. I wasn't sure that it was even possible. I saw her has a "sick" child. I wanted the good health to be true, but it was hard to be believe things could be different. I had been promised good health before by other professionals. I had been let down in the past, so I was reluctant to simply trust that this plan would work. 

A few months into the new treatment plan, Jaycee's health seemed to be stable. Hope started to grow inside of me. Keep in mind that I had years of watching my child turn blue, be rushed to the ER, and suddenly need oxygen. These past experiences had me torn between believing for a better future and being scared that at any time things could fall apart. 

In the fall, Jaycee made it through an illness at home. It was an intense few days of treatments, but she recovered without going into the hospital. It was the reassurance that I was looking for. However, I kept saying, "Let's see if she gets through cold and flu season." That would be the real test. 

My reluctance was keeping me from believing better things for her. At church one Sunday, our pastor started encouraging us to pray for things that only God could change. He encouraged us to pray for the impossible, believe in miracles, and stretch our faith. I know this should be common knowledge as a Christian, but it's easy to let past hurts affect your prayer life. It was simply a challenge to pray in faith for areas that seemed like they were never going to get better. In that moment, I knew God was speaking to me through my pastor. It was the words I needed to hear. It was time to get beyond the traumas, fear of being let down again, and past experiences and simply cling to hope and faith that things could be better. 

In November, we rejoiced that we were able to celebrate Thanksgiving at home with our families. The previous two Thanksgivings were spent in the hospital. Being home for that holiday was surpassing a huge hurdle in my mind! 

December and January passed with no illnesses. Those were two months that were notoriously hard for Jaycee. I was grateful again that things were improving! The longer she went on her healthy streak, the more confident I became. 

In February, we all came down with a cold right as we headed out for a Disney vacation. Jaycee either got a mild version of our cold or had a small reaction to being in a different environment. Either way, the medications and machines did their job, and she was able to fight off her illness on vacation. 

Since then, Jaycee has been in near perfect health. She's had a few, small changes in her breathing this spring, which happens during allergy season, but her lungs quickly responded to the medications. If there's been any good to the COVID-19 stay-at-home orders that shut my state down for almost 2 months, it's that we went no where to get a germ or a cold virus. She has stayed remarkably healthy over the past few months. But, when there's no church, school, or social events, there's a better chance of staying well. 

Last month, I started counting down the days that would mark the 1 year anniversary of her last hospital admission. We marked the date with a prayer of thanksgiving and recognition of how much life has changed in the past year. I had zero faith that this was possible a year ago. It really feels like a miracle. 

Now that we've reached the one year mark, I feel it is time to consider my daughter as a "mostly healthy kid with times of illnesses." I'm starting to make this strange transition. It's been wonderful to view my child differently but also see how much better her quality of life can be. 

Having a year off from the hospital has meant that we have had a bit of reprieve from many things. There's less absences for illnesses, less time off of work for illnesses, fewer medical bills, less stress, and fewer disruptions in our life. I'm grateful for the way things worked out and for answered prayers. 

Still, an impossible question is in my mind. Can she make it two years without a hospital admission? We'll find out...

2019: The Year I Prayed Differently

Happy 2020!

Like many people, I tend to reflect about where I've been and where I am going when a new year begins. I usually make a mental to do list for the upcoming year that seems attainable. In the past, some of items on my list were: take a vacation, deep clean my house, grow closer to God, make an effort to reach out to others, etc. 

Last year, I felt compelled to do something different. Rather than having a task to complete, I had a "word" to focus on. "Ask" became my focal point in 2019. 

You may feel like 'ask' is a strange selection for a word, but I knew exactly what I was being challenged to do when I got the idea through prayer. First, you have to understand what happened the previous year that preempted everything. 

In 2018, Jaycee, my daughter with Down syndrome and other medical conditions, was in the hospital five times for respiratory issues. The hospital admissions were hard and the recovery at home long. It was a draining year. It wasn't the first year that she was hospitalized so often, which only exacerbated the feelings of stress and anxiousness over her health. 

