Tuesday, October 29, 2019

A Cold But Fun Filled October

As I'm writing this blog post, it is currently 25 degrees outside. With the windchill, it feels more like 12 degrees. That's cold for October. Even in North Dakota! Winter definitely seems like it's here. Earlier this month we had a historic blizzard that dumped 13 inches of snow on Bismarck and over 2 feet of the white stuff in other parts of the state. As a result, the public schools had their first official snow day. I was ready to give Faith the day off from her lessons at home, but she still wanted to do them!
First major snowfall of the year - in October! (Thanks mom for the pic!)
It could have been a snow day for Faith but she still wanted to do school!
It did warm up soon after and all the snow melted but the October blizzard created quite a mess for farmers and ranchers who still had crops in the field and cows in the pasture.

I was very grateful that we didn't have to go anywhere - for school or for work. I am still freelance writing from home. Recently, I began doing some freelance work for a local company called the National Day Calendar. I currently write their articles for the International days that get observed around the world. It's been a fun change of pace and much more exciting than writing about septic systems and other mundane subjects!

Besides homeschooling and freelance writing, Faith finally started Inspire Collective again. It's her most favorite activity in the world. She has made some of her best friends through this faith-based homeschooling group.

Faith's class learning about plant cell walls in science.
Faith's class checking the speed of their LEGO cars

Faith's LEGO car ended up being the 5th fastest out of 12 cars! I was really thinking her dad should have been there for this event, but Faith and I actually did pretty good!

Along with enjoying science and STEM, Faith also likes her history class. They are learning about one of my favorite time periods, which is the mid to late 1800's. I am thankful that she watches Little House on the Prairie, which helps with her comprehension of the subject matter.

This past weekend, we had a momentous occasion in our household as Faith turned 16! We ended up having a party in the lobby of our building with some of her friends and neighbors. Because we had to limit the number of people, my mom came up with the idea of having a 2nd party for just the family, which will be next month.

Despite the fact we already had plenty of people on our guest list, Faith continued to invite people in our building. One day we were sitting in the lobby and a lady who had recently moved in went to check her mail. Faith said hello to her so she came over to where we were sitting. She told us she is a nursing student. (Faith always makes connections with the care-giver types!). 

Faith ended up inviting her to her party. Not only did Faith's new friend show up, she gave Faith a very nice card with money inside. It was so incredibly sweet. Everyone who came to celebrate with Faith was so kind and generous. She received clothes, nail polish, art activity kits, gift cards, and even homemade cookies! We are truly blessed to have such wonderful friends and neighbors.

 A few of Faith's neighbors even brought their dogs!
One of Faith's favorite families!
Chris and Faith with her beautiful birthday bouquet.
Faith with her friends.  

Faith blowing out her birthday candles.
She did it!!! Happy Sweet 16 Faith!

Thursday, February 7, 2019

CHD Awareness Week: My Heart Story (So Far)

Grandma Dorothy holding me at 5 months of age
In February, 1974 when my mom took me home from the hospital, she thought she had a perfectly healthy baby. But when her mom came for a visit five weeks later to see her granddaughter, she asked why my lips looked discolored. Grandma Dorothy also noticed I slept a lot, even for a newborn. Mom assured Grandma she would ask the doctor about it during my six-week checkup.

Mom took me to the same clinic in Wolf Point, Montana, where I had been born. She and Dad were living in a tiny town called Luster, where Dad worked as a ranch hand. My regular pediatrician was unavailable. A young doctor, fresh out of medical school, examined me instead. Dr. Mattley quickly agreed the bluish tint to my lips was disconcerting and because of it dubbed me a blue baby. “Her body isn’t getting enough oxygen, which is why her lips and fingernails are cyanotic,” he said.

He also detected a heart murmur. An X-ray confirmed a possible heart defect. Following the examination, Dr. Mattley called the clinic in Great Falls, which employed the closest pediatric cardiologist in Montana, 300 miles away.

