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. 

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

When a Loved One is on a Ventilator

In any form of media now, it is common to hear talk of ventilators with the COVID-19 pandemic happening. I have heard stories of COVID-19 patients needing ventilators, hospitals demanding more ventilators, and the race to make more to fill the demand. Ventilators aren't some foreign concept to me, and the frequent mention of them is giving me unpleasant flashbacks.

Perhaps, you have never seen a person on a ventilator. Maybe everything you know about ventilators was observed on Grey's Anatomy. I can tell you that, from my family's experience, nothing can prepare you for the reality of it.

Twice my daughter, Jaycee, has needed ventilator support for a common cold virus called the rhinovirus. Jaycee is medically complex and her multitude of lung and heart problems often result in her needing support in the hospital for illlnesses that others can fight off at home.

Back in 2013, Jaycee was admitted to the ICU for breathing difficulties and pneumonia related to that pesky virus. I remember everything about the night she was placed on a ventilator. She was rocking back and forth in bed, hyped up from multiple breathing treatments, when I implored her to go to sleep after settling into our hospital room around midnight. A few hours later, everything changed suddenly, and I was regretting that my last conversation with Jaycee was begging her to go to sleep.

Jaycee went into septic shock and was later diagnosed with ARDS. She went from needing some oxygen upon admission to needing the ventilator quickly. For 3 weeks, I watched my 7-year-old child breathe with a ventilator.

In 2015, the rhinovirus again created havoc in her lungs and a less sudden need for a ventilator occurred. For a week or so, I sat beside my 9-year-old daughter listening to the hum of the machine breathe in and out for Jaycee.

I am not an expert on ventilators, but I will tell you about what I observed as the mother of a patient from these two events.

I was not prepared for everything that came with the ventilator. Jaycee was sedated while she was intubated. One reason for the sedation was that it prevented her from trying to pull out her breathing tube. With her sedated, we found ourselves in a weird mode where she was there but not really there. We talked to her, reassured her, played music, played her favorite tv shows, and held her hand when she was stable, but it was hard to know what she understood, processed, or heard. Tubes did all of the major work of her body while she slept. There were tubes and wires everywhere! It was a sight that was hard to take in and see.

Then there was the noise from the ventilator. It set me on edge all day and night long. The ventilator wasn't a quiet machine that's portrayed on television. It's noisy. It had a constant hum as it inhaled and exhaled for Jaycee. It alarmed frequently for a few different reasons. If she coughed, I jumped at the alarm it produced. Coughing also typically meant she needed to be suctioned. I hated the sound of the suction and the cough that happened as a result. It makes me cringe thinking about it now. Perhaps, it wouldn't bother anyone else, but it was something that I hated hearing and watching. 

The idea of Jaycee being on a ventilator was simply scary too. In other illnesses, Jaycee had been on oxygen, high-flow nasal cannula, and c-pap support for oxygenation needs. The ventilator is the final stop on the oxygen train. To me, it was worrisome that there was nothing left after the ventilator. In the 2013 event, Jaycee was on the highest support on the ventilator and not sustaining good numbers at different points. Other things were eventually tried (like positioning her on her belly, adding nitric oxide, etc.) which eventually led to improvements. It's scary to see someone struggle to breathe and know that there's nothing else that can be done. 

As for Jaycee, I don't know what the experience was like for her. With her limited communication skills, I don't know what she was feeling or thinking during those times or what she remembers. I know there were moments of discomfort and sadness judging from her body language and tears. 

For her sake, I hope she doesn't remember any of it. I hate to go back to those memories. They aren't pleasant. With all the talk of ventilators lately, I have found myself revisiting some of those memories. I feel for all the people needing them right now and their families. It's not an easy thing to live through. 

There are many opinions out there right now regarding what the public can do to stop the spread of COVID-19. I don't know what you should do, but I know without a doubt what I should do. I never want to see anyone I love on a ventilator again. Therefore, if there are some things I can do to put the odds in our favor, I will gladly do them. 

Be safe out there!

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!

Outside the Hospital Window

My daughter slept in her hospital bed peacefully after enduring several hours that were anything but peaceful. Her bi-pap gave her breath as her chest rose and fell with the air flowing in and out. IV pumps clicked and hummed as they provided fluids and medications. After a very long night and morning, I found myself keeping busy by pacing the floor and doing nonsensical tasks of organizing and reorganizing the few belongings I brought along.

I finally quieted my body down and placed myself on the green couch at the back of my daughter's ICU room. With nothing to do but wait and worry, I looked out the window situated directly behind where I sat.

Looking outside, I observed cars driving along the busy road. I imagined for a second where all those people in the cars were speeding off to. Were they going to work? Were they headed to the gym for exercise? Were they off to buy groceries or finish some other mundane errand?

I wanted to be one of those people for a second. I wanted to be driving to work. I would have loved to have been buying groceries or even running to the pharmacy.

I looked a little farther outside and viewed the park just beyond the main street in front of the hospital. The winter weather had limited the activity in this recreational area, but there were a few people braving the temperatures. They ran along the concrete path or walked their animals in the grass. 

I wanted to be one of those people for a minute. I wanted to be doing something ordinary. I didn't want to be in the hospital with my child again. 

Outside the hospital window, life moved on. It was just another regular day for so many people, but it wasn't for me.

I turned away from the window to view my reality. My daughter was in the ICU again. Another respiratory virus found my daughter causing pneumonia, and her lungs needed an extreme amount of oxygen. Her breathing had improved from hours earlier, but she was still seriously ill, again. Absent from the room was my little boy. He was at school trying to maintain a somewhat normal routine during an abnormal time. Separated by illness again, my son and I would have to communicate on the phone later in the evening and hope that would be enough to get us both through this health crisis.

People outside the window didn't seem to have a care in the world. In contrast, my world seemed upside down. No matter how many times I had been in this place with my daughter, it has never gotten any easier. My heart hurt for my daughter, who has fought many health battles. My heart hurt for my son, who has had his own struggles through all of it. I struggled to process my own feelings and anxiety while maintaining a strong front for my daughter, son, and husband.

There was a great juxtaposition with what I viewed in those few minutes. Outside the hospital window, life was as it was expected to be. Inside that room containing the window, nothing was right.

I took a breath and reminded myself of something. Soon, my daughter will be well again. I'll load her into my vehicle to go home. My van will join the parade of cars that never seems to stop. The hospital will soon be in my rear view mirror as I joyfully depart this town. Yet, I'll leave behind dozens of tired parents sitting on a green couch looking outside their child's hospital window.

They'll wish they were me. They will be hoping they will soon be the ones outside the hospital window. And the cycle will continue.

