Friday, December 18, 2009

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The Waiting Room - Our Little Community

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 young patients is in the backroom getting Botox injections.

We can tell when there is a visitor amongst us. First-time families whose children need physical, occupational or speech therapy. They tend to look a little longer at a child in a wheelchair, puzzle over what is going on during an enteral feeding, wonder why some children make silly sounding noises in order to communicate. The rest of us look and smile, trying to make them feel welcome. We understand their worries, their fears, their anxiousness.

For some of those in our little community, mere socialization turns into friendship. We call one another, send each other Christmas cards, give new babies in the family gifts and set up play dates for the kids. We are our own little community and it helps us get through the life of having a special needs child a little easier and a little less overwhelming.

Tuesday, December 8, 2009

Lots of Rest - the Best Medicine

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 most of that time. We also had respite care for an overnight and even though I had a four hour nap, I was still able to sleep most of the night.

After all of my rest, I was finally feeling better over the weekend and I even felt like I had more energy. Unfortunately though, at my doctor's appointment on Monday, my O2 sat. was still below 90% and she could still hear "crud" in my lungs. She put me on another round of antibiotics and also tested my thyroid, iron and checked for mono.

I was a little discouraged after the appointment. I miss taking my daughter to school and chatting with her teacher's aid and the other moms of half-time kindergarten students. I am also just tired of not feeling well. Today, however, I didn't want Faith to miss another therapy appointment so I did get her there and it went well, despite the cold weather.

So while the apartment continues to not get cleaned, paper piles up waiting to get filed and respite care takes over bringing Faith to school, I will continue to rest. I will also continue to pray that Faith will have more nights of good sleep. It really is the best medicine.

Monday, November 30, 2009

No Fun Being Sick Mom

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-heaving. Thankfully, I had a four-day reprieve of taking her to school over the Thanksgiving holiday. Speaking of which all we ended up doing was going out to eat at Perkins. I was too sick for us to go anywhere and wanted to go eat at a place I could bring my leftovers home. Faith had lots of fun eating her mammoth muffin.

As a family, we all took it easy over the holiday and played lots of PlayStation, which Faith and her dad especially enjoy. I was able to muster up some energy to meet some of my family at Ruby Tuesday and to put up some Christmas decorations. Faith was so excited to go to school today and I'm afraid part of that is due to her being bored at home. Hopefully this virus is near the end and I can regain my energy for hers and my sake.

Monday, November 2, 2009

God Works Out the Details

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 25th - 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 her she would not be attending the party, I received a voice mail message. It was a very scratchy-voiced mother saying they had been sick so they were moving the party to October 31. She also relayed that she would be serving the kids lunch and making special treat baskets so she wanted to know if there was anything special she could make for Faith.

Hmmmm. It sounded to me like this mother was trying to be sensitive to Faith's special needs. I was happy she had called and now Rob and I were determined to get Faith to the party. But there were still questions I had, so I called. No, their home wasn't handicapped accessible but there were only four or five steps and everything was going to be held on the main floor. I was more than welcome to stay with Faith if that would be best.

Although I had been relieved of some of my anxiety, there were still other thoughts rolling through my mind. How nice was their house? What if the wheels on Faith's chair makes a mess? What if the other kids ignored Faith? Was I going to have anything in common with the other moms and helpers there? And since Rob was going to be dropping us off at the party (to help get the chair upstairs) I was going to need to all Rob for a ride back home. How dumb would that look that I didn't even have my own cell phone?

The night before I prayed as I always do when I am feeling anxious. I prayed that the Lord would work out all of the details in advance. I prayed that He would help me have confidence in this new situation. I prayed that most of all, Faith would enjoy herself.

As Rob helped Faith and I up the steps and into the house, a calming peace came over me. The other kids were happy to see her. As she sat in her chair and took in all that was going on around her, I noticed the kids were all on the living room floor playing with toys. I took her out of her chair and sat with her on the floor so she could be a part of the group. There were some party assistants who were curious about Faith and asked questions. At lunch time I gave Faith little pieces of chips and hot dog while I finished off the rest for her. After lunch and more playtime, it was time to go out to the garage and go through the scary haunted house. Since there were steps leading to the garage, I simply carried Faith down and we watched. I thought she would be scared due to all the kids screaming and running around but she was fine. Soon we were running through the house with all the other kids and she joined in on the screaming and laughing.

When it was time to go, Faith's classmate's mom had little baskets for the kids which included lots of candy and other treats. Faith however, received a special-made basket just for her - one with pudding cups and Cheetos - a few of her favorites.

