This past weekend, Faith and I
both got to experience the Medora Musical together - for the first time ever!
We went with my dad and sister. The singing and dancing definitely met our
expectations. After the National Anthem, some of the first songs they sang
included, "Let's Hear it for the Boy" and "Dancing on the
Ceiling." Both songs were a great and energetic way to start the show.
Faith was super excited, nearly dancing out of her chair! One reason she could
hardly contain her excitement was that a few of the performers (Adam and
Taylor) go to our church! The storytelling in between the musical numbers
described how the little "cow town" of Medora came to be, as well as
the influence that Theodore Roosevelt had in North Dakota.
View from our seats!
Close up of the performers.
Auntie Dawn and Grandpa
During the song, "Paint Your
Dreams Across the Sky" by Dolly Parton, the cast invited the children to
join them onstage. I wasn't expecting one of the cast members to come up and
stand by Faith to sing. It was super sweet, but unfortunately, I didn't get a
picture. They also sang "His Eye Is on the Sparrow," along with a
medley of gospel songs.
There were country songs and funny songs, too, that got
the crowd laughing and clapping along. One that I remember was "40 Cups of
Coffee." The entertainment also included a trick roping cowboy and another
one yodeling.
We were thoroughly enjoying the
show when I noticed a shift in the weather. It had been bright and sunny upon
arrival, but it had changed to cloudy and windy. Just as they were about to get
into the Paul Bunyan Lumberjack Show, one of the ushers came over to us and
said they were going to call the show in five minutes if we wanted to get ahead
of the crowd to the elevators. I thought it was very kind of him to give us a
heads up, but I was also very disappointed.
Sadly, we didn't get to see much of the lumberjack show.
When we got up to the parking
lot, my sister Dawn pushed Faith as fast as she could to the van and just as
they got there, it began to rain. Just after the four of us piled inside the van,
it began to downpour.
Since we were just sitting there, I got a feeding going
for Faith. After the traffic cleared, we sadly made our way to Dickinson. All
was not lost, though, as there were some gorgeous rainbows in the sky. I have
never seen so many of them in such a short time span!
Bad weather heading straight for us.
The rain was coming down hard!
Videos by Michael Lawlar
Beautiful double rainbow heading from Medora to Dickinson (photo by Dawn Lawlar)
After getting to Dickinson, we
found a place to eat. It was called "Sanford's" and when we pulled
into the parking lot, Dawn and I realized it was the same restaurant we had
eaten at when we had traveled to Watford City about 3 years ago.
After supper,
we made our way back to the hotel and started Faith's evening routine. It had
been quite a day. I was so proud of Faith for how she was handling the
traveling and the disappointment with the musical ending early.
Waiting patiently for her chocolate milkshake!
Being udderly silly!
The next day after checking out,
we set out for our next adventure: a visit to the Dickinson Museum Center where they had the Badlands Dinosaur
Museum. Faith loves dinosaurs and she couldn't wait to get a new shirt for
T-Rex Thursday at her day program. It was fun to look at the bones and try to
imagine what it was like when dinosaurs roamed the earth. There were also
numerous displays of minerals from all over the world, some of which were
fluorescent.
We also explored the Joachim
Regional History Museum and Dad even asked if they could open up the Pioneer
Machinery Hall, which they sometimes don't do on Sundays depending on how busy
it is. Faith was a little bored with some of the history stuff, so she and Dawn
ventured to the gift shop where she helped her auntie pick out stuffed dinosaur
toys for her grandkids. After all that, we hit up the A&W/KFC and made our
way back to Bismarck.
Dinosaurs and fossils galore!
Faith didn't look too scared!
Faith checking out the cool fluorescent fossils.
Inside the machinery hall. I told Faith this is what Laura from Little House travelled in.
Grandpa was super impressed with this old tractor.
Getting Faith to the Medora
Musical was something I have been wanting to do for a long time and with the
improved accessibility at the venue, along with help from my sister, we were
able to make it happen! I was also very thankful that Faith's grandpa could
accompany us. I was so happy to be driving to western North Dakota, as that
will always be home to me.