During 2018, my prayers for Jaycee were mainly, "God, please keep Jaycee from getting sick." Sicknesses like colds or influenza were major threats to Jaycee's lungs. If she could keep the germs at bay, then she would be fine. My prayers reflected that line of thinking. If God could protect her from getting the germs, all would be fine. Once Jaycee became sick, I felt there was little hope that her lungs could fight anything off. Caring for someone with chronic health conditions can lead to that type of thinking, especially when you have consecutive months of health trials. 

My faith was only strong when Jaycee was healthy. I had seen Jaycee in respiratory distress too many times over the span of a decade. It made me fearful and shook any sliver of faith I had when she was ill. We had exhausted all the pulmonary tests and treatments (or so we were told by two hospitals at the time). 

When Jaycee was symptomatic, I spent little time in prayer. You may think that odd, but I was busy. I was managing multiple medications and treatments, calling doctors, and trying to stay on top of her care. I didn't ask God for much help during these trials; I simply lacked the faith or the energy. 

On January 1st, 2019, I prayed something different. I asked God to make Jaycee healthy (as opposed to not getting sick). I must admit, I had trouble even saying the words at first. My thoughts told me it was a crazy thing to even say. It seemed like it would be an absolute miracle for Jaycee to be healthy- without sickness- without hospitals. I prayed her lungs would be healthy. I wrote out a little page and stuck in on my bathroom vanity as a way to keep focused. 

On January 25, 2019, we rushed Jaycee to an emergency room as she suddenly turned blue. Jaycee was discharged after a few days, a relatively short amount of time in the hospital for her. We continued to intensely care for her at home. However, a couple of days later, Jaycee needed to be rushed to the ER again. She had developed pneumonia from RSV, which wasn't caught at the first hospital. (Yes, 12 year olds with crummy lungs can end up with serious repercussions from RSV too!)

Did I want to stop asking for her to be in good health? Yes and no. I knew I would face opposition by praying this way simply by knowing Jaycee's health history. I wish I would have had at least one full month to pray peacefully and develop some faith before the obstacles. However, I knew I needed to go forward. I knew I needed to stretch my faith and speak life over her lungs, now more than ever. I made an effort to pray for her when she was sick instead of going into full "mommy-nurse" mode.

RSV has a long recovery time. By mid-February, Jaycee had more sick days than healthy. Yet, I chose to keep asking on Jaycee's behalf. The more I said it, the easier it became. It also helped me develop faith and look long term for her rather than the current crisis.

The year of asking and having faith for Jaycee started out rocky. She would be hospitalized once again in May. There were a few other illnesses too when Jaycee endured several days of interventions at home. There was no magical end to her health problems. But, a few things happened in 2019 that were game-changers. 

I asked one of Jaycee's specialists about enrolling her in outpatient physical therapy in the spring after she fully recovered from RSV. Low muscle tone is part of Down syndrome and every illness seemed to make Jaycee weaker. I didn't realize just how poor Jaycee's endurance had gotten because it happened slowly over time. I became accustomed to using the wheelchair for most public outings. I accepted the fact that she couldn't lift her legs for more than 30 seconds to shave. After a few weeks of therapy, there were noticeable changes in her. It didn't change her lung status, but it made a huge difference in other aspects of her life.  

In 2019, we made three trips to Mayo Clinic where Jaycee's lungs were extensively tested by them for the first time. As a result, new treatments were added as well as new diagnoses. In some ways, I struggled after our second Mayo Clinic trip in late July. Knowing exactly what was wrong with Jaycee's lungs was frightening. She was prone to pneumonia and we knew why. The best thing for Jaycee's lungs would be for her to have long stretches of health to give them time to heal. It seemed like an impossible task. I was hopeful for the new treatments but also fearful from the information we learned. I continued to pray for her health, but it was harder knowing the condition her lungs. 

In September, I listened during the pre-service prayer to my pastor who challenged us to pray for supernatural miracles. He asked, "Are we praying baby prayers that require no faith or miraculous prayers that only God could answer?" As he spoke, the worship team sang, "Great are You Lord." The lyrics to this song often run through my head during a health crisis: It's your breath in our lungs, so we pour out our praise. The combination of these things happening were a sign to me. Don't fear the future. Continue to ask for Jaycee's health. Step out, be vulnerable, and ask. 

