Monday, January 6, 2020

2019: The Year I Prayed Differently

Happy 2020!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Monday, December 2, 2019

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

I formulated a plan without even realizing it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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Monday, November 18, 2019

Buying Christmas Gifts for the Child with Little Speech

My daughter adores Christmas. She loves to help decorate the tree, make sugar cookies, and watch light shows in our area. Jaycee enjoys the occasional Santa spotting as well. Even though her speech is limited, she and Santa can share a hug that means more than 100 words.

Jaycee, who is our 13 year old sweetie with Down syndrome, looks forward to our Christmas gatherings with family. When she was little, she didn't have much interest in the present portion of the night. She often opened up a gift or two and was satisfied with what she received. I recall one year that Jaycee unwrapped a DVD. She was so excited! She went in the other room to watch it rather than opening up the pile of gifts that remained from grandma. Her attitude of contentment and appreciation was something we should all replicate. She eventually opened up the rest of the gifts after enjoying her movie.

Jaycee now unwraps presents until there are none left to open. The hard part has been figuring out what to put in those boxes. To her credit, Jaycee doesn't care much about what is in the present. She smiles and receives anything with love. She never dislikes anything. In that respect, Jaycee is easy to please. Of course, I want Jaycee to like her gifts, but it is almost impossible for Jaycee to let me know what she wants.

"What would you like for Christmas?" I ask Jaycee in hopes she will give an answer.

She replies with speech and sign language, "Christmas tree." I don't think she wants a tree. I think she is associating my question with the tree where the presents go.

Other times, she answers my question with, "Presents."

She isn't verbally able to answer the question that so many parents ask this time of year. My 10 year-old son, on the other hand, is able to give a long wish list and often pulls up the desired item on Amazon.

What is a mom to do for a child who can't say what they desire? I want her Christmas to be special, but I also know it's not that important to her. I try not to stress about her gifts, and simply go with what I know. 

There are some things I have found helpful over the years. Here are my three tips for buying gifts for the child who can't express what they want.

1. If public outings are an option, take the child shopping. 
As Jaycee has gotten older, it has been helpful to take her to a store to see what interests her in the toy, movie, and clothing aisles. For years, Jaycee only choose items in the store that she already had at home. She gravitated toward the familiar, so shopping wasn't helpful.

Now, she can pick out things she likes, which makes it easier for all of us. Generally, she chooses toys or items with familiar characters, but sometimes she surprises me. This year, she has chosen an Elsa doll and a Lion King shirt on our shopping trips.

2. Consider what the child watches. 
Jaycee had favorite movies and television shows starting at age two. We purchased movies and items for her based on shows she already liked. When Barney the dinosaur was a favorite, I bought a stuffed Barney, for example. 

Last year, I took this same principle and applied it to YouTube. Jaycee loves watching a plethora of YouTube videos. In particular, she loved watching people open LOL surprise dolls and makeup tutorials. I don't wear makeup, so this was completely her interest. For gifts, we decided to buy her the LOL dolls and makeup because she had neither. Jaycee loved them both. Jaycee has added to her makeup collection over the whole year, and it has been fun to see a new interest develop. It all started because of YouTube.

3. Décor for the win. 
Over the years, when I have struggled to find a gift, I purchased something for Jaycee's room. It is money well spent because she spends a good deal of time in her room. We have purchased a new dresser, a large Beauty and the Beast wall sticker, Beauty and the Beast bed sheets, and Disney wall hangings. It's something she can enjoy all year round. 
Christmas is a magical time of year. As parents, we want all of our children to enjoy the season and participate. Even if a child isn't able to verbalize what they want for Christmas, hopefully we can come up with ideas that they can enjoy. My best advice is this: Trust your instincts as a caregiver. You know your child best. I'm sure you will know how to make Christmas special for your child. Happy shopping! 
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Wednesday, October 30, 2019

Caregiver Burnout- Who Me?

I think I have been tired for three years. Maybe four.

I can never get enough sleep. Sure, there are moments when I feel rested, but it doesn't last long. Whenever there's an evening event or extracurricular activity outside of our normal routine, my first reaction is to question if I will have the energy to go. I talk myself out of many things for this reason.

Why am I so tired?

Sure, I am busy. Many adults with children are busy. While other moms' schedules are full of sports and or recreational appointments, our calendar is filled with dates for medical appointments, insurance calls, and pharmacy pick ups. Weekly, at minimum, there is some aspect of her medical care that requires a phone call or a trip somewhere.

Besides being tired and busy, I feel stressed often. There are moments when my stress is understandable. When my 13 year old daughter with special and medical needs is sick, her care intensifies. On a typical day, I remind her to use the bathroom to avoid accidents. I give her minimal assistance with personal hygiene. She needs help putting on her foot braces, placing her bi-pap on each night, and taking daily medications.

When she is sick, her four nebulizer treatments and two vest treatments a day easily double. My daughter has to be monitored continuously at night via a pulse oximeter and checked frequently throughout the day. I'm on duty constantly in an illness as her breathing can change quickly. Of course, that brings about exhaustion, stress, and anxiety for weeks at a time, several times a year.

