Faith's Mom's Blog

A Topsy-Turvy Month of March

2026-03-30T14:31:00.003-05:00

Topsy-turvy...that's the only word I can think of to describe the month of March. It's been disorderly, chaotic, and a bit out of joint. There have been ups and downs. Highs and lows.

It all started out well enough. My dad celebrated his 75th birthday. This was an especially big deal as he gave us all a scare last month when he came down with a staph infection, which entered his bloodstream. He was very sick and his doctor said if he would have waited 1 more day before going to the ER, the outcome might have been different.

Celebrating my dad's 75th birthday!

On his birthday, we just had a small party as he was not yet feeling 100 percent. A couple of weeks later, when Dawn was here with Faith and I stayed with my parents, I noticed he seemed like he had more energy and was feeling better. I am very thankful for that!

Another person in my family (my sister Tesa) also had a milestone birthday this month. She turned 50! We were all hoping it would work out to have a big birthday bash for both her and Dad, but there were too many scheduling conflicts to make it work (not to mention the price of airline tickets and the crazy weather). We are still hoping to do a get-together this summer to celebrate them both.

But speaking of weather (as we like to do in North Dakota) that has been crazy as well. One day it seemed like we were having an early spring, but then we ended up with snow and high winds. Another day this month, it hit 75 degrees, breaking a record high temperature, which made it feel more like summer!

A meme shared by a local meteorologist this month!

Faith also had a doctor appointment with the physiatrist she sees who coordinates her treatment for spasticity and scoliosis. Unfortunately, Faith's back brace is very constricting, and she has not been willing to wear it for more than 2 hours at a time.

Thankfully, her doctor came up with a different solution, so some adjustments are in the works. We also need to make adjustments to her chair so that she has more support on her right side.

This appointment can be overwhelming, and Faith always gets super anxious about it. She is always scared she is going to have to go on the exam table in the prone position (on her stomach) which she hates. He could tell she was not going to cooperate, which makes it very difficult, if not impossible, to get her on her stomach.

Faith has exceeded the 100-pound mark!

She at least got out of her chair, so we were able to weigh her wheelchair without her in it, and then when she was in it. I was shocked when the nurse told me she weighed 111 pounds! Apparently, the Liquid Hope, along with her blended diet, and the snacks she has been eating by mouth has all helped her gain weight!

This is a huge deal, as when she was younger, one of her diagnoses was failure to thrive. It has always been hard for her to put on weight, so I am thankful it's no longer a major concern.

Unfortunately, though, the particular kind of Liquid Hope she has been using is on back order until July! One day, we only received about 10 pouches of food, but I figured the rest was coming in a separate shipment, as does happen once in a while.

Faith getting a feeding - she is so excited about gaining weight!

When the rest of the food did not come, I called the DME company and they had no idea what was going on. They contacted the company that makes the food and found out it was on back order. I called the company as well and they told me there was a manufacturing issue with the type of Liquid Hope Faith gets through her feeding tube. They told me they only had one flavor available.

I contacted her doctor and asked if we could get a prescription for that particular flavor. We did end up getting some of it, but unfortunately it contains blueberries, which does not go through her tube very well, so I have to strain it before giving it to her. On a positive note, we did get some extra feeding bags from another mom in our special needs community, and that has been a huge blessing!

One more frustration for Faith this month was that she lost another one of her favorite staff at her day program. This makes 3 of her favorites that have left the room she is in at her day program. (Thankfully she still gets to talk to them from time to time!)

These transitions are always hard for her, especially when new staff gets hired. It takes time for her to be able to completely trust them.

Faith with 3 of her former staff

None of these frustrations and disappointments are anything like what some people go through on a daily basis. I have to remind myself that things could be much worse. God continues to bless us and provide for our needs, and I am so grateful for that.

On a sad note, we have some friends from church whose 16-year-old son passed away. Connor had Duchenne's Muscular Dystrophy (DMD), which is a progressive disease that left him bed bound for several months. His mother lovingly cared for him day and night these past few years. We are heartbroken that Connor is no longer with us but are thankful he is no longer in pain.

Faith with Connor and his parents and sister at her graduation reception in 2022

Another family that we met during Faith's homeschooling days, lost their 7-year-old son in a tragic car accident. It's these tragedies that make us realize how fragile life is and that we truly never know when our life on earth is through. Only God, the One who created us, knows when we will draw our final breath.

Whether expected or unexpected, everyone on this Earth will die and spend eternity either in heaven or in hell. That choice is up to you. If you choose to believe that Jesus is your Savior, you will go to heaven.

As we get ready to celebrate Easter, please remember that it's not about bunnies, but rather the One who died on the cross so that you can receive His free gift of salvation. When you believe that you can't save yourself, and only Jesus can, all your sins are forgiven, and you are guaranteed a place in Heaven for all of eternity. It's really that simple!

You don't need to be a good person or make sure your good works outnumber your sins in order to get to Heaven. You don't even need to hope that you'll make it because the moment you place your trust in Jesus, you can have assurance of salvation. That is wonderful news and what Easter is truly all about!

Faith's Adaptive Skiing Adventure

2026-03-02T21:38:00.003-06:00

I am usually all for Faith trying something new. Years ago, though, I drew the line at adaptive skiing. I knew that Dreams in Motion does an annual event at Huff Hills (North Dakota's largest ski area), but I was too afraid to let Faith try it. I just didn't know how she would do being strapped down so tightly, especially with her high tone and issues with her left hip.

At her day program, some of her friends had been going for years and Faith thought it sounded like so much fun. So, this year, I decided we should give it a try. Since there are only 20 spots available for this event, I got her registered the morning it opened up.

Lots of fresh powder at Huff Hills

As the event drew near, I knew I needed to get snow pants for her (since she had none) and make sure I had all the right winter apparel to keep her warm. That was also one of my biggest concerns is her getting too cold, which can cause her tone to increase even more.

As the day approached, she was getting more excited and I was getting more anxious. Especially after finding out that she was actually going to be on the ski lift! But the weather concerned me as well, as the high temperature for the day was only 18 degrees.

Another reason for my anxiety was that this was something totally new for me and for Faith. Neither of us had ever been to Huff Hills and neither of us had ever gone skiing. I just had no idea what to expect. And that's one reason I asked my sister to come along to help. And I'm so glad she did!

The night before the event, we got about 5 inches of snow and there was a winter weather advisory in effect. I figured we would still be okay to go. Faith and I picked up Dawn and drove 27 miles south of Mandan to the ski area. I turned off the main road and then took a much smaller, narrower road leading to the lodge area.

We eventually made it to the lodge, but it was a little precarious!

The road was icy, but we were doing just fine until I had to stop and let a car park. When I tried to go again, my tires could not get any traction. Besides not being able to go, I really had no idea where I was even going to park so that we could unload Faith. I didn't think I would be able to make it down to the base lodge, and if I did, I probably wouldn't make it back out.

Dawn was patiently trying to talk me through getting up the hill. I tried to back up a bit and then go forward again, but instead of taking it slow and easy, I was trying to go too fast. I just couldn't get any traction. Thankfully, a couple behind me who had their daughter with them for the adaptive skiing event, offered to help me out. (This is why I often pray that God sends help if I ever find myself in a tough situation!) This couple truly was an answer to prayer.

The dad (Jamie) was giving me tips on how to make it up the hill, but I asked if he just wanted to drive. He got into the driver's seat, and I when I got out, I discovered there were a couple more guys behind me on standby to help as well. He slowly made it up the hill and parked the van as best he could, although it wasn't really an optimum spot. It was the only place though that would allow us to unload Faith.

He helped my sister and I get Faith down to the base lodge. Once we got down there, the first order of business was to find a helmet and goggles for Faith to wear. She normally doesn't like things on her head or face, but she also knew she had to wear them if she wanted to ski. She didn't protest at all! Nor did she protest when 2 strong guys lifted her out of her chair and put her into a sled and strapped her down the best they could. It took a little while to get everything situated, but she was so patient!

Faith getting strapped into her sled

Finally, she was ready to go, and Matt (her pusher and new best friend) took her over to the ski lift. They hooked the sled onto the lift and there she went, up, up and away! My heart was racing as I realized I could no longer see her and all I could do was wait for her to come skiing back down the hill. It was a long wait!

Getting in line at the ski lift

Then, all of the sudden, I saw a green sled coming down the hill. I knew it was her because of the white helmet she was wearing, and the brightly colored quilt on her lap. She came zooming down to the bottom and when she stopped, I asked how she liked it. She had a big smile on her face. I could tell she wanted to go again! And again! And again!

After the fourth time, I knew she was getting cold and had to be getting hungry, so I told her that was probably the last time. Besides, there was another person who needed to use the sled she had been using. She reluctantly agreed to get back into her chair. We went inside the lodge to warm up, and I grabbed some food for us.

Faith with one of the skiers

As we were eating, I heard someone ask, "who drives the red van?" I braced myself for the news that someone might have hit my van. Instead, though, someone had tried to get around the van and ended up going down the embankment on the other side of the road. I found Jamie and explained what happened, so we went to assess the situation.

The driver with the stuck vehicle told me I needed to move my van right away. He said to just drive it down to the lodge. Jamie stepped in and explained that it's an accessible van with front wheel drive only and it probably wouldn't make it back up. I said, "let's just load Faith up right now and we'll get out of the way." So, we went down to get Faith, loaded her up, and let them deal with the stuck vehicle. I felt terrible, but I knew it wasn't really my fault.

Faith racing through the snow (someone captured this photo and video for me!)

Despite the crazy ending to our day, we really did have a lot of fun. The fresh white snow was so pretty but it was cold! At one point, I looked at the weather app, and it showed 16 degrees with a wind chill of 5 degrees. There was also snow still coming down. We haven't had a lot of snow this winter, so the 6 new inches of snow caused the ski area to be very busy.

Unfortunately, some of Faith's friends had canceled due to the weather so she was disappointed not to see them. She did make some new friends, though! And I am so thankful there were people there to help us in our time of need, and also that my sister could come along for added support. As a single mom, it's just hard sometimes to do these kinds of things by myself. (I jokingly called her my emotional support Dawn!)

Smiling but getting cold!

Faith says skiing is her new favorite thing and she had a lot of fun in church yesterday telling people she went skiing and showing them a video of her going down the hill. They were all very impressed by her courage! She is already counting the days until she can go skiing again!

I am so grateful for all the volunteers, not only from Dreams in Motion for organizing such a huge event but to all the skiers who readily lent a helping hand. It's a lot of work getting the participants in and out of their chairs, buckled into their sleds, taking them up the hill and getting them back safely down. All while trying to keep warm! It truly is a team effort, and such a wonderful one!

On our way back home after our skiing adventure!

Adults Living with Congenital Heart Defects (CHD)

2026-02-09T15:34:00.000-06:00

We are right in the middle of Congenital Hearts Defect (CHD) Awareness Week, which runs from February 7th through 14th. I am glad to see so many posts on social media to help draw awareness! Many of those posts center around children with CHD, which is good as heart defects are the most common birth defect in the United States. But many people are unaware of how CHD affects adults. Hence, this blog post!

In 2010, there were 1.4 million adults in the United States living with congenital heart defects (CHD). Due to increased survival, this number increases by about 5% every year. These numbers are significant considering that at one time babies born with CHD had virtually no chance of becoming an adult.

Thanks to surgical advances and research in pediatric cardiology in the past 50 years, most congenital heart defects have been able to be corrected. Today, babies born with heart defects have a much better outlook than they did 50, or even 15 years ago.

February 7-14th is CHD Awareness Week
Photo Source: Pixabay

Some of the First Congenital Heart Surgeries

Some of the adults who are alive today are survivors of some of the first open heart surgeries done in babies born with defects. For instance, the Blalock-Thomas-Taussig procedure was developed in 1944 to help infants with cyanosis or blue-baby disease. This procedure was done primarily for those born with Tetralogy of Fallot (TOF), one of the most common congenital heart defects.

Another surgery, called the Fontan was first done in 1968. Surgeons perform this procedure on patients born with a single ventricle or a single-functioning ventricle. Today, the Fontan operation is the most common procedure performed after the age of two years. Babies born with defects requiring this type of surgery often have to go through other procedures first.

Of course, even though surgeries like those mentioned above were first performed when they were, they have gone through several modifications. Today many of these open-heart surgeries being performed offer babies born with CHD's a better quality of life which in turn helps them grow into adults with a higher quality of life than the first-time recipients of such procedures.

The Need for Continual Care

Many adults who received treatment for their heart defect as a child go into adulthood thinking that they have been cured and they no longer need to worry about their heart condition. For over half of the adults living with CHD, this couldn't be further from the truth. Depending on the complexity of the heart condition the patient was born with, sometimes they need to receive ongoing care for the rest of their lives.

There are three primary reasons that adults who need continual care often fall through the cracks:

They think they have been cured and they no longer need care.
They can't afford ongoing care.
They don't know where to go for ongoing care.

As children, many adults with congenital heart defects saw a pediatric cardiologist and it then becomes difficult for them to make the transition from a child to an adult with CHD.

Currently, there are nearly 60 ACHD centers that have been accredited by the Adult Congenital Heart Association in the United States.

Mayo Clinic in Rochester MN is an ACHA-accredited center for adults with CHD

Bethesda Conference Guidelines

Every year, the American College of Cardiology (ACC) conducts a meeting in Bethesda, Maryland to address important issues in cardiology. In the year 2000 during the 32nd Bethesda conference, the ACC addressed the needs of adults living with congenital heart defects. The report produced from this conference outlines many unmet health care needs facing those adults with congenital heart defects (ACHD).

The report also states that those adults born with complex heart defects should be seen at specialized ACHD care centers on a regular basis, in other words be seen by someone with experience in treating adults, not just children with CHD.

Since a regular cardiologist has little training in the area of pediatric cardiology and virtually none when it comes to adults with CHD, the report suggests that even those adults born with simple defects be evaluated at least once at an ACHD care center.

There are cases where the ACHD cardiologist travels from an ACHD center to surrounding towns to see patients. For example, cardiologists at the Mayo Clinic in Rochester, Minnesota travel to other areas including communities in Iowa and North Dakota.

The Challenges of Living as an Adult with CHD

There are many challenges for some adults with complex CHD that healthy adults do not face.

Contraception and Pregnancy

Women born with a complex heart condition need to be careful about which kind of contraception is safe for them and also if pregnancy puts their life at risk. At one time it was not recommended for women with certain heart defects to have children. Now, however with the development of ACHD centers, some women can become pregnant but have to be followed closely by their ACHD cardiologist.

It is advisable that before a woman starts on any kind of birth control or before getting pregnant that she talks to a cardiologist who specializes in adults with CHD.

If pregnant, women with CHD should also begin to have their baby's hearts monitored between the 16th and 18th week of pregnancy. Some congenital heart defects are thought to be hereditary.

Exercise

Some adults with CHD have to be careful about how much they can tolerate when it comes to exercising. Some patients need to have weight restrictions while others are not recommended to walk or run long distances.

Psychological Issues

Being an adult with CHD can take its toll emotionally. Some adults have a fear of dying while others may have trouble being active because of their health. Others face depression and unresolved fear and pain.

There are also physical characteristics such as scarring or being cyanotic that can be hard to deal with. Sometimes talking about their heart defect is hard to do with friends of family members. If an adult with CHD is having emotional issues because of health reasons or any reason, it is recommended they see a counselor.

Education is Crucial

All adults living with CHD should be educated about their particular defect. To live as healthy as possible it is important to be educated in the following:

Name and details of their heart condition
Surgeries that have been performed
Frequency of follow-up
Medications and side effects
Preventing heart infections (endocarditis)
Exercise
Birth control and family planning
Career planning and resources
Insurance
Dental care
Symptoms to look for
When to contact their health care provider

They also need to know that minor or major surgery can present risks for the CHD patient. Special attention is needed with anesthesia and to prevent heart infections (endocarditis). Patients on blood thinners also require special care. Ideally all surgery on these patients should be done at ACHD centers.

Adult Congenital Heart Association

The Adult Congenital Heart Association (ACHA) is a "nonprofit organization which seeks to improve the quality of life and extend the lives of congenital heart defect survivors." It was founded in 1998 by a group of adult congenital heart defect survivors and their families.

The ACHA website is a great place to go for support, education and to become an advocate of research. There is a message board which is a wonderful way to find other people with similar conditions as yours. There is also information on how to get an ACHA support group started in your area.