Being a Mom in the Hospital

A mom finds herself in many situations. Most of which are expected with the title. Grocery store speed shopping is a favorite of mine. Googling answers for my son’s homework is becoming a more frequent activity at my house. Coming up with creative ways to bribe my daughter to comply with a simple request-that’s fun too. But, these are generally all expected as a mom.

To some extent, a mom can anticipate having some interactions with their child in the medical world. Well check-ups with a doctor and vaccines aren’t always fun, but they are a necessary part of life that most choose to do. Illnesses happen too. Dosing out medications and caring for a sick child is a hard part of being a mother, but it is temporary thankfully.  

But then there are women like me... We have mothered our children in the hospital for chronic conditions or severe illnesses. It is a situation that no one is prepared for -nor is it something one imagines when dreaming of their baby’s future early on. Yet, you learn to navigate the life you are given, even if it involves your child in the hospital.

Me and Jaycee-Yes, I am super tired from the hospital!

We have just finished up hospital stay 30 something for Jaycee. For those 30+ admissions, my plans- my appointments, work, and sometimes vacations- were canceled. I go where I am most needed, with my daughter to the hospital. Sometimes, I ride in the ambulance with her. Other times, I transport her myself with my van full of equipment like a monitor and oxygen. A couple of times, she went to the hospital in a helicopter as my husband and I sped there in our vehicle trying not to think about what was happening while we were separated.

I have spent as little as a few days in the hospital with Jaycee and as long as 4 weeks. There have been times when Jaycee craves my affection and love. I am happy to be there to kiss booboos and calm a scared and sick child. There have also been times when I have been pushed away. I am sure she wonders why I allow her to be poked and suctioned. Though she is 12, her mental age is more like a child under age 5 in some areas. She doesn’t understand everything that happens to her. Even though I have made visuals specifically for the hospital, supplement my words with sign language, and use simple words, a child who is terrified is hard to reason with. So if she pushes me away, I go across her hospital room in a chair as she wishes. I try not to take it personally and wait for her to receive my love again, which can take minutes or hours.

Being a mom in the hospital is tough. Before I get any farther, I want to clarify that my daughter has it the toughest. She has to endure it all, but this is my perspective as a helpless loved one who is at the mercy of the illness and condition beating my kid up. As Jaycee’s mom, I want her time in the hospital to be short and easy as possible with no setbacks. It is hard to stand by, watch numbers on a monitor, and wait. There is nothing I can do to stop things from getting worse. There is also nothing I can do to help her get better any faster. I must depend on the staff to make good decisions and figure out the right course of treatment. And, yes, I give my opinion when I think it will help.

As Jaycee has gotten older, my jobs in the hospital are pretty simple. Order her meals and help her once they arrive. Help with bathroom breaks and baths. Guide her through movie choices or put on music. Help with dressing and positioning of stuffed animals. I offer hugs and kisses and words of encouragement. I cheer her on when she is reluctant to take her medication. I help her FaceTime her friends and family when she is missing all her buddies. We call her brother every day and check on him. Unfortunately, that is about all I can do for him during our time of separation.  

The hospital is a hard place for a mother. It makes you see things you never wanted to see and be in situations you never knew existed. Some of the hardest things for me have been watching her be bagged, intubated, suctioned, and medically drugged. Looking at her body with PICC lines, central lines, arterial lines, catheters, etc. at different times hasn’t been easy. Some have left scars on her body. Though the time of the illness may be long gone, these remind me of her fight.

I have been called strong, a good mom, amazing, and a few other positive words. I am strong-sometimes good, but not on my own strength. It comes out of me when the situation arises. Sometimes, I think these admissions will break me emotionally. There are times I have wanted to give up, drive home, sleep in my bed for a night, and pretend my little girl didn’t struggle to breathe so often. It is a thought I have for a second. It’s not an option really though. I keep going until she is on her way to recovery and back home again. That’s where we all belong. Still, sometimes I break down frustrated with things I cannot change, fears for my daughter’s future, and from exhaustion that comes from an admission. Even strong moms get worn out.

As we approach Mother’s Day, I want to recognize the many roles of a mother. You never know what motherhood will bring to you and your children, but all life and time is precious. God is gracious to us and equips us with everything we need to help us through the good and the hard times as parents, even if we aren’t always able to see it at the time.

Motherhood doesn't stop in the hospital because there is a little life I helped create sitting in a bed needing me. I'll be there for her. That's what moms are for.

Happy Mother’s Day!

One Thing I Remind Myself in the Pit of Illness

Being Jaycee's mother has been emotionally hard at times.

With every diagnosis, life-threatening emergency, surgery, and hospital stay, there is understandably some fear for her future. When she was born, Jaycee was diagnosed with a heart defect that almost immediately put her in congestive heart failure. I was very fearful that Jaycee wouldn't make it. I worried her heart failure would worsen, and I wouldn't see the signs in my infant. I worried something would go wrong during or after her open heart surgery that would cause her life to end. I wasn't obsessed with this thought/fear, but it would pop in my head uncontrollably at times. I worried how my life would go on if hers didn't. These thoughts scared me, and her future seemed so uncertain. 

Then I had a God moment. It's one of those times when a thought came to my mind that I knew wasn't from me. In the midst of my fear and worry about Jaycee's life, this came to mind: 

Don't mourn your daughter while she is alive.

I knew what that meant. I knew I wasn't suppose to worry and fear for my daughter's life because she was after all still alive. Those thoughts were making me sad and depressed. I didn't need to focus on a possible bad outcome for her that wasn’t our current situation. I was letting those fears about her future affect my emotions. So I got it. There’s no reason to mourn a situation that isn’t one yet. This thought has stuck with me over the years. 

Before she started kindergarten, Jaycee had two open heart surgeries, two heart ablations for Wolff-Parkinson White syndrome, and had been in the ICU a few times for pneumonia. Since then, she's had a few more rocky times in the hospital with surgeries or ICU admissions. Some of these things have been hard to process. 

On the one hand, I feel she is invincible. She has survived so much despite having many health conditions that put her at risk. Jaycee seems to bounce back. She fights hard during illnesses and wins.

On the other hand, I wonder two things. How much can a little girl's body take? How many times can a child go into respiratory distress or shock or acute respiratory failure? I start to have doubts about her life.

These doubts have came at me a few times (maybe multiple times) recently because of Jaycee's two admissions into the ICU within two months and the one admission we are currently on. Old fears and thoughts come back. When they return, I remember again:

Don't mourn your daughter while she is alive.

So I take a breath. I take a second and clear my mind. I can't control the future. I don't know what lies ahead for Jaycee and her health. But, today she is here. I will be joyful for that. 

The Battle with a Tough Germ & Soda Addiction

Man, a lot of stuff can happen in a week.