At the age of three months, I had my first electrocardiogram. I also had a second set of X-rays. The cardiologist admitted to my parents that he wasn’t sure what he was seeing. “There’s nothing we can do at this time. We’ll just have to wait and see. She most likely will need to have heart surgery someday.”

There was no Internet or access to medical information for doing research. My parents had no other alternative than to believe I would survive long enough to have surgery.

When I was four months old, my parents moved back to their hometown in North Dakota. Mom heard about a pediatric cardiologist in Bismarck and my parents took me there in June.

Dr. Katrapu had ordered another round of X-rays, an electrocardiogram, and blood work. “It is possible she has a hole in her heart,” he told them. “This is common for babies. A simple surgery should take care of it.” He went on to explain that a diagnostic test called a heart catheterization would show any anomalies in my heart. “Unfortunately, we can’t do the test here in Bismarck. The closest place is the University of Minnesota Hospital in St. Paul.”

At six months old, I weighed only twelve pounds. My lips and fingernails were getting more cyanotic by the day. I slept most of the time. Drinking from my bottle completely wore me out. My appointment in Minnesota could not come fast enough.

In August, Mom and Dad loaded up their Ford Galaxy (with no air conditioning) to make the 600-mile trip to Minneapolis–Saint Paul. They set out from home on Grandpa Lawlar’s farm twenty miles north of Watford City to a place completely foreign to them. Dad drove down the highway and then on the Interstate with Mom sitting on the passenger side and me lying on a blanket between them, which was completely legal at the time. Not having me restrained in a car seat made it much easier to feed and change me during the twelve-hour drive. The biggest city they had ever visited was Fargo, where Dad had gone to college. They were completely overwhelmed by the size of the Twin Cities but somehow managed to find the hospital.

My parents met with four different doctors, including Dr. Bessinger, the pediatric cardiologist. Following the usual tests, a nurse carefully placed me on a large gurney, making me look much smaller than I was. In response to the panicked looks on my parents’ faces, the doctors assured them the routine heart catheterization would take only a couple of hours. They explained they needed to locate the hole so they could operate the next day. I had been gone for over three hours when Mom and Dad, stuck in the waiting room, started to get anxious. Finally, five hours after my parents had last seen me, Dr. Bessinger gave them the grim news.

He told them I did have a hole in my heart, but I also had much more going on than originally suspected. An exact diagnosis could not be determined. The doctor explained to my parents how a normal heart has four chambers but only three of mine were fully functioning. He also said I had some blockage to one of the main arteries attached to my right ventricle. I would need to have a shunt placed between my pulmonary artery and aorta, allowing more oxygen to flow through my body. Without the shunt, I would eventually suffocate to death. He warned my parents it would not be a permanent fix. As I grew older, I would have to get another one placed. My parents were informed that my particular heart defect was rare and the prognosis was uncertain. Even with the shunts, I might not live to see my twenties.

Following my surgery the next day, the doctor asked a nurse to take my parents to the Intensive Care Unit to see me. The surgeons had opened me up on the left side of my body. Along with several IVs, I had a tube down my throat and a big machine near my bed pumping oxygen into my body. As the machine pumped, they could see my little chest move up and down. Though tubes, lines, and bandages obscured much of my body, Mom did notice my lips were not as blue. Dad, completely unprepared for what I would look like, nearly passed out when he saw me. Fortunately, a nurse standing close by steadied his wavering body. As they stood over me, nurses came in to draw blood from my heel every ten minutes.

A couple of days later, the doctors discharged me from the ICU and moved me to the pediatric floor. Mom and Dad did not have enough money to stay in the Twin Cities during my entire hospital stay. They were forced to leave me in the hospital and make the long drive back home. The only thing connecting them to me was the daily long-distance phone calls to the nurses. The nurses always reassured my parents if anything ever changed someone would get in touch with them. Four weeks later, the one phone call they had been waiting for finally came.

