Faith's Mom's Blog

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...

Yes, it's true that Faith has been celebrating her birthday ever since last week! I mean, a girl only turns 19 once, right? And this is the last official year of her being a teenager! Last Tuesday when she woke up, she said, "I can't believe I'm 19 already!" She was super excited because not only was it her birthday, but it was Tie-Dye Tuesday at her day program, and she was bringing cupcakes to all her friends there!  During the drive to Mandan, she asked if she was going to get any flowers for her birthday. I kept telling her I really didn't know. (She is still upset with me for throwing out the flowers that her cousins had gotten her in May for her graduation.)  I wasn't planning on getting her flowers, but I was pretty sure she would get at least one bouquet. She had a blast at her day program and on the way home she said she couldn't wait to see the apartment (she knew I was going to put up decorations for her.)  She was so excited to come through...

Oh. My. Goodness. What a month! It's certainly been challenging, but thankfully there were a few bright spots to help us through. At the very end of September, both Faith and I came down with colds. They would not go away!  Faith was really stuffed up and seemed pretty miserable. I thought she might have a sinus infection, so I took her to the walk-in clinic. Although I didn't think we had COVID, I asked to be tested just to give me a peace of mind.  They only had the nose swab available. I was nervous about it being traumatizing for Faith. As we waited for the nurse to come back in the examination room with the test, I prayed for Faith that she wouldn't have a tough time. I should have remembered to pray for myself!  I told Faith I would go first so she would know what to expect. When they stuck the swab way up my nose, I nearly started crying. It gave me flashbacks to when the breathing tubes got pulled out of my nose following open heart surgery. It was sort of the sam...

Back in August of 2011, we got our first accessible van. Before that, we had a purple adaptive car seat called the "Special Tomato." Eventually she got too big for her that, and we needed to upgrade 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 during rainy weather. One day we were on our way home from a physical therapy appointment in the pouring rain.  We were driving down Century Avenue (one of t...

Twelve years ago in late April, we were given the dreaded news that our daughter had spastic quadriplegia - the most debilitating form of cerebral palsy.  I will never forget looking down at my six-month old baby, fast asleep in my arms, while her doctor talked about the possibility of her being in a wheelchair as she became older.  At the time, it was not like me to show such public displays of emotion but on that day I couldn't hold back the tears. In the days that followed I had so many questions.  Of all the questions though, there was one that I asked more often than others. "Can God heal my daughter?" I came to believe that He could, even though I knew it would take a miracle.  Faith shortly after we brought her home from the NICU where she had a 73-day stay By definition a miracle is, " an unusual or wonderful event that is believed to be caused by the power of God." When a true miracle occurs, there is usually no scientific explanation for ...

Faith was so excited last weekend when I told her they were having wheelchair soccer again. Her first question was, "Can Adam push me again?"  I told her I had no idea if he even went to school at the University of Mary anymore. When we got out there, she was disappointed to learn he had another obligation that day. Everyone assured us Adam would be there the next time. She still had fun with a few other guys from the college soccer team who pushed her around to help her play. In wheelchair soccer, they don't actually use a soccer ball, instead it's more like a beach ball. Normally, the soccer players who push the kids around throw the ball to each other and then help the kid they are pushing hold onto it as they try to get into the net. She had so much fun and the faster they pushed her, the bigger the smile on her face. Ramsey helps Faith with the ball Faith making friends Faith having fun with Garrett the goalie This weekend, despite the fact s...

November 17 marks World Prematurity Day . One might wonder why awareness needs to be raised about premature births. Well, I can tell you firsthand that it is a really good thing when more people are aware of the risks and complications, not to mention the emotional toll, of having a baby born too early. Having a baby born prematurely is not something most expectant parents think about until it happens to them. Most moms-to-be who first learn they are pregnant automatically think they have seven or eight months to prepare for one of the biggest days of their life. Expectant parents usually have one response when asked if they are hoping for a boy or a girl - "As long as the baby's healthy." But sadly, sometimes that's not always the case - especially if the baby is born too early. I will never forget the book I was reading shortly after finding out I was pregnant with Faith - "What to Expect When You're Expecting." It was a great resource that o...

One of the main reasons we sought chiropractic care for Faith was to help her with her startle reflex. Most people startle when they hear a loud, sudden noise but for Faith her startle can be debilitating. When she was younger, if she startled often in a short amount of time, she would break down in tears. Her startle made it difficult to do things like being in a school program or going to the movies. It was hard to watch her startling constantly during a church service when someone spoke into a microphone. Her whole body would tense up making it impossible for her muscles to relax. Besides her startle, we were also having a tough time dealing with her emotions and behavior. She would have screaming fits that left me and Rob feeling helpless, not knowing what to do to help her. We thought as she got older, things would get better. But last year during school, her tantrums escalated, and we chalked it up to pure exhaustion. Her pediatrician even agreed she was just too fatigued a...

Today marks Faith's 8th day of school and we are all adjusting to a new schedule. Faith has made huge strides this past summer in sleeping better and having more energy, so we decided to have her go to school from 9:00 a.m. to 3:00 p.m. 5 days a week. This is a change as last year she did not go Tuesday and Thursday afternoons due to how tired and worn out she would get. Faith's first day of 4th grade School starts at 8:30 a.m. but we asked if it would be okay for us to get her there at 9:00 instead. This allows us to more time to get her first feeding into her before she even gets to school. Her aides noticed last year that when we brought her to school without any food in her tummy, she was pretty sluggish and tired upon arrival.  Sometimes, after getting her to school she wouldn't start getting her feeding until after 9:00 a.m. which meant, that because she gets a feeding every 3 hours, her last feeding of the day didn't end until 10:00 p.m. Another advantage ...