Faith's Mom's Blog

To me, the cooler months of fall seem more like a season of newness than do the cold winter months of January. Maybe it's because that's when school, Bible studies, and small groups all start up again and we transition from lax summer schedules to busier days filled with a flurry of activities. (I also realize that part of the busyness is that we have so much to get in before the snow flies). Another reason fall is a great time to get a fresh start is because according to God's calendar, the New Year actually takes place in either September or October during the Jewish holiday of Rosh Hashanah . Whether it's on purpose or not, it seems as though our family always experiences major transitions in the fall, and this year is no exception. Spending a perfect fall day at the park Burning documents - it's much faster than shredding plus this way we get S'mores! Hanging out in our crowded apartment/office We kicked off September by moving our office...

It seems the only time I've been updating my blog lately is when the seasons change! This time, though besides the season changing from summer to fall, there are some changes happening with us as well. Faith in her new chair - another recent change for us! Many of you know I quit my full-time job in the spring. My last day of work as a customer service representative for a health insurance company coincided with Faith's last day of school. I have been focusing on freelance writing full time. It has certainly been a time of depending on God to continue to supply for our every need! As a new school year approached, we decided not to send Faith back to school. After praying about it all summer, we made the decision to home school her instead. As I dropped off our paperwork to inform the school district of our intention, I felt an incredible amount of peace. To me, this is a sure sign that we made the right decision. Faith and friends at a library event Faith with ...

We've been reading books to Faith ever since she was a baby. When she was little, she had to wear an eye patch for 30 minutes a day in the hopes it would help strengthen her eye muscles so they would no longer turn inward.  Reading a book to her while she was wearing the patch was a great way to keep her distracted from having to wear it. Even after she no longer had to wear the patch, she continued to love being read to. Reading to Faith when she was little As Faith got older, we had hopes she would learn to read on her own. She is ten and that still hasn't happened. We continue to pray and try to find ways to help her be able to read. Her music therapist  is trying to do all she can to help us with this endeavor. We know her vision is fine, but we think her eye muscles might not be working properly to enable her to focus on seeing a word long enough to read it. Instead of reading, she spends a lot of time memorizing. For this reason, she likes shorter books and even t...

The book, In Sickness and in Health: Lessons   Learned on the Journey from Cystic Fibrosis to Total Health  by Mandy B. Anderson is the author's personal story of what life is like living with what doctors call an incurable disease.  In reading her story, I felt like I could completely relate to her. Although my diagnosis of a congenital heart defect is much different than hers, all the ways in which being a sick kid can take an emotional toll, is very much alike. For instance, most kids don't ever have to think about dying an early death or having doctors put an expiration date on your life. This cannot only be emotionally devastating but spiritually devastating as well as "words of death" are constantly being spoken over you.  As a kid, you can feel the fear and anxiety in those around you, so you take it upon yourself to be the "brave" one. You learn how to mask and hide your true feelings and inadvertently start pretending to be someone you are not. ...

Did you know that this week is Brain Awareness Week? I find it interesting that this is the week Faith will be introduced to an Anat Baniel practitioner and taking her first Anat Baniel Method (ABM) lessons during this week in particular. The ABM practitioner we are seeing is coming here from Milwaukee, Wisconsin. Rob met her in January during a workshop about ABM.  Through another mom of a little boy with cerebral palsy, we learned the practitioner is coming back to Bismarck, so we decided to schedule Faith for some lessons (they call them lessons, not therapy sessions).  The mom I talked to recommended the book, "Kids Beyond Limits" by Anat Baniel . I purchased and read the book before the lessons started, and I'm glad I did!  Through working with Moshe Feldenkrais , Anat Baniel has developed her own method of working with kids with special needs. For the past thirty years, she has worked with kids who have cerebral palsy, autism, ADHD, undiagnosed developmental d...

Earlier this week I had my annual appointment with my pacemaker doctor who comes to Bismarck from the Mayo Clinic in Rochester, Minnesota. It is a huge blessing that I don't have to travel to Rochester, which is about 600 miles from Bismarck. I really truly thought I would be in and out - a quick ekg, a quick pacemaker check, a quick chat with the doctor, and I would be done. I scheduled the appointment at 8:00 a.m. thinking I would make it to work just in time for my 9:00 shift. Boy was I wrong! I got up to the pediatric floor at about 7:50 a.m. Yes, the pediatric floor because the doctors who come from Mayo specialize in pediatric cardiology, so they are mainly there to see kids with heart defects. But since more and more kids have been surviving heart defects and growing into adults, some of these pediatric cardiologists specialize in adults with congenital heart conditions .   Anyway, so there I was on the same floor with all the kids - the same floor I take Faith to...

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...

"We're Going on a Bear Hunt" Children's Book - A Modern Classic

This morning, I had the privilege of going to school with Faith and reading a few stories to her class. One book I chose to read is called, "I Love You Stinky Face." (written by Lisa McCourt) This book is really a story about a mother's unconditional love for her child. The title of the book comes from the child asking the mother that if he was a smelly skunk and his name was "Stinky Face," would his mother still love him. She tells him she would put him in the bathtub, but if he still smelled she would tell him, "I love you Stinky Face." It's a cute story, but there is a story behind the story that I wanted to share with Faith's classroom. Faith and I share one of her favorite books with her kindergarten class.   After reading the book to them, I explained that a few years ago, one of Faith's friends and caretakers (Kimberly) took her to a place where they could make things out of clay. Faith decided she wanted to make a cup or a mug of...