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 E...
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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
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 E...
Last Wednesday I had my yearly doctor exam and when she said I should get my tetanus shot updated, I didn't think twice about it. The nurse said my arm would be sore for a couple of days, gave me a handout and stuck the needle in my arm. The next day my arm was sore and although I found it a little harder to pick up and carry Faith, I was glad the pain wasn't going to last long. Boy was I wrong! But not only was my arm sore, my whole body was. I felt achy and extremely tired. According to a medical site on the Internet, these were mild side effects of the Tetanus shot. If these were only mild side effects, I would really hate to have them at a moderate or severe level. My arm is still red and sore on day 2 after my tetanus shot. On Friday, two days after getting the shot I felt so tired that I took a four-hour nap after getting Faith off to school. Then on Saturday I took a three-hour nap up until 7 o'clock, but still felt tired and was able to go back to sleep around 10. ...
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 Ne...
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