If you would like to read about my personal journey with CHD, here are a few blog posts I have written:

Me with my sister after my pacemaker lead replacement in 2021

Faith's 4 Year Day Program Anniversary

2026-01-31T14:42:00.000-06:00

This past week marked a huge milestone in Faith's life - she has been at her day program for 4 years! I well remember how excited I felt when I found out that in order to qualify for the program, all she needed was to be 18 and have a high school diploma.

I know that is not the case in some states. And in many cases, parents choose to have their special needs child in school until they are 21 and then after that they can attend a day program. For Faith though, since I homeschooled her, we were both ready for her to move on to her adult life when she turned 18!

Faith at the Science Center with one of her day program staff

After a few meetings with her case manager and day program staff, she was ready for her first day. But was I? She was excited when I dropped her off, but as I drove away from the building, I began to cry. Would she really be okay here? Would staff know what to do if she looked uncomfortable or seemed like she was in pain? Faith is verbal, but she cannot always verbalize what she is feeling physically or emotionally.

All day I kept checking the phone for texts. The only text that came through was a question about giving water through her g-tube. Later in the afternoon, I texted staff asking how things were going. The room manager responded saying that she was “picking on staff” and trying out a wheelchair rocker.

Starting out, Faith only attended the day program 2 days a week. She eventually worked her way up to more, and before I knew it, she was attending a Sock Hop, going swimming at the aquatic center, taking trips to the science center, and visiting horses at a nearby ranch.

Faith loves getting to see the horses!

There were a few peers she talked about quite a bit, and I could tell who some of her favorite staff were. I was thrilled about all of the socializing and activities in which she was able to participate. I also liked that I could be in constant contact with her room manager via text. She was always willing to listen to my concerns.

Of course, there were some bumps along the way, which included favorite staff leaving, getting used to new staff, peers getting into her personal space, schedules to rearrange due to her therapy, and getting sick more often due to being in close contact with others. Even though she enjoyed it, there were times that Faith would get very anxious about going to her day program. A lot of times, this was due to staff changes or not getting to work with her favorite staff.

Faith having fun at her day program!

Eventually I began to realize that she seemed super focused on staff and that she didn't seem to do a lot with her peers. It dawned on me that most of her peers were nonverbal, which is why she connected more with staff and always wanted their attention.

I knew there was another room in which those who attended were more verbal and who were a little more independent. I began asking her room manager if it would be an option for her to switch rooms. But then, she came down with the flu and then RSV, so it was a while before she could try out the other room.

The room she would be switching to was called Creative Learning. There was a downstairs room and one upstairs. There were a few friends of hers in the downstairs room that she had known for a while, so I thought that was the better option. However, about a year later, the downstairs room joined the one upstairs in a brand-new space. This meant she would be with twice as many staff and peers. It was a big change for her that ended up causing a lot of anxiety.

Faith on her 21st birthday sharing cupcakes in her Creative Learning room downstairs

She did acclimate to the change, but there were still things that caused some anxiety. Again, it mostly revolved around staff changes and working with new staff. I understand why this would cause her to be anxious as she needs to trust staff 100 percent. If staff feels unsure about what they are doing, she senses it and gets stressed out.

Even though working through some of these challenges has been difficult, it has helped her to grow, and she has learned how to communicate her feelings a little better. For instance, this past week, she was working with her favorite staff and when that staff was helping another person in her group, Faith said something mean to that peer. When talking to Faith about it later, she realized that she had felt jealous because staff was paying attention to her peer and not her.

Faith going out for breakfast at IHOP with her peers

Sometimes when she has big feelings about something that happened in her room, she will tell me that she wants to go back to Rec Leisure. I finally realized that she says this because she wants to go back to where things were a little bit easier and where she wasn’t as challenged. The atmosphere was quieter and a little more laid back.

In Creative, there is a lot more activity and noise. At the same time, she has had so many wonderful opportunities in Creative and has such good friends in that room, which is what I try to remind her of when she says she wants to go back to her old room.

Getting loaded up to go on a road trip!

After four years, I can see the growth in her and how much she has matured. I am so happy about some of the things she has gotten to try, such as volunteering to clean up at the zoo, taking a road trip to Dickinson, going out to eat with her friends, and most recently being asked to Winter Formal.

It's the best feeling that when I bring Faith into her room, her peers excitedly say, "Faith is here!" Some of them want her to come sit by them and others will come over to give her a hug. The funny thing is that her Auntie Dawn works there and she will sometimes stop in to see Faith. Her peers all know to cover their ears when Dawn enters the room because Faith will scream with excitement!

Faith at a 6-month review meeting (and yes, there are cookies involved!)

I am grateful for all the staff who work with her and especially her room manager who has been so supportive and willing to help when Faith seems to be struggling. Along with them, Faith also has the best program coordinator, who even takes time to visit Faith in her room and do video chats with her.

I am in awe that there are such wonderful human beings who are so willing to care for Faith and others with disabilities. It's a great feeling to know that when I drop Faith off, she is in the best hands and that they truly care about her. My favorite part though, is picking her up and hearing all about her day!

Faith and Colin at her first formal dance

My Top 10 Blog Posts of 2025

2026-01-10T17:09:00.001-06:00

Before getting to my Top 10 Blog Posts of 2025, I want to say how amazed I am that this blog continues to get the views that it does, especially since so many people say that blogging is becoming outdated. (This year alone my blog received over 81,000 views!) Videos and podcasts are all the rage these days, but I have always been a bit old school.

One reason I keep up with my blog is that it offers a creative outlet and doing it helps me feel less stressed. It also reminds me that this is one project that I started and have continued. (I love to start new projects but have a hard time keeping them going or finishing them. I will try to work on that this year!)

Yet one more reason is because I want to give God glory for all that He has done in my life and use the gift that He has given me to hopefully be a blessing and an encouragement to others.

In 2025, here were my most-viewed blogs:

10. Cerebral Palsy Awareness Month: Reflecting On Our Journey So Far

Faith with her very first physical therapist.

This blog post was written specifically for the month of March, which is Cerebral Palsy Awareness Month. It discusses how Faith's diagnosis of cerebral palsy came to be and what that has meant for her and her parents. I also discuss in the blog how she has grown to be a such an amazing human being in light of going through all of the challenges that CP has thrown her way.

9. Faith's 4th

Faith having fun at the annual 4th of July parade in Mandan, ND

This year's 4th of July was especially celebratory. Not only did we celebrate this wonderful country's independence, but we also celebrated two of Faith's cousins who had graduated from high school. Since they both live out of state, we decided to have one big party for the two of them. The day ended with a fireworks show right out our front window!

8. Faith's Blended Diet and Other Things that Help with Her Digestion

Faith's Grandma feeding her with a little tiny bottle

One of the hardest parts about Faith's disability has been understanding how it affects her digestion. Unfortunately, things that doctors told us to do didn't always work so well for Faith. This meant doing a lot of research on my own and a lot of trial and error. This blog discusses some of the things I have found through the years that have helped improve Faith's digestion.

7. Faith Finally Gets Back to Aquatic Therapy

Swimming has become one of Faith's favorite activities.

Faith used to do aquatic therapy several years ago and in the past couple of years has gotten back to it. She loves how light she feels when getting into the warm water and how it helps her muscles to relax. There are other advantages of aquatic therapy as well, which I talk about in this blog post.

6. Faith Turns 21!

Faith's 21st Birthday was a memorable one!

Faith actually turned 22 in 2025, but her 21st birthday continues to be a well-remembered one! This blog post details all the things she did during the month of October as part of her 21st birthday celebration. Supper with friends, a trip to Fargo, and a concert, were just a few of the fun events she enjoyed!

5. It's Been a Weird Week!

Despite how she felt, Faith still powered through therapy.

It's kind of odd to me that this blog post made the cut for one of the most viewed in 2025. Maybe the wording caused people to be curious. The "weird week" included Faith dealing with a really bad summer cold, a heat advisory, and how I found a missing package from our mail room!

4. 5 Fall Things Faith Loves

Faith enjoying a walk through the fallen leaves.

Fall is my favorite time of the year! I think Faith probably likes Spring a little more because that means our cold, snowy winter is finally behind us. However, there are plenty of things she gets excited about when the leaves start to change color. This blog discusses 5 of them!

3. Our Review of Wheel of Fortune: The New Era

Can you guess this puzzle from this older Wheel of Fortune episode?

I love that this is one of my most-viewed blogs for 2 years in a row! Faith has loved Wheel of Fortune ever since she was in grade school. But one of her favorite parts of the show was how much Pat made her laugh. The transition from Pat to Ryan was a tough one, but since I posted the review, things have improved with Ryan and Faith actually really likes him!

2. My Tetanus Shot Ordeal: A Real Pain in the Arm

Photo Source: Triggermouse on Pixabay

This post, written in 2011 detailed my account of getting a tetanus shot and the negative side effects I experienced. Because of that ordeal, I am afraid of getting another tetanus shot ever again! This post made my top 10 list last year, too and continues to be one of my most popular blog posts ever.

1. Guest Post: Who Needs Sympathy?

In my early blogging days, I networked with other bloggers, especially parents whose children had special needs. It's interesting that many of those people are no longer blogging. I often wonder what happened to the children and the families.

Although, I did recently reconnect with one of those bloggers on a Facebook Group I am a part of called Parents of Adult Children With Special Needs. She had posted about her 22-year-old son recently moving to a group home and left a link to her blog. I was like, "I know her!"

Anyway, back in the day, us bloggers would write guest posts for each other's blogs, which was the case for this post, written in 2011 by Stephen Gallup. Along with blogging about his experiences as a father with a special needs son, Stephen also wrote the book, "What About the Boy? A Father's Pledge to His Disabled Son."

Future Writing Projects

It's hard to believe this blog has been going for 16 years and I have no thoughts of ever discontinuing it. In fact, I am hoping to expand another blog I started several years ago that contains posts on other topics that are of interest to me. One reason for this is because AI has been taking over many writing sites on the Internet.

One site in particular I used to write for (HubPages) recently disclosed they are shutting down. I had written over 100 articles for the website, so I plan to move those articles over to my other blog. I am kind of excited about this, because the hard work of writing is done, I just have to recreate them to fit in with my other blog!

In 2026, there are a few other writing projects I hope to complete, and when the time comes, I can't wait to share them with you!

Blessings to you in the New Year and thanks for reading!

Christmas 2025 and the Worst Flu Bug Ever

2026-01-02T23:24:00.007-06:00

Faith and I barely made it through Christmas before she got hit hard with the flu bug. (Which is why this blog post is a bit delayed!) Leading up to the night of the 25th, we were enjoying lots of music, goodies, and family time.

One event that has become a tradition for us is going to the Nutcracker ballet. This year's performance marked the 8th one in a row that we have attended! We love everything about the Nutcracker - the music, the costumes, the different scenes, the talented dancers, seeing some of our friends onstage, and the seasonal excitement in the atmosphere!

Ready to go to the Nutcracker!

Of course, the week after the Nutcracker always proves to be a busy one, as it is one week before Christmas! Faith had her usual therapies and while she was at her day program, I would do all of my running around. During one of the gift shopping excursions, I ran into my brother Todd! We had lots of fun catching up, right there at Fleet Farm!

My little bro and I hanging out at Fleet Farm!

After picking up Faith from her day program, we went to Missouri Slope to visit Auntie Sharon. She had been going through quite an ordeal since November when she fell at her home and hit her head pretty hard on the cement and hurt her shoulder. It was discovered she had a brain bleed and ended up needing surgery.

Just days after surgery, she was discharged to go home but ended up with other symptoms and had to come back to the hospital in Bismarck. After a few days of being inpatient, she was discharged to a rehabilitation facility, where she began physical and occupational therapy. Faith and I were so happy to see how well she was doing and that she would be able to make it back home for Christmas! Many prayers were answered for her!

Faith and her great aunt Sharon

In the middle of that week, I was able to go back to "Christmas with Lorie Line", which me and a friend thoroughly enjoyed. I had gone to this event a few years ago and absolutely loved it. Last year I was going to try to go again but ended up getting COVID. This year's concert ended with a beautiful sing-along to "Hark to the Herald Angels Sing."

The next day, the weather was a little iffy as we had a round of freezing rain come through. There was no travel advised in the morning. Faith was bound and determined to make it to her day program though, and thankfully things cleared up. Despite the 65 mph wind gusts, I was able to get her there!

The Saturday before Christmas I had scheduled my sister Dawn to do an overnight with Faith. I had been hoping I could either watch the NDSU Bison play in the semi-finals on TV or in person. However, the weekend prior, the Illinois State Redbirds beat them in the quarterfinals by one point!

Instead, I used the time that Dawn was with Faith to finish up my Christmas stuff. Plus, it gave Dawn a chance to take Faith shopping for my gift! My other sister and her family would be in town late Saturday night, so while staying at Mom and Dad's I got to see the Graffs as soon as they rolled into town!

Faith also got to help Auntie Dawn make sugar cookies!

The week of Christmas, Faith only had one therapy session and two days of her day program. Since my brother and his family were also in town, we decided to get together with them at Caribou Coffee on Faith's way to her day program. It was the only time that it worked out for us to see them.

Faith was so happy to have gotten to see "the girls" and her aunt and uncle. We had a nice visit and of course the coffee was delicious!

Faith with Mark, Kenzie, Sydnee, and Amber

On Christmas Eve, Faith and I spent most of the day just hanging out and enjoying the quiet. Of course, we also had lots of Christmas goodies that we were also enjoying. We then headed out for our favorite tradition, which was attending our church's candlelight Christmas Eve service.

Along with singing both new and traditional carols, there is always a wonderful message about Jesus, who truly is the reason for the season! Following the service, I drive around a bit so that we can look at Christmas lights.

Getting ready for church on Christmas Eve

The next day, we opened gifts, had a nice video chat with Faith's grandparents in Canada, and then headed out to my parents to spend time with family. There were 18 family members in attendance plus one dog! On the way out there, it had started to rain and with the temperature being below freezing, I knew this was bad news. I almost turned back around but decided to forge ahead.

After a few hours of family fun, which included dinner, desserts, a gift exchange game, gift openings, and photos, panic began to set in as there were reports of cars in the ditches from the icy roads and there were no travel warnings beginning to go out. I truly did not want to drive my front-wheel drive van on the ice, so my oldest nephew drove Faith and I home. I prayed the whole way!

Faith with me and her grandpa and two oldest cousins

Me with my sisters

My brother-in-law and nephews from Nebraska

Faith all ready to go out in the ice storm

Scraping ice off of vehicles

Thankfully we arrived safely home, and disaster had been averted. Until later that night that is, when Faith got hit with the flu. She began coughing and then spiked a fever. The next day, she took two 3-hour naps, which is not like her at all.

At night, she was up every couple of hours because she could not get comfortable. I think she was experiencing body aches that were causing an increase in tone. I eventually realized that putting her weighted blanket across her legs helped somewhat to reduce the discomfort.

On Saturday, the 27th, I took her to the walk-in clinic, where she was diagnosed with influenza A. Late that night, I got hit with it. Other members of my family came down with the flu as well. Most of us had the same symptoms: severe congestion, terrible headache that lasted days, fatigue, lack of appetite, and cough.

Yesterday (on New Year's Day) one of my respite staff providers said she could come so that I could go out and grab some groceries and get some rest. Today, Faith and I both finally feel like we are returning back to normal. We are both mainly just really tired still, despite the fact she has been sleeping up to 13 hours at night. She has been laughing today though, which is a good sign that she feels better.

Out and about on New Year's Day (taking pics from my car window!)

Winter Wonderland

Hopefully we will continue to get better over the weekend. I have no idea what next week holds as I don't think Faith will quite be ready to get back to her normal schedule. We will just have to take it one day at a time (sweet Jesus!)

I pray you all had a blessed Christmas season and have a wonderful New Year!

Feeling Thankful for These 10 Things!

2025-11-29T17:36:00.000-06:00

Thanksgiving is of course a time to reflect upon the things for which we are thankful. But like I told Faith the other day, I think we both thank God every day for the blessings he has bestowed upon us.

Each night, we read a scripture together (it's usually one Faith has memorized such as Psalm 23 or John 3:16-21). After our scripture, we recite "Let your light shine before others, that they may see your good deeds and glorify your Father in heaven" (Matthew 5:16). At the end of that verse, we add our little cheer, "Do good deeds! Say nice things! Be kind!"

This little cheer is just a way to remind both of us, that's how God wants us to act every day. Then we pray, which often begins by thanking God for all that He has done for us and then we pray for others. But the other night after prayer time, I asked Faith to tell me some things she was really thankful for. I told her what I was thankful for as well.

