Faith's Mom's Blog

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...

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 ...

Upon reflecting about the month of July, I have come to the conclusion that Faith has never had more appointments in one month than she did last month. She had over a dozen chiropractic appointments, eight ABM lessons, two visits from the Easter Seals coordinator, one occupational therapy consult, one optometrist appointment (and a partridge in a pear tree!). The Easter Seals visits were merely a formality as Faith has a new case worker and we needed to update some paperwork. Her disability case manager came along on one of the visits. Her optometrist appointment was her annual routine eye exam, and we are glad to report that Faith's eyes continue to remain the same and she still isn't needing glasses. We are thrilled about this as Faith had glasses at one time and we also had to do patching on her eyes, but her vision and her eye muscles continue to function normally! (Praise the Lord!) Faith getting a chance to relax! In June, Rob took Faith to see a chiropractor for ...

The month of May is already nearly over! But it makes perfect sense why it went by so fast, because this month was jam-packed. It's hard to believe that June is just around the corner. I can share in our pastor's sentiment when he said the year is half over, but it seems like 2013 has just begun! On the first Thursday of May, JOY Internationa l had its last Java JOY of the season. We had a great get-together as we celebrated moms and discussed the powerful prayers of a mom. We had a wonderful panel of three amazing moms who shared their hearts on praying for their children.  We also shared testimonies of answered prayers for ourselves and our children. As Java JOY coordinator, I am relieved to be taking some time off, but I already have lots of ideas for our next season which starts up again in September!   Me with our mom panel at Java JOY Me and Faith on Mother's Day Me and Faith playing our favorite game - Wheel of Fortune At the beginning of the month, we...

To someone who might not know Faith well, or to the stranger observing Faith, her movements probably seem pretty abnormal. Her tone kicks in and her muscles tighten, not allowing her to move or relax.  Every once in a while, she throws her arms up in the air for no apparent reason. When she's tired, her head hangs to the side and she can barely keep it up, even while sitting supported in her chair. But to me, this is Faith, and this is how she has moved for most of her life. She has spastic motions that are anything but graceful. While sitting with me, her hand will shoot up and slap me in the face. There is no reason - no purpose for some of her movements - that is all she and her parents have known. We are in a constant battle with her high muscle tone. Sometimes she tightens up so stiffly we can barely pick her up. This is how it has been for her nine years of life. This is normal for us. This week I learned life does not have to be this way. This week I've seen Faith mo...

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...