Faith's Mom's Blog

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. ...

This past Sunday at church I noticed Faith singing along to the chorus with a little more gusto than she has in the past. She seemed a little more confident and really projected her voice once she caught on to the words that were being sung. I must admit, listening to her sweet voice singing the words, "He is faithful, He is glorious, He is Jesus, all my hope is in Him. He is freedom, He is healing right now" was enough to cause tears to stream down my face. Later after thinking about it, I realized that part of her new-found confidence in singing probably has something to do with the integrative music sessions she has been doing with a music therapist. Faith playing the xylophone fun with shakers Every couple of weeks, Jonnica comes into our home and spends about 30 minutes with Faith singing songs and playing instruments. I know how much Faith likes music so I was pretty sure she would enjoy doing this, but an added bonus is that the music therapist also does wo...

This is my first post of the new year, and it is already March - I guess I have some catching up to do! It has been a very cold winter here in North Dakota with several days below zero since December. I know that much of the country has had a tough winter too, so we are certainly not alone in being anxious for spring and the warmer weather that comes along with it. Faith especially seems to be struggling with the colder temps - it most likely affects her already high tone. It hasn't helped that it is more difficult to transport her since we can't use our van's ramp due to our door needing replacement. Rob has had to get her into the other side of our van which entails him sort of lifting her chair up into the van. We are looking forward to finally getting it fixed this week.  Now that I've gotten our weather-related issues out of the way, here is an update on what the rest of this New Year has been like for us:  We kicked off the year getting together with frien...

This past year has held many challenges, many changes, and some breakthroughs as well. We have met some new people who have helped Faith make forward progress but have been discouraged as certain prayers continue to go unanswered. Through it all though, there is one truth that remains - God has been with us and He has been faithful. He has placed many people in our lives who have kept us encouraged and who continue to inspire us each and every day to "walk by faith not by sight." As I think about our past year, I can't help but feel hopeful that the New Year will be better than the last! JANUARY - Me and Faith spent the tail-end of last year and the beginning of 2013 recovering from the flu. In fact, she was at the walk-in clinic on New Year's Eve. We recovered just in time to celebrate the NDSU Bison winning their second straight national championship. This year they are once again headed to Frisco, Texas to defend their title as they take on Towson University...

It's easy to get caught up in the hustle and bustle of Christmas and it can easily become a stressful time of the year instead of a joyful one. In our family, we know that Faith does best when her normal routines are kept and the fewer surprises the better. We tried our best this year to keep everything as low-key as possible and do less for Christmas than we have in the past. This included less shopping, less baking, and less activities in general. Instead of baking Happy Birthday Jesus cupcakes this year for Faith's teachers and caretakers, I found these cupcake Christmas tree ornaments and I wrote on the bottom of each one "Happy Birthday Jesus 2013" All I really wanted for Christmas anyway was to go our Christmas Eve service at church. While Faith wasn't willing at first, eventually she relented. The next day since opening Christmas gifts is outside of her normal routine, we had to actually coax her to open the gifts. Hard to believe for a 10-year-old, I k...