This year, we are feeling especially thankful for these 10 things:

1. Beautiful Fall Weather

Prior to this past Tuesday, we had been having the nicest fall I can remember. The grass was still green at the end of October, and we even saw a rainbow, which is rare for this time of the year! It's also kind of rare that we don't get snow until late November.

Faith enjoying some beautiful fall weather.

One of my favorite parts about our mild fall is that we didn't have to don our winter gear for most of the season! In fact, there were some days in November that we didn't wear any coats at all. And if we did, it was usually just a light sweatshirt. Not having to deal with the cold and the snowmake s life a little beat easier for those in wheelchairs!

2. Good Grandparents

Faith came up with this one all on her own! She said she likes having such good grandparents. My parents live about 10 minutes away and it's nice when we need help with something and they can just pop over.

For instance, Faith gets a lot of supplies every month and usually Fed Ex just plops them in the mailroom. It can take quite a few trips with my little cart to get everything up. Last month, my dad brought his dolly over and we did it in just 2 trips! Plus, Mom is always dropping stuff off for us, so she just lets herself in with our passcode and leaves things by our door.

Faith with one set of "good grandparents!"

We also keep in touch with her grandparents in Canada. It's been over 10 years since we have seen them in person, but thanks to technology we are able to video chat with them on a regular basis. Faith is certainly blessed to have all of her grandparents in her life!

3. Our Apartment

It has been just a little over 3 years since we moved to our current apartment, and it has been such a huge blessing! It is nice and quiet, the elevator never breaks down, we have underground parking, they are quick to plow out our parking lot after it snows, and our neighbors are the best!

Faith hanging out in our cozy apartment watching Wheel of Fortune

Oh, and also, we have central air, which is so nice in the summer. There are times I wish we had a little bit of extra space, and I have looked at a 3-bedroom, but it is just too expensive. In those moments, I'm reminded to be content in all my circumstances!

4. Our Accessible Van

I will never stop being thankful for the amazing gift of our accessible van that we got in 2020. God provided in an amazing way through my brother and those who donated to our fundraiser to help us get an accessible van that actually works. The odometer recently hit 100,000 miles and it still runs well.

Faith loaded up and getting ready for our trip to South Dakota

I just recently put new all-season tires on it (just in time before the snow and ice came) and I now have to replace the thermostat, but I will gladly keep up with maintenance to keep it running for as long as possible!

5. Dawn's Cookies

I bet you can guess who came up with that one! Yes, Faith truly loves her auntie Dawn's cookies (as does everyone else!) Faith's favorite are homemade sugar cookies, monster cookies, and chocolate chip cookies.

Faith's birthday cookies from Auntie Dawn (she shared with her day program)

My vote is for her chocolate chip cookies, which are absolutely amazing. When they have sleepovers, you can bet that baking cookies is on the agenda!

6. Aquatic Therapy

Faith has been going to Kids In Motion for her therapies since 2021 and since then, they constructed a new building complete with a swimming pool for aquatic therapy. Faith couldn't go right away, as they needed to get a special lift to get her (and others with mobility challenges) into the water, but it was well worth the wait!

Faith trying some side-lying during aquatic therapy

At first, she would just keep pretty still in the water but after getting used to it, she kicks around and moves her whole body. In fact, she can kick herself across the swimming pool with minimal support from the physical therapist.

Going to aquatic therapy on a weekly basis has helped reduce her tone, which alleviates the need for regular Botox injections. It has become the highlight of her week!

7. Reliable Respite Care

I am beyond grateful for all the excellent care Faith receives when she is not with me. She has wonderful staff at her day program that truly care about her wellbeing and help her to achieve her goals. Her "staff" also includes our respite care providers, Auntie Dawn and our friend Chris.

I don't know what I would do without them! Each of them comes at least once a week and my sister also does one overnight a month, which means at least once a month a get a full night's sleep, without having to get up for anything!

Chris also does overnights every now and then, which she did on Halloween so that I could attend the MercyMe concert with Mom and a few friends. It's just so nice to be able to get out every now and then and not have to worry about Faith at all, as I know she is in the best hands possible.

8. Church Family

Besides our family, we can always count on our church family for support, encouragement, and lots of prayers. We belong to a wonderful church that we have been going to for just over 4 years, and we have been blessed in so many ways.

Faith with some friends from church at a surprise birthday party

Faith had so much fun a couple of months ago when I helped plan a surprise party for a good friend from church. And then, for her birthday, all she wanted was to have a party at church. They truly blessed her with a cake, cupcakes, gifts, cards, and lots of hugs. Another wonderful blessing is that a family from church gave us their used electric piano, which I have thoroughly enjoyed playing once again!

9. Mr. Rogers

Speaking of her birthday, this year she wanted to have a "Mr. Roger's Neighborhood" theme. She has been watching him since she was about 5 years old. That's when he used to be on PBS every day. Since then, he is just on Sunday mornings, but Faith usually watches him on YouTube and also has some of the DVDs.

Faith wearing her Mr. Roger's Neighborhood trolley T-shirt

Besides his calm and gentle demeanor, she loves how he has special guests and takes his television neighbors on field trips. I honestly don't mind watching Mr. Rogers either and am pretty amazed at his insight into children and the way they think and develop on an emotional level. I have even learned some things from him!

10. Living in North Dakota

Yes, it gets cold and snowy, which is kind of hard for wheelchair users and having to transport Faith back and forth to Mandan during the week. But I still believe that North Dakota is a good state for those with disabilities and special needs.

I recently joined a Parents of Adults with Special Needs group on Facebook and have learned that each state is so different when it comes to the programs and other things available for those with special needs.

I just read a post of someone in another state that said their adult disabled child could not attend a day program because they needed assistance in the restroom. I have seen other things about the strict guidelines that day programs have in place, along with long wait times for certain Medicaid waivers, and the shortage of good staff.

We found North Dakota in South Dakota!

While North Dakota has its disadvantages, one of which is the lack of specialists, there are some good things that this state does for those with disabilities. There are many advocates in this state, and as a result of that advocacy, the state implemented a family paid caregiver program, which is something many states have had for years, but others still don't have at all.

It's just so interesting to me how each state is so different, but am thankful that in living here, Faith's medical needs have always been met and there are so many wonderful programs and activities in which she can participate.

Of course, there are many other things we are thankful for and like I said at the beginning of this post, we try our best to have an attitude of gratitude. We will never stop thanking God that He continually provides for all of our needs.

What are some things you are especially thankful for this year?

Faith's Epic 22nd Birthday Weekend

2025-10-27T21:24:00.000-05:00

A while back I had asked Faith what she wanted to do for her birthday. A concert? NDSU Bison game? A mini trip somewhere? Nope, nope, and nope. All she wanted for her birthday was to have a party at the church. She then started naming names of people she wanted to invite. And then she just kept inviting people. (And even recruiting people to help decorate). It was going to be a big party!

Birthday cookies!

Her birthday celebration actually began on Friday. Instead of sharing cupcakes this year with her day program peers and staff, she wanted her Auntie Dawn to make monster cookies for everyone. Faith was so excited to stop by Dawn's office on Friday morning to pick up the cookies.

That evening, I took her to adaptive dance at Northern Plains Dance and was surprised to learn she had a different helper for the evening - her good friend, Maddie! They had fun, but I think Faith just wanted to visit with her instead of dance! After getting home, Faith relaxed to watch Wheel of Fortune.

The next morning, she woke up so excited for her birthday party. Dawn came over to look after her while I went to the church to help decorate and set up. Our friend Jody had made the cake, cupcakes, and had all the decorations. Her daughter and another friend from church were also there and we had fun visiting, laughing, and decorating. When we realized it was 1:30, we made a mad dash to get the food all ready.

Everything's ready just in time!

Faith checking out her cake and cupcakes

Faith got there just in time and when Dawn rolled her in, we yelled, "Surprise!" (She had wanted a surprise party, even though she already knew about it!) Also, Faith requested Mr. Roger's Neighborhood for the theme, so I had asked that people wear their favorite sweater or the color red.

There was even a Mr. Rogers trivia game I had come up with. (The winner was our friend and respite care provider, Chris, who got 11 out of 16 questions right!)

The cupcakes had sayings by Mr. Rogers!

Faith with her beautiful cake!

Faith had so much fun conversing with all of the guests and getting lots of hugs. We tried to get pictures of Faith with each guest, but we didn't end up getting them all. It was really nice to see some people we haven't seen in a long time, which included friends from her homeschooling group and a friend of mine from college.

She also opened gifts and had not one but two rounds of birthday cake candle lightings and the "Happy Birthday" song. (During the 2nd round, Faith blew out her own candles, which is a skill she learned in occupational therapy!)

Faith's cake lighting (first round)

Faith and Rachel

She also opened gifts and was so happy to have her good friend Rachel helping her. (I was also happy that she had a helper, which meant I could just watch and visit!) The open house party lasted 3 hours and by the end of it, Faith was pretty tired and ready to go home and get out of her chair.

In retrospect, I should have only had the party for 2 hours instead of 3 as she got pretty tired. Plus, she had been so excited before the party, that she had already burned up a lot of her energy by the time she got there. Still, it was a very fun afternoon. Faith received so many nice cards, gifts, and some cash.

Family

Grandpa making friends with our neighbors

Some of our church family

Faith and her great aunt, Lisa

Faith with Nate and Shanna

Faith and her friend Maddie

So fun to see my friend Kristi!

Me and Jody with Faith

Faith with Pastor Jon

Opening more gifts!

Even though Faith was exhausted, she unfortunately did not sleep well that night. This kind of goes along with the territory of being out of her usual routine. I think part of it was that there was so much to process, and also in her excitement, her tone was pretty high, which meant it was harder for her to relax. We still made it to church the next day, where she continued to get a lot of birthday greetings.

At home, she also had a few fun video chats with her dad, and her auntie and grandparents in Canada. She wanted to show them all some of her gifts and we even opened a few gifts and cards that I had left at home. While on video, she opened the fun gift she got from Auntie Joh.

Thankfully, Faith slept a bit better last night, but she was still pretty tired today from her birthday weekend. That, along with the fact it was cold and raining outside, I just let her stay home to rest. Hopefully tomorrow, she will get back to her normal routine.

It was a pretty epic birthday weekend for my 22-year-old, and I am already thinking I might have to talk her into a smaller party next year. This one was fun but took a lot of time and energy. I am not much of a party planner, so I was very thankful for everyone who used their gifts to help Faith have a great party! It truly was "a beautiful day in the neighborhood!"

"I hope you're proud of yourself for the times you've said 'yes,' when all it meant was extra work for you and was seemingly helpful only to someone else." Mr. Rogers

Appointments and More Appointments

2025-10-04T18:55:00.001-05:00

One of the unfortunate things about cerebral palsy (CP) are the many co-occurring health issues that go along with it. Because of this, those with CP have more doctors, specialists, and other kinds of providers they see on a regular basis. While the CP itself mainly affects the muscles, other areas of the body are affected as well, which results in more medical challenges.

For instance, besides CP, some of other Faith’s health issues include:

· Gastroesophageal reflux disease (GERD) and other digestive issues
· Scoliosis
· Bowel and bladder incontinence
· General anxiety

Because of these co-occurring conditions, we have more appointments than the average person. At times, it can all be a bit overwhelming.

Faith enjoying a nice fall day

On September 23^rd, we ended up in the ER because I noticed Faith was much more tired than usual. She was also insisting that she had pain in her arm and needed to see the doctor. I suspected a UTI, so off we went to the ER. Sure enough, she had one. They even took an x-ray to rule out anything wrong with her arm. That part was fine.

When I told her physical therapist about this, she said that Faith may have been experiencing somatic pain, meaning the pain from the infection was causing other parts of her body to hurt. It was either that, or she knew she didn’t feel right, so she tried to verbalize that something hurt.

I really dislike going to the ER, but it is the best place for them to get a urine sample as they have to use a catheter. She is also much more comfortable in the bed with rails than on the exam table, which makes it easier for the nurses to get the necessary sample. We ended up being there for about 4 hours.

Faith in the ER

That night after taking her antibiotics, she ended up throwing up and was only able to sleep in her chair. (She ended up aspirating on her vomit and developed pneumonitis afterward, but thankfully no infection!) The next day she asked to take the antibiotic by mouth instead of having me put it in her g-tube. It had to have tasted gross, but she took it like a champ, and it was much easier on her stomach. She ended up staying home from her day program the rest of the week recovering.

On Tuesday of this past week, she finally seemed like she had bounced back 100 percent. And it was a good thing, because she had three appointments during the week. Her first appointment was to finally get her back brace. We had seen her physiatrist at the end of June and according to her x-rays, the curve in her spine had increased. He told us a back brace could help prevent it from getting worse. In July we had the appointment to get fitted for the brace. She even got to pick out her own color and design.

Due to a mix up with the order, we didn’t actually get the brace until this past Tuesday. The brace contains a front and a back that gets strapped together at the sides. I questioned though, how we were supposed to do her feedings as there was no way to access her mic-key button with the brace on. We were told to just take the front part off, which I did not think was convenient whatsoever.

In the midst of everything, we celebrated 3 years of living in our current apartment!

On Wednesday, Faith had aquatic therapy, which she had missed the previous week due to being sick. She was happy to be back in the water, and even did some side-lying, but I noticed that she did not seem to be feeling well.

Normally, she loves it when the physical therapist spins her around in the water, but this time, it seemed to upset her tummy. She had just gotten done with her antibiotics the night before, so maybe her tummy wasn’t quite back to normal. We ended the session early.

After her day program, we had a surprise birthday party to attend. I knew it had been a busy day for Faith, but she was so excited to go to the party and ended up having the best time ever! We didn’t get to bed until after 11 and then had to be up the next day to get x-rays taken while wearing her brace.

Faith feeling better and attending a birthday party!

Her physiatrist wanted to ensure the brace fit properly and that it was doing the job of helping to straighten her spine. Faith had been very anxious for this appointment as this doctor usually gets her out of her chair and onto the exam table so that he can check her range of motion in her arms and legs.

He also puts her in a prone position to assess her back, which she hates! Normally, these appointments last well over an hour, but as luck would have it, the doctor had to be at day surgery, so the appointment was only about 15 minutes -- not enough time for Faith to get out of her chair. She was so relieved!

While the brace seemed like a good fit, and it did reduce the curve in her spine, the doctor wasn’t happy that it didn’t have access to her mic-key button, as stated on the order. So, now we get to make another appointment so that we can get it adjusted.

Faith in her back brace, which needs some adjustments

Next week, Faith also has a meeting with her occupational therapists and DME provider to discuss the possibility of getting a power chair sooner rather than later! Another appointment she has will be with a mental health provider for an evaluation to see if we can improve her coping skills when she is anxious or feeling stressed. I really don’t want to put her on another psych med, and her primary care provider suggested she try counseling, especially since Faith enjoys interacting with people. Then, she was one more day of aquatic therapy before we need to get more visits approved through Medicaid.

Faith’s schedule is full, and in the midst of transporting her to her day program and all of these appointments, I get to plan a birthday party for a soon-to-be 22-year-old. There truly is never a dull moment!

Faith's 73-Day NICU Stay

2025-09-20T19:41:00.003-05:00

September is NICU Awareness Month. For those who don't know, NICU is an acronym for Neonatal Intensive Care Unit. According to World Metrics 50,000 premature babies in the United States receive care each year in the NICU.

The average NICU stay for a preemie is 25 days. Honestly, that number surprises me, as I thought it would be much higher than that. Along with preemies, full-term babies born with certain health issues, such as respiratory distress, jaundice, and other kinds of infections receive care in the NICU.

Tiny Faith in her isolette at Mayo

But for Faith, whose untimely birth consisted of an emergency C-section 11 weeks early, it took 73 days before she was discharged. Those 73 days were a major emotional rollercoaster! And for many reasons, one of which was being nearly 600 miles from home as Faith was born at the Mayo Clinic in Rochester, Minnesota. (You can read what led up to that on my post, October 4, 2003: A Day I'll Never Forget.)

Then, after she was born, I only saw her for a few minutes before she was whisked away to the NICU. It was days before I could finally hold her, and when I did, she was laying on a pillow, hooked up to all kinds of lines and wires. Nothing was like I had imagined it would be!

Faith hooked up to her CPAP

Faith shortly after the first bath I had ever given her

After getting used to the NICU care in Rochester, we were told she was doing well enough to be air-ambulanced (without her parents) to a NICU in North Dakota. Talk about stressful! Little did we know at the time, that Faith would be spending Thanksgiving, Christmas, and New Year's in the NICU in Bismarck.