On Monday Jaycee had a few coughs, so I started her extra medications and airway clearance. I also posted a piece talking about how I wanted to value my time with Jaycee even if I am in the hospital or at a doctor’s appointment all day. I didn’t know I would be setting myself up for a challenge so quickly. You can read that post here!

On Tuesday, Jaycee and my son started back to school after winter break. My husband left for Oklahoma where his job currently has him. I went back to work after time off for the holidays.

Jaycee’s numbers were all good, but I was a little nervous sending her to school on a cold day. I spoke to her teachers, and they made plans to keep her in the room all day long while continuing her medications.

She seemed fine at school. Initially at home she was fine too. She didn’t eat all her dinner, which was odd. Her hands felt cold. Fever- first red flag!

Ok so picture this: I have been home long enough to get the mail, make dinner, and eat. I was trying to clean the kitchen and help my son with his homework while Jaycee did her normal nightly treatments. Then suddenly all of life stops. The pile of dirty laundry sat in the basket, the dishes stayed in the sink, and the things that needed to be done for work that night were all just going to wait, because more red flags were coming.

Jaycee fell asleep on the couch, which was a bad sign. Recheck of the fever showed it was worse. Then her hands started to turn blue and the rest is a made dash of giving meds, packing for the hospital, alarms beeping, phone calls, and saying bye to my son. An emergency room and ambulance ride later, Jaycee ended up in the ICU.

.

January 3rd was the beginning of my mental challenge to see these days differently. You see when she gets in the hospital; I want her out. I want her to be healthy. I want to be at home with both of my kids. I also want to work. Good grief I got one day of work in after holiday break before I was calling in sick. I just want the stress of the illness over and for life to get back to normal. These are my normal thoughts. But, I am trying to view things in a new light. That is hard!

I am so impatient in the hospital as I am at the mercy of this illness creating havoc on my daughter’s body. Be calm- I told myself. It’s ok. She will make it through. Life will be normal again soon. I worked very hard to push some old thoughts down but some of them succeeded in making me anxious or angry at a situation that just cannot be changed. It just must be lived through again. I had to watch my daughter struggle for breath for days again.

On top of the illness and my husband being 6 hours away, I was doing it without caffeine. Our church does a 21 day fast the first part of the year. I gave up sodas because I know they are my addiction. I love soda! It is so fizzy and delicious! I could drink them all day long if I allowed myself to do it, so this was a great thing for me to give up. Carrots would have been much easier or broccoli. I depend heavily on sodas in the hospital. The first night of emergency rooms and chaos meant I was up for about 28 hours straight except for a few minutes of dozing off in a chair while alarms were beeping.

Oh soda, how I wanted you! I never intended to give up soda during a hospital admission, and I was ready to bail on this fast on day 2 at 11 pm in the emergency room.

It became too much! God, first another time in ICU where I promised not to let my usual thoughts bother me and all without the delicious goodness of soda. But God spoke to my heart that I could do it. I needed to ignore that voice inside my head that said I NEEDED soda to get through the time in the hospital or I NEEDED caffeine to get me through the long days. It is true I have confessed these very things with my mouth.

There were a few moments when I wanted to run to the vending machine and binge on Mt Dew but I stopped myself. This was less about completing a fast and more about God showing me that I can cope in these situations without some of the coping mechanisms I have been using for years.

I have realized some things about myself during this hospital stay. Not all of my thoughts are true. (I can survive without a soda.) Changing thought patterns, especially those established under stress are difficult, but I can do it. I have my own work to do when Jaycee is sick in the hospital. This past week was the first time in a long time that I come to really believe that I can change my thoughts. I can’t change anything about Jaycee’s heath problems, but I can control my response to them. Hopefully, I will keep handling things better.

Hidden Costs of a Hospital Stay

Most people know that hospital admissions with doctors, tests, and the emergency room are all expensive. Even if you have health insurance, there are deductibles and co-pays that can add up quickly. But there are other costs involved with a hospital admission that most people aren't aware of.

My 11 year old daughter has been in the hospital for an illness or surgery every year since she was born. Needless to say, my husband and I have spent plenty of time in the hospital with her. We have learned how expensive everything can be when a loved one is in the hospital. Here's a few things:

1. Food
You may think hospital food would be affordable. Well, that hasn't been the case for the hospitals we frequent. Meals that we purchase in the hospital cafeteria are anywhere from $5 (which will be a small meal with no drink)-$10. That may not seem like much, but multiple that amount for 3 meals a day for X number of days.

Example: $8 meal x 3 meals a day for 10 days (the length of our last stay)= $240
Say what?! If my husband is at the hospital too, then the cost doubles. Oh and sometimes my son visits and eats with us. Yep, that adds up.

The hospital we have stayed at the most with our daughter does offer parent meal trays for $8. You do get more food with this option, but it's not the best tasting since it's essentially the same food the patients can have. It's not necessarily a dirt cheap option at $8/meal. Our hospital offers free meal vouchers for some parents, but we don't qualify. These are handed out to families on state Medicaid insurance. Good for them, but not for us.

We have found that sometimes it's cheaper to have a pizza delivered or go to a nearby restaurant if our daughter is doing well enough for one of us to leave to get the food. Sometimes to save money, I'll purchase a single pop tart out of a vending machine for $1 and drink water for a cheap breakfast. When Jaycee has been in for weeks, we bought some microwavable food (soups, oatmeal cups) or things like chips to have and eat instead of purchasing these things in the hospital.

FYI-We live 120 miles from the hospital, so we can't just go home for a meal. When Jaycee is in the hospital, at least one of us is always there.

2. Lodging
Our hospital allows one parent to stay in the room with Jaycee. Another parent can sleep in the designated parent lounges, which are never completely dark for security and safety reasons. This allows both of us to stay near our daughter, which is what we prefer when she's in the ICU. This is the cheapest option for lodging since it's free. Sometimes, we need a night away from the hospital because sleep is hard to get with alarms going off and the stress of the situation. If our son wants to stay a day or two with us, then at least one of us has to leave the hospital to stay with him nearby too.

Ronald McDonald homes are in the city of our hospital, but these are usually full with waiting lists. We have only stayed there once when Jaycee was first born. Hotels become our next and only option since we live so far away. There are several hotels that offer discounts for patients of a nearby hospital. The discounts vary by hotel. This past admission for my daughter, we needed a hotel room for 2 nights when our son stayed with us during her 10 day stay. The cheapest night we stayed was $126. They aren't giving these rooms away, but it was $30-40 less than what was listed on the website. But you know I'm going to hit the free breakfast at the hotel to make myself feel a little better about the expense.

