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. 
submit to reddit

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. 
submit to reddit

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.

Loneliness
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.
submit to reddit

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.
submit to reddit

Monday, July 15, 2019

Preparing your Child with Special Needs for Medical Procedures

In a few weeks, my daughter will be having a series of tests completed at a hospital. The thought of those procedures gives me anxiety and stress. I know how difficult some of these things will be for Jaycee. I dread them, but they are necessary. One way to manage all that negativity is preparation.

Besides packing for the hospital, I will be trying to help Jaycee understand what will be happening. She has a long history with hospitals, which is sometimes a hindrance and other times a help. Jaycee has an Intellectual Disability and is minimally verbal, so visual aides, repetition, and simple explanations are all important.

Over the years, I have figured out how to best prepare her beforehand and how to best support her during the event. Here are some tools I use:

Videos/Pictures
I love YouTube. Every time I have went to YouTube searching for a video for Jaycee, I have found it. Jaycee connects to videos well, so they are the best way for me to explain procedures we don't do often like CT scans.

The key to using videos as a tool is watch them with your child, narrate what is happening in them, and watch them more than once. Videos are good because they help Jaycee anticipate what will happen and help teach her new vocabulary.

Whenever I can, I try to take a picture of Jaycee in a procedure to use later as a reference. For example, I have pictures of Jaycee during her sleep studies because I know she will have to have it again. I then use that picture to remind her of what will occur the next time she has one. I have similar pictures of her during a CT scan. I can't take pictures of every procedure because it isn't proper or I'm focused on her care, but they are helpful to have as a reminder for her.

Picture Sequence Cards

I have made a few picture sequence cards like this one to help Jaycee with familiar situations that cause her angst. Blood work and IVs are horrible experiences for everyone involved. As soon as Jaycee sees a tourniquet, she starts to panic and reacts defensively. Before she starts to get upset, I try to pull out this sequence card in order to show her what will happen. I have other sequence cards for suctioning and diaper changes, which are things she only deals with while hospitalized. I keep these cards in my purse, so I have them when she needs them. 


Pain Cards

I made these cards for Jaycee, because there was a time when she panicked over every procedure. X-rays, for example, are pain free, but Jaycee couldn't be convinced otherwise for a time. She fought everything due to her anxiety of the unknown, and it was exhausting for both of us. I used these pain cards in different situations so that she could begin to understand that not everything in the hospital is painful. After a few years, Jaycee responded better, and I only pull these cards out now in extreme circumstances.

Doll Demonstrations
Occasionally, we have used dolls to help Jaycee understand what is going to happen. We purchased a hospital gown for her American Girl doll, and I created a hospital wristband for her doll. We have changed her doll into these items prior to Jaycee's planned hospital admissions. Jaycee understands the connection. Jaycee is often reluctant to wear a hospital gown because it means she won't be going home immediately. Therefore, we try to convince her to put one on to be like her doll.

Sometimes, hospital staff have used teddy bears to demonstrate wearing oxygen or IV insertions. This technique has not been helpful for Jaycee, especially when they attempt them on her own dolls. Jaycee has gotten upset during these demonstrations. I do believe part of her reactions are because she understands what they are telling her and isn't happy about it.


These are the ways I have helped Jaycee prepare for hospital procedures. With medical testing coming up, I will be going over some of these things again. Let's pray they work, and things go smoothly!
submit to reddit

Monday, July 8, 2019

3 Keys for Public Outings: Special Needs Edition

The thought of a public outing can create all sorts of thoughts and feelings for moms of children with special needs. Even though it may be challenging, leaving the house is a necessity in life. Moms take their kids to the grocery store, doctor's appointments, playgrounds, and restaurants. These outings may take extra planning when your child has special needs.

I have parented a child with special and medical needs for 13 years. We have learned many lessons together in that time. I'm still learning on how to support my child in public outings even now.