Getting ready to be Transported from Rochester to Bismarck

Her dad and I tried to visit her as often as we could, although sometimes we would get kicked out when nurses rotated shifts or they had to do a procedure on another patient. We learned how to change her diaper and get her dressed, with our hands going through the little holes in the isolette, all while keeping her tubes and lines intact. One of my favorite things about our NICU experience was kangaroo care, which is when I tucked her inside my shirt in order to maintain skin-to-skin contact.

Along with kangaroo care, our days were filled with seeing the doctor and other specialists, evaluations with physical therapists, and mostly just sitting in rocking chairs close to her isolette listening to music, reading, praying, and jumping every time an alarm on her monitor went off. Every now and then we had visitors, but most of them weren't allowed inside the NICU and they could only see Faith from behind a window.

I was able to hold her much more often upon our arrival in Bismarck

Her dad and I also managed to go home to Watford City a few times, but I always felt so guilty for leaving Faith behind. Because home was 180 miles away, we were blessed to be able to stay at the Ronald McDonald House just down the street. When we weren't at the NICU, we watched TV, ate goodies, visited with other parents, and drank too much coffee at our home away from home.

The Ronald McDonald House - our home away from home

During her NICU stay, I was devastated to learn that she had suffered a type of brain damage called periventricular leukomalacia when she had been born. Another difficulty I faced was seeing other babies who arrived around the same time as Faith, or after, and being discharged before Faith. One baby only weighed 4 pounds, and she could already go home! I knew it wasn't right to compare, but all I could think about was the day we could bust out of the NICU and get Faith home.

But there were happy times as well. I rejoiced at every ounce she gained, every step she took to being out of her isolette and into a regular crib, every time she maintained her body temperature, every time her feedings increased, every time she ate without her heart rate dropping, and even every time she cried, as that meant her lungs were good and strong. Through it all, we had received cards, gifts, words of encouragement, and many prayers.

Faith doing some tummy time - she is gaining weight!

Holding my sweet little girl

It doesn't always work out this way for preemies, but her last day in the NICU fell on her original due date of January 5th. I will never forget the day we bundled her up in her fuzzy yellow outfit with the hood on it and wrapped her in her car seat for the trip home.

It was brutally cold, but the sun was shining, and the roads were dry. At home, there would be many days that we suffered from post NICU stress disorder (PNSD - a term her dad made up but seemed like a real thing). Even so, it was so wonderful to finally be home.

Although Faith's NICU days were nearly 22 years ago, they will forever be etched in my mind. My heart truly goes out to parents who have been through or are presently having a similar experience.

5 Fall Things Faith Loves

2025-08-27T15:56:00.001-05:00

I swear we just flipped the calendar to August and now September is right around the corner. How can that be? School has started for some of Faith's cousins and the air is a bit brisk during the morning hours.

Fall is definitely my favorite season, but for Faith, I think she likes Spring better. She loves it when winter is finally over and there are no more threats of snowstorms to ruin her plans! That being said, she is looking forward to some things next month and during the upcoming fall season.

1. Fall Leaves/Fun Flavors

One of my favorite parts of transporting Faith back and forth to her therapies and day program is that we get to cross the Missouri River twice a day. We love looking at all the trees by the river, the boats in the water, and even some wildlife like antelope, wild turkeys, and lots of birds.

Along with the pretty leaves, there is a cool crisp feel to the air, and the mosquitoes are long gone. Lots of fun flavors make their comeback in coffee shops and other places that Faith and her friends frequent while at their day program. Faith loves pumpkin cookies and pumpkin muffins, and yes, I'll have a pumpkin spice latte, please! (You can even buy me a cup of coffee right now!)

Faith and pretty fall leaves!

2. New Wheel of Fortune Episodes

Faith cannot wait for new Wheel of Fortune episodes to come out. During the summer, they play reruns, but she doesn't' want to watch them. On the weekends, she will watch episodes we have recorded, though. We have over 200 episodes of Wheel of Fortune on our DVR. Soon though, I'll need to replace my DVR box for an updated one and we will lose all our recordings. Thankfully, Faith can still watch past episodes of her favorite show on YouTube!

Faith has really come around to liking Ryan Seacrest (we were kind of hard on him in our review). She even asks people, "Are you a Ryan Seacrest fan?" There are many occasions when we are watching Wheel that I'll say, "Pat would never have done something like that!" But I guess if Faith has moved on, maybe I should, too!

I need to get an updated picture with Vanna and Ryan Seacrest!

3. Adaptive Dance

Last year, Faith participated in 3 sessions of adapted dance classes at Northern Plains Dance (NPD). She even got to perform onstage at the Belle Mehus for their spring showcase. She is looking forward to this opportunity again this fall.

There are many different things Faith gets to do in adaptive dance. Her favorite is the fast-slow dance, in which they move according to the speed of the music. She likes to go fast! The teacher tries to help the students identify what moods they might be feeling as they listen to different types of music. She'll ask if the music is light or heavy and try to get them to move accordingly. They also use ribbons, balls, a parachute, and other dance props. So, along with learning about music and dance, she has lots of fun!

Faith with one of her dance partners at NPD.

4. Her Birthday

Of course, the one big event Faith can't wait for in the fall is her birthday! It's so hard to believe she will be turning 22 years old! Every year, she wants some kind of party, but I'm not sure yet what we are going to do for her upcoming birthday. Last year, we had a special dinner at our pastor's house, went to a concert in Fargo, and she started adaptive dance on her birthday followed by a little surprise party at home. It was a lot!

This year, I do have a little surprise in mind for her, but I'm still working out the details, so I don't want to give anything away. I think no matter what we end up doing, I'm sure she will have lots of fun and be showered with love! By the way, she enjoys watching recorded video greetings, so feel free to send those my way for her!

Faith is excited about cake during one of her celebrations last year!

5. Football

OK, so maybe this is something I am looking more forward to than Faith. I don't watch NFL, but I do try to watch the NDSU Bison games on TV. (I may have to watch some Minnesota Vikings games this year, since Carson Wentz will be their backup quarterback!) She tolerates football for a little bit but would rather watch her shows.

Sometimes when I'm in my room yelling or cheering as I watch on TV, I'll hear her in the other room laughing at me. While Faith might not like watching football on TV, she definitely likes seeing it live. A few years ago, my sister and I took her to Fargo for a game, and she loved it. I would like to take her again sometime, so we will see what happens this fall!

Faith at her first live football game. Go Bison!

This sign was a gift to Faith from her Auntie Dawn. I just leave it up all year round!

Besides all of the above, I also like fall clothes, going to women's Bible study at church, shutting off the air conditioning, cozy blankets, pumpkin pie, and Thanksgiving. What are some of your favorite fall things?

By the way, if you want to keep up with Faith and her adventures on a more regular basis, be sure to like or follow Faith's Mom on Facebook!

It's Been a Weird Week

2025-07-26T18:19:00.000-05:00

Last weekend, Faith seemed to be struggling with a cold. On Sunday morning, I thought she had slept it off, but unfortunately, it hit full force that evening. Because she was so stuffed up, and had a lot of drainage, she did not sleep well that night. I tried to put her adjustable bed up as much as I could, but it still wasn't enough. Around 3 in the morning I put her in her chair where she slept for a few hours. After I put her back into bed, her sleep was still pretty disruptive. Finally, around 8:30 she had had enough and just wanted to get up for the day.

On Monday, we called to cancel her Tuesday therapy sessions. She was bummed about having to miss aquatic therapy and occupational therapy but took it well. I was trying my best to help her feel better by giving her nose spray (which she was actually asking for), keeping her humidifier going, and also doing this face mask thing that makes steam so that she can breathe it in. She calls it her inhaler.

On Wednesday, she really didn't seem to be improving much, and I was concerned she might have a sinus infection because of how stuffed up she was, plus she was just so quiet and not her normal self.

Faith last week before this awful summer cold.

Thankfully, the normally busy walk-in clinic was pretty quiet, and we were called back fairly quickly. In the exam room, the nurse did her best to get Faith's vitals. Getting her blood pressure can be tricky, because she stiffens up her arms, which makes it hard to wrap the cuff around her arm and get the stethoscope in the right place.

Another thing that can be difficult is getting an oxygen reading with a pulse oximeter. Her fingers are pretty tiny, and she has a hard time keeping her hand still. After a couple of tries, the nurse had to use the sticky sensor that wraps around the finger. Her oxygen was 97, so that was good! Her temperature was normal there, but at home it had gotten up to 99.9 degrees.

After getting a few get well hugs from the nurse, we were left to wait for the doctor. I honestly can't remember if we had ever seen the doctor we saw. Every time we got to that clinic, she sees someone different. The one thing Faith was concerned about was the tongue depressor when they looked down her throat.

The last time we were there, they wanted to check her for strep. She opened her mouth for the doctor, but he had wanted to get a better look, so he tried to put a tongue depressor in her mouth. She was not having it, and instead of keeping her mouth open, she bit down on it and clamped her mouth shut. They ended up taking blood to check for strep, which came back negative.

Faith was more cooperative with this doctor, who was quick to look in her mouth when Faith opened it. The doctor said her throat looked fine. Her lymph nodes were slightly swollen, but she did not think Faith had a sinus infection. She said to call her if she spiked a fever over 101 degrees or was not getting any better. She also recommended DayQuil to help with her congestion.

Before leaving, Faith asked the doctor for a hug, and she was happy to oblige. She told Faith she was pretty amazing for having such a positive attitude while not feeling well. Faith also made a point to say goodbye to the receptionists and asked for a sticker and hug. One receptionist gladly went to get stickers for her and give her a hug.

It's been a weird week, but I have Jesus and coffee to keep me going!

Afterward, we went to Wal-Mart to get her medicine and a few other necessities. Faith seemed starved for social interaction and said hi to pretty much everyone she passed by. (Well, I guess she's always like that!) She even asked one guy for a handshake, and I had to tell her that we could not shake people's hands at Wal-mart! But then we ran into a friend of ours, so she did get a hug from her!

On Thursday, Faith finally seemed to be making a turnaround, so I told her she could go to her therapy session if she wanted to. Thankfully, it wasn't until 11:00 a.m., so we didn't have to get up too terribly early. She did really well driving the powerchair!

Faith during a recent occupational therapy session.

After that, since it was such a beautiful day, we decided to go for a walk by the river. I figured the fresh air and soaking up some Vitamin D would be helpful. She was pretty tired after that, so we made our way home.

As we drove by the building across from ours, I received a nudge from the Holy Spirit to check the mailroom. (There is no other explanation for it!) A couple of days prior, I received notification that FedEx had delivered the sheet set I had ordered for her new mattress. I had to order the sheets online because her bed is a Full XL, which is very rare, and they don't sell that size of sheets anywhere locally.

That's my package, but it's at the wrong door!

Anyway, I saw the picture of the package sitting in front of a door, but it wasn't our door! So, I figured FedEx had delivered them to the right apartment number but the wrong building. I was so annoyed that they had put it by the wrong apartment. I decided to just pray about it and believe it would all work out. When I checked inside the mail room our package was there!

The next day, Faith and I took it easy. We called a friend, whom we talked to for nearly 2 hours! Then we had to do a grocery pickup at Wal-Mart. The only thing I really needed was bottled water, but I decided to buy her food in case I had a chance to blend. The main thing was just finding something to do that would get us out of the apartment.

I had also messaged one of our friends in Faith's room at her day program to ask her a question. She asked if Faith was OK and when I told her what she had been struggling with all week, she said, "Thanks for keeping her home!" It's a huge blessing to be able to do so, and one of the reasons I can is because of the family paid caregiver pilot program that North Dakota enacted a year ago.

Today, we were invited to the park with some friends, and I was actually hoping it would work out for us to go just for something to do. But unfortunately, it is really hot here today and we are under a heat advisory. I knew that would not be good for either of us, so we decided to not go. We did get out and go for a short drive, though. Faith was craving chocolate chip cookies from McDonalds, and I wanted a soda from Fizzily (the Potter Pop is really good if you like root beer!)

While cruising around, we always listen to music. One of Faith's recent song discoveries is "Fishing in the Dark", so I found a country album with that song, along with other country hits from the 80s. The other songs she likes on that cd are "I Love a Rainy Night," and "Cry, Cry, Cry." I tried to get her to listen to "Swingin'" but she does not like it at all!

Faith tried both of my treats but didn't like them. She prefers cookies!

Even after resting all week, Faith is still a little bit stuffed up and has a low-grade fever. It's only 99.2 but I honestly thought she would be feeling 100 percent by now. This cold has just been a bugger. And I must admit, I am starting to feel very tired. I think I have been fighting off the virus, and I'm just glad I've stayed well to look after Faith. I am really hopeful though, that next week will be better!

Faith's 4th

2025-07-06T17:31:00.001-05:00

Every year, the one thing Faith wants to do for the 4th of July is go to the parade in Mandan. It surprises me how much she loves parades, considering the noise and crowds of people. About 20,000 people attend the annual 4th of July parade, and it's filled with very loud firetrucks, big machinery, trucks, and other kinds of loud noises. This year, there was also the concern that it would be more crowded than usual. This was due to the fact that part of the normal parade route was under construction.

Besides all that, the Parade starts at 10:00, which means Faith needs to wake up pretty early so that we can arrive in time. Neither of us had slept well the night before, so I was already concerned that she didn't get enough sleep to get through the long, busy day.

I let her sleep as late as possible and prayed for us both to have enough energy to make it through the day. It helped that we could do her morning feeding enroute and also during the parade. She normally doesn't like to do her feeding on the go, but sometimes we really don't have a choice.

My sister Dawn and I had our usual plan in place to go to her friend's house, and he would drive us down to Main Street and then take the van back to his place. This way, we wouldn't have to worry about parking and finding a place to let the ramp down.

We were surprised to get to Main Street and find there were actually quite a few spots. We made our way to where our friend Britany and her family were sitting and settled in to watch the parade. Although there was some cloud cover, it was very humid, and I was concerned Faith was going to overheat.

I had brought water with electrolytes in it and gave it to her midway through the parade. Also, every time someone handed us icy pops, I placed them on Faith to help cool her off.

At the parade!

It's always nice to have a spot saved for us!

She was very excited to see the Kids in Motion float and a few of her friends from there came over to say hi and give her candy. After about an hour of the parade, she decided she had enough. That was fine with Dawn and I, because we were hot!

Not only that but leaving early allowed us to get ahead of the traffic. Normally it takes 3X as long to get back to Bismarck after the parade due to all the traffic. This gave me enough time to water my pastor's wife's flower garden, which I had been doing all week while they were on vacation.

Courtney from Kids in Motion comes running over to say hi and give Faith candy!

Kim comes over to give Faith a peck!

Making a pit stop to water the flowers (there were way more than this!)

At home, I got Faith out of her chair and let her relax for a bit before heading out for the next event. Two of Faith's cousins had graduated in May on the same exact weekend, one in Nebraska and one in South Dakota, and most family members were unable to attend.

The idea was to have the grads and their families here this summer for a double graduation reception. The only weekend that worked was the 4th of July. But what better weekend for a party!

Because of the heat and humidity Faith and I both ended up staying indoors. I honestly don’t know how people were able to just sit out on the porch, but like my mom said the days of sitting outside is much too short in North Dakota so they take advantage of it while they can!

The smaller kids had a blast playing in the kiddie pool. The older ones had fun shooting off fireworks. We stayed as long as we could, but I hadn't brought any of Faith's supplies to get her changed, so we headed out after being there for about 3 hours. She was coming to the end anyway and was getting very tired.

Congrats grads - Donnie and Sydnee!

The grads and their fams!

Faith hanging out indoors with Auntie Amber and Cousin Beth

Cooling off in the pool

Hanging out on the porch!

We got home and just chilled and I knew she wouldn't be up to going anywhere for fireworks. Thankfully, the people who live across the road from us go all out on the 4th, so Faith did get to see some of their fireworks. After a while though, she actually asked if she could go to bed.

I on the other hand stayed up until well past midnight enjoying the rest of the fireworks show. Some of them were very loud, and I am amazed Faith was able to sleep through the noise. Granted I had her fan and her sound machine going, but still!

Enjoying the fireworks from our living room!

Faith spent the next day relaxing, and I thought it was cute when she said, "Isn't it nice to have such a relaxing 5th?" It was indeed very nice!