The end of July was a great time to head west as
golden round bales dotted the landscape and the corn, sunflower, and wheat
crops were flourishing. The Badlands looked so beautiful, and we even passed by
a large herd of bison. It truly was a wonderful weekend getaway!
Here it is the first day of August and one thing is certain: last month was a busy one! Both Faith and I had some important appointments, plus she had her 6-month evaluation for her day program. It's so hard to believe she's been there for half a year already.
Faith at the Sock Hop at her day program
The Day Program is one of her favorite things in the world. She loves going and I'm so glad they love having her there. She
is a bright light and full of joy wherever she goes. She is also full of
encouragement, which I believe is one of her God-given gifts! But besides going to her day program and therapy, Faith had some other major events - all of which take place the last week in July!
Big Event #1: Our First Baseball Game
The first was attending our first-ever Bismarck Larks baseball game. We didn't just attend, though. We both got to go on the field where she placed the ball on the mound and then announced into a microphone, "Play Ball!" This opportunity came about through Kids in Motion, where Faith goes to therapy twice a week. They had asked if she wanted to take part and she exclaimed, "Yes!"
My contact person from the Larks told me I would get 4 free tickets in accessible seating. It ended up working out so that my sister, her husband, and one of their sons (who plays baseball) were going to be coming up from Nebraska so they were able go to the game with us!
At the ballpark, while making our way to the entrance, I was totally surprised when a Larks fan saw Faith and took off his jersey and gave it to her! I couldn't believe his kindness and generosity! We then found our contact guy, found my sister and her family, and then went onto the field near third base by the team's dugout to get our directions on what to do.
Faith had to go to the pitcher's mound, deliver the baseball, and then go back to our spot by the dugout while they sang the National Anthem and made team introductions. After that, I had to wheel her back to field. The guy with the microphone explained to her that he was going to count down from 3 and then she was could yell, "Play Ball." She was so excited though, that she didn't wait until the countdown was done!
Hanging out with the Graffs on the field before the game.
Faith got to put the ball on the mound!
Afterwards, we made our way to our seats. We had never gone to a
baseball game together and I honestly didn't think she'd make it through
all 9 innings. She totally surprised me by maintaining her enthusiasm
until the very end! It helped that the Larks were winning and there
was a lot of music, dancing, and cheering. Plus, the Larks mascots came by quite often, giving her a high-five every time.
I have to say I was totally impressed with every aspect of the Larks organization. Not only was the accessible seating in a good spot, but everything was completely accessible. Even the little gift shop had a temporary ramp placed over the door's threshold so I could roll Faith in there. Besides Faith, there was another little girl with special needs who, with the help of her sister, got to make her way around the entire baseball diamond in between innings. I really liked their show of support for the special needs community.
Having a ball!
Faith loved Merrifeather Lewis!
Faith and Preston in their "22" Larks Jerseys.
Preston getting an autograph.
After the game the entire team stuck around to give autographs. Faith got one autograph while her cousin went all out and had every player autograph the jersey he had tried so hard to win! It was a really fun evening and the weather was perfect at just 78 degrees. Right after the game, we headed home and got ready for the next day.
Big Event #2: Botox Injections at the Hospital
Despite needing to be at the hospital at 8:30 a.m., Faith wasn't actually in the operating room until 10:30. One part of the delay was getting the right size sling for the lift to transfer her from her chair to the hospital bed. As they were getting her into the sling and then getting her hospital gown on, it was all I could do to jump in and do it for them. I had to remind myself that this was their job!
Faith has had Botox in the past but it didn't seem to last very long for her. Also, at that time, she wasn't put under for it, so it ended up being a very traumatic experience every time she did it. I just wasn't sure it was worth putting her through all that trauma and then not gaining very much from it.
Her physical therapist, however, strongly recommended that we try it
again to see how she responded. It was her hope that she would be able
to tolerate her foot orthotics for longer periods of time. Plus, it
would allow them to work more with her legs in order to increase
strength and range of motion. I was hoping it would also help her be
more comfortable in general.