Dad had just walked inside from milking cows. “They called and said we could come and get Cari,” Mom told him.

They dropped my brother off at Grandma and Grandpa’s, just down the road, and drove all night to be reunited with their baby. When they reached the hospital twelve hours later, they were relieved to see that I looked like a normal, healthy baby. My pinkish skin plus the weight I had gained nearly shocked Mom. “It’s hard to believe this is the same baby,” she quietly remarked to Dad.

They stood there for several minutes watching me kick my legs around in the crib, marveling at the amount of energy I had. Within hours I was discharged and Mom and Dad were back on the road bringing me home.

Celebrating my 45th Birthday with my daughter!
Four years after my first surgery, I had another one, and then at 10 my Fontan. In between surgeries I had been officially diagnosed with Double Outlet Right Ventricle (DORV). In 1999 at the age of 25, I had my fourth open heart surgery and 3 months later, a pacemaker implanted. 

I am beyond grateful for the wonderful medical care I have received through the years, and that despite what doctors said, I was able to have a child. My daughter, Faith is the most wonderful gift the Lord could have ever given me. 

I know my heart journey is far from over, as this spring I will most likely need to go to Mayo for a heart catheterization during which they will give me a Fontan "tune-up" and possibly another surgery to have my pacemaker completely replaced. After that, I'm not sure what the future will bring. What I do know is that through it all, God will be with me, just as he has been all these years.

By the way, my nephew, Preston is raising money for the American Heart Association. On his donation page he says, "I'm excited about raising money for other kids - kids with hearts that don't exactly work right and to help fund new medicines and treatments to be discovered." Research in the area of pediatric cardiology is helping the one in 100 babies born with CHD every year to live into adulthood and have a high quality of life! 


Wednesday, January 2, 2019

My Top 32 Inspirational Memes of 2018

At the beginning of 2018 I had come up with the idea to post an inspirational meme for every day of the year. I called it #365DaysOfInspiration. Part of the reason for doing so was because of all the negativity and bad news that seemed to be flooding Facebook. I figured my inspirational posts could be at least one positive thing people saw each and every day.

Little did I know at the time how much my Facebook friends would come to appreciate these little nuggets of inspiration. One lady even told me that she wrote every one of them down in a little journal. Another told me these little blips of inspiration kept her going on some of her most difficult days. Many people shared that whatever I had posted for the day was just what they needed.

After faithfully posting for 365 days, one of my friends said, "Thank you for the 365 inspirational posts. I enjoyed the variety of quotes, often feeling challenged to think more about it through the day. I know this took a lot of time and effort. So thank you, Cari, for enriching our lives in this way!"

There are a million inspirational memes out there, and in my choosing the perfect ones, I tried to be careful that the message was never contrary to Scripture. Sometimes, the meme was more funny than inspiring, but I figured, we all need to laugh more!

Some people have asked if I planned on posting inspirational memes again in 2019. While I enjoyed doing it, I decided not to, mainly for the simple reason of trying to spend less time on Facebook. So while you will see more memes from me throughout 2019, it certainly won't be every single day!

Like a true nerd, I kept track of which of the 365 Days Of Inspiration received the most likes, shares, and comments, etc. Here are the 32 that came out on top!

































Hope you all have a wonderful 2019 and
may you be the inspiration and encouragement 
that others need every day of the year!

Thursday, December 20, 2018

Our Shining Star

I know I have said this many times before, but I can't reiterate how thankful we are for the Inspire homeschooling group that Faith joined. Not only has she made some wonderful friends, her social skills have improved, she has more confidence, and she has learned a lot in science and history.

Besides all of that, she has gotten to take part in their annual Christmas program, which she absolutely loves. Last year, she played the part of an angel and had a few lines to say. This year, she played the one and only bright shining star. Not only did she get a narration part, for which she had to memorize and say an entire paragraph worth of words, but she got to say the best line of the play, "SO MANY STARS!"

