9/11 Baby Christina-Taylor Green. A Life Bookended by Tragedy

Twenty-two years ago, tragedy struck the USA when the Twin Towers were struck by airplanes, and ultimately, the buildings collapsed. Far across the nation, in the state of Arizona, the Green family welcomed their newest addition into their lives: Christina-Taylor Green. In a day shrouded in grief, Christina was a ray of hope during such a dark time.

Christina grew up, loving softball. She was a very gifted athlete. She also had an affinity for politics. She saw her birthday of September 11, 2001, as a blessing. She wanted to inspire the nation.

On January 8, 2011, Christina and her neighbor attended a town hall event at a Safeway grocery store in Tucson, Arizona. Unfortunately, chaos soon erupted as a gunman shot 19 people. Six of those individuals did not survive. Nine year old Christina-Taylor Green was among the dead.

 

As we marked the anniversary of the fall of the Twin Towers, I cannot help but think of Christina. She would have turned 22 years old. What would her life have looked like? Would she have attended college? Would she have become a softball all-star?

We will never know.

May Christina-Taylor Green’s memory be a blessing.

Stolen in 30 Seconds

Recently, my dad drove to a large metropolitan area to have medical tests and appointments. I decided to not go with him as I am not feeling well.

My dad parked his car in the hotel parking lot. He last saw the vehicle at 10:30 p.m. At 7:30 a.m. the next morning, the rear of the car was damaged and the tail lights were gone. We were devastated.

My dad went to his appointments. That night, he was able to file a police report. There is a hotel surveillance video which most likely shows the crime, but the hotel was not cooperative. They refused to release the film. The police also asked for the security footage. I am not sure if they were able to obtain it from hotel management.

Today, my dad took the vehicle in to the dealership to get an estimate of the repairs. It is just under $5,000. I was flabbergasted!

I went online and researched the topic of stealing tail lights. It seems this is a new trend which is becoming very popular. The tail lights can be stolen in less than 30 seconds. It takes a few more seconds to damage the rear of the car to gain access to the tail lights. In all, it takes less than one minute for the crime to be committed.

This is the third time our vehicle has been the victim of crime in just nine months. In November, someone smashed into the front of our car in a parking lot and drove away. There was security footage, but the business refused to release the video. There was $6,000 worth of damage.

In January, the vehicle was broken into and ransacked just minutes after my parents exited the vehicle to go 20 feet away inside a business. (Thankfully there was nothing inside the car except napkins, maps and vehicle registration information.) Ten minutes later, my parents discovered the crime scene. There was security footage, but unfortunately, a tree blocked the license plate of the thief. The entire incident was recorded on film.

About $12,000 worth of damage has been done to our vehicle, and no suspects have ever been apprehended in any of the crimes.

Back to School: Locker Nightmares

 Today, a friend of mine posted a photo of her son standing at his locker entering in his locker combination. Instantly, the photos jolted me back to my locker challenges while in high school.

We were assigned lockers our freshman year and given the combination. I CONSTANTLY had issues trying to find my locker. It was on the second floor. The teacher’s rooms and lockers were on the perimeter of the hallway which made a square. There were stairwells and an elevator in the center of the square.

Whenever I ascended the stairs, I could never remember if I had to go to the right or to the left to get to my locker. Inevitably, I would choose the wrong direction. I would often have to make nearly an entire lap around the square before I arrived at my locker. Although exercise is important, this was not a welcomed activity when I was trying to hurry between classes.

Once I arrived at my locker, there was the constant panic of remembering my locker combination. I frequently forgot the combination. Even though I might enter the combination 5 times a day, it was always a struggle to remember the numbers. On Friday, I would be fairly proficient at the combination. But by the time Monday came, I would have forgotten the combination over the weekend. I would struggle for five to ten minutes trying to remember the numbers. Eventually, I could usually get the locker open.

More panic came when we had one week off for Christmas. I would arrive back at my locker after a week off from school, and I would stare in bewilderment at my locker. What was the combination!?

And things were even worse after being away for a few months for summer vacation. I would look at my locker on the first day of school as if it was a foreign object. I would nearly cry trying to remember the combination.

When I could not remember the locker combination, I would push aside my pride and head to the office. I would sheepishly ask the secretary if she could look up my locker combination. It was not bad my freshman and sophomore years, but the shame I felt my junior and senior years was off the charts. I had had my locker for three and four years, respectively. And I could not remember the combination!!!

During my senior year, when I could not recall the locker combination, I could remember the approximate hand movements I needed to make to turn the combination lock on my locker. If I closed my eyes and just let my hand turn the lock from memory, numbers which were close to the combination were entered, and I often could pry the locker open upon entering the final number.

When graduating from high school, most people were happy for many reason, but for me, I was perhaps the only person excited that I would never have to use a locker again!

Bittersweet: Uploading my Final Cruise Video

For the last 12 weeks, I have been sharing with the world my adventures of going on a cruise. There were many, MANY unexpected twists and turns. I am so thankful and grateful I was able to go on this once in a lifetime adventure.

Editing these cruise videos as A LOT of work! I filmed on four different devices and had major issues with audio on one of the devices, which meant, for one video, I had to re-record all the audio.

Despite all these challenges, it has been a blessing to re-live these incredible days, week after week. It has reminded me of everything I was able to see and do. This week is the last video, and I am rather sad. Perhaps, in the future, I can go on another grand adventure, but for the moment I need to focus on my health.

To everyone who joined on this amazing journey, thank you. I appreciate all your love and support.

