Our Time at Mayo Clinic

I'm not sure where to begin the story of the events that led up to my daughter being seen at Mayo Clinic in Minnesota for a third opinion. Jaycee has experienced more health scares and illnesses to properly be summarized in a short paragraph. If you are my friend in real life or follow my blog on Facebook, you have some sort of perspective on her situation. If not, may I suggest you read the following posts for some background:

Living in ICU

Your Worst Thing

The Two Versions of a Hospital Stay

or for the full story, check out my book Badges of Motherhood. 

The recent frustrations with Jaycee's health began in the fall of last year. Jaycee had a couple of hospital admissions close together. One was for a fairly bad pneumonia. When discharged to home, she didn't bounce back. Her recovery was long, slow, and stressful. In January of this year, she ended up in the hospital back-to-back. By the second admission, they discovered she had RSV and an "atypical" pneumonia. Again, her recovery was long and slow. There were other illnesses besides these that didn't require the hospital, but intense home interventions were needed to keep her breathing stable.

By spring, Jaycee met with a couple of her specialists who were concerned with her respiratory infections. Numerous immunology tests were completed for the third time in her life. Nothing spectacular was found. Again. At the end of the tests and appointments, the best recommendation was for Jaycee to start monthly asthmatic shots though nothing in her blood work indicated it would be helpful.

When my husband and I received the call regarding Jaycee's tests and recommendation, we were exacerbated. There was no answer for the respiratory infections. We were given little hope that things would improve because we were given no rhyme nor reason why she was getting sick repeatedly and recovering so slowly.

"Sometimes, I think we should just take Jaycee to Mayo Clinic," I said to my husband after the call.

My husband asked, "Well, why don't we?"

"I don't know how you get into Mayo Clinic. Is she bad enough to go? We've already had a second opinion. Does she need a third?"

My husband responded, "It's worth checking into. What have we got to lose?"

Thus we began a quick look online to discover that anyone can call Mayo Clinic and request an appointment. The next day that's what I did. There were two paths to receiving appointments. We could pick a specialist to see and discuss Jaycee's problems and concerns. This would be quicker option. Another route would be to see a diagnostic team. We opted to schedule with a Pulmonologist knowing she could be referred to a diagnostic team if deemed appropriate.

Some weeks later, we made the nearly 9 hour drive to Minnesota. When we took our first steps inside Mayo Clinic, we were in awe of the look and feel of the hospital. Mayo Clinic is known for helping the most complex cases, and there seemed to be a dose of hope somehow contained in the building. Our nerves grew as we waited for Jaycee's time with the Pulmonologist and a Respiratory Therapist. We discussed Jaycee's medical issues for 90 minutes. We were relieved to hear they were more than interested in evaluating Jaycee with a team of other doctors at a subsequent appointment.

"We've seen many sick children like your daughter. We will figure this out," the Pulmonologist promised. It was a confident statement, especially when others have tried and failed.

Roughly six weeks later, my mom and I arrived at Mayo with Jaycee for a comprehensive evaluation. Over the next 4 days, we met with several doctors and hospital personnel for clinic appointments or tests. Everyone was interested in helping Jaycee get to a healthier state with her lungs. Most of the team members devoted ample time to her appointments, which is something I rarely encounter anymore. Jaycee had many tests completed, but the team was always considerate of Jaycee's tolerance and stress. Jaycee wasn't the only one they were concerned about.

During one of the appointments, a professional looked at Jaycee's long list of illnesses and surgeries. She stopped and asked me, "How have you coped with all of these hospital admissions?"

Only a couple of people in my daughter's medical team have ever asked me that question. I felt this place saw the complete picture. This wasn't about pneumonias, medications, and hospital admissions. It is really about giving Jaycee a better life. In turn, it would change my life, my husband's life, and my son's life. Her illnesses affect us all in different ways. I felt someone "got" it.

Jaycee drawing some pictures waiting to be called back. 

Between our appointments, we had time to explore the hospital. We marveled at some amazing statues and art scattered all over their campus. As we walked hallways and tunnels to get to the parking garage, we passed a series of paintings by Andy Warhol. At times, I didn't know if I was in a hospital or a museum. The waiting areas weren't sterile boring areas with lines of chairs. It was more like a hotel lobby and, therefore, more relaxing.

In the main lobby, a piano was often being played by a skilled musician. Once, there was a beautiful voice belting out a hymnal that drenched the listeners in an overwhelming sense of peace. For a second, I forgot we were in a hospital and would soon be hearing news about my daughter's future health.

The entire town had a special feeling about it. I am guessing that most people visiting Rochester are there for Mayo Clinic. People in wheelchairs, wearing bandages, or carrying Mayo papers around were commonplace outside the hospital. There was an air of understanding in the whole town that many people were here searching for answers or enduring some health battle. You think it would feel depressing, but it was actually the opposite. It reminded me of our time at Give Kids the World Village on Jaycee's Make-A-Wish trip. It was a community of people who understood your journey even if they knew nothing about it.

Then the long awaited moment happened. The team at Mayo explained to me while my daughter suddenly turns blue when she's sick. They described why she gets repeated respiratory infections and why she doesn't recover quickly. I don't want to get into the technicalities of it all here, but there were three new problems identified with her lungs/airways. It was a relief and a disappointment all rolled into one conversation. We have seen multiple specialists over the years, and none of them have provided these exact answers. Before this trip, I had decided we probably wouldn't receive answers again, but, much to my surprise, they came with thorough explanations and pictures. Everything suddenly made sense. There are options available to treat her new diagnoses, but there's no magic fix. The best thing for her is to stay well, which seems like an impossible feat given her history.