Last week, I took my daughter, Jaycee, to a water park. She wanted to go there; it was her idea. A hot July day wasn't the best choice, but it was the only day my husband was off work. Before we left for the water park, I had a picture of how things would go. I didn't envision a perfect day, but I did expect to be there for 3 or 4 hours.

The first hour we were at the water park, things went well. We swam in the pool. The kids and I went down a water slide a couple of times. We floated around the lazy river. Jaycee splashed and laughed. My son, Elijah, was busy running from one area to another. Then, all of the fun suddenly stopped.

Jaycee walked from the lazy river to her next adventure at a snail's pace. Sensing something was wrong, I encouraged her to sit down and take a break. I offered her a cold drink, and she guzzled it. My husband and I took turns sitting with her for the next half hour. Seeing no progress was being made, we asked Jaycee if she wanted to go home. To which she responded with, "Yes!"

I wasn't ready to leave yet. We were only there for 1 1/2 hours, but 30 minutes of that was sitting with Jaycee in a chair.

As we left the water park, I was hit with a twinge of disappointment. I wish Jaycee didn't tire so easily. I wish the day could have been a little longer. I started to get worked up about the abrupt ending, and then I had to calm myself down. We did what we could. I had to be thankful that we had an hour of fun.

It got me thinking about how far we've come over the years. Jaycee has grown in her ability to handle different public situations. I have matured with my emotions and responses to my daughter. For that reason, I'm offering three keys to managing your child with special needs in public outings.

1. Lower your expectations. 
Lowering your expectations may sound like you are preparing for only bad outcomes. That's not the case. If you have a glowing idea of what may happen when you take your child with special needs somewhere for the first time, you may be disappointed and miss some positives that occurred.

When Jaycee was 5 years old, we decided to take her to the movie theater to watch "Winnie the Pooh." She loved Pooh bear and movies in general, so I thought it would go well. I pictured her sitting in the seat and being elated when her lovable, yellow bear appeared on the big screen. When the lights went down, Jaycee got scared and dropped to the floor. She sat there for the duration of the hour long movie. She never saw any of it. My son, who was only 2 at the time, laughed and watched in delight.

On subsequent visits to the theater, my goal for Jaycee was to sit in the seat for any amount of time. We didn't see movies often, so it took her 4 years to watch a movie from beginning to end. "Cinderella" was the first movie she watched, but she spent the previews sitting on the floor. Now, Jaycee sits in her seat the entire time holding her popcorn and soda like a champ. It didn't happen overnight. I had to have patience and not take her reactions personally, since I was the one planning our outings.

2. Respect your child's limitations.
When deciding on what public outings to attend with your child, you always want to consider your child's limitations. There are some things that I know will be hard for Jaycee. Any outdoor activity with heat means Jaycee's endurance will be short even now at age 13. When she was younger, I had to learn what bothered her, which was frequently discovered through trial and error.

When Jaycee was 3 years old, I took her to a Wiggles concert. She loved the Wiggles, and I was looking forward to a fun outing with my little girl. I purchased seats in the back, because I was unsure of how she would react. I fully expected her to be happy. When the lights went dark, Jaycee started crying. It was unusual for her to cry, and I couldn't calm her down. I tried pointing out Wags the dog and Greg Wiggle to help her recognize what was happening. I eventually had to leave and walk the hall with her. When she calmed down, she immediately fell asleep. My mom and I sat through a Wiggles concert; Jaycee woke up for the final few minutes.

The concert didn't go as planned, and I didn't try to go to another one for a long time. Dark, loud, and unfamiliar places confused Jaycee. For the most part, I tried to avoid these, because entertainment situations weren't that important. It wasn't worth her tears and confusion. She needed time to mature, and I respected her limitations.

Jaycee currently gets very stressed on days we have doctor's appointments. I know it's not a good idea to add anything fun before or after those appointments or she will understandably have behaviors. I respect those limits when possible.