A trusted person in my life recently told me, "You have been intensely caring for a child for 13 years. At this stage of your daughter's life, she should be asserting her independence and wanting to spend time away from you. Because of her disability, that isn't happening, and you are wearing yourself out. You may not realize it, but you are burning out as a caregiver."

I had never considered myself a caregiver much less one who is burning out. I see myself as a mom doing things required of a parent. Yes, I feel tired and stressed, but I don't always feel that way. When I read about what a caregiver is (a person who regularly cares for a someone needing help with activities of daily living), I have to admit that maybe I am both. I'm a parent and a caregiver to a child with a disability, who couldn't manage without me. It's my honor to serve her and help her. Still, I must be honest that caring for someone for 13 years has taken its toll on me.

Time for a Change

Things have been different since our trip to Mayo Clinic about three months ago. We met with several professionals there who were not only concerned with Jaycee's respiratory issues but also concerned with me.

A social worker on the team asked, "How much support do you have?"

I didn't know how to respond. Rarely has a professional ever asked about myself. I am seldom asked if I can take on another responsibility for her care too. It's assumed I can manage another step in her care, a new piece of medical equipment, or another medication. It was awkward to talk about myself, but I'm grateful for it. It opened the door for me to really think about what I need to keep going as an effective caregiver.

As Jaycee's parent, I will do anything she needs. I will do breathing treatments every 4 hours around-the-clock, barely getting any sleep. As a caregiver, that's not a great long term plan.

I've done much soul-searching and researching about my daughter's care, my role as her caregiver, and my own health since our appointment.

The Cleveland Clinic website has this to say about caregiver burnout: It is a state of physical, emotional and mental exhaustion. It may be accompanied by a change in attitude, from positive and caring to negative and unconcerned. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able, physically or financially. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones. Caregivers who are "burned out" may experience fatigue, stress, anxiety and depression.
 These are signs of caregiver stress from the Mayo Clinic's website: 
As a caregiver, you may be so focused on your loved one that you don't realize that your own health and well-being are suffering. Watch for these signs of caregiver stress:
  • Feeling overwhelmed or constantly worried
  • Feeling tired often
  • Getting too much sleep or not enough sleep
  • Gaining or losing weight
  • Becoming easily irritated or angry
  • Losing interest in activities you used to enjoy
  • Feeling sad
  • Having frequent headaches, bodily pain or other physical problems
  • Abusing alcohol or drugs, including prescription medications
I don't have every characteristic, but I have enough to be aware that change is needed.

Over the past couple of months, I have been looking at ways to help myself as a caregiver. The changes have been long overdue. I've been letting some things go when I need to rest (hence the longer amounts of time between posts on here). We are in the process of getting actual nurses in our home to help with Jaycee's care. Things in our house are going to look different over the next few months. Change is hard and scary, but it is needed.

I want to be the best parent and caregiver I can be. I'm thankful for the people who have challenged me to be that person. If you are feeling burnt out too, I hope you can make some necessary changes for your health and the person you are caring for. 
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Monday, October 14, 2019

You Don't Want to Miss This Life

I remember many things about my daughter when she was a baby.

There were dozens of frilly dresses and cute outfits hanging in her closet. She looked adorable in all of them. I enjoyed dressing Jaycee up and fixing her brown strands of hair.

She made the sweetest little noises and had a weak cry that I never strained to hear.

There were early milestones to celebrate. Sitting up, walking, and climbing steps were each documented with videos and pictures. The milestones all came later than expected but were exciting nevertheless.

My husband and I held Jaycee often and showered her with love like any other baby. Perhaps, we did so a bit more as she underwent two different open heart surgeries before her third birthday. The uncertainty of her future was never far from our minds.

My daughter loved Barney as a preschooler. I got to know many of Barney's hit songs. I also became intimately aware of Mickey's need for Toodles every episode.

Though the years have passed, Mickey and Barney can still be heard occasionally on Jaycee's iPad. Hearing Barney sing about ice cream and cats takes me back. I miss the days when my daughter was little. Those times when she was light enough for me to pick up and spin around while she giggled with glee.

Jaycee is a teenager now. Her clothes are still plentiful and cute, but the frilly dresses are no more. After she chooses her clothes, she rummages around her hair basket and hands me a ponytail or hair barrette indicating her preference for the day. I obey her wishes like a good stylist.

She finds ways to communicate when verbally she can't. There are many gestures, grunts, and signs that I usually decode easily. There are some things through repetition she has learned to say. "Momma's mad like a hippo," for some reason is one such thing. Of course, she knows the lyrics to 'Baby Shark,' much to her brother's dismay. Her speech isn't clear enough to say everything she wants, but she tries hard and keeps making progress. Her cry, which occurs mainly during necessary medical procedures and tests, is now loud and breaks my heart a bit.

We have had different milestones in the past few years: the first time using a razor, first school dance, and first time cooking green beans independently.

Even though she's growing up, Jaycee still loves to be hugged and kissed. She sometimes gestures for us all to have a family hug. When she spots me sitting on my husband's lap, she yells for her brother, "Bubba, pile on dad!" My husband then finds himself holding all of us within seconds of her announcement.