Faith Finally Gets Back to Aquatic Therapy

2025-06-23T14:35:00.001-05:00

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The very first time Faith ever tried aquatic therapy was 2011 when she was 8 years old. When she got into the pool, she cried during the whole session. But in the following weeks, she came to love getting into the warm water. She most likely realized how good it felt to get into the therapy pool, where her tone decreased and she could feel more relaxed. It became the perfect place to do her arm and leg stretches.

Faith enjoying aquatic therapy when she was younger.

Aquatic therapy also gave her a chance to get some good exercise and just have fun. It even helped her get used to swimming pools in general. When she traveled, she loved getting into the little kiddie pool. She also liked to go swimming during the summer.

Unfortunately, the aquatic therapy pool eventually closed so she was no longer able to go. And as she grew, it became harder to get her into and out of the pool without the help of a lift, which most community pools don't have. It also became harder because there was really no place to get her dressed after getting out of the pool, as she needs to be lying down. So, even though she loved the water, swimming was no longer a part of her life. That is, until she was older and began going to her day program.

Relaxing in the pool while on vacation in Winnipeg.

I was so excited when her staff told me they took their participants to the Aquatic Center at Bismarck State College. Turns out, this facility has a lift, as well as a ramp, that allows one to be rolled into the water (in a special chair that can get wet). Although the water in this pool would not be as warm as the water in a therapy pool, she could still get some exercise and enjoy feeling more relaxed in the water.

While I was excited for Faith to get a chance to go swimming again, she was a little hesitant. For one, it would be a lot different than what she was used to when she was little. And for another, I would not be with her, and she would need to rely on her staff to get her in and out of the water. I encouraged her to give it a try, and she ended up having a lot of fun!

Although they tried to go swimming once a week, it didn't always turn out that way. There were also times that the lift or the ramp needed to be repaired, so she couldn't go for long stretches of time. She would always ask me, "When can I go swimming again?"

Faith swimming with day program staff. Check out her buoyancy!

Eventually everything was fixed, however, during winter, they weren't able to go when the temperature dropped below freezing. And then she transferred to another room in her program, so the swimming schedule was different than what it had been.

Thankfully, the place she has been going to therapy for the last four years, had just built a new building and it had an aquatic therapy pool! I was a little surprised when she said she didn't want to do it, but I think it's because, once again, it was going to be different than what she was used to. This time, however, I could go with her, and she eventually agreed to give it a try.

In order to get ready for aquatic therapy, I needed to get some things together for her. She had to have a reusable swim diaper that would go over a regular disposable swim diaper, as she need to have triple coverage, due to the rules of the pool. I also found a swim cap to protect her hair from the chlorine in the water. I must admit, those swim caps are harder than it looks to put on someone's head!

Faith getting used to the lift at aquatic therapy.

Because there might be weeks she went to aquatic therapy as well as swimming with her day program, I also wanted to buy Faith a second swimsuit. This proved to be much harder than I thought it would be! I had found her old swimming suit at Kohl's. It was perfect for her as it was swimming shirt and shorts that came as a matching set.

Unfortunately, Kohl's no longer carried the same kinds of suits it used to have and neither did Wal-Mart, Target, Old Navy, or anywhere else I looked! Another thing that was different is that swimsuits no longer seem to come in matching shirts and shorts, so you have to buy each piece separately.

Also, for kids' sizes, most swim shirts were long sleeved, which would be much more difficult to get her in and out of. I did find a kid's swim shirt and shorts online, but both were too small. I resorted to looking for adult swimsuits in a small size and had better luck with that. Finally, I found a swim shirt and shorts that worked well for her and fit just right.

By the way, the main difference between a therapy pool and a regular one is the temperature. In an aquatic therapy pool, the temperature is between 89 and 94 degrees. This is about 10 degrees warmer than a regular swimming pool. Another factor with aquatic therapy, is the room temperature should be warmer than the water. The warmer air makes it possible for the muscles to stay relaxed when getting out of the pool. Because it's so warm, I make sure to give her some water with electrolytes afterward to keep her hydrated.

The warmer air temperature is great for helping Faith's muscles stay relaxed and also helps keep her warm when getting dressed, For me though, it's a bit of an adjustment! It's over 90 degrees in the room and her sessions are an hour long. Needless to say, I try to dress light and drink a lot of water while watching her swim. I don't actually start sweating though until I'm getting her dressed!

Faith relaxing on a flotation device with her therapist and PT student.

Faith's physical therapist said that most people with high tone have a tendency to sink instead of float. For this reason, it takes a lot of support to keep them above water. Faith, however, has excellent buoyancy! I know she doesn't get that from me, as I sink like a rock and have never understood how some people can doggy paddle so well in the water. Her aunt Johanna is very buoyant, so I'm guessing that's where she gets it from.

After aquatic therapy, Faith has an occupational therapy session in which she practices driving a power chair. Her therapists had hoped that swimming first would help decrease her tone, so that she could drive better.

However, the aquatic therapy is tiring, so sometimes I'm not sure how beneficial it is to have an OT session right after aquatic therapy. Also, it seems that sometimes she has a hard time adjusting from being in the water to having to fight gravity on land. No matter what though, she always gives it her best effort.

Faith driving after aquatic therapy.

I'm very thankful for the opportunity for Faith to get back into aquatic therapy. It has so many amazing benefits for her, such as:

Allows muscles to feel relaxed
Relieves joint pressure
Strengthens muscles
Provides a chance to exercise while having fun

In the water, Faith can reach better with her arms, as well as bending and extending her legs. She also loves to have her therapists spin her in circles in the pool and sometimes she wants to kick her legs. She has so much fun in the pool that she has a hard time getting out.

It was interesting to me that after our trip to South Dakota, she was very out of sorts, and I think it was due to just being out of her routine but also, she may have felt sore from being in her chair so much. The thing that got her back on track was her aquatic therapy session. I can imagine how good it felt for her to get into the warm water!

She also still gets to go swimming with her day program when it fits into her schedule. I'm just so very thankful that she has these opportunities to keep doing something that she absolutely loves to do!

Faith's Monumental Visit to South Dakota

2025-05-29T17:38:00.001-05:00

When I received my niece, Sydnee's graduation announcement in the mail, I thought it might be the perfect opportunity to visit my brother and his family for the first time at their home in Spearfish. I also thought it would be the perfect opportunity to see Mount Rushmore, which I had never seen before!

My nephew in Nebraska was graduating that same weekend, and my sister Dawn and I tried to put together a plan where we could go to both of their graduation receptions. I knew though, that Faith would feel left out and would want to go, too. I also knew it was going to be difficult to find someone to look after Faith over Memorial Day weekend.

Our finalized plan involved Dawn traveling to South Dakota with me and Faith and then her flying to Nebraska by herself. Faith and I would then drive back to Bismarck by ourselves.

3 adventurous travelers

I must admit, as the trip got closer, I started to get a little anxious about how Faith was going to do with so much driving, especially just the two of us on our way back. What if something went wrong? What if the van broke down in the middle of nowhere?

I tried to put my anxious thoughts to rest by just being as prepared as possible. I ordered a transfer board, in case the need arose for me to get Faith out of her chair by myself. I also had my nephew and Dad look over the van to ensure all my fluids levels and my tires were okay. Most importantly, I prayed and had lots of people praying for me. I knew if something happened, God would help me along the way. Instead of being anxious, I chose to get excited about the trip. Faith was excited, too!

We left on Friday morning and Faith was fully energized. Like, almost the whole way there! Whenever she is around her auntie Dawn, she gets excited and laughs a lot. Along with being around Dawn, she was also energized by listening to some of her favorite music along the way. Some of our road trip CDs included:

One of the best parts about traveling to western North Dakota and down into South Dakota was the beautiful scenery! Many would probably find it boring, but I loved the hilly landscape with buttes scattered in random places and the never-ending horizon.

Thanks to some much-needed rain, everything was so green!

We also saw a coyote, some buffalo, hawks, sheep, horses, and lots of antelope. There were also many herds of cows along the way, which put Faith in a good mooooood!

Dawn and I had fun finding stats on the internet about the places we traveled through. Like, did you know Slope County in southwest North Dakota has just 706 people, making it the least populous county in the state? At 1,218 square miles in size, that means there are only .60 people per square mile! If you like wide open spaces, come to Slope County!

About 5 hours after setting out, we arrived in Spearfish. After settling into our hotel and getting Faith out of her chair for a bit, we headed down to the restaurant attached to the hotel. Faith even made a few friends in the restaurant and our waitress was very generous in giving Faith a high-five every time she passed by our table. Back in our room, Faith did a shortened version of her good-night routine.

The Black Hills are just ahead!

I was surprised when she slept like a rock, straight through the night. I think it helped that I had brought her white noise sound machine to drown out unfamiliar noises. Still on central standard time, Faith awoke at 6:30 in the morning and we decided we might as well get a head start on our jam-packed day.

After grabbing breakfast and coffee at a drive-thru, the three of us made our way to Rapid City and then on to Mount Rushmore. Going through the Black Hills was breathtaking. Dawn and I pointed out several pretty sites along the way. She also reminisced about the last time she had been there with her kids and also with her friend and granddaughter not too long ago.

After finding a handicapped parking spot in the huge parking garage, we made our way up the accessible path to see the amazing memorial. Upon arrival, I was disappointed that there was fog covering the faces. We decided to check out the gift shop in the hopes that things would clear up. That was one thing Faith was looking forward to: going shopping with her aunt!

Hanging out, waiting for the fog to clear.

I'm happy to report the fog did clear up and we got some good pictures of us and the famous faces. As we left, I noticed a park ranger standing at the entrance and I asked if I could take a picture of her and Faith. She kindly obliged and it ended up being one of my favorite photos of the trip.

Mount Rushmore!

So amazing!

Faith with Carlie, the park ranger.

In leaving Mount Rushmore there wasn't really a clear sign as to which way to go in order to go back to Rapid City. We thought we picked the right way, but as we drove, we kept pointing out things that didn't seem familiar to us. Like all the downed trees in one area or the pretty lake. The dead deer on the side of the road looked familiar, though!

Instead of driving through Keystone, we instead came to Hill City. I didn't realize that both of us were so navigationally challenged! We did eventually make it to Bear Country U.S.A, which was a lot of fun! I thought Faith would especially enjoy this since she still loves the "Going On a Bear Hunt" book and all of the Bear Hunt videos she finds on YouTube. Dawn and I tried to make our own, but Faith was not impressed!

It was fun to see all the bears!

We had been disappointed not to see any waterfalls, so these ones had to do!

Faith was having so much fun!

Finally, we drove to Rapid City and found the airport so that Dawn could pick up her rental car since she had to drive to the airport early the next morning and fly to Lincoln, NE. It had been a long day, but it wasn't over yet! We got Faith out of her chair as soon as we got back to the hotel. After a quick break, we headed over to my brother's house to celebrate the graduate!

His wife Amber did an amazing job with all the decorations and the amazing food and cupcakes. It was nice to meet some of their friends and also to see Amber's mom. Faith was insistent that she meet their cat, Cash. The girls were nice enough to round him up for her so that she could at least see him in person! Faith loved spending time with her cousins and getting lots of hugs from them!

We made it to Sydnee's graduation reception!

Faith with Uncle Mark, Auntie Amber and her cousins, Sydnee and Kenzie

Faith and Sydnee

We knew that Dawn's youngest son and his family were also in the area (we had run into them at Mount Rushmore), so we tried to wait to see if they were going to show up, but it was getting late, plus Dawn had to get up super early to drive to the airport. We left and then got through Faith's good night routine and said goodbye to Auntie Dawn.

The next morning her uncle Mark came over to help me get Faith out of bed and into her chair. I was so appreciative of his help! He was also supposed to bring Faith some cupcakes, but he had accidentally left them behind. He was bound and determined to get them to us though, so while Faith and I stopped at City Brew for breakfast and so that I could hook up her feeding, he ran back home to get them.

We got the cupcakes!

It was then homeward bound. I had filled up with gas and was hoping I could make it the whole way back without stopping. Our only stop was Buffalo, SD so I could unhook Faith's feeding and tilt her chair back so that she could be repositioned and more comfortable. Neither of us wanted to stop anywhere else until we got home. And five hours later, we made it, without any trouble!

Faith does so well with traveling, but I knew I was asking a lot of her, especially to be in her chair for so long. She did great on the road, but at home she had a few meltdowns, which was totally expected. I'm sure her body was sore, plus she was so tired and out of sorts from not being in her usual routine. Needless to say, aquatic therapy on Tuesday morning was exactly what she needed.

And what happened to Dawn you might ask? Well, she ended up getting stranded in Lincoln due to flight delays in Denver. Thankfully, my brother-in-law was able to rescue her, and my sister ended up taking her to Omaha the next morning, so she could fly out from there instead. When she finally did make it back to Bismarck, the timing worked perfectly for me and Faith to pick her up at the airport.

Dawn made it to Nebraska for our nephew's reception!

Looking back, I'm actually quite amazed we pulled off getting Faith to Mount Rushmore and a graduation reception all in one day. Our monumental trip to South Dakota was definitely a trip the three of us will remember for the rest of our lives!

Faith's Spring Dance Performances

2025-05-07T15:31:00.003-05:00

Lately, I've been feeling very fortune to live in a community that provides so many activities for those with special needs and disabilities. Last year on her 21st birthday, Faith began taking adaptive dance classes at Northern Plains Dance (NPD). They offer five sessions throughout the year. We opted out of the session offered in January and February, mainly just to avoid being out in the brutal weather winter more than we have to be.

Faith working on some dance skills with ribbons.

During the February/March sessions, her class began practicing for their "big performance," which would take place during the student showcase. All of the dancers at NPD participated in this showcase. Her class would be performing to "Can't Stop the Feeling" by Justin Timberlake.

Faith was excited not only because of the song, but because both of her dance partners would be on stage dancing with her. During the sessions, her partners take turns with her from week to week, so she doesn't really get to work with both of them at the same time.

Faith's dance partners helping her learn the dance routine.

Their performance was held at the Belle Mehus, which I thought was really cool considering we had gone to that building so many times for the annual Nutcracker performance, along with the spring performances. Faith has watched her friends on stage for so many years, and now she was going to get a turn to be up there!

Getting ready to go to the Belle Mehus!

She was very excited about it, but I was a bit nervous. I just wasn't sure when she needed to be backstage and where I would be when she was onstage. I just followed a parent that had done this before! Thankfully, it all worked out just fine, and she had a great time! She even had some support in the audience. Her grandparents, an aunt, a few ladies from church, and another friend had all come to watch.

Her grandparents and aunt in Canada were even able to purchase a ticket to watch the live stream of the event. Her dad also watched that way. I love that they had the option to watch from afar! (I did not record the performance, but NPD will be posting a recording of it. Once it's up, I will try to add a link to this blog post.)

Faith onstage!

All of the participants and their dance partners.

Shortly after her performance was over, she began practicing for her upcoming wheelchair dance performance. This performance was part of Dreams In Motion, a local organization the provides adaptive sporting events for those with mobility impairments or visual impairments. Every year, the Just for Kix dance studio invites the wheelchair chancers to perform during their spring show.

Faith was beyond excited for this. When we got to the first practice, we discovered the theme for the spring show was "Here Comes the Sun" as a way to celebrate the upcoming summer season. To tie in with that theme, Coach Lacey decided to focus on Independence Day with a patriotic medley. Some of the songs included:

You're A Grand Old Flag
Yankee Doodle
R.O.C.K. in the USA
Born in the USA
God Bless America

As they went through the routine, I thought it was pretty ambitious. But it came together nicely after just 3 practices! Faith even had a little bit of a solo part during the "Yankee Doodle" segment where she got to "ride" her pretend horsey.

Last year, Faith ended up getting sick after the first practice. She was sick for about two weeks with the flu and then RSV, so she could not participate. This year, she ended up getting sick the Sunday before the last practice. She spent all night with an upset tummy and throwing up. She ended up staying home from HIT and her therapies on Monday and Tuesday. By Tuesday evening, she convinced me she was feeling better, and we made it to the last practice! Phew!

Faith was all smiles during wheelchair dance practice!

On the morning of the performance, we needed to be there at 9:30 a.m., which is pretty early for us! Normally I don't plan to get Faith anywhere before 10! Besides being there so early, another challenge is navigating a very crowded parking lot and getting Faith inside all by myself.

Also, they were going to be performing during the 10:30 and 12:30 shows, which means they would get a break in between, and I really wanted to bring Faith home during that break just to get her out of her chair for a bit. Thankfully, my sister was able to help us and all of that went very smoothly.

Faith is all ready to perform!

Still smiling!

Coach Lacey and her pusher Kay.

