Faith's Mom's Blog

The month of May is already nearly over - it makes perfect sense why it went by so fast as 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 had another ro

Growing up, I never honestly thought much about what it would be like to be a mom one day. In my preteen years, because of the heart condition I was born with, my cardiologists told me my heart would never be able to handle a pregnancy. I determined that when I grew up, instead of having kids, I would have lots of pets. I loved cats, dogs and horses and envisioned a future with at least one or two of each.      Growing up, being a mom is something I never thought I would be I was fine with the fact I would never be able to have a baby. I really was. Until the day in my early 20s, I visited a friend in the hospital who just had a baby girl. I walked in to see a tiny little bundle wrapped in a pink blanket snuggling in her mother’s arms with daddy beaming with pride alongside the bed. I was not prepared for the emotion that would stir my heart. I put on a smiling face for my friend but left the room in tears. I would never have that opportunity, I thought. I would never know what

It was 35 days ago that our calendars told us it was the first day of spring. In North Dakota, we usually can't depend on the calendar to determine when spring will actually come. We know this, but every year, we still wait expectantly for spring to come - for the weather to turn warmer, for all the snow to finally be gone and for the grass to start turning green again. And for every one's favorite part - putting away all of our winter garb and donning our spring jackets. None of that has happened so far. Thirty five days later, we are still waiting. Faith not looking too thrilled about still having to wear her winter coat and mittens Just last week Bismarck broke their one-day snow fall record when we got over 17 inches of fresh white stuff. Church services were canceled on Sunday and on Monday the whole city shut down. Faith got a snow day from school and I did as well from work. Thanks to a few days that the temperatures climbed to above freezing, most of the snow has m

Our church service (along with many other services throughout the area) was canceled today because of our spring blizzard. So while I didn't get to go to church, I was still thinking about it! The photos from this post were actually taken from last week's church service.  Finding “the perfect” church is not an easy thing to do. Especially when you are trying to find one that works well for each member of the family, one of which has special needs. For me the perfect service consists of charismatic praise and worship, an inspiring, truthful message followed by fellowship with other church attendees. For Rob it is different though. He could give or take the praise and worship and get right down to the sermon – the more intellectual the better. Rob likes to take a message he hears and chew on it for days thinking, pondering and mulling it over. And then there is Faith. She does not like loud and she does not like microphones, sudden clapping or spontaneous "Amens

The state of North Dakota has been making a lot of headlines lately. In 2012 we became the second top oil-producing state in the nation and this year we were dubbed "the freest state in the U.S." At one time, North Dakota was known for it desolation, its frigid winters and low population. Most people probably had a hard time finding North Dakota on a map. I don't think that's quite the case anymore. People are flocking to North Dakota for jobs. Our state has one of the soundest economies in the country. But even before all of our new-found popularity, I was a proud North Dakotan when it wasn't cool to be one. Faith enjoying the sights of the Missouri River in Bismarck, North Dakota And now, in light of recent events in our legislature, I am even more proud to be from this great state! The senate and house passed some of the most pro-life bills ever and Governor Jack Dalrymple signed them into law! You might wonder why I'm talking about this on my b

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