Thirteen years ago, a doctor pointed out everything on Jaycee's newborn body that indicated Down syndrome. I cried about those differences. The doctor gave predictions about her life, and I worried what it would mean for she and I. When I researched Down syndrome, discouragement came with every word read.

In all the information I received, I never heard: "You don't want to miss this life." I would have benefited from someone telling me just that. My life with Jaycee would be great, and I wouldn't want to miss the chance to be her mom. I wouldn't want to miss all the love and awesomeness that lived inside my daughter.

I wasted too much time having negative emotions early on. Eventually, Jaycee's diagnosis faded into the background. She alone was what I saw and thought of, not the Down syndrome. She's more than her diagnosis after all.

If there's one thing I could tell a worried mom of a child with a Down syndrome diagnosis, it would be this: You don't want to miss this life.

It will be different and sometimes challenging. But, it is good. Our family is missing nothing.

October is Down syndrome awareness month. Down syndrome is a genetic condition when there are three copies of the 21st chromosome instead of only 2. 
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Monday, September 9, 2019

Things I Feel Other Than Joy

Friend, come sit with me for a moment. Take a seat on my cushy brown couch while I share something personal. I don't like to talk about hard things, but sometimes hard things need to be discussed.

I love my family. I feel joy often. But, some days are a struggle. Parenting is a hard job. Throw a husband and a job into the mix, and there's no shortage of responsibilities that can be challenging.

I have been parenting my daughter Jaycee, who has special and medical needs, for 13 years. There have been a plethora of emotions to navigate during health crises and emergencies, as you can imagine. Aside from that, some days are hard because of the ramifications of Jaycee's Intellectual Disability/Developmental Disability.

Sure, there are hard days. However, I am grateful that my daughter is such a sweet and loving girl. She is quick to show affection with hugs and kisses. She loves spending time with me. It's a joy to be her mom. But, it would be dishonest to say that's always what I feel.

Stress, my constant companion
I have discovered that more often than not, I feel stress. When my daughter was a baby waiting for a heart surgery and taking several heart medications a day, I experienced a high level of stress for the first time in my life. Health issues have kept the stress going for years. Due to repeated situations that have brought stress, I tend to feel stress under the slightest strain now. My brain tends to go towards those thought patterns.

Sometimes, stress is brought on by behavioral issues. I get stressed when my daughter sits and refuses to move. This may occur because she is mad or because she doesn't want to do something. Her simple act of refusing to move is powerful, and I struggle to rectify it. It can be stressful, especially if she is refusing to go into a building for a necessary appointment.

Other times, stress is brought on by the anticipation of my daughter's behaviors. In 13 years, I have a pretty good idea of what triggers her behaviors. Changes in our routine, lack of sleep, and situations that are physically demanding may all result in a behavior from her. I find myself getting stressed before certain events or activities because I fear the behavior that I have convinced myself will come.

Stress is a constant companion when joy is not the main feeling.

Anxiety, the unwanted guest
Like stress, anxiety took root in my life from many medical emergencies and health issues. When I am anxious, my mind finds numerous reasons why I should be stressed, worried, or tense. Sometimes, the anxiety seems "reasonable." For example, if Jaycee starts to come down with a cold, it may seem natural for me to worry about her going into the hospital. After an illness, it takes weeks for my mind and body to calm down from everything that transpired. Other times, I am anxious when there's no apparent reason for it, much to my frustration.

The worst part about anxiety is the havoc it takes on my body. My muscles get tense and ache in pain. I find it impossible to relax. I may fidget and stay busy needlessly. I hate anxiety, yet it's a real feeling I have too often. I am working to rid myself of it, slowly but surely.

Anger- Is that allowed?
I must confess that anger is an emotion I feel at times. Most of the time, I am not angry at anyone in particular but simply the reality of our situation. I get angry that our money goes to medical bills. I feel mad when we can't do the things we want to do because of my daughter's medical or developmental limitations. I feel frustrated when my daughter won't listen. I get agitated when I have to call about the same insurance coverage problem multiple times. Anger also happens when I wait and wait (and wait) for a doctor's office to call me back with results of a test or a promised plan of care. Fortunately, my anger subsides fairly quickly, and I can think with a level head again.

This life can be lonely. There aren't many people that can relate to what I have been going through. There are families with Down syndrome for me to connect with, but few have had the medical problems we have faced. We are in a unique situation, and sometimes it can feel isolating. It's worse when Jaycee is sick or recovering from a sickness, because we are usually homebound for weeks. I may not have any real interactions with people for days at a time. Her care consumes my nights and days, and it causes me to feel like my world is only as big as our house. Loneliness isn't something I feel often, but it pops up during trying times.

Friend, are you still here sitting on the couch with me? Are you willing to hear these things that aren't so pleasant? I hope you don't think I'm sitting in the pit of despair. I'm a woman who is joyful often, but life brings circumstances that challenge that joy. I am fairly good at recognizing emotions that aren't helpful, and I'm trying to work through the harder stuff. Can you be there for me when I'm not the happiest person in the room? I hope you can be. I need that more than you may realize.
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Tuesday, August 13, 2019

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:
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.
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