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 ...
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Faith's Fun-Filled 4th of July
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Faith and I had the best 4th of July ever! We started the day bright and early to go to the parade in Mandan. We haven't been there for many years, so I was surprised that she wanted to go. I think maybe it was because she heard everyone at her day program talking about it and making their own plans.
Faith's grandpa went along with us, as well as her auntie Dawn (my youngest sister). Thanks to Dawn's connections with people who live in Mandan, we were able to park the van at her friend's house and then he drove us down to Main Street. Then, thanks to another friend of hers, we were able to enjoy the parade underneath a canopy right in the front row. I could not be more grateful to her friends for making it such so convenient for us!
One reason I was glad not to go to the parade in the past, was all the planning, parking, and walking it takes, not to mention sitting in the sun for almost 3 hours! Someone might wonder why it takes all that just to go to a parade.
Mandan has been hosting this parade for 144 years and between 20,000 and 25,000 people come to it. Because of the crowds, parking is a major issue and gets a little trickier for accessible vehicles because you can't just put the ramp down anywhere! But thankfully, Dawn had it all planned out and everything went very smoothly. In the end, Faith had a great time, and of course she and Grandpa made friends with those sitting around us.
After waiting for over an hour, the parade finally gets to us on Main Street!
One of my favorite parts was seeing all the horses!
It was a fun time with Grandpa and Auntie Dawn!
After getting home, Faith needed a feeding and a bit of rest before going to our next event, a barbecue at Grandma and Grandpa's. There were hot dogs, burgers, chips, pasta salads, and of course plenty of desserts! My niece and her family were there as well and had fun lighting off little fireworks. Not even the rain could deter them.
Enjoying the cooler weather on the front porch at Grandma and Grandpa's.
Weatherwise, it was an unusual 4th of July because it was so cool outside. I was thankful for this, as a couple of years ago it was 107 degrees in July. However, it was actually a little too cool, especially for sitting outside on the Capital grounds to watch a concert and fireworks.
At our previous apartment, I would wheel Faith out to the sidewalk where we could watch the fireworks from a distance. However, in our new place, it wasn't really possible to do that. So, I asked if she wanted to just go to the Capital instead. Not only was there a fireworks display, but there was also a free concert put on by the Bismarck-Mandan Symphony Orchestra (BMSO). This was the main reason Faith was so excited to go, because one of our friends from church played in the symphony.
After going back home for her final feeding of the day, we got ready to go to the fireworks event. I opened the closet and debated what to bring along. I grabbed a couple of sweatshirts and fuzzy blankets. I would soon find out I wished I had grabbed our winter gear instead! Not only was it barely 60 degrees, but the wind was blowing a bit, too. Plus, the clouds were hiding the sun. But at least there were no mosquitoes!
My sister came along with us again and we were glad to find an accessible parking spot fairly quickly. After running into some old friends of ours and finding a place to park Faith's chair and our lawn chairs, we hunkered down to enjoy the concert. Everyone around us was bundled up (except for some of the kids, who the cold didn't seem to bother at all!) Faith didn't seem bothered by it either, but she did have the warmest fuzzy blanket!
Getting ready for the concert to start!
The Bismarck-Mandan Symphony Orchestra gets ready to perform.
The sun peaked out for just a little bit!
Despite being chilly, it was a really nice event. The symphony was fantastic and together with a few singers, performed some really cool music, such as Purple Rain and Let's Go Crazy by Prince, a few songs by the Eagles, and Islands in the Stream. There were also a few songs that celebrated North Dakota and many patriotic numbers as well.
The symphony also played a United States Armed Forces medley and had members of the audience stand when they heard their official service song. I thought that was really neat! When the military members stood during their song, the rest of the audience applauded them. A few of my favorite songs the symphony played were Battle Hymn of the Republic and God Bless the USA.
Finally, it got dark (which doesn't happen until about 10:15 in North Dakota during the summer) and they were able to do the fireworks display. It really was a wonderful event, and I look forward to going again next year. Hopefully it will be a bit warmer, though!
Faith was so happy to see the fireworks!
All in all, it was a wonderful day to celebrate our country's birthday and remember how blessed we are to enjoy the freedoms that we have!
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 ...
Guest Post by Stephen Gallup Last week, a columnist for the local newspaper interviewed me in connection with a memoir I wrote that’s being published this year. It was a comfortable, low-key discussion in which he asked about the basic facts regarding my disabled son Joseph and what I’ve learned that might be of value to other families. It was the sort of dialog that required no special preparation in advance. I just sat down with him and talked about the subject closest to my heart. But looking back on it now, one thing bothers me. In concluding the interview, the reporter expressed heartfelt sympathy for everything I’ve endured. He was being more than polite. I mean, he laid the compassion on with a spatula. Startled, and already thinking ahead to what I had to do next that day, I just thanked him and said goodbye. But now that final note troubles me. I don’t want sympathy! First of all, from the point of view of a new author hoping to promote his book, sympathy...
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'...
This page contains affiliate links and Faith's Mom may earn a commission if you use them. As an Amazon Associate, Faith's Mom earns from qualifying purchases. Learn more. 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...
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