As we have settled back into our routine at home, I am left with a mix of emotions. The path to Mayo began with a spur of the moment conversation between my husband and I. It was a discussion that seemed God inspired because it was so random. Because of that, I want to believe that our trip to Mayo Clinic will lead to better things for Jaycee. I am grateful for answers and hopeful they can help my child.

For now, Jaycee will start new treatments, await medical equipment approval from our insurance, and pray those lungs keep breathing well every day.

The Aftermath of an Illness

My house has hints of what's transpired over the past few weeks littered about in various rooms. The kitchen has more syringes in the drying rack than usual. The thermometer and small pulse oximeter have taken residence on the kitchen counter. Four extra medications sit beside them. Next to that, a notebook filled with pages of documentation regarding medication administrations, heart rates, and oxygen saturation numbers lays open-ready for more notes to be added.

In the living room, discharge instructions from the hospital lay on my side table. Two sets of nebulizer masks and tubing sit beside family photos.

In Jaycee's bedroom, the familiar bi-pap takes its usual place next to the bed. Added to the mix of equipment is the bigger hospital grade pulse oximeter to monitor Jaycee while she sleeps. It's pointed directly at the video baby monitor, which feeds into my bedroom at night. Tape, to secure the probe, is within an arm's reach.

The last few weeks have revolved around my daughter's respiratory illnesses. Her combination of Down syndrome (narrow airways), asthma, obstructive sleep apnea, and a poor cough response means that a small change in her respiratory status can bring about serious breathing problems. Daily, we do inhalers, hypertonic saline nebulizer treatments, and vest airway clearance to keep her lungs in "best" state. Her interventions increase with the onset of the slightest symptom.

At the beginning of May, Jaycee had a respiratory flare up after flying on an airplane. By the time we flew home from our short trip to Vegas, we were attacking the illness (or whatever you want to call it) with albuterol treatments, steroids, and frequent monitoring. Just as she was starting to improve she caught a cold that my husband and I both had. Her breathing was audible at times as the cold brought on coughing and snot. We made more trips to the doctor, calls to pulmonary, started another round of steroids, and kept on treating her at home. By the end of week three, I was ready for her to be well.

As we came home from grocery shopping, I told my husband, "I think Jaycee is finally getting better. Maybe my stress level will start to decrease." Earlier in the day, she had energy to play with her cousins. She laughed at jokes during a family celebration. She ate the delicious fish and cupcakes.

Ten minutes after I made that statement, everything changed. As I drove home, I said, "Jaycee's breathing sounds weird." I couldn't see her, but my ear is finely tuned to hear the slightest change in her breathing. My husband reported she was fine- simply trying to sleep.

"That's probably a bad sign," I said.

It was. The emergency inhaler and small pulse oximeter we had carried around all day came in handy as we started giving medications and checking her numbers. I pulled off the highway to see that her fingers and lips were blue. I knew the number would be low; it was.

My son sat next to her in the van saying, "I don't understand what's happening."

The day was so ordinary just hours before this occurred. A smile had been on my face where a worried look appeared most days prior. Things were going well until they weren't. My family was shocked as I told them the news. No one could believe the change in her respiratory status, except they could because it's happened in the past.

That led to 48 hours in the hospital over Memorial Day weekend.

It was a short admission for Jaycee. Like usual though, Jaycee needed intense around-the-clock interventions and monitoring once home. Her recovery was slow. At the time of writing this, she's yet to get back to her normal baseline, but she's inching closer.

I see the illness in different parts of my house. I feel the effects of the illness in my own body and mood. I hear the difference in my daughter's breathing. I listen to my son talk about his concerns after witnessing his sister turn blue. This is the aftermath.

If you have read this post and can't relate to any of this, you are blessed. If you have never been through a medical emergency with your child, you are blessed.

Do you want to know something? I'm blessed too. Blessed is a perspective. Yes, in the middle of her respiratory distress, I didn't feel blessed. However, I knew I was, even if I didn't feel it. Stress, fear, worry, and exhaustion are all strongly felt during Jaycee's illnesses. However, I also know that we are in this together as a family. We're looking out for one another. We're carrying each other's burdens and thinking about the needs of someone besides ourselves, which was a bit challenging when this illness was happening during my birthday. Still, I know what's important in the long run.

An illness brings an aftermath. God meets me there helping me through all the cares of this world to more effectively love my children.

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.

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! 

My Book: Badges of Motherhood SNEAK PEEK

I've dropped some hints over the past few months about the book I have been writing. I am stoked to announce that it is finished! I have spent years writing these stories that have impacted me the most as a mother. Sometimes, my daughter's health issues put the book on hold for months at a time, but I began working on the book again when life settled down. It has been a dream of mine to see this thing out to completion, and I'm excited that it is now accomplished.

Badges of Motherhood: One Mother's Story about Family, Down syndrome, Hospitals, and Faith is the story of my life as a mother over the last 12 years. If you are a regular here on the blog, you know a little about my life and my children. If you don't, let me fill you in. I am the mother of two children, Jaycee and Elijah. Jaycee has many diagnoses including: Down syndrome, a twice repaired heart defect, Wolff-Parkinson-White syndrome, GERD, asthma, obstructive sleep apnea, and recurrent pneumonia. When she gets a simple cold virus, it attacks her lungs in unpredictable ways. I have been at her side through many hospital admissions and stays in the Intensive Care Unit.