Sometimes, you can't respect limitations because real life requires your child to cope. When Jaycee was growing up, I planned outings to restaurants and stores. Restaurants weren't too bad for Jaycee unless something inside was different, changing her routine. Stores were a real struggle. She wanted to run off and didn't understand dangers in parking lots. It took much mental effort for me to keep Jaycee safe. I couldn't avoid these situations because they were a regular part of life. While I understood that Jaycee struggled in these situations, I needed to push her to learn how to behave properly. On weekends when my husband was home, we intentionally went places to practice walking in a store, staying with a parent, and safely entering/exiting a vehicle. It took years (literally) of practice and patience for stores to be an enjoyable experience for both of us.

3. Celebrate the small victories. 
In all of the unexpected difficulties with your child, it's important to recognize and celebrate any victories. Your victories will probably be small steps in the right direction instead of huge accomplishments. It's important to reflect on how far your child has come and maintain your patience for what is still ahead.


I hope these three keys will help you gain a healthy perspective when taking your child in public outings. As a parent, we can't control our child's responses to different environments and situations. We can only help them through it, teach them when appropriate, and respect what they can't do right now.
submit to reddit

Tuesday, June 25, 2019

Incontinence Products for Older Children

Incontinence can be an issue for many children for a number of reasons. Developmental delays or intellectual disabilities may result in a child being potty trained later than expected. Medical problems such as constipation, food allergies, obstructive sleep apnea, or other digestive issues could further complicate bladder and bowel control.

There are many products available to help with incontinence. Several items are available through the Home Delivery Incontinent Supplies website, including the ones discussed below.

First, let's talk diapers.
Everyone mother knows the diapering options for babies and toddlers. After the size 6 diapers or pull ups available in most chain stores get snug, the next option may be lesser known. Welcome to the world of "adult" diapers. The hip size or the person's weight determines sizing for these diapers. There are "extra small" options, so you can most likely find the size you need. You can find these in the adult diapering section of stores or look online for a wider variety of options. Depending on your health insurance coverage, you may be able to get diapers covered for your child if they meet certain requirements.

Now, let's talk wipes. Baby wipes are useful no matter how old your child is. Sometimes, you may need something a bit bigger though.
Reassure makes personal cleansing washcloths that require no rinsing. They are about twice the size of a regular wipe. They are durable for situations that require extensive cleaning. Personally, I keep some of these in my purse for when my daughter is in the hospital, which often results in different toiletry needs than at home.

Finally, let's discuss underpads. Underpads are a must if night wetting is an issue. A disposable underpad is a great option for a few reasons. If there's a mess, you can simply throw it away and be done with it. If you are traveling, the disposable pads are perfect because they are thin, lightweight, and disposable.

Disposable pads are often secured with a sticky strip or sticky area underneath. The cheaper ones tend to provide less of a sticky strip, which means they don't stay put if there's a lot of movement. If your child tosses and turns all night, then the disposable pads may end up in a wadded mess. If this has been a problem for you, you may want to consider washable underpads.


Washable underpads have the opposite pros and cons of the disposable ones. If there's a real mess, you have to clean the mess to reuse the pad. If you need them all the time, you will be lugging these on trips and possibly washing them when traveling. On the contrary, these will stay put and provide great protection. They are thick, durable, and won't slide around in a bed or chair. They are very absorbent and protect sheets and mattresses well. 

These are just three different products you may need if your child with a disability or medical issue has incontinence. There are many more products to meet your family's needs; you just have to know where to look. Hopefully, I have pointed you in the right direction. 
submit to reddit

Monday, June 10, 2019

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.
submit to reddit

Monday, June 3, 2019

A Special Hope

On Saturday, an interview I did with Sarah from a Special Hope Podcast went live. We had a great conversation about my life, parenting children with special needs, caring for a child who is medically complex, faith, and things that go wrong when shopping at Kroger. There were serious moments and funny ones.


You can listen to the podcast by clicking this link.

You can also do what I do and listen to it on your Apple iphone's podcast app. Search for "A Special Hope" and look for episode 9.