The Dreams in Motion Wheelchair Dancers

I recorded the first performance and the little blip at the end is because I was trying to get a flag that someone was bringing to me. Plus, I was trying to keep it together and not cry. It was very emotional, especially when the group got a loud standing ovation!

I was so happy that Faith got to be a part of it this year. The performance happened this past Saturday, and she is still talking about how great it was!

Faith already can't wait for next year's adaptive dance performance and wheelchair dance performances. Besides the actual dancing, these are just more opportunities for her to hang out with other people, make new friends, and be active in the community!

Faith's Blended Diet and Other Things that Help with Her Digestion

2025-04-17T17:56:00.006-05:00

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Ever since Faith was born, she has struggled with her digestion. When she was in the NICU, she would spit up after eating even the tiniest amount of formula. Her dad and I were convinced her tummy was too small to handle large volumes of food. Sometimes when she ate, her heart rate would drop really low, which is why she needed to be in the NICU for longer. She just could not get the hang of eating and breathing at the same time!

Faith receiving food
through an NG tube in the NICU.

Grandma giving Faith a bottle when she was 2 months old.

After finally bringing her home, eating continued to be an issue as she struggled with severe reflux and constipation. We tried various formulas, but she was never able to drink enough formula to gain a lot of weight. She also had trouble burping, and she would cry so hard when her tummy hurt. The only thing that comforted her was holding her and walking around with her.

When we tried feeding her real food, she would only eat a little bit and then stop. Her pediatrician told us to stop trying to give her real food and just focus on giving her formula so she could get the calories she needed to gain weight. But the formula was causing digestive issues, and she still wasn't gaining weight. Eventually she was diagnosed with failure to thrive, and the only alternative was a feeding tube.

Faith feeding herself pancakes when she was 2 years old.

Even with the feeding tube, she continued to vomit after eating. We found that we could only feed her little bits at a time. Her pediatrician recommended doing an overnight feed with a feeding pump, but she never tolerated this as the noise of the pump kept her awake. Plus, I was always paranoid she would move around and get tangled up in the tubing.

Thankfully, though, the pump allowed us to do feedings at a continuous rate, which helped somewhat. Through much of her younger years, however, she continued to struggle with constipation, bloating, and gas.

Faith getting a feeding when she was 4 years old.

Her doctor's remedy for the constipation was to put her on Miralax. I was totally on board with that, until I noticed that she began having increased behaviors after starting it. It also it really didn't seem like a good long-term solution, especially since it is not FDA-approved for children under the age of 17! This laxative can also cause major side effects like bloating, stomach cramps, and nausea.

Thus began the research to help Faith with the digestion issues that have seemed to plague her since birth. About 11 years ago, I took Faith off the commercial formula she was receiving through her G-tube. My thinking was, no doctor in their right mind would tell the parents of a non-tube-fed child to give them formula for every meal. Just because someone has a feeding tube, doesn't mean they should not be able to receive their nutrition from real food!

My Vitamix and just some of the ingredients that go into Faith's blended food.

In order to blend her food, I needed to purchase a high-end commercial blender. I opted for a Vitamix. I bought a reconditioned one and it lasted about 6 years. When it died, I purchased a brand new one and it is still going strong! They are quite expensive but worth it, as you need to liquify every little bit of food so that it doesn't clog the feeding tube or the Mic-key button. It blends things like coconut flakes, sliced almonds, and other foods to liquified perfection.

I eventually changed doctors to one who was more supportive of her blended diet. However, she did want me to see a nutritionist to make sure that Faith was getting the right amounts of fats, carbs, and proteins. When I went, I was shocked when the nutritionist asked me why I was doing all of this when I could just give her formula! I could not believe that a nutritionist was questioning my desire to feed Faith real food!

Making the switch from formula to real food when Faith was 11.

I got most of my support from a blenderized diet group on Facebook. It was so easy to just ask a question, and someone always had an answer. Some of them had been blending for years, so it was a good group to learn form. Another resource that helped tremendously was the Complete Tubefeeding book.

However, it seemed no matter what I kinds of food I added though, I could not get enough iron into her. Foods that were high in iron had a negative impact on her digestion. Because of that, she was put on an iron supplement. She was also not gaining weight as quickly as I had hoped.

One reason for this is because it's hard with a blended diet to get all the calories into the food without increasing the volume. Faith's tummy could only handle so much at one time. In my continued research, I found organic blended food that came in pouches. I thought that would be one way to increase Faith's caloric intake. However, the DME provider told me they would not be able to order it, plus it was very expensive.

In 2023, Faith was hospitalized for some complications following a procedure in which she received a test dose of baclofen. During the hospitalization, they wouldn't allow me to give Faith her blended food. They said they did not know exactly what she was getting, which made it hard to chart her intake. I offered to provide a list of ingredients, but they still refused to let me give it to her.

No blended food allowed in the hospital!

They ended up giving her commercial formula, which I wasn't happy with, but I figured it was just for a few days. After reading about that incident, a friend who also has a child with special needs and a feeding tube told me if that ever happened again, she would bring me some of their Nourish, which is a special kind of feeding tube formula made with whole foods.

The bag of food even lists all the ingredients and how many calories it contains. She told me that she was getting it from one of the local DME providers and that Medicaid actually covered it!

Nourish is made by a company called Functional Formularies and they also make Liquid Hope, which is made for adults with feeding tubes. All I needed was a prescription from her doctor and to change the DME provider from whom we were getting Faith's feeding supplies. Medicaid actually authorized it, and I was able to start Faith on the Liquid Hope.

I noticed that this organic food contained a lot of fiber, which was causing Faith to struggle with constipation. So instead of doing all of her feedings with the organic formula, I decided to just do one feeding of the blended diet that I had been doing. (Faith gets 3 feedings a day). The great thing about this combination is that Faith gets enough iron (no more iron supplements!), enough calories without having to increase the volume, and the right amount of fiber, plus a wider variety of nutrients.

After her hospital stay, I began giving her Liquid Hope through her feeding tube.

Besides her diet, another thing I have used to help Faith with her digestion is a supplement called OmniBlue Ocean Minerals. Along with essential electrolytes, this supplement contains 420 milligrams of magnesium in one teaspoon. I used to have to give Faith a teaspoon a day, but with her improved digestion, she only needs 1/2 teaspoon to stay regular.

I have struggled to find the right probiotic to give her, which is also essential for her digestion and gut health. The one I have been using lately is made by Healthy Genetics and also contains ginger root and a prebiotic. To help combat UTIs (which Faith has also struggled with in the past) I wanted to make sure the probiotic also contained Lactobacillus Rhamnosus and Lactobacillus Acidophilus. She also gets cranberries in her blended food and takes a D-Mannose supplement, both of which help prevent UTIs as well.

I have found that a digestive enzyme helps too. The one I use is a little expensive, but I feel like when it comes to supplements, you need to get high quality ones in order to optimize their effectiveness. Faith's go-to digestive enzyme is made by 1MD Nutrition. (I just give her one capsule a day).

Even though she takes all of these supplements, she unfortunately still struggles with GERD. For that, she is on Prevacid, which helps tremendously. I also add organic sauerkraut to her blend, which is supposed to help with reflux as well.

Faith gets super excited for cake and other goodies!

I hope and pray that I am giving her all the right things she needs in order to overcome her digestive issues. In 2018, she was in the ER for being severely impacted and I never want to go through that ordeal again. In the past, I have also had to resort to giving her enemas if she was getting backed up.

Since starting the Liquid Hope along with these supplements, I haven't had to do that for at least 2 years or more. I should also mention that keeping her hydrated and making sure she gets enough water is also extremely important. Sometimes if I feel she needs it, I add a pouch of Liquid IV to her water.

Since her digestive issues have improved, she seems to enjoy eating other kinds of foods. I think it might be because she doesn't suffer the negative consequences of food like she used to. Of course, some of her favorite foods include cookies, cupcakes, and chocolate, but she'll also eat bananas, yogurt, apple sauce and cereal bars. She also recently started eating peanut butter and jelly sandwiches!

Faith waiting for her friends so they can go eat pancakes!

With her improved diet, she has gained 10 pounds in the past couple of years. I'm guessing when we weigh her again during an appointment this summer, she'll have gained even more weight.

It's taken many years, but I'm so thankful that we are finally at a good place with all of Faith's digestive issues. It's not perfect, but it is much better than it was before.

I could not have done it without God's guidance or the help and support of those who also have children or loved ones in the same boat.

Cerebral Palsy Awareness Month: Reflecting On Our Journey So Far

2025-03-23T15:25:00.001-05:00

Did you know there are 1 million people in the United States who have cerebral palsy? I guess that means Faith truly is one in a million!

Faith was diagnosed with cerebral palsy when she was six months old. Prior to that, she had been given the diagnosis of Periventricular Leukomalacia (PVL). During her premature birth, there was a lack of oxygen to her brain, which resulted in damage to the white matter, or inner part of her brain.

I will never forget receiving that news. Faith's Dad and I were told that nobody knew what the long-term effects of PVL would look like for her. All I could do was stare at my tiny daughter lying in her isolette, hooked up to all kinds of tubes and lines, and choose to believe she would be okay.

Faith in the NICU a few days after she was born.

After over 70 days in the NICU, we finally took her home to Watford City. There, she would receive regular visits from an Early Intervention team who would assess her and ensure that she met all of her milestones. As the weeks and months went by, it became quite clear that something was not right.

Faith's grandmother from Canada had been visiting us during one of these visits. After watching Faith lie on the floor, unable to rollover, crawl, attempt to sit up, or make any other kind of purposeful movement, my mother-in-law asked the dreaded question, "Is it CP?"

The early interventionist and the physical therapist were both quick to say they could not make that diagnosis. They urged us to set up an appointment with the doctor she had while in the NICU so that he could assess her.

Faith just a couple of months old at our home in Watford City.

That appointment was on April 27th, 2004. This was the day we learned that Faith had spastic quadriplegia, the most severe kind of cerebral palsy. The part of her brain that was damaged was sending inhibitory signals to her muscles, which increased her tone.

This increase in tone is also known as spasticity and was prevalent in all four of her limbs, making it very difficult for her fine and gross motor skills to develop correctly. The damaged parts of her brain also affected other areas, like digestion, communication, and cognition.

Three months later, we moved from Watford City to Bismarck/Mandan so that all of Faith's special needs could be met. Our schedules became filled with physical and occupational therapy appointments, meetings with early interventionists, case managers, and durable medical providers, not to mention other specialists who would help us navigate the very challenging road of having a daughter with many special needs.

Faith at physical therapy in her very first set of wheels.

Thankfully, cerebral palsy is not a progressive condition. This means that it doesn't get worse over time. However, as Faith grew, there were new challenges along the way.

During her younger years, it was possible to carry both her and her chair up a flight of stairs and get her into and out of a vehicle. As she grew however, and her wheelchair had to be upgraded, this became impossible, which made it necessary to live in an accessible apartment and get an accessible vehicle.

Because her condition affected digestion, she could not eat enough food to provide proper nutrition and as a result was diagnosed with failure to thrive. Thankfully, a feeding tube provided a way for her to get enough calories and gain some weight.

It's hard to believe now, but at one time a speech pathologist informed us that because Faith still wasn't talking at the age of 3, she was most likely nonverbal. (About 25 percent of those with cerebral palsy are nonverbal). We were looking into getting a communication device to help her communicate with us, when all of the sudden she just started talking! (And she hasn't stopped since!)

In 2009, Faith got a bigger (and heavier) chair, so we moved to a place with an elevator.

After another chair upgrade, we got our first accessible van.

There is probably so much more I could say about the challenges of having a daughter with cerebral palsy. She has had to overcome some very difficult things, one of which was having her left hip come out of its socket. It is quite devastating as this means she can no longer stand in a stander (which helps maintain bone density) or walk in a gait trainer like she once used to.

After it had become displaced, it wasn't possible to put back in, as it would most likely just come out again. As long as Faith wasn't having any pain, it was recommended not do any kind of surgery. Thankfully, it doesn't seem to be a problem for her, but for me it is difficult to live with this reality.

With the cerebral palsy comes all kinds of difficult decisions. One of which was whether or not to do Botox injections to help relax the muscles. Another decision I have wrestled with over the years is whether or not Faith should get a baclofen pump.

I eventually decided to go ahead with a procedure to have a test dose of baclofen injected into her spine. Things did not go well, and she ended up in the hospital for 5 days. As a result, she does not have a baclofen pump. She has received Botox, which helps decrease tone, but it is not a long-term solution.

Something I've had to learn over the years is that even though doctors make certain recommendations, it doesn't mean I always have to do what they suggest. I have learned instead to advocate for Faith and try to do what I think is best for her. For example, even though pediatricians prescribe it all the time, I don't want to give her Miralax for constipation. Instead, I have found success with other more natural supplements (like a high-quality brand of magnesium and Vitamin C).

Faith getting nutrients from her new blended diet.

Her digestion issues were also the main reason I decided to start blending her food. One drawback of blending, however, was that it was hard to get enough iron into her diet. At one time she was on an iron supplement, but then I found Liquid Hope, which is a type of organic formula made with real food. It contained enough iron so that I was able to take her off the supplement she had been taking. Right now, I'm doing a combination of the Liquid Hope and food that I blend for her so that she can get a wider range of food and nutrients.

Although there was a period of time Faith had taken a break from all her traditional therapies, we decided to go back in 2021 as she was really struggling with anxiety and emotion regulation. At this time, I had become a single parent and found it nearly impossible to deal with her daily meltdowns on my own.

I asked other special needs parents for recommendations on where to take Faith to help her in this area and was told that Kids in Motion did free screenings. I began taking her there two days a week, and we have been going there ever since. The therapy she has received has been nothing short of amazing. She is currently doing aquatic therapy and learning to drive a power chair!

We are also blessed in this community to have a wonderful day service program that Faith has been attending for the last 3 years. Although she only goes part-time, it has been so beneficial, and I have seen many areas of growth in her.

Faith during a PT session.

In 2014, I began homeschooling Faith and in 2022 she graduated from high school!

As you can see, these past 21 years have been filled with challenges and lots of bumps in the road. However, if you have ever met Faith, you know that these challenges have not deterred her in any way. She is filled with joy and has so much love for people.

I know there are many days she is not feeling the best and there are things she gets sad about, but she really tries to give it everything she has on a daily basis. For me, raising a daughter with cerebral palsy and making all of the decisions that go along with it has been quite a challenge, and I can't imagine doing it without help.

Attending a sock hop at her day program.

Thanks to the Internet, there are many places that provide answers to questions that I have had over the years. In fact, it's how I learned about a blended diet for feeding tubes. I'm also a part of a local group on Facebook of parents in the area who are raising special needs kids.

Besides connecting with others in similar boats, I am thankful for the love, support, encouragement, and understanding from others. Most of all, I am thankful to God for giving me the strength, guidance, and grace to be Faith's Mom.

If you know someone with cerebral palsy, or a parent of a child with CP, this is a great month to reach out to them and offer some encouragement. Also, March 25th is Cerebral Palsy Awareness Day, so please wear green to show your love and support!

Remember to wear green on March 25th!

An Unforgettable February!

2025-02-27T17:51:00.000-06:00

February started out as it typically does: very cold! This year, my parents and sister braved the weather to have a small get together for my birthday. Faith thought I needed another party like I had last year, but I told her 51 just wasn't as exciting! She also asked if her Auntie Tesa was going to fly up again. Faith really does love a good party!

Accurate!

Dawn, Faith, and Me

Dad practicing holding his arm for after shoulder surgery

The next day, my parents took me to IHOP, which had recently opened here in Bismarck, but I hadn't had a chance to go yet. It did not disappoint. My pancakes, eggs, hashbrowns and coffee were all perfect!

I was glad to have gotten this meal in with my parents as two days later, my dad would be going through shoulder replacement surgery. We were all expecting him to be in and out on the same day, which is exactly what happened a couple of years ago when he had knee replacement surgery.

I, along with my siblings, was shocked to get a text from Mom saying that the doctors needed to keep him in the hospital because his oxygen had plummeted in the recovery room. Thus began a 12-day saga of getting him well enough to go home. Apparently, he had received too much of the nerve block that they typically give for this type of surgery to help manage the pain. This caused his diaphragm to become paralyzed, and his lung to collapse. He was also retaining fluid.

Faith visiting Grandpa in the hospital. She was very concerned about him!

Even though they knew the problem, and he was doing all the right things to get his oxygen levels back up, it just wouldn't stay in the 90s, even with supplemental oxygen through a cannula. Another CT scan showed he had blood clots in his lungs, so they immediately began treating him for that.