Faith at Kids In Motion with some of her OT/PT team
Faith with her favorite nurses for her History and Physical the week before her procedure
The procedure itself took just over an hour. When I went to the recovery I could tell she didn't feel well and asked the nurse if she had thrown up. She said she did a little bit but they were able to suction it out of her mouth. I was a little surprised she got sick, especially considering how well she had done last summer when she went under for her dental work. But I also knew that considering where she was in her monthly cycle, it was normal for her to experience some nausea around this time of the month.
It took her a while to fully wake up. They kept her there a little longer just because of her nausea plus her blood pressure was a little low. Finally, though she was able to go back to her room. Things looked promising when she ate some graham crackers and drank some juice. After checking her vitals three more times, they said she could get discharged. This time there was just one nurse and she was pretty busy so I said I could get her dressed.
We got home around 2 in the afternoon. I tried to do a very watered down feeding at a slow rate to see how she did. She immediately became nauseous again. She told me she wanted to get out of her chair and sit with me on her bed.
I think part of the issue was that she was feeling sore where they had done the four injections. I tried to talk her into laying down with me, but she refused, most likely because her tummy was upset. So we sat on the bed together for over an hour. I just sat in the most comfortable position I could and rocked her in my arms. She even fell asleep for about 10 minutes.
She eventually seemed better and wanted to sit back in her chair. I gave her water through her tube and had her drink some juice from a straw. Later that evening, she asked for a feeding and I knew she was past the worst of it. Before going to bed, she asked if she was going to her day program tomorrow, and I told her she could. The doctor had told her she could back into her normal routine the next day.
After sleeping for 10 hours, I was surprised when she woke up and didn't want to go to her day program. She said, "I just don't want to chance it." I knew she was afraid she was going to throw up again so I told her if she's not up to it then she could stay home. We just laid low all day and didn't do too much because the next day we had a very special dinner to attend.
Big Event #3: Grandpa and Grandma's Belated Anniversary Dinner
My parent's 50th Wedding Anniversary was actually on June 3rd, which was just 2 days after my dad had partial knee replacement surgery. Thankfully, he did very well with the surgery but it meant he would need to spend a majority of the summer doing physical therapy and recovering.
My sisters and I thought maybe we could do something at the end of summer or in the fall. But it turned out that most of the family would be here the last weekend in July so we figured we should try to do something then. We kept it a secret until just a few days prior. They were both very surprised and appreciated the effort we had put forth.
Grandma and Grandpa celebrating 50 years of marriage!
Many family members were able to celebrate with them.
Faith with Grandma, Grandpa, and some of her cousins.
Both of us had such a nice time!
Some of Faith's favorite girls in the world!
And her uncle, too, of course!
Faith and Grace (our amazing waitress who is also Grandma's favorite barista!
Faith's goals for the evening were to deliver Grandma and Grandpa's gift and get as many hugs from her cousins, aunts, and uncles as possible (see video below). As an added bonus, her Auntie Dawn gave her some monster cookies she had made just for her.
After all of that activity, she was still ready for church the next day. Shortly after getting home from her church, her aunt and cousins stopped over to say goodbye on their way back to South Dakota. And finally, our busy week had come to a close. I think we're both ready to get back to our regular routine and not have anymore major events for a while!
I know I have said this many times before, but I can't reiterate how thankful we are for the Inspire homeschooling group that Faith joined. Not only has she made some wonderful friends, her social skills have improved, she has more confidence, and she has learned a lot in science and history.
Besides all of that, she has gotten to take part in their annual Christmas program, which she absolutely loves. Last year, she played the part of an angel and had a few lines to say. This year, she played the one and only bright shining star. Not only did she get a narration part, for which she had to memorize and say an entire paragraph worth of words, but she got to say the best line of the play, "SO MANY STARS!"