All of the show notes and additional podcast information are here.


submit to reddit

Tuesday, May 21, 2019

What I Learned from a Fall Down the Stairs

It was a typical Saturday morning. I was attacking the laundry pile, planning for the upcoming week, and completing housework. I recruited my children to help with the polishing in the bathroom. Jaycee dusted the doors. Elijah wiped down the baseboards. I worked on the wooden vanity. When we were done, the children were released to do whatever they wanted. They both ran to their electronic devices. Elijah started watching videos in his room. Jaycee sat in her spot on the couch to start a marathon of YouTube videos.

I gathered up a few more items I needed to take down to the washing machine located in the basement. Unbeknownst to me, my socks had collected the furniture polish that had settled on the bathroom linoleum floor. As soon as my foot hit the first wooden step, I was doomed.

I bounced and fell down the entire flight of stairs. My feet, left arm, and hips took hit after hit as I descended rapidly. I yelled, "Ow," several times on the way down. In an instant, it was over. I remained at the bottom where I landed trying to check my body and recover from the shock.

Stock photo-not the actual stairs that injured me

Within 30 seconds, my daughter made her way to the top of the stairs. She was still holding her beloved iPad as she asked in her broken speech, "Mom, you ok?" 

"No," I replied trying not to cry. My arm was throbbing. 

Jaycee dashed away from the steps out of my sight, but I could hear what she did next. She ran to her brother's room and cried, "Bubba, Momma!" She repeated herself a few times on the verge of tears. 

Elijah finally yelled out, "Mom, what's Jaycee saying?"

I couldn't respond to him. Yelling from the basement wasn't possible with my pounding head. Soon, he asked Jaycee to show him, and Jaycee led him to the stairs where my laundry was scattered about just above where I was. 

Thankfully, I was merely sore for a few days and acquired some large bruises, but there was no major injury. I rarely find myself in a situation where I am in need of rescuing, but I did need help that ordinary day. 

I was so proud of my daughter. She heard the fall. She checked on me. She got help. She did everything correctly. Despite having Down syndrome, an Intellectual Disability, and limited verbal speech, my daughter was able to assist me. Even though I wished my slick socks hadn't led to a terrible fall, I'm glad I discovered what my daughter could do. 

On that day, she was my hero! 

submit to reddit

Tuesday, May 14, 2019

Special Needs Tip: Reasons to Visit Holiday World

Nestled in a quiet, little town of Santa Claus, Indiana is the friendly and impressive theme park, Holiday World. With summer vacations on the horizon, this is a place you need to try to take your family, especially if you have a member with special needs.

I live roughly two hours away from Holiday World, so I had a few visits there during my childhood. I have fond memories of riding roller coasters and eating snacks. (You always do them in that order.)  Even though I had good experiences there, I was reluctant to take my children to Holiday World. My daughter, Jaycee, has Down syndrome, is minimally verbal, is not very tolerant of the heat, and has a complex medical history (two heart ablations, two open heart surgeries, multiple bouts of pneumonia requiring time in the Intensive Care Unit, etc.). I knew Jaycee's Intellectual Disability would make it difficult for her to understand how lines for the different rides work. Her stamina isn't the best either, and theme parks are usually exhausting even if a wheelchair is used. Frankly, it's hard to know how my child will respond in any new environment.

In 2015, my daughter was blessed to have been granted a wish through Make-A-Wish. During her wish trip in Florida, she was given a special pass that allowed free entry into other participating theme parks. Holiday World offered an unlimited number of free visits to our family for an entire year. They were beyond generous to me (and so many other families). Since we had nothing to lose, my husband and I took our children to the park. To our surprise, we absolutely loved it! They had many features that were a good fit for our family. We went several times during our free entry period. We loved it so much that we ended up becoming season pass members in 2016 and 2017. Last year, Jaycee's health kept us at home a bit more but we managed to make a trip over.

If you have a loved one with special or medical needs, I would like to share with you why visiting Holiday World may be good for your family too.