This year's program, Starry Night, Noisy Night, told the birth of Jesus from the perspective of the animals that were present in the stable that night. There were sheep, chickens, cows, and of course a donkey. There were also shepherds, wise men, and angels. Mary and Joseph were there, too. And so was the star.

During practice one day, Julie, the music teacher at Inspire, had Faith say the lines, "and so many stars." (The two previous lines are, "So many sights! So many sounds!"). From that moment, Faith wanted that part. Even though the script called for other characters to say it, Julie generously gave her the part. Faith practiced every day - she knew all the songs, not to mention everyone else's lines. I kept telling her she could only say her lines during the program. I also told her that when there was a duet or solo, she couldn't sing their parts, even though she really wanted to.

At home, she sang the songs beautifully, but during Inspire, she only sang her favorites. At home, she recited all her favorite lines, but at Inspire, she did her best to restrain herself and let the other kids say their parts. I had no idea what would happen during the actual program.

Besides helping her, I had to come up with a star costume for her. One day while out shopping, I managed to find the perfect star outfit - a midnight blue dress with gold and silver stars, complete with a little gold jacket. I also grabbed a black pair of leggings with gold and silver stars because I honestly didn't think Faith would go for the dress. When it comes to clothes, she usually opts for comfort over style.

I also grabbed a ton of arts and crafts items in the hopes I would somehow be able to create a star to mount on her chair. I had no idea how to do it. Pinterest was of no help whatsoever. Apparently turning a wheelchair into a star is not really a thing that people do.  I bought some tag board, a string of gold garland, lots of glitter, a roll of gold wrapping paper, two strings of LED battery-operated lights, and some really cool sparkly gold duct tape.

When I got home and told Faith she could either wear the dress or the leggings (with a black shirt that I was somehow going to glue some stars on to), she surprised me by yelling, "The dress!" Little did she know that she had just made my life a little easier. Now, I wouldn't have to worry about the shirt. She wanted to try the dress on right away and we discovered that it fit her perfectly. We also discovered the black leggings looked great underneath, despite the fact they were black and not midnight blue. She wore her outfit to Inspire the Tuesday before the program. I had also strung some lights through the bottom of her chair. Everyone loved her star look. So far so good.

Faith on stage with the shepherds, angels, and animals
The next day we got to work on the actual star. One of my friends had posted a picture of some Star of David cookies she had made for Hanukkah and I noticed the star was basically two triangles. I figured I would go for it. To my utter dismay, I couldn't make an equilateral triangle. It's harder than it seems! My sister-in-law said I should've used a protractor. Yes, I should have, I told her, while trying to remember what in the heck a protractor is. Math was not my strong suit and I had nearly failed high school geometry.

By this time, Faith was getting quite impatient about this whole star deal. I had to come up with a plan B. I basically used two squares to make the star. The trick was to make sure the star stayed put while resting on the push handle of Faith's chair. Somehow it all came together - the star just had to stay in place during the actual program.

Faith and friends
We had to be at the dress rehearsal at 5:00 p.m. The star looked great, I put lights on the star as well as her chair, and with her star outfit, she looked amazing! The other kids crowded around her telling her how much they loved her star costume. During the rehearsal, she was extremely excited. When it was her turn to be pushed up to the microphone for her narration part, her whole body tightened up, making it hard to enunciate. She said her other line, "So many stars" perfectly.

Faith's star all lit up - along with the candles for Silent Night
By the time the actual program rolled around, she was getting tired. It ended up being a good thing, though, because her body wasn't as tense which enabled her to say her lines loud and clear. She even tried to sing along with her friend, Maddie, with her solo. Maddie just smiled and kept on singing. It ended up being a great program, and even though Faith didn't sing like she did at home, I couldn't have been happier for her. Not only was she our shining star that evening, she is our joyful, sparkly girl all year round!

The entire Inspire group
Faith with her Grandma Deone, baby cousin Marla, and auntie Lisa