It was a wonderful time and I was so thankful the Lord gave me the confidence and peace that I had prayed for. Not only did He answer my prayers, one of the other moms gave me her phone number and invited me to a Mom's Bible Study at her church. Too bad I didn't pray for Faith having to leave the party. She cried all the way home because she wanted to stay!

Monday, October 26, 2009

Birthday Full of Love

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 wonderful to have people take time out of their day to say Happy Birthday to Faith. And at the end of the day when the cupcakes were eaten, the balloons deflated and gifts put away, the thing that Faith remembered most about her day was that so many people love her so much.

Tuesday, October 20, 2009

Gray Day

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 suggested I just let her sleep. That, plus the constant drizzle kept her home again.

It's not that I'm grumpy with Faith, I am grumpy about these germs that are going around causing kids, teachers, pretty much anyone to be sick. Sick and sleepless with everyday routines being disrupted over and over again. Enough already! We still have the whole winter to get through. But maybe instead of complaining, I should instead be thankful that my daughter does not have the flu or anything worse. And instead of being grumpy I should rest on these words from Psalm 103:1-5:

Praise the Lord, O my soul; all my inmost being, praise his holy name. Praise the Lord, O my soul and forget not all his benefits - who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's.

Monday, October 12, 2009

A Night at the Movies

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 give up that easily. As we walked her around the theater we tried to tell her we were here to see Woody and Buzz Lightyear on the big, big, big screen. She seemed excited about that but not so excited about the loudness or the darkness.

Eventually, Rob went in and sat down so he could save our seats. I heard the previews to the movie kick in so I wheeled Faith inside right next to Rob. She said, or rather yelled, "I want to go home."

We were still not ready to give up. I took Faith back out and waited and waited and waited for the previews to finally be over. As soon as I heard Woody's voice, I asked Faith who that was. She knew immediately. I asked her if she wanted to go in and see Woody on the big, big, big screen and she excitedly yelled, "YES!"

I had been somewhat prepared for her to want to go home. I had also been prepared to have to do a feeding at the movie. The one thing I was not prepared for, however, was how loud Faith would become when she got excited during certain parts of the movie. She screamed along with Woody when he tried to tell Buzz Lightyear, "YOU ARE A TOY!" She was also yelling, "WHOOHOOO!" when Woody and Buzz were trying to make it onto the moving van. Both Rob and I tried to calm her down but really to no avail. No one around us seemed to mind, thank goodness. There was also another moment that surprised us when Al from Al's Toy Barn came on and Faith asked, "Who's that stupid man?" Rob and I just looked at each other like, where did that come from?

All in all it was a great experience for us to have a family outing at the movie theater. We hope that because of the success of this adventure, there will be more to come.

Friday, October 9, 2009

Why Couldn't Winter Wait?

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 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 is then almost twice her normal size, the laterals keep popping out and when this happens she falls sideways. I'm not sure what's going to happen when she has to start wearing her snowpants. Is she even going to fit in her chair, I wonder.

The first chair she had was called a Kid Kart and we had a special cover for it to protect her from the wind when she is outside. This chair comes with no such thing. So far, I resort to putting a blanket over and around her legs and have her face covered with a sweathsirt of mine, which she doesn't like because she can't see anything. The Kid Kart cover had a special little window so she could still see. I guess we'll need to figure something out.

I think some people think I am a little crazy for walking my child to school in this cold weather but really, by the time I get her to the car, into the car, her chair taken apart, drive down the street, put her chair back together, get her into her chair, strap her into her chair and take her inside, I might as well have just walked her to school in less time.

I do wonder, however, how it will be trying to get her chair through the snow when it actually accumulates on the ground. I tried it last year and her chair just didn't budge in the snow. Hopefully this winter we will not have another 100 inches.

Ah, yes, the dilemmas that winter brings with it. Why couldn't winter hold off for another month or maybe even two?

Tuesday, October 6, 2009

God's Little Reminders

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 on and we learned more about Faith's disability, I became disheartened. I wanted to believe the Lord could heal her but I think I wanted Him to heal her more for my sake than for hers. I didn't want to go through life with a special needs child. I also thought it was so unfair for God to give me a special needs child when I myself had a congenital defect.

Through time, patience, prayer, emotional healing, perseverance and the Grace of God, I was able to accept my daughter's disability. My belief for her healing has waned at times but remains strong at others.

