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 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...

Have you ever 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 every day 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 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...

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, 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 together this evening after I got home....