Faith's Mom's Blog

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 move

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 getting the book, "Kids Beyond Limits" by Anat Baniel before the lessons started and I am 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 delays and any other type of spe

Have you every felt this way?  I know I need to lift my eyes up But I'm too weak Life just won't let up And I know that You can give me rest So I cry out with all that I have left My prayers are wearing thin And I'm worn  Even before the day begins I'm worn I've lost my will to fight I bet there are a lot of special needs parents or parents with very young children who can relate to these words. I know I can. Whenever I hear the song, Worn which contains the above lyrics, I am transported back in time when Faith was a little baby. I was working full time during the day and trying to look after her at night. She did not sleep well, which meant neither Rob nor I sleep well either. To make things even harder, Rob worked overnights on the weekends. I was in a major state of sleep deprivation. I started drinking caffeine and eating sugar everyday at work to help me stay awake. It didn't help that my thyroid was out of whack. Eventually I

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 the kids. 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 when we see her pediatr

It seems we've been celebrating Valentines Day all week as we spent Monday, Tuesday and Wednesday making our homemade Valentines boxes and cards. Faith's class had a party today and we had our own "old school" Valentines Day party at work. Faith normally doesn't stay at school on Thursday afternoons so we decided to give her the choice of whether or not she wanted to stay for the class party. I was a little disappointed when she said she didn't want to stay for it because I don't like her to miss out on doing fun things with her classmates. I do think though that the parties can get a little chaotic (especially with all that sugar intake) and I know it's hard for her to relax in that kind of atmosphere because her startle is constantly kicking in. Still, after dropping her off at school I couldn't help but feel a little sad that she was going to miss out on the party. We did have fun making the boxes and cards and looking at all our Valentines

I have recently connected with another blogger who is the mom of a sweet boy with special needs named Silas. You can check out her blog at A Boy Named Silas . She is truly an amazing mom and I just ordered her book which is an account of the time they spent in the NICU with Silas. She just nominated me for The Liebster Award - Special Needs Edition . Thanks, Alana Terry ! I was very surprised, humbled and honored all at the same time. The Liebster award comes with certain rules, one of which is sharing 11 facts about myself: 1. I took piano lessons for eight years 2. I would love to have two Doberman Pinschers someday 3. I work for a health insurance company 4. I have only colored my hair once in my life 5. I’ve never had a massage (by a professional) 6. My all-time favorite movie is still Footloose 7. I’ve had a pacemaker since the age of 25 8. Along with my journalism degree, I also have minors in speech communications and animal and range sciences 9. I can

We are currently on day four with no working elevator in our apartment building, one that it is supposed to be handicapped-accessible. It has been a little frustrating to say the least. It was supposed to be fixed on Wednesday afternoon but we are still waiting. No working elevator in this apartment building It has been going out off and on recently but just once was it a major inconvenience when we were getting Faith ready to go to school and realized the elevator was not working. Needless to say, she was late for school that day. This time we discovered the elevator was out on Monday after we called the Healing Rooms and realized they were open. We gleefully got bundled up in our winter attire - even the below-zero temperature was not going to stop us. We ran into a major disappointment though when we got to the elevator and realized it wasn't working. We went back to our apartment and figured out what to do next. We thought about having the Healing Rooms come to us beca