Perspective: Height

Since I have been a child, I have always been tall. People constantly assumed I was older than what I was. When my parents would ask for the children’s menu or the kid’s entrance price, the employee would sneer at them and claim I was too old, even though I was only 5 or 6 years old. When I was 8 years old, I went trick or treating with my friend. Neighbor after neighbor told me I was too old for this event. Really? Eight years old was too old? But no one ever believed me when I told them my age.

After becoming severely sick many years ago, I needed to use a wheelchair for mobility. Suddenly, I appeared short. Instantly, people guessed I was much, MUCH younger than what I was. When I was approaching my 29th Birthday, a woman stopped me after I exited the car and told me I was too young to drive. She thought I was 15 years old! There have been many other instances such as this. A few months ago, a nurse thought I was 17 years younger than what I am. It simply amazes me that a person’s height has so much influence on people’s perception of age.

There is a different side to height as well. Tall people are often assumed to be more knowledgeable than short people. Before needing a wheelchair, strangers assumed I was in a management position at my job. If a dispute arose, customers would often seek me out because I looked like I was the person in charge. (The true leadership was significantly shorter than I. Even though their name badge indicated their position of authority, people would still come to me for assistance.)

Once I started using a wheelchair, I instantly found people guessed I had low level intelligence. Strangers would talk to me like I was a three year old. They would use exaggerated hand gestures and overly cheerful expressions. “Oh, isn’t it such a wonderful day. And YOU! You are so wonderful and special too!” It often is annoying, but I have learned to just smile and reply, “Yes, it certainly is a lovely day.”

The most amusing part about using a wheelchair is seeing people’s expressions when I stand up. Quickly, my appearance changes from one of being short into one of being tall. Often the person witnessing this metamorphosis stares at me in shock and awe. The person usually mutters, “WOW! You are so tall!” (When I was a very young child, I had a step stool I used to reach the bathroom faucet. It read, “Step up to be tall. Sit down to be small.” This phrase usually runs through my mind during times like this.)

For what it is worth, it is a blessing to be tall and use a wheelchair. Few people have the opportunity to view the world from both perspectives and know a person’s height has nothing to do with his age or level of knowledge.

Brave

For the last two years, a small boy has been fighting cancer. Many say the young child has courage and exhibits bravery. By his side, through the countless hospitalizations, therapies, blood draws, nuclear scans, doctor's appointments, etc., a stoic mother bravely holds her son. Her heart swells when given good news. "Your child is NED (no evidence of disease)!" She dances. She sings. She celebrates. When the nuclear scans show the return of the cancer, her heart breaks. She cries. She prays. She hugs her son.

As I watch this mother ride the highs and lows of having a loved one sick, I realize she is the one who is brave. She is the one who has courage. When her world is falling apart, she still has to push through to get her son to his medical appointments. She has to comfort her child when he is in pain. She has to endure not only her own emotions, but she must continue being a mother.

I have watched many of my friends fight their battles with various medical conditions. I know from my own experience, it is a struggle to go through so many tests and procedures. However, the patient is often lucky. When undergoing surgery, anesthesia allows the patient to slip off to sleep while the minutes or hours tick by. The family member(s) standing by in the waiting room must live through the experience in real time. If there is a complication or the procedure takes longer than expected, it is their hearts and minds which must struggle to find composure. They are the ones who must find strength to idly sit by.

When the patient recovers from an illness or surgery, the family members are the ones who often have to find the time and energy to encourage, assist and support the patient. Although recovery is not a walk in the park, I often feel it is much easier than trying to live one's own life and also have to take care of another person.

So, as my sweet little friend Lincoln has left this world to enter eternity, I think about his mother. I think about his father. They must continue forth in this world without their firstborn son. They must continue being husband and wife. They must continue being a parent to their son, Bridger.

When I think about those who are brave, I think about all the family members who assist their loved ones through various trials in life. May we celebrate and strengthen each other as we support one another in kindness and love.

"Be strong and let your heart take courage, all you who hope in the LORD." (Psalm 31:24)

From surrounded by sewage to singing hallelujah, what a joyful miracle!!!

I often tease my parents, "When the cats are away, the house falls apart." It seems every time my parents go away on a trip something happens to our house. Examples include the dishwasher breaking and leaking water all over the kitchen, ants invading our house, the garage door malfunctioning, a swarm of thousands of bees taking up residence in our home, etc., etc. My parents often deny anything out of the ordinary happens whilst they see the world. I, however, beg to differ.