As you can imagine, the events I have lived through as a mother have impacted me spiritually and emotionally. I have had to understand my Christian faith in new ways as I watched my sick child suffer again and again in the hospital. I have had to work through stress, anxiety, and fear from certain diagnoses. When people said or did things that made our situations worse, I have had to choose forgiveness. My book delves into all of these topics.

In Badges of Motherhood, I move the story from one chapter to the next using the concept of badges. The badges represent the especially rewarding and challenging experiences or emotions a mother has with her child. The first chapter in the book is the Delivery Badge, which tells the story of the births of both of my children. Chapter two is the Diagnosis Badge. In this chapter, I recount all of Jaycee's major diagnoses by sharing how they came about, who gave the diagnosis, and how her life and mine changed as a result of them. From there, we move to the Hospital Care Badge where I describe what it's like caring for a child in the hospital.

In all, there are 17 chapters or badges in the book. The most difficult chapter to write was the Intensive Care Unit Badge followed closely by the Miscarriage Badge. The most revealing chapters into my thoughts and emotions can be found in the Faith Badge and the Stress Badge. Not all of the chapters are serious and intense. The Wish Badge describes Jaycee's wonderful experience through Make-A-Wish, and the Child Baptism Badge tells how I successfully prepared Jaycee for baptism at church.

It is true, Badges of Motherhood, is as much about my daughter's story as it is mine, but our lives are connected and intertwined. She is the person experiencing the illness in the hospital bed, and I am the helpless mother wondering how I can help her. I can't imagine how she has felt as she has endured everything in her life, but I do know how I have felt as her mother.

I know that many people cannot imagine a mothering experience like mine. But, I am convinced that most mothers have their own badges too that make them who they are. It is my desire that readers can reflect on their own lives and appreciate their own badges. I also hope that Jaycee's miraculous story inspires them in some way.

Badges of Motherhood is only available on Amazon in both an eBook version and a print version. The print version is available right now. The eBook will be available November 2nd, but you can pre-order it today too! There are a few more pictures in the eBook version that aren't in the print version, but all the written content is the same. Just follow this link: BADGES OF MOTHERHOOD
Just for you- here's a look at the book's full introduction:

The signs are all there: you get less sleep, your day is centered around a tiny version of yourself, and you look forward to Mother’s Day. Yes, you are a mother. Maybe motherhood has been everything you have dreamed about. Maybe it was nothing like you thought it would be. Still, you find yourself in this unique, yet timeless, role of a mother.

Motherhood has only one requirement: to have a child. That child may have come through natural means, adoption, or marriage. No matter how the child became yours, a new world has come to you that you may have otherwise not have known so intimately.

Once a woman has entered motherhood, she begins learning new skills and having new life experiences, which are referred to as “badges” in this book. These badges tell the story of the achievements and challenges of the mom and her child’s care. The badges are symbolic of particularly special times in the mother-child relationship. Some of these badges are kept throughout a mother’s life, no matter how much time passes. Other badges can be discarded or lost.

There are some badges that all moms will go through like the Delivery Badge. There are some badges that only some moms will receive, such as the Diagnosis Badge. Some badges are highly anticipated (i.e. Child Baptism Badge) while others are not (i.e. Hospital Care Badge). Some badges can be earned multiple times for separate events or for each child, but some badges are earned only once in a mother’s life.

In all, the badges represent triumphs in the mother’s life, hardships that have been overcome, skills that were necessary for those moments, and the basic journey of a mom raising her child.

Since 2006, I have been acquiring several badges while parenting my two children. I had no idea just how much my life would change when I became a mother. Parenting has provided the most fulfilling, beautiful, and challenging moments of my life. I hope you enjoy reading about some of my badges and can value the badges you have earned in your journey as well.

Thanks for reading today's post. If you have a question for me, submit it in the comments below. (Comments are moderated, so they will not show up immediately once submitted.) Please feel free to share this post on Facebook, Twitter, etc. I hope you enjoy reading Badges of Motherhood!

Me and My Ugly Heart

My child has never been healthy, well not by most people's definition anyway.

She was born with Down syndrome, which by itself did not give Jaycee poor health. Her congenital heart defect did though. Jaycee went into congestive heart failure a few days after birth. I hoped early on that once her heart surgery was performed that her life would not revolve around the medical establishment. But that's not what happened. 

Asthma became an issue when she was a baby and continues to be a problem today. (No, she hasn't outgrown it despite kind-hearted people assuring me that she would.) Then came obstructive sleep apnea, GERD, and a list of other things that I won't go into detail about. These things have made surgeries and hospital admissions a regular part of her life. 

There has always been medicine in the cabinet for her to use daily.

One piece of medical equipment when she was a baby has grown into 4. 

Home oxygen has been on stand-by in our home for years. 

One hundred minutes of each and every day is devoted to Jaycee's airway clearance and medicine regime for the past 4 years. 

These experiences have made me appreciate the small things in life. They have made me feel blessed by little victories. They have given me compassion and understanding. They have given me a unique viewpoint and perspective on life, which I appreciate. 