3. Gas
This is the least expensive part for us, but it's worth mentioning. When Jaycee is in the hospital, I usually stay at the hospital the entire time. My husband will sometimes travel home to pick up things we need or pay bills or bring our son for a visit. A trip or two home means a tank or two of gas. What's another $50?

4. Time Missed from Work
This really isn't an expense but it's a loss. My husband and I have jobs that have no paid time off. If we aren't at work, we aren't going to get paid. We both can't help but think of this fact as we are sitting in her hospital room in the ICU wondering how many days this illness will wreck havoc on her body. If you are fortunate enough to have paid time off or sick days, great for you! But, we aren't those people.


This list isn't made for you to feel bad for me. It's to enlighten those who haven't experienced what we have experienced. It's also written to show that there are layers and layers of stress in these situations.

If you have a friend or family member in the hospital, you can keep these things in mind. Instead of sending balloons or flowers, see if the hospital has gift cards available. We have a couple of people who frequently send us gift cards that we can use in the hospital gift shop or the cafeteria. This is a nice and useful option. If you are going to visit someone in the hospital, ask if you can bring some snacks. (Ask first because there may be rules. We can't keep food in Jaycee's ICU room, but we can keep it in our vehicle.) Gas cards and food cards are also great gifts even for when the family returns home since I'm guessing they might be a bit tired. Anything is helpful, because, as you now know, time in the hospital comes with lots of costs.

I Have Nothing Cute to Say

The previous few weeks have been hard.

I'm a fairly positive person, but the past hospital admission with Jaycee has made things tough. (If you missed my last post, you can read more about the hospital stay here.) Seven days of watching your child endure pain, fight for breath, and lay in a bed in the ICU will wear on you as a parent. Then add three more days of care in the pulmonary unit where your child fights diaper changers with all her might, struggles to keep food down, and looks so sad to be in the hospital. It's hard in so many ways. I wish my daughter's health wasn't so fragile.

Jaycee sleeping with her Beast doll on continuous bi-pap in ICU

As I said in my last post, we are no strangers to the hospital or ICU. The familiarity with all of it is exhausting. I sat in the hospital and thought, "Not again! This can't be happening again!" But it was. We were warned back in 2013 that once you need a ventilator during an illness, you tend to fall harder and need more support for relatively common illnesses later on. Jaycee was almost expected to become a repeat ICU patient and that has been what she has become. Jaycee has been in the ICU every year since then for a cold virus or pneumonia or some other lung issue.

My first thought when we arrived home was, "How many times can this happen to my daughter? Is her life and ours ever going to have normalcy without hospitals?" Obviously, no one at the hospital believes it will be. "See ya next time," some of them said to us as we walked out the door. Hope not, but it has been the case for some time now.

This year alone I have accompanied Jaycee on an ambulance three times while she was transported to a Children's hospital for care. Twice the transports were for respiratory illnesses that resulted in hospital admissions. One was for the hemorrhage at home after her oral-pharyngeal surgery. That surgery, by the way, was excruciating for Jaycee for over a month. This year has had its ups and downs for sure.

As a writer, I try to share our life stories as well as how I cope in these situations. But this week, I can't find the silver lining. I have no cute story that's inspirational. I have no moment of revelation that happened in the hospital. My power of positivity is not here. I could tell you how Santa visited her in the ICU and how Jaycee has watched the video a dozen times since with happiness. But, I could also tell you it really stunk to hold Jaycee down to be suctioned several times. The bad outweighed the good as far as I can tell.

If there's something positive to say, it's this: I know there is still a God. I know God is working in my daughter someway and somehow because she is still here even though she has several health conditions that don't put things in her favor. And, I certainly love her dearly.

That's why all of this hurts so much sometimes. It hurts to see her in pain and sick and looking at me with those eyes like I should be protecting her from the nurses who must stick and poke and prod. I hate it for her, because I love her so much. Even when I felt like running out of her room when she was in the hospital because I didn't want to watch her in pain and struggle, I stayed. I held her hand. I put on her favorite movie.

I dug down deep in those moments and found something cute to say to her.

Fighting the Old Demons

Where has the past week gone?

It started last week on Wednesday when I put a "well" Jaycee to bed. An hour later, she was up crying and turning blue. When the home interventions were obviously not helping we rushed her to the emergency room. I rang in Thanksgiving in the emergency room with my husband and hospital staff. After tests and monitoring, Jaycee was determined to have pneumonia which always is hard on her little body due to her asthma, lung cyst, obstructive sleep apnea, and history of atelectasis. By this time, Jaycee was on oxygen and waiting for the Children's hospital to send their ambulance.

Fast forward... Jaycee landed in the Pediatric Intensive Care Unit because her oxygen requirement was so great. Her blood pressure was very low and a couple of liters of fluid were pushed in an attempt to keep it up.  Her vitals were all low or high and there was some real concern she was in shock.

I hate the ICU. I mean no one loves it, but it does a number on me emotionally. But I know that Jaycee hates it much more than me. I have a short health history I keep of Jaycee in my purse for emergencies like this, but it is lacking some details. I can say that this illness makes at least 8 admissions into the ICU for some sort of respiratory problem.

The positives about being there a few times is that you learn the ropes. You know what alarms and beeps to be worried about and when they are nothing to be concerned about. You learn your child's vital signs and know when to be worried and when to be very very worried. You know what the parameters are for needing more support with breathing and less. This knowledge makes some things easier because the first time Jaycee was in ICU back in 2011 for pneumonia, I was completely freaked out just because she was in there. I sat and cried and worried and she recovered just fine. Now, I know when it is truly a time to freak out.

Since 2011, she has been on a ventilator twice, spent both weeks and days in ICU, been on bi-pap support continuously, and been near death once while battling septic shock.  I have seen my daughter with art lines, central lines, picc lines, feeding tubes, cathed, suctioned, and medically drugged. I have felt fear like never before in that place.

Every time we leave ICU, there is a part of me that goes on with life. There is a small part of me that wants to never think about or deal with those demons we faced in that beautiful and terrifying place.

It is a place of miracles and victories and relief for families. It is also a place where some spend their   final moments. These souls shake the nerves of everyone around because you want to believe that no child ever dies and everyone has a happy ending. But some don't... And after seeing that play out for other families that scenario is trapped in a far corner of my mind that tries to come forward during Jaycee's distresses. I am aware of that possibility but I spend most of her illnesses thinking my daughter is invincible. I fear that fate that some have met because I know my child's health isn't perfect.

When Jaycee is in ICU, old demons resurface. When I walk past certain rooms that Jaycee once occupied and old memories flood back. The ones I try to forget. The ones that involve rapid responses and machines and fast paced intervention. I see doctors who broke bad news to me and prepared me for the worst. They spark memories too.

