Faith's Mom's Blog

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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, they know when we aren't feeling well and most of all they know and understand our children. They laugh at the children's stories and they cry too when one of the

We had a small miracle occur in our household last night. Faith slept in her own bed until 6:30 in the morning. She woke up and I got her back to bed and she slept another couple of hours before I had to wake her for school. This morning I felt so well-rested that I didn't feel the need to sleep while Faith attended school. Last week, that's exactly what I did. After seeing another doctor, actually a cardiologist, I found out my O2 saturation was down to 87% and I had pneumonitis . I was having major shortness of breath so I was concerned there was something going on with my heart. He told me to finish my antibiotics and get lots of rest. He also said it wouldn't be a good idea to walk Faith to school and back home. Thankfully, we were able to get someone from respite care to bring her to school and back. And while she was in school, I slept. On Friday Faith stayed home from school because she was coming down with a cold but we had respite care from 1-5 p.m. - I slept mos

Thankfully, during these past six years it has been very rare that I've been too sick to look after Faith. But these past couple of weeks, though I have still been able to look after her - with the help of dad and respite care - it has been a challenge. It all started with a cough then my sinuses began to ache. After being diagnosed with a sinus infection I was put on antibiotics. I asked the doctor for something for my cough and he was going to prescribe some cough syrup that would knock me out as well as soothe my cough. I told him I didn't want that because I needed to be up at night with my daughter. So he prescribed these little pearl-like pills. Needless to say, they did not do the trick and I am still coughing. The hardest thing through this whole ordeal has been the lack of appetite and not having a lot of energy. It really did take all I could muster to walk Faith to school and back, after which I would go into a coughing frenzy, sometimes to the point of dry-heavi

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 h

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 wonde

My mood this October morn is as gray as the weather. I feel grumpy, out of sorts and just plain cranky. Part of the reason, I know is that I am exhausted. On Saturday night Faith started coming down with another cold. That night she didn't sleep well at all which means neither did I. Thankfully I was able to get some sleep during the day on Sunday. That night though, was another one of me trying to sleep while sitting up. Faith didn't go to school yesterday and thankfully one of our respite care providers was able to come and watch Faith while I slept for a few hours. Last night was the same story and once again Faith did not go to school today. The hard part about deciding whether or not to send her to school is that she is finally sound asleep when it's time to wake her. But when she is at home during the morning, she's not all that sick, she's just stuffed up but in a pretty good mood nonetheless. This morning I was all ready to send her to school when Rob sugg

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 an endless amount of times at home, there wouldn't be any surprises to cause her to startle since she would know what was coming next. We got to the movie theather 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 and immediately Faith told us she wanted to go home. Rob and I were not about to

The weatherpeople 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's 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

I remember very well the day in April, 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 ? 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. As time went

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. Which 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 foo

A dream come true for me as Faith and I enjoying riding a palomino mare named Blondie Saturday was an absolutely amazing day. Our friend 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 passers by. It was quite a sight - not one that you see everyday! 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 was a little pony and and a beautifu

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 Rob and I 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

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. My husband and I agree that she has brains like us - it's hard to deactivate them. 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.&qu

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 aid, 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 assur

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 just for half and hour a day and that's when we would read her books. Fast forward to July 2009. Faith lost her glasses. My husband and I think it must have happened while we were outside and she just threw them off without us knowing. The tim

Well, she caught it. It was probably inevitable but still I hoped. Faith caught my cold. Kids get colds everyday 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 hel

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. When Faith comes home from her busy day at school she has her second feeding of the day and then after that she can finally get stretched and r

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. Besides, professionals, however, there are also those who have prayed

Everytime 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 everyday. 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 an

"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 aid asked Faith if

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 was having contractions eight minutes apart. I wa