Sometimes when I'm going through a period of doubt I start thinking about what it's going to be like years down the road. Faith is growing and while that is a good thing, I worry about there coming a day when I'm not able to lift her. How am I going to get her in and out of bed or in and out of the bathtub especially when I have a 50-pound lifting restriction? What's it going to be like when she reaches puberty? Am I going to have to shave her legs and armpits for her?

I believe we have seen God's healing work in her already and I know God can heal her completely. But I also know it is in His timing, not mine. So when these thoughts start crossing my mind, the Lord reminds me of Jesus' words in Matthew.

Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34

Not only do I have to remind myself of this, but also the fact that God has given me everything I have needed to get through the past six years and I know He will give me everything I need to make it through the next six and all of the years following.

Wednesday, September 30, 2009

Faith's Amazing Patience

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 foot as possible. Then, using some white, cold stuff she would fill in the plastic piece to fit her foot. Each time her PT had to add to the cast, she had to put Faith's foot in the cold white stuff to see what kind of progress she was making. She did this about a dozen times for each of Faith's feet before she finally got them perfected. Faith does not like cold things on her skin so I knew this was a challenge for Faith everytime she had to put her foot into that cold stuff.

The casting took about an hour. After this was done, someone else came in and used a special material to "tape" up Faith's feet all the way to her mid-calf. He squeezed it and held it for about five minutes and after it stiffened, he cut it away and it became a mold of what her SMO will look like. The SMO is then made with hard plastic and padding is put in over the casting part.

During the process, Faith was able to pick out what color of velcro straps she wanted and what picture to place on the backs of her orthotics. She chose purple straps with flowers on the back. I remember the second pair of SMO's she had, her dad was in charge and he chose to have a hockey player on the back. Her third pair had a horse and the straps were hot pink. This new pair will be her fourth.

Faith's patience reminds me of what a good girl she is. No matter what difficulties and struggles she is having, she never fails to have a smile on her face. I am so very proud of her.

Monday, September 28, 2009

A Day in the Country

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 beautiful palomino horse. Would they take me seriously if I got in line with the kids to go on a ride? How I longed to climb up in that saddle.

I lived on my grandpa's farm as a young child and later my family lived out in the country where my grandpa would let us keep a horse of his once in a while. I loved the feeling of being on horseback. As I grew older, the opportunities to ride horse grew less and less and are now almost nonexistent.

After taking a bumpy but fun ride on the wagon and getting some pictures with the team, we made our way over to the corral with the two horses. I was all set to get Faith on the little pony and have me and Michelle hold her upright while the volunteer walked us around in circles. But to my surprise someone asked if I could like to get on the horse with Faith. I climbed up on the horse and Michelle handed Faith up to me. I sat her in front of me in the saddle. I don't know who was more excited - her or me!

While the whole experience filled me with nostalgia, it was a whole new adventure for Faith. Hopefully, somewhere along the way in our journey there will be more opportunities to spend a day in the country, including horseback riding as well.

Thursday, September 24, 2009

The Rewards of Respite Care

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 certain number of hours a month that we would have respite care available to us. We did this through our disability case manager. When we first began, we had one respite care provider with just 20 hours a month. Now, we are up to two respite care providers for 45 hours a month. The increase in hours allows for Rob and I to spend more time together as a couple as well as have some precious alone time.

A couple of years ago after having just Michelle, we also found Kimberly, a college student majoring in early childhood development/special education. Since Kimberly knew she was going to be moving, she introduced us to Lindsey. I know of families who have a hard time finding the right respite care person for their child. Also there is often a high turnover rate with respite care providers. These are other reasons I am so thankful. It seems as though the Lord has found us the perfect respite care providers who have come to love Faith just as she loves them. And what a huge blessing that is!

Monday, September 21, 2009

Night Time Antics

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." "What's the matter?" "My hand is stuck." I'm sure it's not but I get up to check anyway in case it really is. It's not.

10:07 p.m. - "Mommy my sock fell off." I get up to check, both her socks are on her feet.

10:10 p.m. - Faith is thrashing, moving and scooting. (She is able to scoot while she is on her back.)

10:12 p.m. - "Mommy could you help me please, please, please. I'm really stuck." I get up to check. She has managed to scoot up to the head of her bed and is unable to go any further. I lay her back down in the middle of her bed and tell her she has to go to sleep.

10:15 p.m - More thrashing, making noise, singing, scooting.

10:17 p.m. - Rob comes in to tell her to be quiet and that she needs to go to sleep.