The times in the ICU have shaped me into the mother and person that I am. I have seen and heard things no one wants to be part of. I try to forget all the bad and focus on the good....that Jaycee made it. That she lived through it. That she got her miracle and healing. And I TRY not to let those ICU experiences affect our life once we leave. Sometimes they resurface in nightmares or in body tension on routine appointments in the hospital. They are there even if I don't want to admit it.

But then it all comes back. As we stepped into that all familiar unit last week, I wondered what hell Jaycee was in store for this admission. I worked hard to ignore the chaos around us, the memories trying to torment me with worry, and the fear this place brings. I fought a different battle than my daughter. Pneumonia was her enemy. Fear was mine. Hers will have a beginning and ending, but I fear mine never really ends, just hiding below out of my mind's forefront.

Tonight, I am more relaxed though. Her miracle came again. We left ICU today and moved down the hall to the pulmonary wing. Her recovery will continue for awhile but the danger is behind us. Her weak lungs found strength another time. Hopefully forever....

Dear Pastor, Thanks for Baptizing My Child with Down syndrome

Pastor Chad,

It's hard to believe that almost 3 years ago, I watched you baptize my little girl, Jaycee. You probably have no idea what that moment meant to me and my family.

In my eyes, Jaycee had been part of our faith for a few years. Jaycee has always enjoyed going to church, insisted on using her talker to pray before meals, understood Jesus and his importance in Christmas, and loved to worship God.

Our church, like many others, generally believe that in order to be baptized, someone should first confess Jesus as their savior with their mouth. Having Down syndrome and only speaking a few words, this prerequisite seemed almost impossible for Jaycee.

I often wondered when I watched other children being baptized when Jaycee's day would come. How and when would this happen?

In 2013 as I sat in the intensive care unit, I was afraid Jaycee's moment had passed. Jaycee was on a ventilator and a room full of IV pumps and machines needed for the treatment of septic shock and pulmonary and cardiac failure. That month in the hospital was scary and almost life ending. But, she made it! I left the hospital with a sudden desire to get Jaycee baptized. When Jaycee was discharged on October 19, there was so much to do with her recovery that I pushed the baptism on the back burner.

Finally, I got brave and asked my husband about baptizing Jaycee. He was unsure but after some time to reflect, he decided it was a good idea. Still, I did nothing. I was afraid to ask you to do a baptism on a minimally verbal child. I was afraid you would say no. I know you take the act of baptism seriously and I was afraid you would think I was making Jaycee do this. I was afraid of the rejection I would feel for myself, our family's special situation, and Jaycee if you said no. I didn't want to face that rejection.

For months I trudged along with the thought of baptism coming less frequently. Then, we suddenly found ourselves in the intensive care unit with Jaycee again when a simple dental procedure resulted in aspiration pneumonia. After a scary day in the hospital spent teetering on putting Jaycee back on a ventilator, I told my husband, "If she makes it out of here, she's getting baptized! We can't wait!"

When things settled down, I bravely wrote you an email expressing my desire for Jaycee and trying to make a case for her to get baptized. I waited (impatiently) for a response and became nervous when I saw you responded back. You said you were going to pray about it. I admired you for not telling me no right away. As I waited for your final response, I came up with alternative plans some of which involved baptizing her in a hot tub with a clergy off the street.

With nervousness, I opened your final email in which you agreed to baptize Jaycee if it was our desire. You came up with a plan to baptize her after service so that she could take her time and have her family gathered around her to make her comfortable. You had enough forethought to ask me about her comfort level with water. A date that worked for both of us was set.

I had some time to prepare Jaycee for her baptism. We watched YouTube videos of people getting baptized. I wrote Jaycee a special story about it using words I knew she would understand. Then the week before the special day, I started to practice baptizing her in the bathtub without actually taking her head under the water. She understood what she would do, and I was confident she could do it.

On October 19, 2014, eight-year-old Jaycee entered the water with a smile on her face. Her family and close friends surrounded her to witness this happy occasion. You spoke to our family briefly and then to Jaycee trying to use some of the words I used with her. Then the big moment came and Jaycee wasn't scared at all. She left with the same smile on her face. There were tears that day but none of them were from her. It wasn't until later that I realized what happened on October 19th the year before making it even more special. (Read above if you missed the date connection!)

I wish you could have seen Jaycee watch the video at home later while she smiled and cheered for herself. From that point on, when she referred to her baptism, she signed "swimming." You missed the moment in the church one Sunday when Jaycee pointed to the door leading to the baptismal and signed "I went swimming there." I wish you could have been in my living room the day I was watching one of your sermons online when Jaycee looked at the screen and signed "That guy and me swimming." In her bedroom, Jaycee looks at her baptism pictures and has told many visitors of her "swim" at "church." You missed the conversations with me and other parents of children with special needs when they asked me how Jaycee did the baptism with no fear and wondered if their child could do it too. Since you missed these things, I want you to know how much that day meant to us, people who witnessed it, and other families with children with special needs.

When we found ourselves back in the intensive care unit since then, I was comforted by the fact that Jaycee was baptized. For that, I thank you. I thank you for allowing Jaycee to take part in her faith even if she can't do all the steps everyone else does. Thank you for helping our family have that special memory in the church and not in some one's hot tub.

We'll be sure to remind Jaycee of what she did on this date every year, so she'll never forget.

Evana

The Jesus who Lives Beyond the Stable

Jesus is much more than a baby born in the humble beginnings of a stable.

Jesus is much more than a man who was crucified.

He was and is the Son of God.

As Christmas is nearing, it's important to reflect on the man who we celebrate.

Perhaps you aren't personally acquainted with Jesus, so let me tell you what I know.


It was in my relationship with Jesus that I learned the value of my daughter's life. While others made me feel that having a child with special needs was something that was sad, pitiful, and negative, Jesus reminded me that value is found in the soul of a person-no matter the abilities.

After struggling for months to get Jaycee to hold her own bottle as a baby, it was Jesus who gave me an idea to create an assistive device to help her by using a can hugger and masking tape. After months of struggling, the idea worked!

It was through Jesus that I came out of a difficult emotional space. Years of caring for a child who had multiple health problems (some serious), a miscarriage, and some other issues that life threw at us had really made my thinking very negative. It was Jesus who gave me hope for my life and our family's future.

It was Jesus who gave my husband and I peace when we looked at many medical bills wondering how we were going to pay them. (We have paid off over $40,000 in medical bills and quit totaling them up a few years ago due to the emotions it caused us.)

When Jaycee was in ICU in 2013, she was sick with pneumonia, respiratory failure, acute respiratory distress syndrome, and septic shock. While I was in prayer to this man, Jesus, I had a strong thought, "Jaycee will live," in my mind. That gave me hope during the shaky times while she recovered.