This year's program, Starry Night, Noisy Night, told the birth of Jesus from the perspective of the animals that were present in the stable that night. There were sheep, chickens, cows, and of course a donkey. There were also shepherds, wise men, and angels. Mary and Joseph were there, too. And so was the star.
During practice one day, Julie, the music teacher at Inspire, had Faith say the lines, "and so many stars." (The two previous lines are, "So many sights! So many sounds!"). From that moment, Faith wanted that part. Even though the script called for other characters to say it, Julie generously gave her the part. Faith practiced every day - she knew all the songs, not to mention everyone else's lines. I kept telling her she could only say her lines during the program. I also told her that when there was a duet or solo, she couldn't sing their parts, even though she really wanted to.
At home, she sang the songs beautifully, but during Inspire, she only sang her favorites. At home, she recited all her favorite lines, but at Inspire, she did her best to restrain herself and let the other kids say their parts. I had no idea what would happen during the actual program.
Besides helping her, I had to come up with a star costume for her. One day while out shopping, I managed to find the perfect star outfit - a midnight blue dress with gold and silver stars, complete with a little gold jacket. I also grabbed a black pair of leggings with gold and silver stars because I honestly didn't think Faith would go for the dress. When it comes to clothes, she usually opts for comfort over style.
I also grabbed a ton of arts and crafts items in the hopes I would somehow be able to create a star to mount on her chair. I had no idea how to do it. Pinterest was of no help whatsoever. Apparently turning a wheelchair into a star is not really a thing that people do. I bought some tag board, a string of gold garland, lots of glitter, a roll of gold wrapping paper, two strings of LED battery-operated lights, and some really cool sparkly gold duct tape.
When I got home and told Faith she could either wear the dress or the leggings (with a black shirt that I was somehow going to glue some stars on to), she surprised me by yelling, "The dress!" Little did she know that she had just made my life a little easier. Now, I wouldn't have to worry about the shirt. She wanted to try the dress on right away and we discovered that it fit her perfectly. We also discovered the black leggings looked great underneath, despite the fact they were black and not midnight blue. She wore her outfit to Inspire the Tuesday before the program. I had also strung some lights through the bottom of her chair. Everyone loved her star look. So far so good.
Faith on stage with the shepherds, angels, and animals
The next day we got to work on the actual star. One of my friends had posted a picture of some Star of David cookies she had made for Hanukkah and I noticed the star was basically two triangles. I figured I would go for it. To my utter dismay, I couldn't make an equilateral triangle. It's harder than it seems! My sister-in-law said I should've used a protractor. Yes, I should have, I told her, while trying to remember what in the heck a protractor is. Math was not my strong suit and I had nearly failed high school geometry.
By this time, Faith was getting quite impatient about this whole star deal. I had to come up with a plan B. I basically used two squares to make the star. The trick was to make sure the star stayed put while resting on the push handle of Faith's chair. Somehow it all came together - the star just had to stay in place during the actual program.
Faith and friends
We had to be at the dress rehearsal at 5:00 p.m. The star looked great, I put lights on the star as well as her chair, and with her star outfit, she looked amazing! The other kids crowded around her telling her how much they loved her star costume. During the rehearsal, she was extremely excited. When it was her turn to be pushed up to the microphone for her narration part, her whole body tightened up, making it hard to enunciate. She said her other line, "So many stars" perfectly.
Faith's star all lit up - along with the candles for Silent Night
By the time the actual program rolled around, she was getting tired. It ended up being a good thing, though, because her body wasn't as tense which enabled her to say her lines loud and clear. She even tried to sing along with her friend, Maddie, with her solo. Maddie just smiled and kept on singing. It ended up being a great program, and even though Faith didn't sing like she did at home, I couldn't have been happier for her. Not only was she our shining star that evening, she is our joyful, sparkly girl all year round!
The entire Inspire group
Faith with her Grandma Deone, baby cousin Marla, and auntie Lisa
This December has definitely been a fun and festive one for our family! Normally we don't get too crazy over the holidays, but this year we did a few things that we normally don't do. I have probably mentioned that Faith is in a homeschooling group called Inspire Collective. She has been having so much fun hanging out with other kids and becoming friends with some of the girls in her class. Four of these girls are involved in Northern Plains Dance and this year we were invited by one of the moms to come and check out their performance of the Nutcracker.