There are times, however, when I see my experiences have done something else. 

They can allow my heart to grow hard and ugly.

A few years ago, there was a story about a teenager who died in a freak and unfortunate parasailing accident. The first day the story was on the news I thought it was sad. The second, third, and fourth day the national news ran this story, I started to get mad. I thought: Children die everyday in a hospital. Those parents don't get to tell the world about their amazing children. No national attention is given to them when they die. The parents of this girl took a risk letting her do this activity, and unfortunately, it ended badly for them. The parents probably had several good years with their healthy child before the accident; there are many parents who would have given anything to have a healthy child for so many years. 

The more I saw the story, the more aggravated I got. That was really Christian of me, right? That's when God would whisper to me...watch your heart! Behind the story was a hurting mother who didn't deserve what happened to her child. I had some very strong emotions over this story, and they weren't good. They revealed something deep inside of me that was rooted in my experiences with my medically complex child.

I learned that jealousy can rear it's ugly head in strange ways when I hear things like this. Along with it comes judgment as I decide who "really" is getting the short straw. That's terrible of me!

I have opportunities to share my love with others, but my heart reveals more ungodly feelings. In my work, I meet many parents of children with all sorts of histories and problems. Once in awhile, I will talk with a parent who tells me, "I took my child to the ER last weekend. It was the absolute worse thing. She had to have an IV for three hours before we could go home. It was so terrible."

I let the parent talk and express her worries. I say a kind word or two. In my head, I'm thinking: Really? Your child wasn't even admitted to the hospital. Your child only needed an IV for a few hours. Try being in the hospital for weeks lady. 

Of course, I don't say those things. That would be mean and unprofessional. I hold my tongue but my inner dialogue is going crazy. And I hear God whisper again...watch your heart! This mother had her first experience with the medical system. She was scared, and I should understand that more than anyone.

Then there's good ol' social media. When I read a post from a worried parent asking for prayers for their feverish child, I think to myself: Your child will be fine. They aren't even in the hospital. I rarely pray for these posts. What does that say about my heart? I don't even need God to point that one out to me. I'm wrong.

Please don't think that every day I am sitting around getting angry with people all the time. I have times when I get very worked up and off track. I am human, and I have struggles. I feel things that show my heart is not the reflection of God's. I have work to do. 

Sometimes, I have to remind myself that my experiences can cloud my viewpoint. I compare situations, make judgements about people's feelings and experiences, and decide who is worth my time and prayers. I let stories in the media keep me from seeing the deeper picture. That's so far off from God's heart. He loves people. He wants to help the hurting and meet people where they are. I should be doing the same. I don't want my heart to be ugly. I want it to be like God's.

I have to be vigilant to not let my life experiences make me bitter, jealous, and cold. I, of all people, should know how to minister compassion, grace, and love to others. I know what it's like to be a scared or hurting mother. I hope I can do better. So, I will caution people that are like me. If you have been through a tragedy, a hardship, or trauma, you too may be at risk for developing an ugly heart. Don't let your experiences keep you from reaching out to others who need some support. 

For more on this topic read Your Worst Thing.

Can We "Win" During Sickness?

A junky cough, a monitor alarming, labored breathing...

I respond with my daughter's emergency medications. I do all the things I have been programmed to do before we leave for the emergency room.

In this moment, I feel like we're losing.
Sometimes, I panic for a few minutes. Sometimes, I muster out a prayer.
The situation is out of my control.
It has happened again and again.

Each time, I feel like we're losing.
Our lives are interrupted by an illness that lands Jaycee in the hospital.
It is scary and unknown. Time and time again her lungs need help during a respiratory event.
Sometimes, she needs oxygen. Other times, it is full-time bi-pap or high-flow nasal cannula. A couple of times it has led to a ventilator.

The worse the hospital stay, the more it feels like we're losing.
The more support she needs to breathe, the more it feels like we're losing.

When we're back home, it feels like we have been in a boxing match that we have barely survived. Jaycee's body shows the marks of the battle. My daughter has bruises from repeated sticks. Her skin is often broken down from tape. She is frightened from the things that were done to her in the hospital and often is hesitant of my touch once home. Sleep evades me as I try to forget about the trials of the past days and weeks, and I often have to work to keep anxiety at bay.

After the chaos is over and life settles down, I briefly feel like we've won. She's alive and back home. That's a bit of a win, but the pain that led up to the win makes it feel very insignificant.

At church recently, a guest speaker made some comments that resonated with me on the topic of spiritual winning.

That's when a thought came to mind. It was a thought that I know was from God.

You think you are losing when you are in health battles with Jaycee, but you aren't. You've always won. When it looks like your losing, you're winning. 

I was astounded by this revelation. I mulled it over and even cried thinking about it.
I had always viewed these battles as losses simply because we were in them. Sickness found its way in her body again and again. Prayer hasn't kept these sicknesses away. I have never felt like a champion. In fact, I have felt battered.

For days, I thought about this idea. You think you are losing when you are in health battles with Jaycee, but you aren't. I even consulted my brother about it. (He's smart!) I've been looking at these hospital stays and health battles all wrong. The sickness isn't the indication of a loss, and that's hard for me to believe.

Somewhere in my upbringing, I became programmed to think that sickness is mostly due to sin or open doors or some problem in our life. I equated sickness with a spiritual failure that's present somewhere, and each illness of Jaycee's made me feel defeated spiritually. If you have been going to church a number of years, you probably understand this line of thought. It grew into my subconscious, and it made me feel like I was on the losing end of this battle simply because we were in them again.