My son visiting his sister in the hospital

It was Jesus who put a line from a song in my heart during one of Jaycee's hospital admissions. I was feeling very down about Jaycee being in the hospital when these lyrics came to mind: God I look to You. I won't be overwhelmed....  (Yes, sometimes Jesus comes in the form of a song.)

It is Jesus whose name I say when I have found my daughter turning blue from respiratory distress at home as I try to get oxygen on her.

When Jaycee was sick another year in the ICU on the verge on needing a ventilator to keep her breathing safely, it was Jesus who sent word through a praying friend reminding me to trust God in all situations even when they seem to be going in directions that seem unplanned.


Jesus has not prevented sadness in my life nor heartache.
Jesus has not been a magical Santa figure granting every prayer and wish I had.

But, Jesus has been there working in my life making sure things came together for my good. He has been the peace in my life when things felt out of control.

Here's the good news for you--- He will do it for anyone who seeks him.


What's your personal story of Jesus?

"Is everything all right, mom?"

I knew it was a bad idea when I agreed to it. But, I looked into my son's big eyes, and I couldn't resist.

As I pulled my van into the church parking lot, my son asked if he could attend "big church" with me instead of his children's class. He never asks to go with me because big church is too loud and long for him. I paused for a second before saying yes.

My son takes the seat next to me that is normally for my husband. But, today he is home with Jaycee who is recovering from her most recent hospital stay due to a respiratory infection.

The service begins and soon the ministry time is announced.

"Elijah, I am going to get prayer. Stay here with grandma."

I make my way to the front of the church keeping a promise I made myself a year ago. After a hospital stay with my daughter, I need prayer for myself as much as I don't want to admit it.

While Jaycee physically recovers from her twenty-something hospital admission, I mentally and emotionally recover too. The "crisis" is over in real life but not in my mind. There is a familiarity that comes with each hospital admission but there is never calmness.

It's not easy medicating and monitoring your child at home for days wondering if she will get worse. Then it's disturbing to wake up to your child struggling to breathe with blue lips and fingers. It's difficult to drive your child to the emergency room alone stopping occasionally to clean up her vomit. Being in an emergency room and following an ambulance to yet another emergency room is not ideal either especially on a few hours sleep. Watching your child lay in an Intensive Care Unit on a bi-pap continuously for a while because she can't breathe isn't the best feeling in the world as a mother-- even though this isn't the first time this has happened. There's a shock that goes through your system when your child's monitor alarms for a worsening vital sign. There's a relief that comes when your child is getting better and is discharged. It's short lived though because soon I become the nurse for the next 7 days caring my daughter at home.

While I try to believe the lie I tell myself, which is I am fine, my body says differently. My arms are neck are extremely tight and tense. I have my husband massage the knots but I grimace with the slightest touch. I grind my teeth so bad in my sleep that I wake myself up even when I wear a night guard. I don't necessarily have nightmares, but my dreams are stressful (i.e. Jaycee's lost in the hospital and I can't find her). A stupid comment from a doctor a few days after her discharge sends me into a crying fit a day later as I wrestle with unexplained guilt and second guessing myself. Clearly, I am not fine. Hence, the need for prayer.

After a few people pray for me, I take my seat wiping tears from my eyes. I try to hide them from Elijah, but I know he sees them. He climbs up in my lap and asks, "Is everything all right, mom?"

"Yes, buddy. Sometimes, I just get sad when Jaycee is in the hospital. I don't like seeing her sick, and I get worried about her. So, it's important to get prayer when you feel worried. That's where mommy was. How do you feel when Jaycee is in the hospital?"

I already know what he will say, because the fact that he didn't want to separate from me this morning is already a clue.

The truth is Jaycee's illnesses that lead to hospital admissions impact everyone in our home. The worst thing any of us can do is to be dishonest with ourselves or each other. We are in this together. With prayer and time, we will all be all right again soon.


God,
I pray for those today with a chronic condition. May you give them strength for the battles ahead and courage to face each day. I also pray for those caregivers serving in love working out silent fears and exhaustion. I pray they will have renewed energy and hope in you today. Amen!

100 minutes a day for 2 years

Pneumonia. Asthma. Hospital admission after hospital admission. A scary stay in ICU.

In 2010, Jaycee was in the hospital twice for RSV and then again for pneumonia. It was the start of a pattern that got worse.

In 2011, Jaycee was in the hospital 4 times, 2 of which required ICU. This time they were for influenza type A, RSV, pneumonia in one lung, and pneumonia in both lungs.

2012 was a better year after changing some of her medications. She was only in twice for asthma and atelectasis.

2013 was the breaking point for us. Jaycee was in the hospital 5 times, including once in the ICU.

These are just the illnesses that required hospital admissions. She was treated at home for other respiratory illnesses.

All of this led to my husband and I looking for a second opinion for Jaycee. She was sick more than she was healthy, and it was taking a toll on all of us. Medications were increased and daily vest therapy was started. Still, she was having breathing issues.

When we shared our concerns several different doctors, we were told, "She will just be sick. There's nothing else to do."

If they were looking at their child puffing up and gaining weight from oral steroids and missing school for weeks at a time, would they be so dismissive??? If they saw their child so sick that she needed a ventilator, would they just go on with life so easily??

A new doctor at a different hospital about 4 hours from home provided a second opinion for us. It was nearly two years ago when we met this doctor and was given a new daily treatment plan. In his experience, he often recommended a specific approach to treat children like Jaycee that had asthma, recurrent pneumonia, obstructive sleep apnea, and a lung cyst.

Jaycee had already been on vest airway clearance twice a day and an inhaler to try to provide daily support. This doctor added in another daily inhaler and a daily nebulizer treatment. He handed us the written protocol:
-Administer 1st inhaler
-Wait 10 minutes for inhaler to work
-Start nebulizer treatment
-Run 20 minute vest therapy
-Administer 2nd inhaler

Quickly, I scanned the sheet. Wait? I added up the time in my head. How long is this going to take? Only 50 minutes from start to finish?!

"It's a commitment," the doctor said. "But you will see results."

Wow! If it works, it will be worth it. I was hopeful. I was also happy to hear there were some options left. (Through the course of this second opinion, we also discovered Jaycee had severe GERD that had went undiagnosed for years!)

It was February 2014 when we started the new 50 minutes a morning and 50 minutes a night medicine regime. It was an adjustment. I had to pray my way through it at times and was reminded that serving Jaycee is a ministry of its own for me.

I am not a morning person and neither is Jaycee. This regime required Jaycee and I to get up earlier than usual for school. On school days, I get up 6 and I get Jaycee up at 6:20. We have our mornings timed to a perfection.