Much can happen in the course of a year. Some things are easy and good, and some are hard. These events can sway our emotions and our prayer life if we allow them. Other events happen that seem small or a shot in the dark. However, they turn out to be exactly what needed to happen. Opposition may come in life but God can also raise people up to provide encouragement if we are willing and available to receive it. Situations in our lives can change. That's why we have to decide how we are going to believe. Our faith shouldn't be changed by events. Our events are meant to be changed by our faith. 

In 2019, I made a choice to ask God for health for Jaycee. I really believe that by changing my prayers I have been able to see a healthier version Jaycee. The 8 weeks of physical therapy helped Jaycee's endurance and activity level tremendously. Deciding to go to Mayo Clinic provided us new insight into Jaycee's pulmonary problems and better ways of treating them. We ended 2019 on a 6 month no hospital admissions streak. Six months! 

Last night, I said a prayer for Jaycee before kissing her good-night. Want to guess what I prayed for her?

Friends, what do you need to start asking God for again?

I Listened to God and Didn't Yell at a Doctor

I formulated a plan without even realizing it.

It all started a few months ago. My daughter, Jaycee, and I ventured off to Mayo Clinic for a third (and final) opinion of her respiratory issues. We were blessed to get answers we were seeking for years. Her multiple pneumonias and respiratory infections that have required hospital admissions every few months were explained. The episodes of her suddenly turning blue and needing emergency intervention now had a reason. I was relieved to get answers, and I was grateful for the doctors who provided such stellar expertise.

What was I to do about her regular pulmonologist who had been treating Jaycee for years? My daughter was a complex case; there's no denying that. Many eyes had looked at her, and none had come to the conclusions that Mayo Clinic did. In some respects, I see how things were missed. Still, Jaycee's regular pulmonologist didn't always seem on top of her case.

"It wasn't that bad," the pulmonologist commented once after three long weeks in the ICU on a ventilator. I'll never forget that statement as it showed the doctor was disconnected to our reality. It was bad, and I'm not sure why the doctor didn't see it. We depended on this doctor for guidance and help, and I often felt I needed to explain why such help was needed.

Other times, the doctor was properly concerned with the frequency of illnesses. Tests were ran (sometimes the same ones) a few different times over the years. Nothing significant was found to explain her problems. Medications were tried with little to no effect. When a second opinion elsewhere provided little change in Jaycee's health, the good doctor told us, "Jaycee is just going to get sick."

I have reasons for being frustrated with this doctor, as you can tell. Armed with a CT scan, multiple test reports, and pictures from scopes that displayed several "new" problems identified at Mayo Clinic, I contemplated my next move with Jaycee's pulmonologist.

I daydreamed about entering the office with my pile of medical reports and a smug face. I fantasized about telling the doctor about things that were missed, important tests that were never ran, and diagnoses that were never caught. I pictured myself asking the doctor why certain things were never considered. I imagined a heated discussion where I yelled about past issues concerning improper medical care and how Jaycee suffered through multiple hospital admissions as a result.

Of course, this was all in my imagination. I rarely yell at anyone in real life (though maybe my husband would have a different opinion 😊), so the odds of this actually happening were slim. Yet, I found my frustrations growing with the pulmonologist the more I pondered everything.

As my mind supplied me with varying scenarios with the good doctor, I got a nudge from God. Early one morning before my thoughts went haywire, God reminded me of an important aspect of Jesus in the Bible. Jesus was ridiculed before his death. People questioned his authority and divinity. They mocked him, and spoke blasphemously. His treatment was unquestionably horrendous.

When Jesus arose, he didn't come back to show the unbelievers who he was. He came back for his disciples. Jesus revealed himself to the people who loved him. He didn't go to Jewish people at the synagogue, the high priest, or Pilate for an "I told you so" moment. Against our human reasoning, Jesus didn't visit his accusers to show them their error. Jesus supported those who already believed.

Obviously, I am in no way trying to compare our situation to that of Jesus. However, I do believe there's wisdom we can glean from his actions. When God brought this story back to my mind, I knew what I had to do.