On Sunday, I notice my toilet is making odd sounds every time I flush it. Sunday evening, after I flush it, I suddenly hear a LOUD explosion! (Thankfully, I had just used the toilet, or I am pretty sure I would have had an accident!) I open up the toilet lid and see the toilet did not flush. I retrieve the plunger and start plunging away. Nothing seems to happen. I look over to my shower, and to my horror, sewage is bubbling up from the drain! There is about 2 inches of murky water covering my shower floor. I am concerned at this point. But, not knowing what else to do, I leave the bathroom. A half hour later, I return to the bathroom. There is still sewage in the shower, and now there is water leaking from the base of my toilet and is all over my bathroom floor! I grab a mop and bucket and start mopping up the water.

When the urge next arises, I decide to use my parents' bathroom. Thankfully, that toilet flushes. It appears that sewage is not backing up into my bathroom. However, I still use their bathroom sparingly as I do not want anything to add to the sewage mess in my bathroom. The sewage from the rest of the house seems to be draining directly into my bathroom. Any time I use the kitchen sink, all that water finds its way to my shower floor.

Henceforth, I cannot use the dishwasher. I cannot use the clothes washer. I cannot rinse any dishes. I cannot dump anything down any of the sinks. Additionally, the sewage is really smelling up my bathroom...and the bathroom is adjacent to my room. I have to keep the bathroom door closed and run the exhaust fan in an attempt to keep the sewage smell from entering my room.

I reuse dishes and try to keep my clothes clean to avoid accumulating laundry. My dad said he will look at the problem when he returns from his trip...he will be home the end of September.

I try to keep a positive attitude and try to stay on top of the cleanup from the water which seems to constantly be leaking from my toilet. I use an empty 32 ounce yogurt container to scoop water out of my shower and into a bucket to prevent the sewage from breaching the shower and cascading on to my bathroom floor. Between mopping the floor and collecting water from my shower, I haul about 100 gallons of sewage out of the house and dump it into the grass. My arms ache, and my hands are red and blistered.

Almost exactly 72 hours after the sewage pipe clogs, it instantly opens up again! I am in the bathroom scooping out water from the shower into a bucket. Suddenly, I hear the toilet make an add sound and then it flushes. I then look to my shower. Immediately, the sewage makes a mad dash for the shower drain. In about 10 seconds, my shower is sewage free! I am in disbelief! I am trying to send praises up to God, but my shock from the entire situation leaves my brain in a jumbled mess. I reach over to turn on the shower. I watch with glee as the water flows freely down the drain. Next, I flush the toilet. I have NEVER been so thrilled to watch toilet bowl water effortless leave my toilet and clean water instantly reappear.

My friends, I do not know if any of y'all have ever had sewage issues in your life, but for me, this experience makes me extremely grateful I live in this country at this time in history. What a glorious invention indoor plumbing is. What a kind, caring and merciful God we serve!

"Shout joyfully to the LORD, all the earth.
Serve the LORD with gladness;
Come before Him with joyful singing.
Know that the LORD Himself is God;
It is He who has made us, and not we ourselves;
We are His people and the sheep of His pasture.
Enter His gates with thanksgiving
And His courts with praise.
Give thanks to Him, bless His name.
For the LORD is good;
His lovingkindness is everlasting
And His faithfulness to all generations."
(Psalm 100)

Mitochondrial Disease Awareness

What are mitochondria?

Mitochondria are tiny powerhouses located in every cell in the body except red blood cells. They are responsible for producing approximately 90% of the energy needed to sustain life. Mitochondria are unique. They have their own DNA. Unlike regular DNA which is inherited from the mother and father, mitochondrial DNA is only inherited from the mother.

Many believe since mitochondria make their own DNA, it is only the mitochondrion's DNA which creates disease. This is not true. It takes about 3,000 genes to make a mitochondrion. Only 37 of those genes are encoded by the mitochondrion's DNA. The other genes needed to make a mitochondrion are encoded for by the cell's nucleus and exported to the mitochondria. Thus, mutations in either the cell's DNA (inherited from the mother and father) or the mitochondrion's DNA (inherited only from the mother) can cause mitochondrial disease. Thus, Mitochondrial Disease can be passed down from one's mother, father or both parents.

What is Mitochondrial Disease?
When mitochondria begin to fail, the body does its best to conserve energy. High energy demanding organs such as the brain, gastrointestinal tract, heart and muscles are the most affected systems. Symptoms arising from decreased energy to these organs include seizures, strokes, heart arrhythmias, an inability to properly digest food, difficulty walking, etc. As more and more mitochondria fail to produce energy, symptoms increase in severity. If enough mitochondria fail in one organ system, organ failure can occur.


Mitochondrial Disease is extremely difficult to diagnose since it presents differently in every person. People with the same gene mutations may vary from having no symptoms to being bed ridden and on life support. Mitochondrial Disease is often suspected when three or more organ systems are involved.

Mitochondrial Disease is not one specific condition. Rather, it is a general term applied to thousands of various medical illnesses. Some of the specific illnesses have names such as MELAS (myopathy, encephalopathy, lactic acidosis and stroke-like episodes), CPEO (chronic progressive external ophthalmoplegia), Leigh's Disease, etc. Other conditions are extremely rare and have no names. They are simply referred to by the genetic mutation which causes the disease.