Patient advocate: A new role to fill

After spending over the last decade as being the patient, last week I was introduced into a new role: being the advocate for my dad’s medical care. It was odd going to a medical appointment, and the decisions being made did not involve my health. Although I have been the patient many times, I was unprepared for this new role.

 

During the appointment, I did not take notes. I regretted this as soon as we left the office as I was overwhelmed with things which needed to be done—including racing off to go to my own medical appointment. When trying to sort through what needed to be done next, I was foggy on the details.

After the appointment, I was placed on my dad’s chart as someone who could talk with the medical staff. In short order, I soon started corresponding with the physician and her office. It was very odd having this new role of authority. Shockingly, the medical staff took my concerns and questions seriously. I was not just a girl on life support—I was an advocate for my father.

Since the appointment, I have done some research to ensure the care my father is receiving is the proper course to follow. I am confident in the my father's medical care, but I always want to double check the tests which are being ordered are the correct ones.

I am slightly bewildered in this new role. I am not managing my own health. When I make a decision about my medical affairs, I am the one who will have to live with whatever decision is made. However, with my dad, he is the one who will have to live with whatever decision we agree upon. I have to keep reminding myself, we cast the lot, but God determines the outcome (Proverbs 16:33). As much of a novice as I am at being a patient advocate, I have to trust God is leading the way.

7 years of blogging. Thank you Milly for the inspiration!

In the summer of 2016, I learned that a very dear friend of mine had passed away. She had Mitochondrial Disease and died from respiratory failure. She never got a tracheostomy tube. Instead, she fought to her death using a BiPAP machine, which in the end was not strong enough to sustain her. She needed a tracheostomy tube.

I do not know many of the last details of my sweet friend’s death. I do not know if my friend, Milly, was advised she needed a tracheostomy tube, or if her medical team thought a BiPAP machine was all she needed.

In short, I was deeply grieved to lose such a dear friend.

On August 1, 2016, I decided I wanted to start a chronicle of my adventures in honor of Milly. Milly had a YouTube channel. I wanted to continue her legacy. The account was not supposed to be of any importance—just my daily life with Mitochondrial Disease. I was ambivalent if I wanted to be like my friend, Milly, and have a YouTube channel, or if I should just do a blog. In the end, I decided to do a blog. I did not have a camera, which was the ultimate tipping point of deciding against doing YouTube videos.

A few weeks later, my breathing did a dramatic nosedive. I was thrust into the world of medicine, begging doctors for help. I could not breathe. My blog soon became a source of solace when my world seemed to be crashing down. But together, we pulled through many harrowing situations.

Eventually, in April 2020, I did launch a YouTube channel. I had been given an old computer which had a built-in camera. The focus of my YouTube channel was educating people about
tracheostomy tubes and ventilators. I always think about my friend, Milly. If she would have found my YouTube channel, would a video of mine have helped saved her life? I will never know.

Instead, I try to honor my dear friend in all my videos and blog posts. May her memory be a blessing.

(For anyone interested, I just joined Instagram. My username is lifewithavent if you wish to follow me.)

STOP! That's electricity! It can KILL you!

 Today I had big plans of finishing a YouTube project. I have spent many weeks writing, filming, editing and re-recording audio and video. The end was in sight. Today, I was going to be finally done!

Well, that was my plan. This is how my day turned out.

This morning, the lawn service came to clip our grass. There was an electrical cord on the backyard patio. The nearest grass was about 30 feet (10 meters) away. I thought there was no reason to move the cord. It was far away from our yard.

After the lawn was cut, a man came with a weed whacker. He trimmed the edge of the yard. He then came onto the back patio. He was using the weed whacker to trim some small weeds which were growing in between the patio cracks. He then walked up to the electrical cord and weed whacked the electrical cord.

I ran out of the house and screamed at the top of my lungs to the man, "STOP! That's electricity! It can KILL YOU!!!" (I had to scream as loud as I could because there was also a man using a leaf blower right near the weed whacker guy. In order for me to be heard, I had to make more noise than both the weed whacker and the leaf blower.)

Praise be to God, both men heard me and turned off their noisy machines. The man with the weed whacker looked at me in confusion as if he could not comprehend that using a weed whacker on an electrical cord will damage the electrical cord and cause it to short out. Both men walked away and left the property.

The whole incident left me very sick. The panic of seeing the man weed whacking the power cord in addition to frantically running outside and using all my muscle strength to scream as hard as I could left me in a very poor health state.

My grand plans of finishing my YouTube project were shattered.

Since I was shaking from fatigue, I hooked up my IV nutrition called TPN. The TPN ran for a few milliliters and then started beeping. It said there was air in the line. I tried clearing the line, but the pump kept beeping. I discarded the bag of TPN. I then set up another bag of TPN. This time, the pump worked for about 20 minutes before it started beeping. It stated the pump door was open. I checked. The door was closed, but I opened the pump and reset it nonetheless. I turned back on the pump and again it stated the pump door was open. I did this routine a few times with no avail. I finally decided the pump was on the fritz.

Thankfully, I have a second TPN pump. I undid my TPN tubing from the pump and hooked it into the second pump. I turned on the second pump, and for the moment, it seems to be working.

When I thought all hope was lost for the day, I looked outside and saw a mommy and daddy with their tiny baby birds. I was so excited! I have been waiting and waiting for them to have kids, and today, God allowed me to see this beautiful miracle.

The stress of the day instantly melted away as I was overwhelmed with delight to see these beautiful baby birds!

 Maybe all hope of completing my YouTube project may not be lost. There are still hours left for today. Perhaps, God may be gracious to me and allow for everything to quickly fall into place.