I didn't need to go throw our new knowledge in the doctor's face. It wasn't necessary for me to have an eruption of every pent up frustration from years' past. The doctor and Jaycee weren't obliged to have some sort of closure. God was telling me to let it go. I can't change the past anyway. It was imperative that I get help for my daughter, and it simply wouldn't be from that doctor anymore.

I took my daughter's new information to her primary doctor, cardiologist, and other important members of her team that have been supportive. Consents were signed for communication between everyone, so they can understand the new treatment Jaycee would be receiving. I canceled my future appointment with the old pulmonologist. For the time being, the doctor at Mayo Clinic is taking over Jaycee's pulmonary care.

The thing is, I didn't pray about any of this. My thoughts gave me a plan, but my relationship with God provided a way for me to revise it. I know I did the right thing. Tomorrow, I hope I do the same.

Just When Is God Good?

God is good. You've heard this, right? It's a common phrase spoken in the church world. I've heard it come from the mouths of many people in a variety of situations.

When a tough situation has an ending that is happy, some are quick to declare that God is good! It's important to recognize God in our victories. He needs to be acknowledged in moments that could have had a much different ending. What about the other moments though? What do we think of God when things don't go our way?

In my 13 years of raising a medically complex child, I have wrestled with this concept of the goodness of God. God is good. God's nature is good because He is love. He never changes. Yet, over the years, I have let many unpleasant circumstances try to slant this truth.

It's extremely difficult to look at your child with a scarred chest after a second heart surgery and declare that God is good. When you hear your child has a rare heart arrhythmia (Wolff-Parkinson-White syndrome) and has a chance of sudden death, you aren't thinking about how wonderful God is. When you find your child in respiratory distress at home causing you to rush into action with medications and oxygen, your immediate reaction is not to say that God is good, especially after this occurs dozens of times. When you are told your child may not survive the septic shock and Acute Respiratory Distress Syndrome as she lays in an ICU bed, God's goodness isn't at the forefront of your thoughts.

All of the scenarios are ones I have lived through as Jaycee's parent. I have had plenty of opportunities to understand the complexity that is the goodness of God. Here's is what I understand: God is good all the time. It's not a cliche; it's a fact.

God's nature is good. That part doesn't change. Even when life is challenging, God's nature remains the same. In my human reasoning, I try to make sense of God through trying times on Earth. But, how can make sense of a Heavenly God when I am trying to view Him through earthly trials? I can't. I must know who and what God is, so I can press on towards the hope of Him.

We can't decide God's nature based upon the good or bad things that happen to us. Our situations change. God doesn't. I had a tendency in the past to look for the goodness of God in Jaycee's illnesses. When things were hard for my child, I felt anger that the goodness of God wasn't around. After all, she was suffering. Goodness surely couldn't mean another surgery or illness or diagnosis or problem. Goodness is health and happy times. Right?

If there's a constant to be found in a chaotic life of raising a child who is medically complex, it is this. God is unchanging. He cares. He loves. He is good. "God is good" is not something said to sound Christian. It is a declaration of a belief of God that you must feel and know deeply and profoundly. You must settle this in your heart and your mind, so that when trials come, you won't be taken down the road of questioning God's nature, existence, and love.

When I sing the chorus of a familiar song, "You are good, good, oh," I sing it from my heart. I sing it with passion. I know God is good. I feel it because of what I have walked through on this Earth. Even when things I face seem terrible, the fact remains that God is good.

I hope you know it too!

How the Prayers for my Child with Down syndrome Have Changed

March 21st is World Down syndrome day (WDSD). (The date 3/21 is significant because those with Down syndrome have 3 copies of the 21st chromosome.) As another WDSD comes around, I can't help but reflect on how my perspective of Down syndrome has changed over the years, especially when it comes to my prayer life.

When my daughter was diagnosed with Down syndrome at birth, I was shocked. I didn't know it was possible for a 25 year old woman to give birth to a baby with Down syndrome. I never expected Down syndrome or a heart defect to be part of my baby's life.