It was all very scary for a while. It was wonderful that he had so much support, which included lots of prayers, texts, phone calls, and visits. He also had some really great nurses who were quite entertained by all of his oilfield and hunting stories.

I made frequent trips to the hospital to see him and even brought Faith up there a couple of times. At this time, the weather was bitterly cold. In fact, Bismarck had broken three records for all-time lows. My mom faithfully went to the hospital each day very early in the morning, which is when it was coldest. Thankfully, her vehicle started every time when she went back home.

Yep, it was cold outside!

Finally, he was able to breathe completely on his own and maintain normal oxygen levels, so they were able to discharge him. He has been going to physical therapy for his shoulder and trying to just take it easy, which is difficult for him!

This month also proved to be memorable for Faith as she was prescribed glasses for nearsightedness. When she was a baby, she was diagnosed with esotropia, for which she had to wear an eye patch for a certain number of hours each day, and wear glasses. Thankfully, the glasses and patching helped to correct the problem, and she no longer needed glasses.

When she was 8, she was diagnosed with optic atrophy, in which the optic nerves in her eyes don't work as they should and affects her field of vision. But this is the first time she has ever been diagnosed with nearsightedness. She is not crazy about wearing her glasses, but she mainly just needs them to see things far away.

Faith looks so nice in her new glasses!

Another thing she also began is hydrotherapy. She used to do this when she was much younger, but the hydrotherapy pool she went to closed down. The place she goes to therapy recently built a new facility and it includes the only hydrotherapy pool in the area. For her to go swimming, they needed to get a lift system so that they could safely get Faith into the pool.

We were both a little anxious about how it was all going to work, but the staff helped make both of us feel very comfortable. The water is 91 degrees, and the warmth of the water helps to relax her tight muscles. I can't imagine how good that feels for her!

To maximize the effects of the warm water, the room temperature in the pool room is that same as the water temperature. She doesn't even get cold when she gets out of the water. The first day she went it was 110 degrees colder outside than inside the pool room!

Faith getting into the pool.

Faith figuring out her new switches for power mobility.

Faith also got new proximity switches to work with for power mobility, so we are hoping this is the answer to her having a powerchair someday. She has been working so hard in occupational therapy to become a little more independent.

Today, we had her meeting at her day program. She has already been there for 3 years, and it is amazing to see the progress she has made in her communication and coping skills.

One more thing that Faith started up again was adaptive dance classes at Northern Plains Dance. This is the second time she has taken these classes, which run for 5 weeks each session. She is very excited as she will get to take part in a special performance in the spring to showcase what she and her dance partners have been working on.

Faith is so happy to be back at adaptive dance!

Besides my dad's hospitalization and Faith's therapies, I did get to do a few fun things for me. One of which was participating in the annual Coffee Crawl. Me and a friend did it last year and decided to do it again this year.

We hit 12 local coffee houses in less than 5 years. Needless to say, I was quite caffeinated when it was all over. Mocha Momma's won for the 2nd year in a row for having the best drink - a sugar free S'mores latte. I discovered a few new coffee places that I will definitely be going back to!

3AndME Coffee Shop located inside Gateway to Science. Their cold brew latte was delicious!

I am also able to participate in our church's women's Bible study in which we are studying the book of Revelation. In the past, I just couldn't make it work to attend due to Faith's therapy schedule. It is such a blessing to get together each week with a wonderful group of ladies. I truly cherish my time with them and love learning more about God's Word.

It has definitely been a very cold, memorable, and busy month. We have been getting a "false spring" this past week. Winter will return, but thankfully our true spring is just around the corner!

My Top Ten Blog Posts of 2024

2025-01-07T14:18:00.005-06:00

Remember David Letterman's Top 10 lists? That was back in the day when late night TV was actually funny! This was also when music was really great, and I faithfully listened to the Top 40 countdown every Saturday. And around New Years, the DJ would play the top songs of the year!

I guess thinking about these things inspired me to come up with my own list. As a final nod to 2024, I looked back at all the posts I have ever written and have listed the ones that had the most views this past year. I found it interesting that posts I have written long ago were still being read in 2024!

10. Goodbye to Our Special Tomato Adaptive Car Seat

Faith at the age of 9 in her adaptive car seat.

This post from 2012 describes how Faith had finally outgrown the adaptive car seat she needed when we did not have an accessible van. The car seat fit in the backseat of my Hyundai Elantra. The adaptive car seat was great, but I don't miss the days of picking her up out of her chair and putting her in the car. It would actually be impossible for me to do that now!

9. A Marvelous Mother's Day Weekend

Faith and I at the Belle Mehus for the spring performance of Northern Plains Dance.

This post wasn't written all that long ago in May of 2024. Faith had just gotten over RSV and the flu and we ended up having a wonderful weekend together. Along with going to the ballet, we were the greeters at church and then spent some time outdoors in the sunshine at my parents during a small family gathering.

8. Faith's First Concert Experience

Another more recent post, I wrote all about Faith going to her first concert. We had gone to Fargo for an early 21st birthday present where we got to see Matt Maher, CAIN, and Ben Fuller perform. We didn't get to see headliner, Zach Williams, as Faith was running out of steam, but she had a great time and still talks about how awesome her first concert was!

It was so great to see Matt Maher, one of our favorite Christian artists.

7. 50 Years Ago Today: My First Open Heart Surgery

Me as a baby in 1974 with my parents and older brother

I had written this post on August 7, 2024, which was the 50th anniversary of my first heart surgery. One of the reasons I write about such milestones is to give God glory for all He has done in my life. I know my life has been in His hands since the day I was born and I wouldn't have made it this far, and doing this well, without all of the prayers prayed for me.

6. Guest Post: Who Needs Sympathy?

Sometimes we wrote guest posts for each other's blogs, which was the case for this post, written in 2011 by Stephen Gallup. Along with blogging about his experiences as a father with a special needs son, Stephen also wrote the book, "What About the Boy? A Father's Pledge to His Disabled Son."

5. Faith Turns 21!

Another recent post, written just this past October celebrates a huge milestone in Faith's life! When she was born so prematurely, I really didn't know what to expect. I had prayed for several years that God would heal her damaged brain, thinking it was God's will to do so. Now, however, I am thankful that despite her disability, my daughter provides others with encouragement and shines her light for Jesus wherever she goes. What more could a parent possibly ask for?

Celebrating the birthday girl!

4. My Tetanus Shot Ordeal: A Real Pain in the Arm!

This post, written in 2011 detailed my account of getting a tetanus shot and the negative side effects I experienced. Because of that ordeal, I am afraid of getting another tetanus shot (for which I am long overdue). Along with being a popular blog post in 2024, this is my most popular blog post ever, with over 8,200 views!

My sore arm after a tetanus shot in 2011.

3. Sarah Palin's Letter from God

photo by
Gage Skidmore

Also written in 2011, this post discusses a letter that Sarah Palin had written to her family and friends before the birth of her son, Trig who was going to be born with Down Syndrome.

Excerpt: "Every child is created special, with awesome purpose and amazing potential. Children are the most precious and promising ingredient in this mixed up world you live in down there on earth. Trig is no different, except that he has one extra chromosome."

One reason I posted this was because I feel very strongly that just because a baby in the womb has Down Syndrome, or any other special need for that matter, abortion should not be considered!

2. North Dakota Becomes First State to Protect Special Needs Babies in the Womb

I wrote this blog post in 2013, shortly after then Governor of North Dakota, Jack Dalrymple signed HB1305 into law. This bill was designed to ban abortions that were done solely for the reason that a baby had any genetic anomalies or that the baby was not the sex that a parent desired. North Dakota being a pro-life state is just one more reason I love it!

The amazing sunsets are another reason to love this state!

1. Faith the Soccer Star

I can't believe that this post, written in 2015, is still getting so much attention and that it was my most popular blog post in 2024.

It's about one of the first adaptive sports that Faith ever did through Dreams in Motion. They used to do wheelchair soccer at the University of Mary with help from college soccer players. Since her soccer days, Faith has also done adaptive track and field, dance, and wheelchair basketball. Dance has become her favorite, but there was a time she absolutely loved soccer!

Faith having fun playing wheelchair soccer

Thanks for going down memory lane with me! I appreciate each and every one of you who reads my blog and has followed it for many years. It's hard to believe I started it in 2009! I pray it has blessed you in some way. Happy New Year!

We Made It Through December

2024-12-30T14:34:00.001-06:00

Every December, I look for Christmas shows to record and then watch them after Faith has gone to bed. I love curling up with a fuzzy blanket and a cup of tea with the Christmas tree lights on, watching a holiday program. Usually, there is Christmas music involved!

This year, one of the shows I watched was Little Big Town's Christmas at the Opry. It was really good, and one of the most memorable performances was the country band's rendition of the Merle Haggard song, "If We Make It Through December."

When I heard them sing that song, I resonated with the title. Faith and I had both come down with COVID. Before that, I was just getting over a bout of the stomach flu. (Thank goodness Faith didn't catch that!) In between sicknesses, Faith and I managed to make it to The Nutcracker, but that's about the only thing we did in the days leading up to Christmas.

We made it to our 7th annual Nutcracker performance!

One thing I missed that I was very disappointed about was the Lorie Line Christmas concert. I had attended last year with a friend of mine, and I absolutely loved it! This year, I decided to take my parents to it for their Christmas present. But on the day of the concert, Mom was instead taking me to the walk-in clinic, due to the fact I could barely breathe when I coughed.

The doctor recommended a breathing treatment and prescribed an inhaler. I've never had to use an inhaler before, and I did not like the side effects like tachycardia, shakiness, and insomnia, but it did help with my cough.

About an hour later my test results came back, and sure enough I had COVID. I figured Faith had it too, since we had come down with similar symptoms the same day. I'm very thankful she didn't get my cough, but she did get stuffed up to the point that it was hard for her to sleep. Needless to say, that was an exhausting week!

Another stressor was that all of the goodies from the Nutcracker-themed fundraiser that Faith had participated in (due to being a part of their adaptive ballet program) were in and needed to be picked up. Since I wasn't well enough, Mom and Dad went and picked up the goodies. They were not prepared for it being such a big, heavy box. Faith was one of the top sellers! Mom and Dad brought the box home and sorted all the goodies for me. I was so appreciative of their help!

We missed a Sunday of church but were able to watch online!

On Christmas Eve we did a video chat with Faith's grandparents in Canada, and they happily watched us open our gifts. That evening, we felt well enough to go to the Christmas Eve service at church. What a blessing it was to be with our church family celebrating the birth of our Savior!

The next day, we made it to my sister Dawn's house, where we had a small family gathering with a lot of food, that included ham, roast beef, veggies, mashed potatoes, gravy and homemade buns. There were also a lot of cookies and a few homemade pies. It was the most food I had eaten all month. Even though I couldn't smell it (due to losing my sense of smell) I could still taste it!

Faith opening gifts on Christmas Eve

Faith was excited to wear her new Walnut Grove t-shirt from
Auntie Dawn to the Christmas Eve service.

Hanging out with family on Christmas Day

Mom and Dad with two of their great grandsons

It seemed we were both on the upswing, but then I noticed one evening when changing Faith's slippers that she had a little cut and a bruise on her big toe. I thought she must have hit it on her footrest or something. I put some antibiotic ointment on it and didn't think too much about it. The day after Christmas Faith could finally go back to her day program. She was so excited!

However, after getting home, she flinched when I took her shoe off and when I looked at her foot, it looked swollen. The next day instead of going straight to her day program, I took her to the walk-in clinic. The waiting room was packed. Faith didn't mind and struck up conversations with other patients sitting nearby. After over an hour, she finally got called back and many people called out, "Bye Faith!"

Turns out she got cellulitis (bacterial infection) from the tiny cut in her foot. Because we had waited so long and then had to get her antibiotics afterward, she didn't make it to her day program. She was sad but handled it well.

After we got home, I gave her the first dose of antibiotics and then her feeding. Two hours later, she threw up. After a couple hours, her tummy settled down and she slept for a bit. She ended up waking up feeling thirsty, so I gave her some apple juice. Thankfully she kept things down over the weekend and her foot doesn't seem as tender.

It's been a tough month, but we've nearly made it through December!

We hope you all had a Merry Christmas and have a blessed New Year!

My Little Vacay to Nebraska

2024-11-15T14:31:00.002-06:00

When one thinks vacation, they probably don't think about Nebraska, especially in November! But when I heard that a friend of mine was going be having surgery in Omaha, I began thinking about how great it would be to go down that way. That, and the fact that my sister, Tesa has lived in Lincoln for 17 years, and I have never had the chance to visit made me seriously consider the possibility.

Lo and behold, my dad had also been talking about heading South to Texas in November to hunt wild pigs. My two respite care workers were available to look after Faith starting on a Friday morning through Tuesday evening. All I had to do was book a flight so I could get back home.

Despite all the details falling into place, I was still anxious about it. I haven't flown since Faith was a baby, so I was especially nervous about that part. I prayed about it and believed that everything would be okay.

On the morning of my departure, Faith woke up just in time and her respite care staff was able to get her dressed and take her to her day program. I gave her a big hug goodbye and told her how much I loved her. She had known about my little getaway for about 3 days, and we spent a lot of time going over her schedule (which she memorized). She didn't fight or cry or anything and I was so proud of her for how she was handling the news.

Our first stop in Watertown, SD. (Sporting an NDSU shirt in enemy territory!)

Dad helping some guys out!

After driving several hours, we finally made our first stop in Watertown, South Dakota. My dad had noticed a Ford diesel pickup truck at a gas station with its hood up, surrounded by people and a few other trucks. Of course, he just had to go over there to see what was going on.

The young driver had run out of diesel fuel and had barely made it to the gas station. The pickup wouldn't start though, since it had run out of fuel (something you're not supposed to do with a diesel engine!) My dad, who has been around diesel engines most of his life, was able to help them get the pickup running again. After saving their day, we grabbed a bite to eat and didn't stop again until we reached Lincoln.

We made it to my sister's house in Lincoln!

My sister had made a delicious supper of meatloaf and mashed potatoes. I was so happy to be there and to finally see her home, along with her hubby, my nephews, and their dog. I felt bad that Preston had to resort to sleeping on an air mattress in my sister's office, but he didn't seem to mind giving his room up to me.

The next morning, after being awakened by Josie, who was excited to have someone new to give her attention, I ate breakfast, drank my coffee, and relaxed. After Preston got up and ready, we ventured to the mall so he could find a one-year anniversary gift for his girlfriend.

Getting ready to shop!

Tesa and Preston at the mall.

Once we were done shopping, we headed over to Granite City for lunch. We then drove around and Tesa showed me where the boys went to school, as well as where the Cornhuskers played football, and some other fun and interesting sites. We then went downtown to the Haymarket where I bought Faith and I some apparel at From Nebraska Gift Shop and a few tasty treats at a bakery called The Rabbit Hole.

As we drove around, I was impressed by how easy it seemed to navigate the area. I loved the Midwestern homey feel of Lincoln, NE. Everyone I came into contact with was so friendly. I felt like I had never left North Dakota! (Except for the fact that no one in Nebraska seems to have an accent like we apparently do!) But like here, Nebraska was having an unusually warm autumn season, so it was nice to venture out with just a sweatshirt.

Later that evening, the whole family, along with Preston's girlfriend, had an entertaining and fun dinner experience at a Japanese Hibachi Grill. The food was delicious, and Preston and Don were able to catch a few pieces of shrimp tossed to them by the chef.

The Historic Haymarket in downtown Lincoln

Where the Cornhuskers play football! No game when I was there, though!

Time for supper at the Japanese steakhouse!

Our chef was lots of fun!

Preston impresses his girlfriend by catching shrimp in his mouth.

That night, Tesa and I searched and searched for a movie to watch and the only one we managed to find was something called Frozen (not the Disney movie!). I don't really recommend it, but honestly, neither of us could stop thinking about it, even well into the next day.

The next morning, the whole house was empty as Don and the boys were outside doing yardwork and Tesa was taking Josie for her long walk. This gave me the chance to watch church online. I saw that my sister and Faith had made it to church, which I figured Faith was pretty happy about.

One thing Tesa wanted me to do was take family photos so they could use one for their Christmas card. She even had a place on the walking trails all picked out. This involved going to a nearby store to get Preston some Jeans as his current wardrobe of sweatpants-only wasn't going to cut it for the photos.

When we got back, it was a mad rush to get everyone dressed in their matching outfits before we ran out of daylight. We made it to the scenic location and took lots of pictures. It was fun, and Tesa was so happy with how they turned out!