We had never actually seen the Nutcracker before and the three of us absolutely loved it! The music, the dancing, the acting, and the costumes all made it a really good production. I'm so thankful we were able to experience it. Who knows, it just might be a new tradition for us!
Faith waiting for the Nutcracker to begin
Having a fun time at the ballet!
The next weekend we had to get ready for the Inspire Christmas program. The kids did a rendition of a play called "The Reluctant Innkeeper" and the music teacher was kind enough to add in a part and a few lines just for Faith. She played the angel who said, "Fear not for I bring you good news of great joy that will be for all
people. For unto is born this day in Bethlehem, a savior who is Christ
the Lord." Faith put a lot of time and energy into memorizing all the songs and not only her lines, but the lines of everyone else as well! One time after practicing at home, she yelled, "I am the greatest actress in the universe!"
In the days leading up to the program, she kept asking me if I was going
to be on stage with her and I kept telling her no. Thankfully, one of
her friends got to stand right next to her during the production so she
was chosen to get Faith on the stage and make sure she was in the right
place for her lines. Faith actually seemed very comfortable on stage and
didn't seem nervous or anxious at all. She was mostly excited and had a
lot of fun.
Faith was glad that her grandma and grandpa, along with her great aunt came to the program. Her grandparents and aunt from Canada were able to watch it online. Her grandmother said she watched it with "happy tears."
Some of the Inspire kids on stage
Faith in her angel costume
Faith was so glad Grandma and Grandpa came to her program!
During our time at Inspire this year, I have loved watching Faith grow, mature, and become a little bit more
independent. She has made some good
friends and looks forward to going each and every week, even when she's
really tired or not feeling the best.
After the program, Faith started a 3-week break from Inspire, which she was pretty sad about. She can't wait to get back to it. I for one am glad for the break however, especially in light of the below zero temperatures and all the windchill warnings that have been in effect. It's a good thing we have had some visitors that have helped to pass the time. One of her favorite visitors was the newest addition to our family!
Faith meeting her newest cousin, Malachi Daniel
Rob and Marla hanging out - she thought our remote was a phone!
Thankfully, it wasn't so cold on Christmas Eve, which is when we went to Grandma and Grandpa's. Three out of four of my siblings were there, along with most of Faith's cousins, and her three baby cousins. We didn't stay long but it was nice to see everyone, even if just for a little bit and to get some fun photos.
When we got home, Faith was excited to play with one of her Christmas gifts - the latest and greatest version of Wheel of Fortune on the PS4.
Parents and siblings, including Todd
The 3 of us at Grandma and Grandpa's on Christmas Eve
Faith with her little cousins
My niece Justine and great niece GracieLynn
Christmas Day was extremely cold so we stayed in and opened presents and had a nice dinner, which included a turkey breast, cranberry sauce, mashed potatoes, gravy, green beans w/ feta and walnuts, and stuffing. We also had a nice conversation with our family in Canada.
Having fun with Faith
It just wouldn't be Christmas without a new Tim Horton's mug from Canada!
Last week, I got the chance to hang out with my sisters when we went out for lunch, and even though it was freezing cold outside, we braved the weather to make it to my niece's baby shower. It was a fun time of games, food, and lots of gifts for my great nephew who will be born any day now!
Sister time!
My sister and niece at the baby shower
Faith, Rob, and Malachi
Tonight as I type type this, it is New Year's Eve and once again we are experiencing frigid temperatures. Right now it is -16 degrees with a windchill of -31. Rob braved the temperatures to pick up Applebee's for our dinner and for the rest of the night we're going to be watching our new favorite TV show, Heartland along with Spider-man Homecoming.
It has certainly been a fun and festive December! We pray that everyone has a warm and safe New Year's as we say goodbye to one year and transition into the next.