The diagnosis of Down syndrome was portrayed in a negative light by the medical team in the hospital after Jaycee's birth. The doctor pointed out all the "flaws" on her body that indicated Down syndrome. I was told she would have challenges in motor skills, cognition, and her everyday life. The doctor told me I would be caring for her the rest of my life.

Down syndrome seemed overwhelming. The diagnosis was more than I could take. My thoughts regarding Down syndrome were all negative, and I could barely think of anything else. All of the negativity spilled over into my prayer life when it came to Jaycee.

Early on, I prayed for Jaycee to have a miracle. Specifically, I prayed for her to be healed of the effects typically seen from the extra chromosome. I made a list of the common problems with Down syndrome some of which included: Intellectual disability, low muscle tone, thyroid issues, slow metabolism, vision and hearing problems, and delayed development. I called each of them out in prayer and asked God to intervene miraculously.

I prayed and prayed. As the months went on, Jaycee had her first of two heart surgeries followed by oxygen use at home. She was struggling with feedings and motor development. I was getting discouraged. All the while I poured my heart out to God in prayer, it seemed like God had absolutely nothing to say about Jaycee's Down syndrome and her struggles.

One day as I prayed through the list of needs for Jaycee, I felt God ask me something.
"Are you praying these things for her or you?"
The question stopped me. I started praying for healing early on because I felt God would want her to live without issues based upon many stories of healing in the New Testament.

Jaycee gets a kiss from mom before a surgery. 

However, the question forced me to analyze my motives. Why was I really praying? Was I doing it from a place of love for her or was it something else? I came to the conclusion that I was praying for myself more than her. How much easier would things be if therapy wasn't needed, if specialty physicians weren't involved, if she understood like any other child, if her muscles were strong, if medical bills weren't in our lives, and if medicines weren't part of her daily life? These things would make both of our lives easier. Perhaps, I wasn't praying for Jaycee's sake, but my prayers were actually rooted in selfishness and fear of the future found in my own heart.

As I started to adjust my prayer life, God was still overall silent on the topic of Down syndrome. How did I need to pray for her? What was God's heart on this subject?

One day, several years into my parenting of Jaycee, I felt God speak again. As I was lamenting about some challenge related to Down syndrome, God whispered to my heart, "Down syndrome isn't that big of a deal."

What?! I started to tell God why it was a big deal. It was, after all, making Jaycee's development, education, and independence difficult. There were aspects of her life that were challenging for both of us.

It was then that I really found God's heart toward my daughter. God doesn't value life as we do. He doesn't care if someone is athletic, intelligent, artistic, poetic, or verbal. He isn't bothered when milestones aren't met as typically expected either.

Sure, you may think this is your belief system too, but I believe the system of the world is rooted in us far deeper than we may realize. We all want our kids to achieve "normal" things in life (educationally, in relationships, etc.). When it doesn't seem possible because of a diagnosis, it can be hard to face a reality much different from what we expect.

God looks deeper. He looks at our hearts and our spirits. He viewed Jaycee much differently than anyone. I'm sure God was pleased with her joyful and loving nature. God must have loved my child's spirit. I am sure that Jaycee's Down syndrome wasn't really impacting her in God's view. The trials on this earth from the extra chromosome were insignificant in the long run. Her heart was right, and that was most important.

When I got a new revelation of Down syndrome, my perception changed as well as my prayers. I embraced all parts of my daughter, accepted her limits in a healthy way, and prayed less selfishly. I didn't see her as a walking list of needs. I had more grace and patience for her difficulties and less frustrations. I asked God for more wisdom to help her through challenges rather than simply praying for them to end.

Years ago, I was almost in panic mode after I heard the words "Down syndrome." I prayed so many prayers, but I never really asked God what He thought about Down syndrome. I wish I would have asked for that clarity immediately. It would have given me a sense of peace and purpose for both of our lives. Perhaps, I would have been able to see past the challenges and just see her. I wasted so much time focusing on the wrong things. Looking back, I'm embarrassed by those initial emotions, thoughts, and prayers regarding my child's diagnosis. I can be thankful that I have grown as a person and a mother.