My perspective on our situation is narrow. I'm too close to it. I see my daughter hurting, and I take it personal. I want her healthy-plain and simple. When she's struggling to breathe or turning blue or crying in pain in the hospital, my view of the whole thing can only be one thing....that it's bad and God isn't close in our situation. Oh man, how I need God's perspective!

I've come to understand another option. Jaycee was born in an earthly body with crummy lungs. Period. Her illnesses related to her abnormal lung function may occur simply because we live on a planet that doesn't always give us perfection in our bodies. We aren't in Heaven after all. Therefore, her illness isn't a sign of spiritual defeat but a mere product of living here on the earth. That's not to say God can't intervene in her situation. But, it's a way of seeing her illnesses as something else besides a "spiritual attack" that makes me believe we are on the losing end of things. I had a similar revelation on Jaycee's Down syndrome years ago, but never equated it to her lung issues.

Here's what I have gathered though in the past couple of weeks. If I really believed everything in the Bible, I would be more transformed by Christ and not let these health battles wreck me for weeks. If I can keep my eyes on Jesus, then I can find peace when life is out of control. If I don't look at her illnesses as a sign of losing, then perhaps I can see that I already have victory.

When I sit around feeling defeated because I see my daughter sick again, then I guarantee I am not in a position to effectively minister to her when she needs it the most. 

I have struggled a bit to write this post out. I hope it makes sense to most of you. I suppose I could say the winning occurs in my inner dialogue, my attitude, my point of view, and my emotions. If I think we're losing, I'm going to feel defeated and powerless to do anything. If I see myself for the champ God sees me, then I can be a victor especially when my daughter is struggling to breathe.

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. 

Joy to the...Special Caregivers

It's the most wonderful time of the year.

Well, it's suppose to be.

My attitude lately has, frankly, sucked. I don't want to sound like a broken record on this blog, but a hospital stay impacts a family for weeks afterward. Once Jaycee came home, I took over her intense care, which included nebulizer and vest therapy treatments every 6 hours around-the-clock for almost a week. Her oxygen saturation monitor beeped and alarmed multiple times a night for that first week home too. Basically, the tiredness I felt when I arrived home from the hospital with Jaycee grew exponentially.

Besides the zombie like state I was in, I didn't have time to process the whole situation until we were home when I had a second to think. This whole illness began with Jaycee turning blue at home. This has happened now more times than I can count. Years ago, Jaycee responded to her emergency medications, and her breathing would stabilize. This time, like the past few blue moments, the emergency medications were not completely working and she was ripping off her oxygen as I was trying to put it on. Can you say stressful?

I haven't even told you how my child hit and kicked me and the nurses in the hospital as she fought off the necessary activities that needed to be done while there. That was exhausting physically and emotionally. She was scared, so I wasn't upset with her. But, her resistance to touch continued when we came home, and I needed to touch her for one of her temporary but extremely necessary medications. I dreaded the two times a day I had to approach her with these medications at home because she would not calm down. Yep, that first week post the hospital was hard.

The combination of lack of sleep and the stress made for my less than desirable mood for the last few weeks. This season usually brings me joy. I love shopping for others, looking at Christmas lights, and the season of giving and kindness. I have had moments of happiness, but there's been lots of sadness, tears, and frustration with things that have happened lately.

Sometimes, it is hard to be a person of faith and stay joyful in times of trouble.
You want God to rescue you, and it's hard when it doesn't happen. It's harder when an illness (or problem) happens again and again. You want to make sense of something and find a way to have hope that things will be better.

There's something important that I need to keep reminding myself.

Heaven is perfect. The Earth is not.
Heaven is where my daughter will be free from sickness. Heaven is where I won't be stressing about her numbers on a monitor. Heaven is where we'll have perfect peace.

On Earth is where we are though. I want many years on Earth with my daughter too- don't get me wrong. But, the Earth is full of things that God neither wanted or planned for His people. I forget this sometimes. I forget that things aren't always going to perfect on this imperfect planet.

That's why the Lord's prayer is so powerful in moments when you feel God isn't in your situation. Your kingdom come. Your will be done on earth as it is in heaven.

I'll keep reminding myself to pray. I'll keep telling myself that I can have hope for a better future for our family. I'll tell myself that things were hard for a bit, but those tough times don't have to ruin future times that bring opportunities for joy.

So my fellow moms of children with medical or developmental diagnoses, I hope that during this Christmas season, you are finding joy. I hope you can shut out the chaos in your life right now and find peace. I hope that recent trials aren't souring your mood, and you can enjoy the fun times with your family today. I'm certainly going to try to do this! A sugar cookie or two may just help. 😊

⁹ In this manner, therefore, pray:

Our Father in heaven,
Hallowed be Your name.
¹⁰ Your kingdom come.
Your will be done
On earth as it is in heaven.
¹¹ Give us this day our daily bread.
¹² And forgive us our debts,
As we forgive our debtors.
¹³ And do not lead us into temptation,
But deliver us from the evil one.
For Yours is the kingdom and the power and the glory forever. Amen

Matthew 6

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....

Love is...Consenting to a Surgery

The monitor beeps as numbers are displayed. 

There's constant scurrying outside the doors of the room.

