Faith's Mom's Blog

In the waiting room, at pediatric therapy, I am known as Faith's mom. Just as others are known as Ashley's grandma, Luke's grandma, Chloe's mom, Abby's caretaker. At first, we were just a familiar face to one another. But as our children and grandchildren came for therapy more and more, we began to talk. We compared stories. We asked each other questions. Our waiting time has now become social hour. We have become our own little community - supporting one another, offering prayers and talking to those who know exactly what we go through. It's not just the parents, grandparents and caretakers who share a special connection with one another. It's also the three receptionists who sit behind the desks. Some children, like Faith, have been going to therapy for years. They know our backgrounds and they know when we aren't feeling well. Most of all, they know and understand our children. They laugh at the children's stories, and they cry too when one of t...

I opened it with curiosity . Faith's name along with our address were on the outside of the envelope with a first name scrawled in the left-hand corner. I smiled as I read the contents. It was Faith's first invitation to a party. As I looked at the time and date of the party I felt almost relieved that we would have a good excuse for Faith not to attend. The Halloween party was scheduled for October 25 th - the same day Faith would be having her birthday party. Sure, I was excited about Faith being invited to a party by one of her classmates. But it also caused a little anxiety wondering how the details were going to be worked out. How handicapped accessible was their home? If there were going to be lots of kids attending, how would Faith handle all the noise? Was the Halloween party going to be too scary for her? Well, not to worry because Faith wouldn't be going anyway. A few days later, before I had gotten a chance to call Faith's classmate's mother to tell ...

Faith turned six years old yesterday. And to celebrate how far she's come in those six years, we decided to have a not-so-little celebration. There were lots of guests, lots of gifts, lots of cupcakes and most of all, lots of love.  We are amazed at how many lives our daughter touches in a special way. She receives so much love and generates it back to those around her. Her smile brightens people's day, her laugh makes people laugh along with her, her joy is contagious. My husband and I are so thankful for the gift of her life - a life that He entrusted us to care for since the day she was born on October 25, 2003. We knew there would be challenges. We knew there would be tears. We knew there would be exhaustion. We didn't know, though, how much joy there would be. And yesterday, seeing Faith surrounded by friends - children and adults alike - family and even a few people in our building who don't know her all that well, brought gladness to our hearts. It was so wond...

When I heard that both Toy Story movies were going to be showing at a theater near us, I thought it would be the perfect opportunity for Faith to make her movie theater debut. The reason we have not attempted to take her to a movie is because she is very sensitive to loudness and sudden noises cause her to startle.  When she startles, she is not able to contain herself and her muscles tighten, she jumps, and her arms curl up toward her chest. Sometimes when she startles too much she gets upset and starts to cry. I figured, though, that since she has seen Toy Story 1 and 2  endless amounts of times at home, there wouldn't be any surprises to cause her to startle since she would know what was coming next. Faith with some of her toys, including Woody and Buzz. (Photo taken in 2008) We got to the movie theater fairly early thinking it would be a good idea for Faith to get used to her surroundings. When we got into the right show room, there was music playing over the speakers a...

The weather people have been threatening us for days and now as I write this post, there is white stuff swirling and twirling down from the sky. I guess maybe we North Dakotans should have known that we were going to have an early winter, beings our summer was actually more like fall. But still...it is truly sad to see the green leaves falling off of the trees without even having a chance to turn color first. It is also truly sad that parents have had to dig out their kids' winter attire, including mittens and boots. I know it can be difficult getting kids all bundled up to go out in the 20-degree weather, as we are having now. But for parents of kids in wheelchairs, it is not just difficult, it is a chore unto itself. Faith's new chair, while she sits in it so well, is truly a pain when it comes to her winter garb. She has these side lateral things that help her stay in an upright position. You can pop the laterals out which is great for getting her coat on but since she is...

I remember very well the day in April of 2004 when we got the news that Faith had health issues that could lead to cerebral palsy. It was one of the most heartbreaking days of my life. I wondered how this smiley, happy little girl who would lie on her back and move her arms and legs around could possibly end up with CP ? Faith as a baby.  When we returned home to Watford City after seeing Faith's pediatrician in Bismarck, there was one day where I opened up my Bible to Hebrews 11. For some reason, though, I skipped over to Chapter 12 and started reading it aloud to Faith. I couldn't believe my eyes when I came across verses 12 and 13. Therefore, strengthen your feeble arms and weak knees. Make level paths for your feet, so that the lame may not be disabled, but rather healed. Hebrews 12:12-13 I was so excited, I said, "Faith did you hear that?" and I read it again. I really truly believed that the Lord had given me that verse at that particular time for a reason...

