Faith's Mom's Blog

Faith loves going to plays, musicals, ballet performances, and other events in which her friends perform. When she was younger, I thought attending these things would be too overwhelming for her as she has a strong startle reflex. Usually, it's loud sudden noises that trigger a strong startle response. I figured out though, that as long as the noise is constant, and she knows what to expect, she actually does very well. When I found out that Dreams in Motion was doing wheelchair dance again this year, I figured she would want to do it. When I asked, she enthusiastically said, "YES!"  She was so excited to go to her first practice. She told everyone she saw that she was going to be in a dance performance! During practice, we found out the theme was Encanto (which we have never seen). They were going to be dancing to a medley of songs from the movie. There were about a dozen participants, some with manual wheelchairs and others with powerchairs.  During practice, each of ...

Finally, on November 4th, the day the elevator in our building was fixed, I was able to take Faith downstairs so she could check out her new van! It happened to be a beautiful day, close to 80 degrees, which is rare for North Dakota in November. We had respite care that day, so I had her record me getting Faith loaded up for the first time.   Faith is all smiles about her new van! Faith is ready to roll! After loading her up, the three of us went for a fun drive including a trip through McDonald's so Faith could get a chocolate chip cookie. Faith was having so much fun as we drove around.  She kept randomly shouting out things like, "Happy Birthday!" and "Merry Christmas!" (I am looking forward to driving around and looking at Christmas lights with her this year!) I guess she really does think her van is the best gift ever!  Faith inside the van. Earlier this week, we used the van to take her to an appointment with the general surgeon. She wanted to check Faith...

Twelve years ago in late April, we were given the dreaded news that our daughter had spastic quadriplegia - the most debilitating form of cerebral palsy.  I will never forget looking down at my six-month old baby, fast asleep in my arms, while her doctor talked about the possibility of her being in a wheelchair as she became older.  At the time, it was not like me to show such public displays of emotion but on that day I couldn't hold back the tears. In the days that followed I had so many questions.  Of all the questions though, there was one that I asked more often than others. "Can God heal my daughter?" I came to believe that He could, even though I knew it would take a miracle.  Faith shortly after we brought her home from the NICU where she had a 73-day stay By definition a miracle is, " an unusual or wonderful event that is believed to be caused by the power of God." When a true miracle occurs, there is usually no scientific explanation for ...

We've been reading books to Faith ever since she was a baby. When she was little, she had to wear an eye patch for 30 minutes a day in the hopes it would help strengthen her eye muscles so they would no longer turn inward.  Reading a book to her while she was wearing the patch was a great way to keep her distracted from having to wear it. Even after she no longer had to wear the patch, she continued to love being read to. Reading to Faith when she was little As Faith got older, we had hopes she would learn to read on her own. She is ten and that still hasn't happened. We continue to pray and try to find ways to help her be able to read. Her music therapist  is trying to do all she can to help us with this endeavor. We know her vision is fine, but we think her eye muscles might not be working properly to enable her to focus on seeing a word long enough to read it. Instead of reading, she spends a lot of time memorizing. For this reason, she likes shorter books and even t...

November 17 marks World Prematurity Day . One might wonder why awareness needs to be raised about premature births. Well, I can tell you firsthand that it is a really good thing when more people are aware of the risks and complications, not to mention the emotional toll, of having a baby born too early. Having a baby born prematurely is not something most expectant parents think about until it happens to them. Most moms-to-be who first learn they are pregnant automatically think they have seven or eight months to prepare for one of the biggest days of their life. Expectant parents usually have one response when asked if they are hoping for a boy or a girl - "As long as the baby's healthy." But sadly, sometimes that's not always the case - especially if the baby is born too early. I will never forget the book I was reading shortly after finding out I was pregnant with Faith - "What to Expect When You're Expecting." It was a great resource that o...

Not too long ago, someone at church commented to me, "Your daughter is so full of life." I have heard lots of positive comments about Faith throughout the years, but this one brought tears to my eyes. To think that my daughter - a nine-year-old girl bound to a wheelchair was full of life - meant the world to me. Faith's disability causes her to be different from her peers and others around her. She understands this, and although she gets frustrated at times, she doesn't let her disability get her down. She has a very positive attitude about life. I give a lot of the credit to those who pray without ceasing for her and to Jesus who helps her on her journey each and every day. I truly praise God that someone who sees my daughter sees that she has a joyful life despite her special needs. Full of joy I know too well this isn't always the case. Usually, when someone pictures in their mind a nine-year-old who needs to use a wheelchair for mobility, gets her nutri...

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...

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 w...

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 nation." At one time, North Dakota was known for its 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 ...

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...

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....