10:20 p.m. - "Mommy could you come over here again." This time I try to ignore her and pretend I'm sleeping. "Again, AGain, AGAin, AGAIn, AGAIN!" Each time she repeats the word it gets louder. I pick her up and sing the "I love you song" to her and tell her to try her hardest to go to sleep.

10:25 p.m. - All is quiet. Is she asleep? Her laughter answers my question.

10:30 p.m. - "Mommy what does the word 'fabulous' mean?"

10:35 p.m. - "Mommy could you come help me?" "What do you need help with?" "I need to sit up." "Try to go to sleep."

10:36 - whimpers. I pray she is getting close to falling asleep.

10:40 - laughter. I try not to laugh myself. Even at this hour, her laughter is contagious.

10:45 - quiet. Finally, she is asleep and I am able to fall asleep too.

Friday, September 18, 2009

Questions from Kindergarteners

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 assured us that it would take time for Faith to get used to them and for Faith's classmates to figure out how to relate to her. She said there are already signs that a few of the kids want to be her friend because they are her special helpers.

Yesterday I accompanied Faith on a class field trip to the pumpkin patch. Two of the little girls thought it would be quite something if they were able to push Faith around in her chair. While they were pushing her they began asking questions. "Are you Faith's mom?" "How did you have her?" "Was she in your tummy?"

Later during the day, it was time to give Faith a feeding using her feeding pump. The kids around us were a bit wide-eyed wondering what we were doing. They fired more questions. "What are you doing?" "What's this tube for?" "How does that get in her tummy?" "What does that stuff taste like?" "Does that hurt her?"

Along with trying to answer their questions in a way that they would understand I also showed them Faith's Mickey Button that her feeding tube was attached to. I think it was hard for them to comprehend but it was obvious they wanted to understand. One little girl asked how that button got there and I said a doctor had to do a little surgery. She replied, "I didn't know kids had to have surgery."

The questions went on and on. "What are those things on her feet?" (Orthotics). "How do you dress her if she can't stand up?" "How does she sleep?" "How does she go potty?"

I was encouraged by their curiosity. I believe they really did want to get to know Faith better and in order for that to happen they wanted to understand. I'm hoping that as her classmates ask more questions and get to know her more, Faith will be more comfortable around them and vice versa. I think we're off to a good start.

Wednesday, September 16, 2009

No More Glasses or Patches

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 timing wasn't bad since she had to go to the eye doctor anyway and I just assumed she would be getting new ones. Boy was I amazed when he told us she may not need them at all! He then told us we would do a two-month trial with no glasses and no patching to see how she did. None of her therapists nor I myself noticed a difference with or without her glasses.

I really do believe Faith received a healing from the Lord. I can't get over how shocked her eye doctor is about all of this - as if he was not expecting these results, or at least not expecting them so quickly, especially with her esotropia. Something else I find amazing is that we were in Canada for Christmas in December and some family Faith and I had never met came over for a visit. They noticed Faith's eyes turning inward and asked us about it. Just seven months later, her eyes no longer did that.

We do serve an amazing God, one who restores and one who heals. Jesus truly is our Great Physician.

Sunday, September 13, 2009

Nights Like These

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 helped. Then I heard lots of toots. Hoping we had solved the problem, we fell back asleep only to be up a few hours later. I took her into the living room and sat with her and she decided it was time to be awake. It was 4:00 a.m.

I put her on the floor and let her watch a video on her portable playstation. I layed down next to her and tried to sleep. Around 5:30 we finally went back to bed. I figured we would sleep until about 10 which meant we would miss church. I was surprised when she was ready to get up for the day at 8:00, runny nose and all. And even though she didn't feel well and we were all exhausted, Faith still wanted to go to church.

Nights like these are really tough on someone who needs at least six hours of good sleep to function. Nights like these are usually agonizing and I find myself begging God for sleep. But last night, there was something different going on inside of me. Instead of the usual agony and frustration, I Yes, I felt joy. It's not that I was happy to be awake instead of sleeping, but the joy I felt was the joy of the Lord. I had heard about people feeling the joy of the Lord through tough circumstances but I know I've never experienced it myself. Until last night.

This past weekend I went through some classes that taught what the Bible says about healing. Going through the classes helped me have a different perspective for what Faith and I were going through last night. Jesus already bore our sickness when He died on the cross. He bore ALL of our sickness, including this cold that was causing my daughter to suffer.