The morning 50 minutes of medicine ended up not being as bad as I thought it would be. I lost a little sleep. I have to go in and out of Jaycee's room more often but it has become routine now.

The evening 50 minutes has been more difficult. On nights when we have nothing going on, our night medicines are done without any problem. The difficulty has come when we have something to do or somewhere to go. When are we going to do Jaycee's medications? In a pinch, we have done them in my van. Fortunately, my van has an outlet in it, so we can run her medical equipment while we are driving down the road. This has been extremely helpful! But, sometimes it is a pain to try to get Jaycee's medications in while allowing her to have some fun.

Jaycee watching the IPAD while doing a nebulizer treatment

Has doing this 100 minutes a day helped?
In 2014, Jaycee was only in the hospital twice. One of them had time in the ICU.
Last year, Jaycee was admitted twice both of which included time in the ICU.
Two hospital stays a year is much better than 5. But, the biggest improvement has been her ability to fight off colds better at home without going into the hospital. She rarely has an intermittent wheezing and difficulty triggered from extreme heat or cold now.

What have I learned in the past 2 years?
First, a second opinion is sometimes helpful. I felt I had researched and talked to enough doctors that a second opinion wouldn't be worth my time, money, and energy. I also didn't want to look crazy and paranoid to people. But, we were highly motivated by the fear that one of these illnesses could take Jaycee's life. That brought us to just the right doctor who had a totally different approach. If you are frustrated or don't like your doctor's plan, get a second opinion. Don't assume you have tried it all!

Finally, taking care of a child with special or medical needs is a ministry of its own. Sometimes, I feel the restraint of Jaycee's 100 minutes a day. I think of the things she and I miss because of the need to keep her lungs healthy. It is easy sometimes to let it bother me and get frustrated. But, I know it's helping. I know it's worth it.

Jaycee's life is worth every minute of every day of every year spent doing treatments! That's what keeps me going!

Jaycee doing her twenty minutes of vest therapy session.

10 Guarantees In the Hospital

It's good to be back here on my blog after a short break. If you read my last post, you may be wondering how my daughter is doing. She is great! She has made a full recovery from the pneumonia in both of her lungs. We have enjoyed being back home. I have rested and am ready for life to get back to normal.

That week in the hospital was strangely familiar to some of Jaycee's other admissions. I have become accustomed to how our hospital works and what to expect with Jaycee's admissions. While in the hospital, I have brief encounters with other parents. Some parents have spent significantly more time in the hospital than me. Others are clearly first timers. It got me thinking about how much I have learned about hospitals in the past 9 years. Most of our hospital admissions have been at St Louis Children's Hospital for respiratory issues. Certainly, experiences vary from hospital to hospital and for an individual patients needs. If you are relatively new to hospital life or will be going in to the hospital with your child soon, then read these to discover what it's like to be in the hospital.

1. I can guarantee you, sleeping will be difficult for you and your child.
In our hospital, only one parent is allowed to stay in the child's room. Sleeping options are a couch, a chair that folds out for sleeping, or the worst possible scenario-a regular chair. Besides the less than ideal sleeping options, there's the fact that the room is never totally dark, there's often people in and out of the room, and there are beeps from monitors and IVs. If you have a roommate, then it's even harder because there's twice the noise.

The other parent who can't sleep in the room gets to sleep in the parent lounge. This person doesn't have it any better. Due to problems with theft, the parent lounge is lit up all night. (Yes, isn't it awful you have to worry about theft while your child is sick?) The light really bothers me unless I'm just exhausted. Usually, the sleeping options out in the lounge are couches and sleeper chairs. The parent lounge is filled with other tired parents snoring, watching tablets, or talking on the phone. Neither sleeping option is great, but I tend to sleep better in the room with Jaycee. I have started taking Tylenol pm in the hospital to help me drown out some of the background noise. I have learned to be thankful for whatever sleep that I actually do get. Obviously, the best way to get sleep is to go to a hotel, but that isn't always a good option financially or for the child.

2. Things are done on the hospital's schedule, not on yours.
I use to get so angry when my child's P.M. medications were given at 9 at night after she had fallen asleep. I didn't see why the medication couldn't be given at her normal times. I would tell the nurse she got her medications at 6 am and 5 pm, which didn't seem to make a difference to them. After several admissions, I finally discovered that if a child gets a medication twice a day, then it is given once on the morning shift and once on the evening shift. Things are done on the hospital's staff schedule. You must adapt to it.

3. Some things are done at inconvenient times at the hospital.
Labs at 4 am sound reasonable right? Just when you go back to sleep, how about an X-ray at 5 am? I use to get so annoyed with these, but I learned it was done in part so that the doctors could have all this information for morning rounds.

How about a bath at 4 am? Sure, why not? It's a common practice in the ICU for us. I learned baths are typically done during night shift in the ICU because they generally have more down time than day shift. It may not make sense to you on why things are happening when, but I am sure there is a good reason for it.

4. Your child's skin will most likely leave bruised, irritated, or with small scabs.
Pretty much every admission for Jaycee has involved blood work, a nasal swab for viruses, and an IV. Jaycee is not an easy stick, and I'm well aware that even the best nurse can miss more than once with Jaycee. This results in bruises, sometimes many of them. In the ICU, the doctors generally like to have more than one IV line for Jaycee. To get 2 IV lines, multiple sticks may be necessary. Then things get worse when there's PICC lines, central lines (like the one in her neck in this picture), and arterial lines which will all leave small scabs and sometimes scars. Add to that tape (see picture) and stickers for leads and Jaycee's skin can get very raw and red.

5. Care is only intensive in you are in the Intensive Care Unit.
I use to think that Jaycee being in the hospital at all was cause for extreme monitoring and frequent checks from the nurses. I learned that a child in the hospital doesn't need monitored 24/7, unless they are in the ICU. A monitor may beep for several minutes with no one rushing in to your child's room. You may push your nurse call light button and no one may come for what seems like ages. But here's what I have learned: the nurses are busy. They are taking care of many people. They know which patient needs more intensive care. If you are not being checked by a nurse often that probably means your child is getting better. It's a good sign. But, it could be a sign that your nurse is terrible, so ya know!

Now, in the intensive care unit. It's different. The sickest kids will get 1 nurse assigned to them for a 1 to 1 ratio. When Jaycee had several IV lines, needed constant monitoring, and was on a ventilator, she received her own nurse. As she got better, she shared a nurse with another child. The care is intensive in the ICU. There's always a nurse (and usually a doctor) around to grab for any concern or need. Being in the ICU is really nothing like being on a regular unit in a hospital.

