Faith's Mom's Blog

I am usually all for Faith trying something new. Years ago, though, I drew the line at adaptive skiing. I knew that Dreams in Motion does an annual event at Huff Hills (North Dakota's largest ski area), but I was too afraid to let Faith try it. I just didn't know how she would do being strapped down so tightly, especially with her high tone and issues with her left hip.  At her day program, some of her friends had been going for years and Faith thought it sounded like so much fun. So, this year, I decided we should give it a try. Since there are only 20 spots available for this event, I got her registered the morning it opened up.  Lots of fresh powder at Huff Hills  As the event drew near, I knew I needed to get snow pants for her (since she had none) and make sure I had all the right winter apparel to keep her warm. That was also one of my biggest concerns is her getting too cold, which can cause her tone to increase even more.  As the day approached, she was...

This past week marked a huge milestone in Faith's life - she has been at her day program for 4 years! I well remember how excited I felt when I found out that in order to qualify for the program, all she needed was to be 18 and have a high school diploma.  I know that is not the case in some states. And in many cases, parents choose to have their special needs child in school until they are 21 and then after that they can attend a day program. For Faith though, since I homeschooled her, we were both ready for her to move on to her adult life when she turned 18!  Faith at the Science Center with one of her day program staff  After a few meetings with her case manager and day program staff, she was ready for her first day. But was I? She was excited when I dropped her off, but as I drove away from the building, I began to cry. Would she really be okay here? Would staff know what to do if she looked uncomfortable or seemed like she was in pain? Faith is verbal, but she canno...

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 ...