Mitochondrial Disease Facts
Mitochondrial Disease is a chronic (long-lasting) and progressive disease. There are no cures for this illness. There are supplements such as carnitine, Co-Q 10, vitamins, minerals and herbs which help support the body. However, there is nothing which can prevent the progression of the disease.

Approximately one in 5,000 people have a Mitochondrial Disease.

Every year, more children die from Mitochondrial Disease than from all childhood cancers combined.

Although Mitochondrial Disease is most often seen in children, adult onset is becoming more and more common. This is partly due to the increased awareness about Mitochondrial Disease. Many adults in the past, who have had non-specific symptoms affecting multiple organ systems, were often told they were making up their condition or were simply cast off into other generalized conditions such as chronic fatigue syndrome and fibromyalgia. As more and more in the medical community are recognizing Mitochondrial Disease as a medical condition (and the internet makes it possible for patients to do their own research), Mitochondrial Disease is being diagnosed more frequently in the adult population.

The Future
Although there are no cures for Mitochondrial Disease, the future does look promising. Children and adults are being diagnosed sooner with Mitochondrial Disease which means symptoms can be detected and treated faster. Supplements have made a huge improvement in slowing the progression for many folks with Mitochondrial Disease. Also, advances in other areas of medicine such as portable home ventilators, home IV fluids, IV nutrition (TPN), feeding tubes, etc., have made it possible for many with Mitochondrial Disease to continue living.

Will there ever be a cure? Only God knows. Until then, may we raise awareness, support one another and try our hardest to make each day our best day yet.

When the great outdoors comes inside

Over the last couple years, I have had some interesting encounters with wildlife--all of the experieicnes were outside. So whenever I was indoors, I always felt safe and secure.

A few days ago, I noticed in my shower an odd design in the wall tile I had never seen before. Curious, I entered the shower to take a closer look. I was surprised to see the "design" was actually a small lizard. It had changed colors to blend in with the tile color. I decided to leave the lizard alone. If I disturbed it, it might flee into the rest of the house. I saw the lizard one more time, and then it disappeared. I assumed it must have gone down the shower drain.

Last night, as I was preparing to go to bed, I see the small lizard scurry from my bedroom door and hide behind my bed. I was impressed the lizard was still around and was still alive. For the rest of the night, I was mindful to look on the floor when I moved around to make sure I did not squish the lizard. I fell asleep and forgot about my little reptile friend.

Today, my airways are congested. This often happens when too much dust accumulates in my room. So, it was off to get a wet mop. I shove the mop several times under my bed in an attempt to get some of the floor dust without moving my bed. I pull the mop out from under the bed. I notice something purple about an inch long. It looks like a piece of shredded cabbage. I think it is odd as I have not eaten cabbage in a very long time. I take a closer look. I then realize it is my little lizard friend, but he is now dead and has turned purple in color! The shock overwhelms me! I scream and flee my room.

Upon hearing my screams, my mom meets me in the kitchen. "Do you find it?" I am surprised my mom remembered me telling her about the lizard several days ago. I am also annoyed that she remembered him, but I had completely forgotten about the creature. "Yes," I tell her. "It is dead. I found it when pulling my mop out from underneath my bed."

I grab a hand broom and dust pan. I swept up my dead house guest and dispose of him in the trash. My mom mocks me that the reptile is small, only about an inch long. I respond, "Yes, but when you are not expecting to find it, and find it dead, it is quite shocking!"

Now, I have a little bit of peace knowing the small critter is no longer in the house. But I am also a little bit on edge. Wildlife is wonderful to observe, but it needs to stay outside, in the great outdoors and away from my room.

Loving Lincoln, praying for comfort

There is a beautiful little boy screaming in pain. His parents hold him tight, fighting back their own tears. 

On Tuesday, September 3, Lincoln celebrated his fifth birthday, a milestone his parents thought he would never enjoy.

For nearly two years, Lincoln has fought neuroblastoma, a childhood cancer which usually is found in the adrenal glands. It spreads rapidly and is very difficult to treat. Twice Lincoln was told he was NED (no evidence of disease) only to have the cancer return. His parents have searched to the end of the world trying numerous therapies and treatments in hopes of fighting the cancer. On August 15, Lincoln underwent a scan which assured his parents the cancer was gone. They went home to enjoy the summer.


On Wednesday, September 4, twenty four hours after his fifth birthday, Lincoln began having dizzy spells. His oncologist was contacted. The family packed up on Thursday, September 5 for another 500 mile trip to see Lincoln’s medical team. When the family arrived at the medical center on Friday, September 6, they went straight to the emergency department. Since it was the weekend, Lincoln was slated to have an MRI on Monday, September 9. As the minutes and hours passed, Lincoln continually declined. Nausea, vomiting, dizziness, headaches, etc. all worsened in severity and intensity. During this time, the family kept praying maybe it was just a reaction to one of Lincoln’s medicines. Maybe there was just something minor wrong.