In celebration of WDSD, I ask that each of you consider your viewpoint of those with Down syndrome, specifically when it comes to prayer. Do you see them as only someone in need of prayer? Can you look deeper and see the person that God sees?

Easy Faith in Hard Challenges

Have you ever doubted the goodness of God?
Have you ever doubted God's love for you?

If you haven't, then congratulations. You are amazing!! Truly- you are.

If you are like me, maybe you have struggled at times in your life.

You may have had some sort of crisis of belief or questioning of God's presence in your life for different reasons. It could have resulted from the death of a loved one, a tragedy, a scary diagnosis, or the loss of something important. There are many reasons why people end up in a situation where they question their faith.

For me, it was a series of events during the first 4 years of motherhood. It was watching my child have two open heart surgeries, and all the things that went with it. It was handing my child over for a few minor surgeries. It was having five or six specialists in my daughter's life prescribing medications, making suggestions, and running tests. It was failed hearing tests, complications during routine procedures, and unexpected diagnoses. It was having my daughter admitted to the hospital a few times for breathing issues. It was a miscarriage. It was personal and professional changes in my life as a result of all of those events.

In the first 4 years of becoming a mother, I became very confused in my faith.

I wondered if God had forgotten about my family. I questioned the goodness of God, because I didn't see much good happening in my life. I doubted God even loved our family because I felt pain, hurt, and stress. I didn't feel loved at all. Every problem with my daughter caused more and more doubts. None of my daughter's health issues seemed fair. I wondered where God's justice was in all the health scares.

These doubts were small in the beginning. I didn't wake up with questions that suddenly seemed legitimate. It happened over the course of those tough years experiencing things I never imagined. It was days and months and years of twinges of doubt and lack of understanding that led to me questioning fundamental beliefs about God.

I struggled for a bit to understand my life, my faith, and how they could go together while parenting a child with chronic health conditions. I didn't stay in the struggle thankfully. I recognized I was in a bad place and took steps to change my perspective. I also knew God was real and my thinking had somehow changed because of circumstances in my life.

I discovered some important things in my spiritual struggle.
1. If you doubt the love of God, your doubt will grow uncontrollably! The love of God is clear in scriptures. Love is what motivated God to send his son to bring salvation. If you doubt the basic characteristic of love, the doubts will grow. You'll have nothing to stand on if you can't stand on that knowledge. You won't know how to pray or believe for simple things because the love is in question.

2. Having questions during struggles may be "normal," but they aren't helpful. I recently heard a minister say, "Questioning God's plan and love for you does not empower you to move forward. Faith does!" It's so true! Questions aren't empowering. They cause division and doubts. Yet, I was more apt to stay in the questioning mode instead of just trusting God with my life.

3. Trying to find God in your circumstances, especially a health crisis, is often more difficult than we make it. God is there. Period. We don't have to search for him. When we do, we are walking by sight and not by faith. I have tended to look at stressful health situations and claim God is just nowhere to be found as there were no apparent positives around us. Yet, that thinking was wrong. I had to trust that He was there instead of looking for proof that He wasn't.

4. Did I become a Christian for the perks? Did I think that adversity would never find me? Did I think that my Christianity would keep all harms from my family? Yes, there are blessings of God when we are in relationship with Him, but we live in an imperfect place. The earth is not heaven; there will be hard times here. So why do I get frustrated with God when I should be running to His peace? What was the point of being a Christian if I responded to adversity like anyone else? Hmmmm...

I've learned many things about faith as a parent of a medically complex child. I've found out that doubts come easily and swiftly in health crises. I finally discovered how to keep a mind focused on the truth. If you're struggling, stay in the Bible, continue in prayer, and reassure yourself of the truths of God.
He's there.
He loves you.
He cares.

Want to hear more? I discussed this topic with Sandra Peoples recently on the Not Alone facebook page.  
Watch it here!!

Finding Hope...True Story

Recently, I had a post on the Key Ministry blog called, Finding Hope I Didn't Know I Lost. I'm always grateful to have a post on their site and wanted to share part of it with you: I read the title of the message, Let Hope Arise, on the large screen in the front of the church. “Hope, I got this,” I thought.

After the speaker began, I realized I didn’t have hope, at least not in every area.