Preston driving during a mission to get some jeans!

My handsome nephews, Preston and Donnie.

For supper that evening, the boys were happy to stay home and eat pizza while Tesa, Don, and I went back downtown to a restaurant called Screamers Family Restaurant. It was very interesting as the waitresses were also singers and they would periodically get onstage and sing a few songs.

We all thought it must have been musical night, because all of the songs were from musicals (which meant we didn't know hardly any of the songs!) The restaurant also hosts fun events like an 80s Prom Tribute Show (which I would love!) as well as other events like Songs of the Season and tributes to ABBA and other artists.

Supper at Screamers!

Don and Tesa

The next day, Tesa and I left for Omaha so that I could see my friend who was a patient at the University of Nebraska Medical Center (UNMC). After rolling into town and checking in to our hotel, we ate lunch at Beacon Hills. We both had salads, and they were amazing! Following lunch, my sister dropped me off at the medical center and I had a really nice visit with my friend. Thankfully, she is doing well!

Upon picking me up, we made our way to the Blue Sushi Sake Grill. Neither one of us realized that the other liked sushi until we started talking about it a couple nights before. I tried really hard to eat with chopsticks, which is something I never could get the hang of. I asked Tesa to take a picture of me eating with them so that I could send a picture to Faith. I told her to hold on until I had picked up a sushi roll, but she proceeded to take pictures the entire time I was trying to pick it up!

Back at our hotel, we watched Judy (the biographical film based on the life of Judy Garland). It was good but really sad at all she had endured during her lifetime. The next morning, I was nervous about flying, but Tesa had given me lots of handy tips!

She was going to go into the airport with me, but we couldn't find any open parking spots in the garage. I told her I would be fine. We gave each other a teary-eyed hug even though we would see each other again in a couple of weeks for Thanksgiving! We had so much fun together and so many laughs. It was just so great to be able to hang out with her!

Saying goodbye to Josie. She's such a sweet dog!

Enjoying our salads at Beacon Hills.

Thankful to have been able to visit a friend in the hospital.

Trying to eat sushi with chopsticks!

Old Market in Omaha (free parking on Veterans Day!)

Tesa getting some work done at the hotel before heading to the airport.

Going through security was no problem at all (even with my pacemaker, which I did have my ID card just in case!) I really didn't have to wait long until we boarded the plane and then the flight to Minneapolis was very quick. Upon landing, I hustled from Concourse C to Concourse A and found my gate. Within minutes of arriving, however, I realized the gate had switched to the next one over.

But then about 20 minutes later, the group of people flying to Bismarck was told that our gate had changed to an entirely different concourse, so we all made our way to that gate. After a while, the lady at the counter got on the loudspeaker and said there was a plane change and because of that, they had to find a crew who could fly the bigger airplane.

At first, they needed to find the pilot and then minutes later she announced they also had to find a different copilot. Then she came on again and said the copilot was on his way, but it could be 90 minutes before he arrived.

By that time, it was about 4:00 p.m. and we were supposed to have left at 3:15 p.m. Thankfully, the copilot arrived sooner than anticipated and we were able to fly out at about 5:15 and made it to Bismarck in about an hour.

Waiting at the airport in Minneapolis.

My mom picked me up at the airport and brought me home to someone who was very excited to see me! She screamed very loudly when I walked through the door and when I was getting her ready for bed she said, "I'm so glad we're back together again!"

Faith and I had video chatted every day when I was gone, so that helped her immensely with me being away. I was so happy that her respite care staff kept her routine as normal as possible, and she didn't miss her adaptive ballet class, therapy, or her day program. She even had a haircut and made it to her dentist appointment!

I have not been on a vacation like that since I went to Minneapolis with my sisters a couple of years ago. But this time, I was gone much longer, and it was so nice for my brain and my body to have a break and not constantly have to be thinking about what I needed to be doing next to keep Faith's routine on track.

Faith is all smiles with me on the way to therapy!

I am very blessed that one of my sisters helps with respite care and that my other sister was so willing to drive me to Omaha and stay with me there. I feel like as their older sister, I should be looking after them, but they are always looking after me, and I so appreciate that!

Since I realize that flying really isn't so scary, I can't wait for the next trip that I might be able to go on someday! For now, though, I'm glad to be back home, and I think someone else is pretty happy about that, too!

Faith Turns 21!

2024-10-27T19:51:00.005-05:00

Faith's 21st birthday was on Friday the 25th and it ended up being an all-day celebration! She didn't sleep well the night before, so I was a little concerned she would run out of steam, but she just kept going! It ended up being a beautiful fall day, so I didn't even need to put a jacket on her, which is rare for the end of October.

Faith in her new birthday shirt!

This year, she was able to bring cupcakes to HIT. Last year, due to the dietary restrictions of her peers, she didn't bring any treats. This year, however, she is a new room, where they truly love their snacks!

After I dropped her off, I raced around like a maniac getting her ballons, presents, and everything else ready for the surprise party we would be having at the end of the day.

Faith with some of her staff making a cupcake delivery.

When I picked her up from her day program, I informed her that some friends of mine that I worked with wanted to give her a special birthday treat. So, we made our way to their apartment.

After a short visit with them, she wanted to do her usual Friday routine of going to the library. She was able to see a few of her favorite librarians and even got a birthday hug and a few fist bumps from them.

A mini photo shoot outside of the library.

Following our trip to the library, we made our way to Northern Plains Dance, where she was going to have her first adaptive dance class. I had been wanting her to try this for some time, especially since I know how much she loves to dance, but the timing wasn't the best. When I saw that the session started on her birthday, I decided to have it be part of her birthday present.

The ballet teacher paired her up with another dancer and the two of them did great together! I was impressed that Faith really tried to move her arms and body as asked. Part of the class was listening to the music to determine how they should move. If the music was fast, heavy, light, or slow, they would move accordingly.

The class was in a dimly lit room with the music down low, which was perfect for those with sensory processing issues and also for her primitive startle reflex. As expected, she truly loved it and can't wait to go back for the remaining sessions.

Faith working with her dance partner.

Once dance was over, it was homeward bound, where unbeknownst to her, a little surprise party awaited. She had been asking for a party and even had an entire guest list in mind. She wanted it to be just like her graduation open house, because according to her, that had been a big success!

But I kept telling her we have already done so much for her birthday (like a dinner party with friends from church that turned into an early birthday party and the concert a couple of weeks ago). I tried my best to not spoil her little surprise party.

When we opened the door to our apartment, her grandparents and a few aunts were waiting for her. They said, "surprise!" when we walked inside. Her auntie Dawn and another friend showed up a bit later. We of course sang happy birthday to her, opened gifts, read the many birthday cards she received, and ate some cake.

It was a very fun-filled day that carried over into the weekend with video chats and phone calls, and a few more cards and gifts. I think she likes being 21!

Fun with family

Her big birthday balloon bouquet!

Her cake (chocolate of course!)

Just hanging out

Faith with two of her favorite people (Kylie and Dawn)

Faith with Grandma and Elmo Theodore Bousfield, the big red dinosaur along with her new favorite book, "Happiness Abounds: The Great Adventures of Faith's Dinosaur" by Tesa Graff; edited by Preston Graff. Photos by Deone Lawlar and her assistant, Denae Hoffmann.

I'm so thankful for everyone who made Faith's 21st birthday extra special!

She is blessed beyond measure!!!

Faith's First Concert Experience

2024-10-16T13:25:00.009-05:00

Earlier this year I decided it would be fun to do something extra special for Faith's 21st birthday. Ever since I went to Bon Jovi a couple of years ago with my sisters, Faith has been telling me she wants to attend a concert, too.

When she was younger, I knew she could not have handled all the noise, and that a concert would be way too overstimulating for her. I did, however, take her to a NDSU Bison game a couple of years ago and she handled that like a champ! Because of how well she did with that, I began searching for concerts coming to the area.

The only one that I thought Faith might be remotely interested in was the Zach Williams Revival Nights Tour. The best part was that it was going to be held in Fargo just a few weeks before her birthday! The tour also featured Matt Mahar and CAIN, who both perform songs that we sing in church.

First time ever at Scheels Arena in Fargo!

To make it even more exciting for her, I asked her dad if he could meet us in Fargo for part of her early birthday celebration. As the event grew closer, she became more and more excited. The only thing I was apprehensive about was how long of a day it was going to be for her.

I knew she would still want to go to church, then we would have to leave right afterward to get to Fargo at 3. There, we would check in at the hotel and meet up with her dad.

During church, the guy leading worship knew Faith would be going to her first concert and also knew which artists we were going to see. Because of that, he chose to have us sing a few songs by Matt Mahar, one by CAIN and one by Zach Williams. It was so nice that he did that!

Right after church, Faith and I swung through McDonald's for a quick lunch and then I connected her to the feeding pump so she could have her lunch as well. We only stopped once so that I could disconnect her feeding and get her repositioned in her chair. We got to Fargo shortly after 3 and met her dad in the parking lot. We had a few hours to relax and grab supper before the concert.

The plan was to have Rob drop Faith and I off at the entrance of Scheel's Arena. I wheeled Faith inside and we found someone to help us to our seats. I had never been to that venue before, and honestly, I found it a bit difficult to navigate as there was no signage telling us that we needed to take an elevator to get to the floor seating.

We then had to work our way through a bit of maze just to get to the floor. After finally reaching the floor, I discovered we were on the wrong side, so it took us a while to get across the floor (not to mention get her chair over several power cords). I was trying to hustle as I wanted to get to our seats before they dimmed the lights.

While there was no accessible seating on the floor, they said we could just take a seat away to make room for Faith's chair. Nobody really did this for us, though, so I just sort of parked her in the aisle. This worked well so she could see better and so that she had plenty of room to move around and dance. When she's excited, she kicks her legs and her arms go everywhere!

About five minutes later, Matt Mahar was on stage opening up the show. I was surprised by this, as I thought for sure Ben Fuller would be the opening act. It was great though, because he was the one that we wanted to see the most! He ended with one of our favorites, "Alive and Breathing."

Matt Mahar is first to take the stage!

After he performed, everyone had to turn around to look at the backstage for Ben Fuller. He sang 3 or 4 songs before CAIN took over on the main stage. While Faith had been doing great, I could tell she was running out of steam. I don't think she was quite prepared for how loud it was in there. (I'm not sure how many people were in attendance, but it was packed!)

After CAIN performed her all-time favorite song (Friend in Jesus), she was ready to go. I did love how she belted out the lyrics to that song! (I can't listen to that song without crying, which made it hard to record, so I didn't get video of that one. You can listen to it below, though!)

I wasn't too disappointed that we didn't get to see Zach Williams. My whole agenda was for Faith to enjoy her first concert experience.

CAIN had a really fun stage!

I figured out how to get out of the concert arena and back to the front doors. We called her dad, and it took him less than 5 minutest to come pick us up. (I had purposely picked a hotel that was nearby). As I got her into the van she yelled, "We rocked out!"

Another reason I wasn't disappointed that she wanted to leave early was so that she could get to bed earlier. She was very tired after such a long day.

We came, we laughed, we danced, we sang, we praised Jesus. Now it's time to go home!

The next day, she said her goodbyes to her dad, and we hit the road once again. On the way home I asked if she would ever want to go to another concert again and she said, YES! All in all, I would venture to say her first concert experience was a complete success!

Our Review of Wheel of Fortune: The New Era

2024-09-15T21:20:00.007-05:00

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Last year, when I heard the news that Pat Sajak was retiring from Wheel of Fortune, I knew I better prepare Faith. When season 41 began, I told her, "This is Pat's last season. Next year, there will be a new host."

Faith likes Vanna but loves Pat!

Faith and I have faithfully watched Wheel of Fortune every night since she was about 5 years old. It's how she learned that AEIOU were vowels. The show was also a great way to reinforce the rest of the alphabet. Counting was reinforced, too. When Vanna turned the letters, she counted how many T's, N's, or other letters there were.

She also learned some geography skills with the different trips they gave away. Upon winning a trip to Aruba, she would ask, "Where's that?" Sometimes I honestly didn't know and had to look it up. More often than not, the prize was somewhere in the Caribbean!

I have tried through the years to get her to watch other game shows, but she has only been interested in Wheel of Fortune. And although we comment almost every night on what Vanna White is wearing, Pat has always been her favorite. There have been so many times that he said or did something that made both of us laugh like crazy. (We had to rewind this bonus round like 10 times!)

Back in the day when we watched Wheel, we did not have recording capabilities. We also just had a TV with an antenna and had to position it in the window so we could watch it on our local station. There were times we couldn't get it to come in very well, or we would miss it altogether because we were gone. Faith would get so upset!

We eventually got limited cable with DVR, which made our lives so much better. After that, it was a very rare occurrence to miss Wheel.

Besides watching it on TV, we also had the PS2 and PS3 versions of the game, which Faith and I have had a lot of fun playing over the years. She especially loves the PS3 version because it has both Pat and Vanna on it. We tried the PS4 as well, but the hosts are different, so she doesn't like that one as well.

Faith liked to make her own contestants on the PS2 version of WOF

Along with playing the game and watching the current episodes on TV, Faith also likes to watch reruns on YouTube. (If you're looking for reruns, check out Wheel of Fortune Fanatic's channel). It's fun for her to see the really old ones, from the 80s and 90s. Every now and then, she'll watch one where they have to spend their money on prizes. Talk about flashbacks to my childhood! I also have over 200 episodes on our DVR that she watches from time to time as well.

As premiere week for Wheel of Fortune the New Era drew near, I was seriously wondering if it would be the end of our Wheel-watching days. Without Pat, how would it ever be the same?

Every year, we hope they call our Spin ID, but every Faith says, "Not us!"

As the first episode appeared on our TV screen, the first thing I noticed was the set was way too busy. When Ryan Seacrest took his place near the contestants, I noticed he wasn't using cue cards like Pat had always done. I read that he has an amazing memory, which is pretty impressive that he memorizes everything about all the contestants and all of the puzzles. But, without the cue cards, he didn't seem to know what to do with his hands. Sometimes they were in his pockets, sometimes he had them clasped together, and other times, he was clapping (that's Vanna's job!)

There were no funny quips during the short interviews with the contestants. Ryan seemed like he was trying to be so professional and likeable. I also noticed the contestants seemed overly energetic. I had also read that since Ryan had so much energy, they wanted the contestants to be the same way. One reason for this was to draw in a younger crowd.

During the toss-up rounds, I did not like the boxes on the bottom of the screen with all three players in them. I felt like I was watching a sporting event or something instead of a game show. It was weird. I also noticed I was so distracted by everything going on that I had a hard time focusing on the puzzles.

Faith's Wheel of Fortune cake when she turned 13!

One thing that really bothered Faith occurred during the bonus round. The contestants are always given the letters RSTLNE and then they have to choose 3 more consonants and a vowel. Because premier week was sponsored by LG, the contestants were given the bonus letter of "G." Faith didn't like the fact that Ryan was giving them an extra letter!

Normally during WOF, Faith and I can't wait to see Pat and Vanna's closing monologue. Even though it's pretty short, it's just fun to see what they are going to talk about. It was also just nice to see the comradery they had with one another, having known each other for so long.

One of Faith's favorite clips ever:

It was just kind of sad to see that Ryan and Vanna's monologue felt forced. Ryan would say something, and it didn't seem like Vanna knew how to respond. I'm sure it will get better between them over time. After we made it through the first episode of the new Wheel, I asked Faith what she thought of Ryan Seacrest. She responded, "He's boring!"

As the week went on though, when it was time to watch Wheel, she would say, "with Ryan Seacrest!" I think she is warming up to him, probably a little more quickly than I am! This says a lot as she really, truly does not like change. But we have survived lots of changes with the set, changes to the puzzle board, new rules, and other different things each season, so I'm sure we'll survive this big change, too. It will still be a part of our nightly routine.

I don't mean to be so hard on Ryan. But to me, he's the American Idol guy. Maybe WOF should have followed in Jeopardy's footsteps and hired a contestant that was on the show, like the "New Baby Buggy" guy. Wouldn't that have been fun? At least we still have Vanna, for now!

By the way, I'm such a Wheel of Fortune nerd, I actually read Vanna's autobiography called "Vanna Speaks." I love that through the years she hasn't let fame and fortune get to her head and that she seems like a genuinely kind person.

This year will certainly be different and interesting, but also still fun to watch with Faith. Every time they have a "What Are You Doing" puzzle, Faith yells out, "none of your business." I doubt that will ever change!