I was very proud of Faith yesterday. She was so patient as she was fitted for her new SMO's. SMO stands for Supra-Malleolar Orthosis and are actually a type of AFO (Ankle-Foot Orthosis). These types of orthotics are designed to help the child maintain a vertical heel and support the arches of the foot. They are necessary for her foot because with her hypertonia her feet get pulled at a different angle than what is normal for the foot. It's sort of like trying to re-train the muscles to go in the right direction. It took about an hour and a half for her to get fitted. The hardest part was keeping Faith relaxed so that her physical therapist (PT) could get the best fit for her foot. When Faith gets excited, her legs shoot up and out and her tone is so strong that it's hard to keep everything in place. This is exactly what happened every time someone came into the room to say hi to her. Her PT started off by finding a plastic piece as close to the shape of Faith's foot...

Faith makes friends with a cute little goat.  Saturday was an absolutely amazing day. Our friend (and respite care provider) Michelle had told us about a miniature horse ranch that was having a fundraiser for the abused and neglected minis they take in. After having a wonderful time at China Star restaurant where we are friends with a lot of the staff, Michelle, Faith and I headed out into the country.  The weather was perfect - around 85 degrees with just enough of a breeze to make being outside a little more tolerable. As we drove down the gravel road into the driveway of the ranch we came upon a covered wagon and a team of horses pulling it along. We had to pull over to make way. There were people in the wagon waving to us passersby. It was quite a sight - not one that you see every day! Faith attempts to rope a pretend steer! As we made our way into where all of the festivities were taking place, I noticed a corral over in the northwest corner offering pony rides. There w...

Faith and Kimberly at Kimberly's college graduation reception Last night when I came home Faith was so excited to show me the Mr. Pumpkin Head she and Michelle had made. There it was on our bookshelf, right next to two Mr. Potato Heads. By the looks of it, Michelle and Faith had a blast. Once again, I found myself being very thankful for such wonderful respite care providers. I think respite care providers are a must for anyone with special needs children. I have to admit, I felt a little guilty handing off my daughter to someone else while I went and did, well, nothing. But that was the point. When we found Michelle, we were at the top of our stress level. We both needed a break. The difference between us and couples with non-special needs kids is they could just hire a babysitter or have friends and family look after their children. We on the other hand, need someone who has had special training to look after our special needs daughter. Rob and I applied to have a certai...

You know how kids come up with all sorts of excuses to not go to bed. They need a drink of water, they need to go to the bathroom, they need to make sure there's nothing under their bed or in their closet. My daughter is no different. I share a room with Faith. We are finally getting her to sleep in her own bed at night. It is an ongoing process. I am proud of her that she can fall asleep all on her own. She used to need to be cuddled, rocked and sang to. Now I put her in her bed, and she falls asleep, after about 30 minutes, that is. No matter how tired she seems, it always seems to take a while before she finally drifts off to sleep.  Faith cuddles in bed with her doll, baby Allie.  Last night, it seemed especially hard for her to fall asleep. Here is how are night went: 10:00 p.m. - I put Faith in her bed while she yells, "I want to stay awake. I don't want to go to bed." 10:05 p.m. - "Mommy, could you help me out." "What's the matter?...

When I pick Faith up at kindergarten, she is full of excitement wanting to share all that she did at school. And then when Dad comes home from work, she relates to him everything she shared with me. Both Rob and I love to hear about Faith's time at school, but we noticed something. She talks a lot about the adults - her teacher, her teacher's aide, her therapists, her special ed teacher - not much about her classmates though. Recently at Faith's IEP (Individual Education Plan) meeting at school Rob voiced this concern. We know that Faith is more comfortable with adults. She has seen therapists since she was six months old. It took her a long time to warm up to her preschool classmates. Even after she warmed up to them, their sudden noises and movements would cause her to startle. Adults are more predictable to her than other kids and predictable for her is comfortable. At kindergarten Faith is around 18 other kids which causes her to proceed with caution. Her teacher as...

Yesterday Faith had her follow up appointment with her eye doctor after a two-month trial without glasses or eye patching. He seemed quite amazed that Faith's farsightedness had improved and that the muscles in her eyes were working so that her eyes were "lining up." Faith started wearing glasses when she was two years old for extreme farsightedness and esotropia - which means her eyes tended to wander inward. At that time the eye doctor told us that if glasses and eye patching did not correct this then she would need surgery. It took a while for Faith to get used to wearing her glasses but even when she did get used to them, she didn't particularly like wearing them. She didn't mind the eye patch so much since it was for just 30 minutes a day, which is when we read her books. Faith looked so cute in her glasses, but I'm glad she no longer needs them! Fast forward to July 2009. Faith lost her glasses. My husband and I think it must have happened while we wer...