Disability Boarding Pass 

The boarding pass allows a person with a disability and up to 3 other guests wait in line without actually waiting in line. Their pass works similar to other theme parks, if you have ever used them. To use the pass at Holiday World, you typically enter the ride's accessible entrance, which is usually the ride exit. The ride attendant will write down a time for you to come back on pass in order to board the ride. The time given is based upon the current wait time. You can only be "waiting in line" for one ride at a time, but you can use the restroom, grab a snack, or sit in the shade while waiting. This is how the pass works in order to ride the popular attractions such as the Mammoth, Crow's Nest, and all the coasters.

For some of the rides that tend to have shorter lines in general, the pass allows you to wait at the handicap entrance and board at an appropriate time depending on the line length (usually a few cycles) rather than getting a time and returning.

This pass has been helpful for my daughter because she can stay seated in her wheelchair while waiting. Generally, the wheelchair will not fit through the railed waiting line that everyone else uses, and standing for 20 minutes in the heat can wear her out. We try to go to Holiday World during the week when crowds are smaller, so waits are typically short. However, the boarding pass helps Jaycee do more than she would otherwise be able to do.

The Calming Room 

Like many other venues, Holiday World has a calming room for individuals who may need a quiet and relaxing break from all the fun activity at the park. We have not used the room, but it may be a benefit for other families.

Air conditioned Restaurants

Because my daughter doesn't do well in the heat for hours, we try to dine at restaurants with air conditioning to allow her time to cool down. Plymouth Rock Café and Santa's Merry Marketplace are two places that have a large amount of seating indoors.

Accessible Water Rides

Holiday World has a superb water park called Splashin' Safari. Splashin' Safari is quite large, so we have to use Jaycee's wheelchair when walking to our desired attractions. Fortunately, Jaycee's wheelchair has material that dries quickly, so this is an option for us.

Water slides and water parks generally mean long lines and lots of stairs. The fun, long slides have flights and flights of stairs. Jaycee can maybe do one of these before tiring out. The fewer the steps, the better for her. There are some slides that have a short flight of steps, so this is a better option for her. There are two different wave pools, which of course has no steps and is accessed easily. There are a couple of areas with small water slides meant for younger children that are accessed by a ramp as opposed to stairs. These are easier for Jaycee too.

The biggest selling point for us about Splashin' Safari is that the two best water rides are accessible! The Mammoth water coaster and the Wildebeest are both accessed by ramps, not steps. These are both popular rides, so the boarding pass is needed for these. We usually "wait" at the wave pool until her ride time occurs. Then, we are able to push her up to the ride entrance in her wheelchair. Jaycee loves these rides! She laughs and laughs while I tend to scream and scream on them. We love that these are accessible for her because her ability to access most of the other ones in the water park is limited by stairs.

Accessible Tree House 

Holiday World has an amazing Holidog's Tree House playground for children. The best part is that it is wheelchair accessible!


Other Stuff

Parking is free. Hooray!! There are plenty of handicapped spaces in both of their parking lots too.

If your child loves characters, you can find Santa in the Christmas area several times a day. There are a few different characters to meet at the park as well.

If your child likes mild rides, there are plenty of choices available for that need. Of course, there are plenty of thrill rides.


If you are looking for something to do with your child with special or medical needs, then I would suggest giving Holiday World a try. It's been a hit with our family!

submit to reddit

Monday, May 6, 2019

Book Giveaway

It is almost Mother's Day! In honor of that, I am giving away a copy of my book to one winner. The details of the giveaway and the ONLY way to enter is on my blog's Facebook page.  


Click this link to enter!!!


Hurry! The winner will be selected the evening of Sunday, May 12!! 

For a book description or ordering information, click here

Did you know that my book is in the Kindle Unlimited program? That means you can read it for free if you are a member! 




submit to reddit

Tuesday, April 30, 2019

Gaining 60 Pounds in 10 Years and Losing it in 7 Months

First off, don't worry. This blog is not becoming health and fitness focused. This is just one post about some changes in my life.

