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! 

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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!

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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! 

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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.  
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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? 
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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. 

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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!
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