Faith's Mom's Blog

Faith loves going to plays, musicals, ballet performances, and other events in which her friends perform. When she was younger, I thought attending these things would be too overwhelming for her as she has a strong startle reflex. Usually, it's loud sudden noises that trigger a strong startle response. I figured out though, that as long as the noise is constant, and she knows what to expect, she actually does very well. When I found out that Dreams in Motion was doing wheelchair dance again this year, I figured she would want to do it. When I asked, she enthusiastically said, "YES!"  She was so excited to go to her first practice. She told everyone she saw that she was going to be in a dance performance! During practice, we found out the theme was Encanto (which we have never seen). They were going to be dancing to a medley of songs from the movie. There were about a dozen participants, some with manual wheelchairs and others with powerchairs.  During practice, each of

It's hard to believe that Faith is 19 years old and has never had a major illness or extended hospital stay since she was in the NICU. The only other time she had to stay in the hospital was when she had her g-tube placed when she was two years old. That is, until now. And to think it all started with her having a simple outpatient procedure that had nothing to do with the reason she was hospitalized.  Day 1: Thursday - the Procedure  Faith and I got up extremely early as she had to be at the clinic for her outpatient procedure. The procedure was a lumbar puncture in order to do a test dose of medication called baclofen, which would help reduce high muscle tone and spasticity. If the results were good, and it helped her muscles relax, we would have the option (in the future) of inserting a baclofen pump so that she could receive the medication continuously via a catheter in her spine.  I stressed the importance of giving her anti-nausea medication before the procedure because I kno

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

Finally, on November 4th, the day the elevator in our building was fixed, I was able to take Faith downstairs so she could check out her new van! It happened to be a beautiful day, close to 80 degrees, which is rare for North Dakota in November. We had respite care that day, so I had her record me getting Faith loaded up for the first time.   Faith is all smiles about her new van! Faith is ready to roll! After loading her up, the three of us went for a fun drive including a trip through McDonald's so Faith could get a chocolate chip cookie. Faith was having so much fun as we drove around. She kept randomly shouting out things like, "Happy Birthday!" and "Merry Christmas!" (I am looking forward to driving around and looking at Christmas lights with her this year!) I guess she really does think her van is the best gift ever!  Faith inside the van. Earlier this week, we used the van to take her to an appointment with the general surgeon. She wanted to check Faith&#

Faith in her "new" van in 2011 It was back in August of 2011 that we got our first accessible van. Before that, we had a purple special needs car seat called the "Special Tomato." Eventually she got too big for her special tomato and we needed to graduate to an accessible van. We were thankful to have found one in Bismarck for a decent price. While it suited our needs, there were still some concerns. For one, the electrical system was really wonky, which affected the ramp.   Even with the weird electrical system, it got us to where we needed to go. We even had some fun family adventures like driving all the way to Toronto and back, and also to Winnipeg. The van also got us to some of Faith's medical appointments in Minneapolis and Fargo. Despite its quirks, the 2006 Dodge Caravan was a good van. Except for when it rained. It seemed the electrical system went super berserk when it rained. One day we were on our way home from a physical therapy appointment in th

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

Ever since I began this blog (back in 2009), I've always had the faith verse from Hebrews 11:1 on the header. But as of late, I feel the passage from 2 Corinthians 5:7 better reflects our current season of life. This past year has been one of the more challenging ones we've had in light of caring for our daughter. As she has gotten heavier, I found lifting her has presented opportunities for straining my back. Thankfully, I’ve been able to receive healing through both prayer and the hands of a wonderful friend who is also a massage therapist. At the same time, I know I can no longer lift Faith as I once used to. Faith hanging out at the eye doctor. She received a good report and still does not need glasses!  Another huge change is that this past spring, Faith officially became a woman. While this is usually something for girls to celebrate, for us it provided a new set of challenges, including major PMS symptoms. Her sensitivity to loud noises heightens during this t