Let's go back 8 months ago before I started my diet. I was very overweight. I was a proven stress-eater and had multiple reasons to do such eating several times a year. There were times that I tried adding exercise into my routine as a way to help reduce my increasing waistline. Those exercise routines never lasted long. My medically complex daughter would end up getting sick, and I couldn't keep up with my healthy habits. When sickness occurs, I can barely take care of her and get the basic needs of the household completed. Exercise is on the back burner.

For years, I have worked through one health scare or diagnosis to another with only weeks or a few months between issues. Sometimes, I barely had time to catch my breath or really process what has happened before the next health issue arose. I've used caffeine to help me stay awake after doing round-the-clock medications. I used delicious food to give me something pleasant when my world was upsetting. I ordered take-out food when I didn't feel like cooking. I'm sure this may seem like a list of excuses, and they are, I suppose. However, I hope you can understand how I fell into poor patterns and had difficulty changing them.

In August 2018, I decided to start Keto. I am not a dietitian or Keto expert by any means. There are plenty of websites that can explain Keto much better than I, so check this out for more information. Basically, you teach your body to burn fats instead of carbohydrates by eating a low amount of carbs and increasing healthier fats such as butter or coconut oil. That means no bread, potatoes, rice, and sugar.

On Keto, I have tracked the fats, proteins, and carbs eaten daily using the Keto.app-Keto Diet Tracker on my phone. By scanning the bar code of a food or typing the food in manually, the app tracks everything. The app also helped me decide how much I should be eating based upon my height, weight, gender, and physical activity. When I started the diet, I tried to eat around 100 grams of protein and less than 25 net carbs a day. I never worried too much about my fat because I rarely used all my allowed fat grams in a day. As I have lost weight, my limits have been reduced. What I love about the app is that I can create a meal within it. I simply title the meal, scan the ingredients in as I make it, type in the number of servings, and the app gives me the macros for the meal. I would have been lost without this app! Here's a screenshot of the app before I have added food in for the day.

At first, the diet was extremely challenging. I discovered just how many foods had carbs in them. I could easily run out of carbs before my evening meal. Over time, I figured out what foods to eat and how to pace my carbs better.

I typically eat one egg and sausage or bacon for breakfast. For lunch, I eat almonds or macadamia nuts, an Atkins bar, and 2 ounces of low carb lunch meat. My lunches are usually eaten on the road while I am driving, so they are pretty boring. The evening meal is what I look forward to having. The main dish can be anything from a burger (no bread) or a pork chop to a special recipe I have gotten online such as chicken parmesan, pizza rolls, crack chicken, or keto lasagna (no noodles). Side dishes are usually green beans, broccoli, or zucchini, but I sometimes have a small amount of corn or peas. My favorite snacks have been Atkins bars, nuts, cheese, a few grapes, or a Keto dessert I have made.

Drinking water was hard for me. I hate plain water! I discovered Poweraid Zero, which I needed early on as I had the dreaded Keto flu and muscle cramps. I also found some low calorie, no carb crystal light packets which were quite tasty. During a hospital stay, I developed a taste for Pepsi zero and Coke zero. Prior to Keto, I was a soda and sweet tea addict, so these are healthier options.


I started this diet in August. I am a little embarrassed to tell you my weight and pant size before starting Keto. The picture above was taken a couple of months before I started the diet, so I'll let that give you an idea of the pre-Keto Evana. The one below is my current status.


By March, just 7 months into the diet, I met my goal weight. I lost 60 pounds. I cut my pant size in half. I reached a weight I had not been in 10 years. I did it with diet only. I have not exercised a day unless walking around Wal-Mart counts. I may decide to lose a few more pounds later, but I'm currently trying to maintain this weight. I thought it would take a couple of years to lose the weight, but I did it in 7 months! I am presently doing strict Keto during the week and having a few more carbs on the weekend.