I regretfully admit that I felt odd as we repeated the speaker who led the chant, “Something good is going to happen to me.” I don’t think I have spoken those words in years.

Even though I don't commonly profess that good things will happen to me, I don’t consider myself as a pessimist. At one time a few years ago, I was definitely one. After some health scares with my daughter and reaching unprecedented stress levels, life seemed hard as it revolved around my child's daily medical interventions. At that time, I commonly thought:
“I’m never going to live without stress.”
“My child’s never going to be healthy.”
“I can’t imagine my life ever feeling easy while managing my child's care.”

Continue reading by clicking this link! 

More Prayers for Lungs

A couple of years ago, I wrote a post called Prayer for Lungs. It was a simple post written while my daughter was battling a respiratory event. I shared two verses in the Bible that I used in my prayers for her. In the past year, this post has been read every week by multiple people. It was written while I was tired and stressed, so it was short and sweet.

Today, I thought I would share more on this topic of prayer and lung issues. I have combed through the Bible in the past looking for scriptures to pray over my child. On a daily basis, Jaycee has interventions for obstructive sleep apnea, asthma, and a poor cough response. A few times a year, Jaycee is admitted to the hospital for pneumonia or a virus attacking her lungs causing her to need oxygen or higher support. As you can imagine, I have prayed many prayers for Jaycee's breathing and lungs. Below you'll find scriptures and sample prayers I say. I hope these help you in your situation.

²¹ So Jesus said to them again, “Peace to you! As the Father has sent Me, I also send you.” ²² And when He had said this, He breathed on them, and said to them, “Receive the Holy Spirit. ²³ If you forgive the sins of any, they are forgiven them; if you retain the sins of any, they are retained. John 20:21-23

God, you have given many good gifts to your children. Just as you breathed onto your disciples, I ask that you breathe on my daughter. Give her a sustaining breath. I ask that the Holy Spirit minister to her while she's sick giving her reassurance and strength. Amen!

Thus says God the Lord,

Who created the heavens and stretched them out,

Who spread forth the earth and that which comes from it,

Who gives breath to the people on it,

And spirit to those who walk on it:

Isaiah 42:5

God, you are the one who put breath in our lungs. But, the enemy is trying to destroy my child's lungs and steal her breath. I ask that you heal her lungs and help them function as you intended them to function. Give her breath that sustains her life. Help her oxygen levels to be normal. Let all the mucus, viruses, and fluid leave her lungs. Allow her lungs to function perfectly as you created them to be. Amen! 

⁴ Again He said to me, “Prophesy to these bones, and say to them, ‘O dry bones, hear the word of the Lord! ⁵ Thus says the Lord God to these bones: “Surely I will cause breath to enter into you, and you shall live. ⁶ I will put sinews on you and bring flesh upon you, cover you with skin and put breath in you; and you shall live. Then you shall know that I am the Lord.” ’ ” Ezekiel 37:4-6

Father God, Your word shows you can give life giving resurrection power. You miraculously gave breath and life back to the dry bones, so how easy it must be for you to give breath to my child. I pray that the same power flow through my daughter, healing damage, removing sickness, and allowing oxygen to flow normally. Let breath enter her supernaturally, and let her lungs work normally. Let this sickness be finished, and let her live. Amen!

¹⁷ For how can this servant of my lord talk with you, my lord? As for me, no strength remains in me now, nor is any breath left in me.”

¹⁸ Then again, the one having the likeness of a man touched me and strengthened me. ¹⁹ And he said, “O man greatly beloved, fear not! Peace be to you; be strong, yes, be strong!” Daniel 10:17-19

God, You must know my daughter is sick and tired. She has no strength left, even to breathe on her own. Just as you helped Daniel, help my child. Give her strength and breath. Help her lungs to work properly. Let none of us fear at this time. Let the diagnoses, the struggling, and the many interventions that are happening not create fear in any of us. Let us walk in your perfect peace and strength. God, you can do so many things when we ask and seek you. Lord, I'm asking for your help in our situation. Give the supernatural healing to my daughter's lungs and bring peace to her mind. Amen.