After having the MRI completed on Monday, September 9, the family received the news. Lincoln had leptomeningeal disease. Lincoln had lessons all down his spinal cord and throughout his brain. (In 5% of all cancers, the disease will spread to the membranes (meninges) surrounding the brain and spinal cord. This is called leptomeningeal disease. There is no cure. It is a terminal diagnosis.) Lincoln’s oncologist said at best, he had a few days to life. The family is making last minute arrangements and is trying to make it home before God calls Lincoln to heaven.

Please, pray for this family. They could use your prayers to help get them through this tremendously difficult time. Please especially for Lincoln’s pain. He is in an incredible amount of pain.

Showers of Blessing

Nine weeks ago, it was time to order a new tracheotomy tube. It is not a long process. I notify my respiratory therapist, and she submits a request to the durable medical equipment (DME) office. They find my tracheotomy tube in the warehouse and send it to my house. The process takes about a week to complete. This time, though, it was a little bit more complicated.

When I first got my tracheotomy in 2017, I had severe reactions to the two most commonly used tracheostomy tubes. The one is made with silicone; the other is made with polyvinyl chloride. After searching the internet, I stumbled upon a tracheotomy tube which was made from polyurethane. I ordered it, and to my delight, I did not have an allergic reaction to the tracheotomy tube. From that moment forward, I started using the polyurethane tracheotomy tube.

However, there was hitch. This is not a commonly used tracheotomy tube. Henceforth, my DME has to special order the tube. This was not a big deal as they would keep one in stock for me. When I requested a new tracheotomy tube, the DME would subsequently place an order from their supplier for another tracheotomy tube. This is how it should happen, but this time, it was not so smooth.

After requesting my tracheotomy tube, I waited and waited. It took my respiratory therapist eight days to submit my request to the DME company. Unfortunately, the last time I received my tracheotomy tube, no one reorder another tube. So, the DME company had to ordered a tube from their supplier. To my heartbreak, the tracheotomy tube was back ordered. Weeks and weeks rolled by. No tracheotomy tube. After waiting eight weeks, I was informed the tracheotomy tube was being sent from the supplier to the DME company. Then, the DME just had to send it to me. It was almost here!!!

(The downside to having to wait for such a long time is my insurance only covers a new tracheotomy tube once every three months. (Two months had passed since I was first eligible to receive a new tracheotomy tube.) A few days after submitting my request for a new tube, the tracheotomy tube I was using failed. I had to resort to using my backup. Now, my backup was near the end of its usable life—they only last about three months. I was very stressed out. It is not good to not have a backup tracheotomy tube. They can fail at any time.)

I was notified of the shipping information for my package. I was excited. It would arrive the next day! I waited and waited the following day, but the parcel never arrived. I checked online. The box was sitting in a distribution center. It remained there for four days. Finally, it found its way out of the facility and in to a truck.

After waiting NINE weeks, I received the parcel. I ripped open the box. Inside, there was a receipt stating I was billed for one tracheotomy tube. I discarded all the packing material, and there were TWO tracheotomy tubes in the box! I was in disbelief! The receipt only says I was to receive ONE tube...but there are TWO tubes in the box!



I began praising God. “Oh what showers of blessing You have bestowed upon me. Now I am not without a backup tracheotomy tube! Hallelujah!”

“And I will make them and the places around My hill a blessing; and I will cause the shower to come down in his season; there shall be showers of blessing.” (Ezekiel 34:26)

Wake me up when September ends

Since I have been a child, September has always been my least favorite month of the year. Everything changes in September. Labor Day signals the end of summer. The decreased length of sunlight can be felt in the shorter days and the cooler temperatures. Children go back to school. Crops become ready for harvesting. The fields are soon empty. The leaves on the trees turn various colors. And my wardrobe changes from short sleeved shirts to long sleeved shirts and sweaters.

Additionally, September signals the start of a new medical cycle. During the summer, many medical professionals have vacation, which translates into many appointments being cancelled or deferred until fall. My September is quickly filling up with too many appointments. I feel the burden of trying to juggle my health with my sanity. I want to have some health issues resolved; yet, at the same time, I cannot tolerate more than one appointment a week. I simply do not have the energy or patience to endure multiple days at the clinic or medical center. Moreover, the energy expended during these appointments completely drains me. I struggle for many days to regain my strength.

I am trying to remain calm as September begins. But like I always felt as a child, I want to sleep through this month. October. That is a great month! Everything seems to slow down in October, and a routine is established. So like the Green Day song says, Wake me up when September ends...