My eyes strain to stay open after a grueling night. 

A whimper comes from my daughter's mouth. 

I take her hand, kiss her forehead, and say, "I love you, Jaycee." 

She says immediately, "Uh-uh!" (As in No!)

"Yes, I do. Mama loves you," I say with conviction. 

"Uh-uh," she retorts. 

I felt broken. 

She's miserable, and she blames me. 

She's partially correct. I consented to all this madness. My husband and I both did. 

Like many people with Down syndrome, obstructive sleep apnea (OSA) has been an issue for Jaycee since she was 3 years old. Having her tonsils and adenoids removed shortly after her OSA was diagnosed did not "fix" her apnea. Thus, treatment with c-pap started on my skinny, little 3 year old child. 

Over the years, her OSA has gotten worse. Some of it can be blamed on her weight gain (which has definitely been impacted by her health issues, hospital admissions, and prednisone use several times a year), but not all of it can. 

The first few years Jaycee had sleep studies, I prayed we would see improvements, and I prayed with confidence. Every time in the past 8 years of studies, it showed she was getting worse and needed higher pressures to force air in to keep her airway open as she slept. Eventually, she was switched to a bi-pap and on high levels of pressure. (19/15 with a rate of 15) I was told her pressures were so high that it was like driving down the highway and sticking your head out the window. More than one medical professional remarked how incredibly high her pressures were and wondered how she tolerated it. That fact is that she didn't tolerate the high pressures. She wasn't keeping her mask on at night. She was also beyond tired and ready for bed by 8 pm each night. 

In the last couple of years, several tests were conducted. Opinions were sought out. Options were made available. 

One professional nonchalantly suggested the best course of action would be to do a tracheotomy, which would bypass all the possible obstructions in the nose and the mouth. When I told this well-respected professional how I shocked I was by this option, he responded, "I don't see why you are so surprised. Your child is severely disabled. She doesn't even talk." 

As if that was a reason to do it? I never saw that "professional" again. A tracheotomy may have solved one problem, but it would have caused many new ones. It wasn't an option for us. 

And so we found ourselves going back to something offered 2 years prior, a multi-level surgery to address her obstructions. The first time the surgical option was offered, I said I would never do the surgery on my child. Things changed though, something needed to be done since Jaycee was no longer able to tolerate her pressures. Never say never! After a sleep endoscopy test which absolutely showed what was collapsing in her mouth and throat causing the obstructions, a plan was developed. 

We knew going in to this surgery that it was going to be hard as there were 5 places in her nose, mouth, and throat area that would be operated on. Jaycee's recovery was gruesome after her tonsil and adenoidectomy when she was 3. But, she was 11 now...older, stronger, and a much better eater. I was cautiously optimistic about her recovery. 

The surgery was absolutely worse than her tonsillectomy. Jaycee was older, but her response to pain was similar. As long as she felt pain, she refused to eat and drink. One night in the hospital was expected, but Jaycee needed a couple more. When we came home from the hospital, I tracked every ounce and she was barely meeting the daily goal to stay hydrated. Then she developed thrush- most likely due to the medications she was on post surgery coupled with the fact that she wasn't eating or drinking well. The thrush added to her pain and discomfort. The word stressful doesn't begin to describe the situation but it's the best word I have. (Other than horrible and terrible) She was in a lot of pain and had to be encouraged (often forced) to take anything by mouth including her pain medications. 

Then it got worse. Through the baby monitor one night, I heard Jaycee coughing. I went to her room to check on her and found she was coughing on blood coming from somewhere in her mouth. This is a long story, but I'll skip ahead to the part where Jaycee ended up back in the hospital for observation. 

About a week later, we awoke to Jaycee covered in blood again. A second bleed! Ugh! This time, the bleed had stopped by the time we discovered it. (Jaycee apparently woke up, took off her blood covered nightgown, changed into a new nightgown, and put herself back to bed!!!) Again...long story that picks up where this blog post began....

...in the emergency room with Jaycee arguing with me when I told her I loved her. 

I'm sure the surgery was confusing. I'm sure she didn't understand her pain. I'm sure it was all mentally and physically exhausting for her. It certainly was for my husband and I, and we didn't experience the pain of the surgery. I'm sure at that moment Jaycee wondered why her mother and father had allowed this to be done to her. 

Parenting is hard. Deciding what to do for your child with health problems is extremely complex as you must weigh risks and benefits. The decision to do the surgery was done with prayer, research, thoughts, worries, and hope for a better future. 

That surgery was 4 1/2 months ago. I still hate the thoughts of Jaycee's recovery and could talk to you for an hour about everything that didn't go as planned. I'll just say this. A sleep study just 6 weeks post surgery (which was only conducted so she could safely restart her bi-pap as we were using oxygen only after surgery) showed improvements already! The full effect isn't seen until 6 months post, but just 6 weeks later, Jaycee's pressures were dropped to a more tolerable level. We knew this surgery wouldn't get rid of her bi-pap machine. We were hoping for the result that occurred just 6 weeks later. Plus, Jaycee can now cough up mucus. She's never been able to do that! 

And so...

I sat in that emergency room feeling crushed from Jaycee's complications and her doubting my love. I wished for a time machine. I wanted to go back before the surgery and opt out of it to spare her of this pain. At the same time, I knew it would be better in the future after she was completely healed up. I had to simply give it time.