Well, she caught it. It was probably inevitable but still I hoped. Faith caught my cold. Kids get colds every day though, so why am I making such a big deal out of it? When Faith is sick, she doesn't sleep, which means mom doesn't sleep. Another thing about Faith - she doesn't nap either. She has never been a napper. Oh, how I envy my sister with her four-month-old who sleeps through family reunions and Cornhusker football games. (Live football games, that is.) So last night, there we were. After sleeping for about an hour, Faith woke up crying. Was it her tummy? Her throat? Her ears? No answer, just more wailing and lots of tears. Finally, she calmed down and we slept for another hour before she was up crying again. This time she fell back asleep relatively quickly.  A couple of hours later though, she was up again. I asked her if I needed to vent her tummy. Sometimes, when she cries a lot or when she's swallowing extra saliva it gets into her tummy. I vented and it h...

After agonizing and praying over the decision to send Faith to school for half days or full days, we finally agreed that half days would be more than enough. I am finding that even only with half days at school, her schedule is full. She is quite the busy little bee. While she's at school from 8:30 to 12:30 five days a week, Faith has two occupational therapies, two physical therapies, two speech therapies, four sessions with her special education teacher, library time, music, recess and physical education. Not to mention a full one-hour feeding and time in her stander. I can understand why the school's recommendation was to have Faith in school for five full days a week. With all that she has to do at school, she is also there to learn academically. But it was ultimately her parents' decision and I believe we made the best one. Faith getting some stander time in after school.  When Faith comes home from her busy day at school, she has her second feeding of the day and th...

There's a song we used to sing in elementary school called "Up, Up with People." Amazingly, I still remember all the lyrics. Up, up with people, you meet them wherever you go. Up, up with people, they're the best kind of folks you know. If more people were for people all people everywhere, there'd be a lot less people to worry about and a lot more people who care. I know that since the beginning of our journey of having a daughter with special needs, there have been many people who have been 'for us'. They have wanted what we wanted, the best for Faith. If I were to begin naming names, I know I would forget someone because there are just so many people that God has put in our path to help Faith grow and develop to the best of her ability. This list includes doctors, therapists, interventionists, teachers, teacher's aides, case managers, caretakers, counselors and even receptionists.  Faith working hard with her physical therapist.  Besides, profess...

Every time I take Faith to school and then bring her back home, I am reminded of how God arranged for all of our needs to be met. Last spring, we were getting concerned about where we lived and how it was going to work for getting Faith to Kindergarten in the fall. The apartment we lived in, which was not handicapped accessible, was close to downtown and was close to Faith's preschool. During most of the time at this address, my husband stayed home to take care of our daughter. I worked in Mandan and had to take our only vehicle to work every day. This wasn't a major problem for my husband because he simply walked Faith to her therapy sessions, walked her to preschool and was able to carry her and her chair up and down the stairs of our apartment. Things changed last November when Rob got a job, and I was able to stay home with Faith. It was more difficult for me to carry Faith up and down the stairs and because of the winter we had, it was much harder getting her to school...

"First day of school, first day of school!" This line from the movie, Finding Nemo, resounds through my head. Little Nemo was so excited to go to school and begin a whole new adventure. His overprotective father, Marlin, not so much. His father tried to tell him he could always wait another year before going to school but Nemo heard none of it. I felt like Marlin this morning, thinking we didn't have to do this yet did we? Couldn't we wait another year? Was she really ready? I got my answer shortly after stepping through the front doors of her new school. "Faith, are you ready to go to your classroom?" "YESSSSSS!" She had a big smile on her face all the way to the elevator, down the hall, around the corner to her classroom door. I held on to her wheelchair not wanting to let go just yet. I wanted to take her into her classroom, get her settled in and just make sure she was going to be OK. But when Faith's teacher's aide asked Faith i...

Faith is super excited to start Kindergarten!  Faith received her immunizations yesterday for kindergarten. On Thursday, she starts school. I, like moms everywhere who have kids reaching certain milestones, am asking, "where or where has the time gone?" One of my Facebook friends wrote on her wall that it seems like she just gave birth to her kindergartner. Her message brought me back to Faith's seemingly untimely birth. Instead of being a joyous and happy occasion, Faith's entrance into the world was one of the most stressful and scary times of my life. When I was just 26 weeks pregnant, Faith was doing her best to come into the world - way too early. Since we lived in Watford City, a community of about 1500 people, we doctored in Williston, about 45 miles away. My husband and I drove there thinking my little bit of spotting was no big deal. I remember feeling relatively calm, until we got to the doctor's office, and they strapped a fetal monitor around me. I w...