Besides losing weight, I have had to re-train my mind during stressful events. Within the first month of the diet, my daughter got sick. While tending to her respiratory needs one day at home, I found myself craving Mexican food while stressed. I almost picked up the phone to place an order and have a complete cheat day. However, I recognized my brain was programmed to want food when stressed. I resisted. I had the same urges during Jaycee's 4 hospital admissions since starting this diet. To be honest, I did have a small food indulgence during some of the hospital admissions, but I stopped at a small indulgence and did not go full grease, fried, or sugar crazy. It's been challenging, and life hasn't always cooperated to make this super easy. 

I read a recent post by a fellow blogger Melanie Gomez called The Lie of Perfect Timing which discusses the myth of waiting to do something until the timing is perfect. It's true. There's never a perfect time to do major life changes, especially when you have a child with complex medical needs. I'm thankful I've found something that works and hope to keep this momentum going.  
submit to reddit

Monday, April 22, 2019

Where do I Fit in the Easter Story

Easter is a time of reflection in many ways. For me, the story of Easter has several powerful messages and examples of people who demonstrate great faith as well as crushing unbelief. 

Jesus is the focus of Easter. There is redemptive hope found in the actions of Jesus. He's the one who gave his life for all of us born into sin. Jesus embraced the call on his life. He died a gruesome death for the love of us. He is THE story.  

Then there's Peter. We all know what Peter did. Peter told Jesus he would follow him no matter what but ended up denying him three times, as predicted. Some can see how Peter caved under the pressure of the situation around him. Others wonder how Peter could deny Jesus after witnessing a multitude of miracles. Peter is a remarkable a figure and shows how diverse the reactions of the followers of Jesus were.  



Of course, we have to mention Judas being that he was one of the 12 disciples too. Judas saw the miracles of Jesus, yet evil entered his heart somehow. He turned Jesus over to his enemies for money after everything he saw Jesus accomplish. Judas is a reminder that being close to Jesus doesn't mean anything unless we fully commit our lives to him.

There's more pivotal people that are worth mentioning but for time's sake I will stop there.

As I was reviewing the story of Easter this year, I had to pause and wonder where I fit. Who am I most like in this story?

Then it became clear to me who I have been in the past. I have been chief among the mockers.

Scripture tells us that soldiers mocked Jesus by saying, "If you are the King of the Jews, save Yourself." (Luke 23 NKJV) Other people were recorded saying, "He saved others; let Him save Himself if He is the Christ, the chosen of God."

Those mocking Jesus couldn't understand what was happening. They couldn't comprehend Jesus choosing that path. Sometimes, God's intervention doesn't look like what we picture. God may not move how we anticipate.

When reflecting on Easter, I surmise that I would have been one of those people wondering if Jesus really was God's son, because he was enduring a horrible death. Surely God's goodness would spare his son the pain? Can God's love be found in the middle of such suffering? A grand display of power in the form of suddenly destroying those who were hurting Jesus would have been just as effective, right?

Yes, I would have been one of those hecklers. Perhaps, I would not have openly shouted something to the crowd, but I would have been thinking it. I know this because I have had those thoughts too many times in my life as a parent.

I have stood by my daughter's hospital bed and been bombarded with thoughts such as:
There's no way God could be with us. If God were here, my daughter wouldn't need all these machines and tubes to stay alive. God would spare my daughter of all of this. 

If God cared about my family, we wouldn't be dealing with this situation now. 

Surely all this suffering isn't part of God's plan.

I struggled for years to find God's mercy when my daughter's situation seemed mercilessness. Several surgeries, diagnoses, and health scares meant that I had every question and doubt possible enter my mind. I rarely voiced them aloud but my mind was full of them.

I'm not sure if those mocking Jesus ever realized how wrong they were. However, I realized how wrong I was.

I knew I needed a renewed mind when trying to find God in my daughter's medical situations. Of all the characters in my own storyline, the role of heckler is not doing any good. I need a voice of faith resounding through my situations. I need affirmations and reassurances. I don't need questions. I don't need to be my own worst enemy providing the mocking statements.

Thankfully, I have learned to recognize my doubts. God has given me the grace and ability to go through situations with my daughter without emotionally trying to figure out why they are happening.