When I tell my daughter that I love her now, she says it back to me. 💓

Last Week: A Missing Husband, A Dentist, and A Dead Fish

Last week was rough for many reasons.

My husband was out of town for work all week. When I wanted to watch 90 Day Fiancé, my husband wasn't home to protest. That is the one positive thing about being the only adult at home. Beyond that, it's kind of hard to suddenly do things without help when you are accustomed to having it. Jaycee's morning and evening medicine runs were all on me. The bi-pap at night was placed on Jaycee every night by good ol' mom. The school drop offs and pick ups were all me. The homework fun was all my department as well. Did I mention I work too? (Kudos to all you single parents out there!) It's an adjustment being the only one at home. But, then let's throw some added stress into a new routine with a dental procedure.

In the middle of the week, Jaycee had 10 baby teeth pulled. (Yes, 10! Her baby teeth just wouldn't fall out!) Because she aspirated the last time she had other baby teeth pulled and ended up in the ICU for several days, this relatively routine procedure had to be treated like something more. To keep her safe this time, we had to do the teeth removal at the hospital under sedation with her on a ventilator. Since my husband was away at work, I took Jaycee to the hospital solo and had to make arrangements for my son for 24 hours.

Everything went well, but there were two unsuccessful IV attempts Jaycee went through as well as some pain from the procedure afterwards. Even though this procedure was "uncomplicated," it still required time off work, schedule adjustments, and more medications to dose out for a few days.

Before the pain and misery, Jaycee was all smiles with her iPad and Beast doll.

That leads me to the dead fish. (Sigh) Let me first make it clear that I am not a morning person. I'm not thrilled to be waking up at 6 am every weekday, but I deal with it. I'm an adult after all! Anything before 6 am just feels wrong! The morning of the teeth extraction I had to wake at 5:30. I was already not in the best mentality when I came to the kitchen to prepare Jaycee's medications. Then I saw my son's fish floating in the aquarium.

Here's Redhead the goldfish on his first night in our home last month.

My son won this goldfish, which he named Redhead, at our town's fall festival last month. Honestly, we walked up to this game, and I didn't even know he was playing to win a goldfish. On his 11th out of 12th toss, Elijah scored, and a fish was ours. The next day, we bought an aquarium, rocks, food, and all the accessories. This $2 goldfish became a $70 investment. Did I mention we got him a friend? Jaycee chose a beta fish named Daddy Beast. (He survives.) We warned Elijah that goldfish are tricky to keep alive. As the days turned to weeks, we thought we were in the clear until that fateful morning. 

I have to admit that I cried a bit when I saw that floating fish in the aquarium. Should I flush him? What if it clogs our toilet? My husband isn't here to fix that problem. Should I throw it outside? There's no time this morning to bury the thing, and I didn't want the cat to traumatize my son with a half eaten carcass. I chose to throw it in the garage before taking it to the dumpster. Jaycee and I did say a short prayer first committing the fish to God's kingdom if he so desired. The death had no effect on Jaycee just FYI. Luckily, my son was spending the night with my sister-in-law who was responsible for getting him to school that day, so I was spared of his heartbreak for a few hours.

That night, I had to break the news to Elijah. My husband was on FaceTime and provided words of support as best as he could from two hours away. Elijah handled his first dead pet pretty well. 

By Thursday morning after all the chaos, I was spent. The hospital tends to make me nervous and uptight. I had been managing all the care on my own and disposed of a dead fish. What a day! What a week!!! I was feeling very overwhelmed. 

This post isn't very encouraging is it? I'm all about Down syndrome awareness this month, yet I'm in the verge of a tiny breakdown. Hang in a bit longer though. 

I was reminded of something in all of this. 

Parenting is hard. 

Whether your child has Down syndrome, autism, heart problems, or a developmental delay, there are times you are going to feel overwhelmed. You know what else is true though.....

Parents that have no child with a disability or medical issues have these same moments. 

Jobs may change. You might have to do things without your spouse that you'd rather not. And pets may die. Every week can't be carefree. 

My child's diagnoses were a small part of the stress, but most of it was just normal life stuff making me feel a bit overwhelmed. (Maybe more than I want to admit.)

For me, I knew I needed God more in those moments. I knew I needed to take someone by the hand a few days later at church and say I've been overwhelmed the last few days with life. Will you pray with me?

Maybe you aren't religious, and that's something strange for you. Then I hope you have someone to talk to and a way to de-stress after a hard week. 

Down syndrome diagnosis or not, life can have its moments that make us feel like giving up. But, there is hope for all of us moms and dads.

When all the chaos quiets and my kids cuddle up next to me at night, there's nothing stronger than a determined mom armed with love to keep going.

Asthma, Social Workers, and an Unhappy Birthday

I'm not sure how special May 28th is to you, but it's important to me. It's the day when I turn a year older.

A couple of days ago, my age went up a year, and I spent time once again reflecting on my life. I couldn't help thinking about my birthday last year. It had a much different feeling to it.

I tell many stories in my writings, but I don't share everything. If something is painful or emotional, I wait months or years before I may decide to share that part of my life. Time has passed since my last birthday, and there is a story I am now willing to tell.