6. Opportunities to see the doctor are few.
This may vary from hospital to hospital. But at our hospital, the interactions with the doctors are limited. A doctor will usually come in early before rounds to check on Jaycee. We always try to be at rounds because that's when the doctors are present to report about Jaycee's progress and plan. That's the best time to ask questions and share any concerns because it may be the last time you see the doctor that day. If there's a change for the worse, then the doctors will make a sudden appearance. But, the doctors aren't just hanging around checking in frequently. This is the difference between the floor and the ICU. The ICU always has doctors around. They are close by because kids in the ICU are more prone to needing immediate attention. We usually have short chats with the doctors 3 or more times a day in the ICU, which is extremely helpful when things aren't going well.

7. It is to your benefit to be kind to the nurses.
Because you have limited interactions with the doctors, the nurses are crucial to your child. For the most part, we have had very caring, knowledgeable, and efficient nurses. Once in awhile, there's a nurse that just messes things up or doesn't know how to care for your child properly. But, I try to give nurses the benefit of the doubt. I know they are busy, work long hours, and have many responsibilities. They may make mistakes. If they aren't major ones, just let it go. Smile at the nurses. Ask them how their day is. Don't call them in the room for every little thing. Respect their time. I have "befriended" many respiratory therapists and nurses that have allowed me to get new information about Jaycee. There have been some burning questions I have had about Jaycee that I finally got brave enough to ask through some chats with nurses. Nurses that have worked their specialty for years are very knowledge. They are great people to ask questions to.

8. There are many rules at the hospital designed to keep the patients safe.
Our hospital has rules about the number of visitors at one time and restrictions on children visitors. At our hospital, siblings can visit but no other children can. Sometimes it's a frustrating rule, but it's a good one. There doesn't need to be a room full of child visitors bringing in their own germs and being loud for other patients. But, this is a rule I see first timers struggle with. Another rule first timers have difficulty with are those for children admitted with a virus who are in isolation. When your child is isolation, they cannot leave their room or the unit. Yes, it can be boring, but it's for the safety of the immune-compromised children.

9. Discharge is not immediate.
The first few times I was told Jaycee was being discharged from the hospital, I started packing up our belongings and was ready to go. Little did I know, I would sit there for hours before we would actually get to leave. Prescriptions needed to be wrote, discharge papers had to be signed, medications needed to be relabeled, and follow up appointments needed to be scheduled all before we could go home. It seems like this should be done quickly right? Not most of the time. If Jaycee and I actually leave the hospital before 1 pm, I consider it a "quick" discharge.

10. This is the most important one... The sooner you accept the way things are at hospitals, you will be happier.
It's easy for a sleepy and stressed parent to get frustrated and upset about little things that happen in the hospital! The sooner you learn how things are and give up your idea of how things should be, it will decrease your stress. Your child's recovery is the number one thing you should focus on. Let all the little stuff go. Sleep when you can. Take breaks when you can. Ask questions when you can. And just be thankful for day you leave that place.

31 for 21: I'm quitting.

An alarm beeps.
A iv pump hums.
The sound of a bipap giving breath never stops.
My daughter lays in ICU very sick with a respiratory issue.
Jaycee screams for "mama" as she is suctioned.
And I'm reminded how your life can change in an instant.


I had plans this month.
Down syndrome awareness month is important to me because of Jaycee.
I know how scared I was when the words "Down syndrome" hung in the air from a doctor.
I didnt know what challenges we would face and what life would be.
NIne years later, I know.
I know how hard some days are but I know the joy, the love, the happiness you feel when you open your heart to someone like Jaycee.
I know how love has more meaning when there's more chromosomes present.
And I know there are people everyday who are scared to take on a baby with Down syndrome.
And so I write, I advocate, I tell our stories, I try to tell people they can do this!

And I sign up to blog for 31 days in October for Down syndrome to raise awareness.
And now I quit on day 12.
Jaycee is in ICU and she needs me.
Raising awareness is important but nothing is as important as my daughter.
So as I officially quit this blog challenge, I wish you could sit in this hospital room, see what I see, feel what I feel for Jaycee and then blogs like this wouldnt be needed, because you would understand how powerful love is.

When you have R Rated Memories

Sometimes my memories are R rated straight out of a horror film.

My R rated memories are graphic, scary, gory, painful or plain old awful and inappropriate for those under age 17.

When Jaycee came home in June this year after a three week hospital admission, my R rated memories of that admission were flooding me whenever I wasn't busy for a minute. The sounds and sights of Jaycee being suctioned down her intubation tube was horrific. The panic came back when I thought about her blood pressure dropping multiple times.

Beyond this last admission, there have been numerous times in the past 9 years when a moment became a long lasting R rated memory. Without being too graphic, here's a few:

• The moment Jaycee's heart rate was in the 200s while the ER staff frantically worked and I saw a crash cart wheeled near her for the first time (Thankfully it wasn't used.)
• Watching Jaycee's chest tube come out after her heart surgery (Trust me...it's gross. My husband got physically sick during this!)
• Seeing multiple unsuccessful IV attempts on an infant Jaycee until they finally got one in a vein in her head
• Seeing Jaycee turn blue multiple times at home due to respiratory distress and frantically trying to administer her emergency medicines
• Seeing the puddle of blood when I stood up from my wheelchair at the hospital during my miscarriage
• The times I have been given terrible news about Jaycee's condition worsening (Multiple anything you have seen in a movie X 100)
• Watching a PICC line come out of Jaycee's arm (Once was enough for me! Didn't watch the second time!)
• Seeing Jaycee being bagged in an extreme oxygen desaturation in the ICU (Second and third time was just as scary)
• The "crime scene" look to Jaycee's bedroom after her hemorrhage post tonsillectomy
• Knowing the child in the ICU room down from us is dying and seeing the parents walk out empty handed afterwards (Broke my confidence that only miracles happen in ICU)

What do I do with these R rated memories? They happened. It's part of what has shaped my life, my thoughts, and how I view the world. There's plenty of them to sift through too. My question in my prayer time with God this summer was, "God, what am I suppose to do with these awful memories?"

Choosing not to think about them seemed like avoidance and denial. Not dealing with them felt as if I never worked through them. Yet thinking about them made me feel depressed, anxious, and fearful.

I wanted to get my R rated memories down to a manageable level where I could think about these things without so many emotions.

I learned from wiser Christians how to pray about these memories. I prayed that I would no longer have those emotions when they popped up in my head. I prayed for my peace. I prayed that God would help that old self of mine in those memories to be strong and be comforted.

Memories after all are just memories. The fear that accompanies some of them is no longer a real threat to me now. I survived these experiences. They are over.

And so I will keep working on these R rated memories so that they will no longer feel like I'm trapped in a horror movie in my mind but more like a boring, low-key documentary.