As another Easter celebration passes, I thank God that I don't have to be a mocking unbeliever anymore. I know who God is. I know what His love looks like- even in the hospital. I know what His goodness looks like too- even if my daughter is deathly sick. What about you? 
submit to reddit

Tuesday, April 16, 2019

What Helped My Foul Mood

I was in a foul mood when I woke up.

After the morning rush of administering medications, making my son's lunch, and getting everyone dressed, we were ready to load into my van.

I told my daughter to sit in the back seat, but she ignored my words. She went straight to the front passenger seat. Jaycee can legally ride in the front. However, she demands I take objects like a cup or my phone without regard to the fact that I am occupied driving. I didn't want to be distracted today as we were driving two hours to the hospital for an appointment. Jaycee continued to make her way to the front and buckle up, not pausing at all when I told her to stop.

My voice had a sharpness to it when I told her that she needed to move again. I could see I wasn't going to win this argument with her already buckled up, so I resigned and let her stay. As I pulled out of the driveway to start our long day, I felt frazzled. My patience was thin, and it wasn't even 8 am.

Then, I recognized what was really happening.

The hospital brings out some ugly parts of me. I have associated the hospital with pain, fear, trauma, and emergencies. I have had good experiences with the medical profession but many negative ones. I have felt every emotion in a hospital.

When there's an ordinary appointment for Jaycee, my brain has a difficult time shutting off old negativities and emotions. Just thinking about going to the place filled with memories of surgeries, hospital admissions, and scares with my daughter puts me on edge.

I took a breath. I noticed the tension in my shoulders and arms. With great effort, I tried to relax them. I put on some music. I said an inner prayer and began the familiar route to the hospital.

Once there, Jaycee willingly exited the van, and I was relieved. Typically, she refuses to get out because she recognizes the hospital. Once we arrived at the parking garage elevators, she refused to board them and said, "Uh-uh." By the time a second elevator arrived, Jaycee was ready to board but then refused to leave it a few minutes later. The promise of lunch after we were done helped move her forward.

The meeting with the new specialist proved to be informative and helpful. But, there were the same old annoyances that come with any appointment. There was the handing over of the insurance cards and going over our demographics, even though I reviewed this information at this hospital two weeks prior. I dutifully provided Jaycee's list of medications for what must have been the 5,000th time in my life. These things must be done, but the repetition of it all can irritate me.

I was in a foul mood indeed.

We walked to a nearby restaurant for lunch between appointments. We have just recently started having some nice weather. It felt good to be outside without a jacket. I saw some flowers in a bed providing beautiful color to an area surrounded by grey buildings. I could have easily walked past those flowers because I was in the hospital area where nothing "good" could be appreciated. But, I stopped. I told Jaycee to look at the flowers.

"What's your favorite color? Yellow or red?" I asked.

Jaycee responded with sign/words, "Red. Like my shirt."

"I like the red ones too. Let's take a picture."

We snapped a few pictures, and I tried to snap out of my foul mood. When I am feeling discouraged and irritated with the medical situations in our life I can't control, I try to focus on the good. I made myself list some positives:

Jaycee is walking today! We normally would have had to use her wheelchair for all of this walking, but the progress she has made from outpatient physical therapy has done wonders. Jaycee is walking this distance to the restaurant! 

We have specialists available to see our child and help with her medical problems.

My van has faithfully made another trip to the hospital. 

I have the ability to pay for my daughter's medicines and supplies we'll be picking up later today. 


As long as I have been on this journey with my daughter, I still make mistakes. I let negativity get the best of me at times. I can get into foul moods even though I really know how blessed I am. I am human. That's the problem. I need to be more spirit-filled and allow God to work in me more.

I'll have another chance to get it right in a few weeks when we go back for another appointment. I will be sure to stop and smell the flowers again. 


submit to reddit

Tuesday, March 26, 2019

Just When Is God Good?

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

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



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

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

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

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

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

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

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

I hope you know it too!
submit to reddit

Thursday, March 21, 2019

How the Prayers for my Child with Down syndrome Have Changed

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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