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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Our Shining Star
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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, but her social skills have also 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 for the program 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, but she is also our joyful, sparkly girl all year round!
The entire Inspire group
Faith with her Grandma Deone, baby cousin Marla, and auntie Lisa
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...
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. 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 loo...
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...
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 al...
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