In May 2016, life was a bit chaotic. My family sold our house and moved into our new home. Much of May was spent on final touches, packing, unpacking, and all the other lovely things that go with moving. Add to that, Jaycee started to get a cold. Normally, Jaycee does a breathing treatment and an airway clearance treatment twice a day every day. When she is sick, this increases to every 4-6 hours-sometimes around the clock. For a person with obstructive sleep apnea, asthma, two repaired heart conditions, GERD, and a lung cyst, a cold can attack her lungs seriously. Therefore, I go into a heightened alert when she is sick.

I was on edge those first few nights in the house, since Jaycee was sick. Because Jaycee's communication skills are limited and she cannot do a peak flow meter which many asthmatics use, I am forced to rely on what I see and hear for myself. I also check her temperature, heart rate, and oxygen saturation levels throughout the day to see how she is trending. If she gets really bad in her chest, she may sign to me that her stomach hurts, as she cannot tell what is exactly wrong in her body. That is the only thing she may tell me in an illness, so I am left on my own.

My best friend in an illness, the monitor

Those first few days after the move, I was worried about Jaycee. I was monitoring her like crazy and hoping she could come out of this illness without a hospital admission. I had consulted with her doctor once about her breathing too.

Then at 2 am on May 18, Jaycee's breathing suddenly got worse. We went to a local ER. She was transported to a children's hospital ER. Then, she was admitted to the ICU for Rhinovirus with asthma flare up.

On the first full day in the ICU, a social worker came to see me. This is typical. Usually, they ask if I need anything like hotel information. They ask if we have transportation home and if our son at home is taken care of while we are away. This social worker visit was different.

I was taken to a conference room down the hall from my child. The typical questions started. Then it launched into questions about Jaycee's daily care. I recited her medicines from memory. She marveled that I could work and keep track of all of Jaycee's needs and appointments.

Then the questions were directed to the present illness. When did you take her to the doctor? Why didn't you take her back when she got worse? Did you give her this or that rescue medication? Did you try this at home? Why didn't you call the on-call pulmonologist? Where is your husband? Your daughter is in ICU, you don't seem very upset about it. Are you aware how sick she is?

This was a long conversation. By the end of it, I was convinced the social worker was going to make a hotline call on me. Had Jaycee had showed pneumonia, this conversation wouldn't have happened. But, because she merely had an asthmatic reaction to a virus, my parenting was called into question. Now, I wanted to cry and be upset. I called a few of my friends and Jaycee's teachers to prepare them to be character witnesses for me if the need came.

I am like my favorite Seinfeld character, George Costanza. I thought of a million comebacks and things I should have said after the conversation. One of these included: Maybe if your ER hadn't stopped the continuous albuterol that the first ER started that helped her...And maybe if your ER hadn't let her go hours without a breathing treatment to "see how she would do", she may be in a better spot right now. But, I didn't say it. Frankly, I had been up for about 30 hours straight before this and wasn't thinking sharply.

Fast forward a bit, Jaycee was discharged on May 23rd. (But not before the same social worker came by to tell me to take Jaycee to the doctor more often when she's sick.) A few days later, I had to do the usual hospital follow-up appointment with our local doctor. The NP we usually see was on vacation, so Jaycee was scheduled with another doctor who didn't know her or me. Let me insert here that I had to beg Jaycee to get out of the van to see the doctor and practically pull her inside the clinic building because she kept signing, "Doctor. Hurt. Scared." We were both anxious to be there, and my stress level was high from just trying to get Jaycee into the building.

The doctor had read the hospital paperwork and checked Jaycee over well. Everything was going well. Before we left, he said, "I see they gave you an asthma action plan. That's good so you'll know what to do next time."

To which I replied (in near tears), "She's had a plan for years. I know what to do. She gets sick very quickly. I can't change that."

I don't remember what happened next except I found myself at home crying.
I was exhausted from the hospital and post-hospital care, which included round-the-clock breathing treatments that I set alarms for and completed. I was trying to adjust to life in a new house along with the rest of my family. And, now two different professionals voiced their concerns over my ability to care for Jaycee properly in an illness. I wanted to curl up in bed and never come out.

A day later, it was May 28th. Happy birthday to me! I wasn't feeling it at all. I was stressed and anxious. I was sad and confused. My husband was off work for my birthday and offered to take me to my favorite restaurant. Jaycee was still doing breathing treatments but we were able to go quickly to eat between treatments.

I cried on the way to the restaurant as I told my husband everything I was feeling. The kids were with us, so it was one of those contained cries with a lot of heavy breathing to try to mask the crying. He was ready to go punch a few professionals for me, but he didn't. He told me not listen to them and began to detail all the many things I do for Jaycee. He assured me the hospital admission was not my fault, which I knew at one time. We sat in the Chili's parking lot waiting for me to pull it together so we could go inside and eat.

Me faking a smile at Chili's on my birthday last year

I ate the delicious Chili's skillet queso and looked at my daughter who was sitting in a restaurant and not a hospital bed. That was a reason to celebrate!

There are times in my life that I can't wait to be over. I am certainly glad those days around my birthday last year are history. I do many, many things for my daughter to help her progress and stay well. I felt horrible last year when I was given the impression that I had done something wrong. Fortunately, I didn't need character witnesses because a hotline call was never placed. But I was on edge for a few months hoping Jaycee wouldn't go back in the hospital for an illness and force me to meet with that social worker. (Thankfully, she made it almost a year before going back, and there was no social worker sent to question me!)

My birthday this year was much less dramatic. Thank God for that! This year, the smiles in the photographs were real, and it really was a happy birthday.