When I was praying for her last night, I was able to pray with a thankful heart for what Jesus had done. Focusing on Jesus instead of my lack of sleep allowed me to be filled with hope and that God's grace would be sufficient for us to make it through the next sleep-deprived day and every sleep-deprived day after that. I am learning more and more that the joy of the Lord truly is my strength.

Thursday, September 10, 2009

Half Days Are Still Full Days

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 relax. She is so tired after school and of course I can hardly blame her. I know full days would have been too much for her, especially in light of her upcoming schedule.

Next week, she gets to go back to MedCenter for one physical, occupational and speech therapy session a week, plus she gets to have her favorite, hydrotherapy. Along with all of her therapy sessions she also has a doctor's appointment to get her Mickey button replaced and an eye appointment. This all makes for a busy mom as well!

School days are indeed busy ones but I know as a parent I can't get too caught up in the busyness. I have to take time for myself and I know Faith needs time for herself too. With all of the day-to-day decisions that need to be made, I must always remember to put Faiths needs above what others think is best for her. We know that when it comes to school, half days are best. We are in the minority, by far. I only notice a few other parents picking up their kindergarteners at 12:30. But that's OK, because for us half days are still full days.

Monday, September 7, 2009

People in Our Path

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 for her incessantly and thanks to those prayers we have witnessed tiny miracles. Then there are those everyday people who come up to her in the grocery and department stores or wherever we are out and about and tell her what a beautiful smile she has. These people really make her day. There is also a local restaurant we often go to where the whole staff gets excited to see her.

I often hear terrible stories of people who have had difficulty navigating through the medical system or who have insurance nightmares. I know of frustrated parents who can't seem to get the help that they need. They go through many trials before finding the right network of people to help them with their special needs child. I have thanked God many times that this has not been the case for us. Since the beginning, when Faith was born at Mayo Clinic she has always had the best of care. The Lord has truly put the right people in our path.

Thursday, September 3, 2009

The Short Walk Home

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 and to therapy. Thankfully, Rob's job was nearby so he could walk to work and I could have the car. In January, however, Faith got a new chair which I was barely able to get into our car and which I could not get up and down the stairs. I was beginning to wonder if it was a mistake that I was the one home with Faith. I began getting discouraged and wondered how a person with a heart defect was supposed to be able to care for her special needs daughter.

"Let not your heart be troubled," says the Bible. As I prayed about our situation, God was putting everything in place to make our lives more manageable. My husband and I realized we could no longer live in a place with stairs so we began hunting for an accessible apartment. I was surprised at how many options we had. Another thing we had to keep in mind, though, was that Faith was going to be in Kindergarten and we only had one vehicle, which meant we were going to have to get Rob to work and Faith to school all in one car. How was this going to work, we wondered?

God had a plan. One of our last choices on our list of places to live was a place called Ithica Heights. One day, I drove to Ithica Drive to check out the complex and when I was leaving I drove down the street and there I saw an elementary school - practically right next door to the apartment complex! I called Rob and excitedly told him about my discovery. I set up an appointment to look at a two-bedroom apartment. The manager also showed me a three-bedroom apartment, which I didn't think we could afford but I wanted to look because I thought it would be great to have an extra room for an office.

A few days later, I called about the two-bedroom and someone had put a deposit down on it which meant it was not available anymore. But the three-bedroom was. When Rob and I went to look at it again we explained to the manager that we wanted to live here because it was right next door to a school for our daughter and that we knew the school was handicapped accessible. We also explained to her we wanted the three-bedroom but we weren't sure we could afford it. She talked to her boss and they agreed to knock the rent down a little bit to make it more affordable and so that Faith could go to school right next door.

We moved to our new home in April. And now, everyday I get to walk Faith just down the street a little ways to her new school and then I take the short walk home. God truly has provided for all of our needs and I know He will continue to do so!

Thursday, August 27, 2009

First Day of 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?"


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 she wanted to say goodbye to mom I found out she was more ready than I was. She barely looked at me and said, "See you later!"

I reluctantly let her go telling her I loved her and that I would be back in four hours. I don't think she heard any of it. Who was this little girl so ready to be separated from her mommy? So ready to be off on a new adventure? So excited to be a little more independent?

I shouldn't have been so surprised that she did so well this morning. I had prayed about this day since her last day of preschool - prayed that the transition to kindergarten would be a smooth and simple one. And now this morning, I am realizing the answer to those prayers. Although I am a little sad, I am thankful and grateful. Thankful to God and for the wonderful team of people at Faith's school who will be working with her. I know she couldn't be at a better place.

It has been hard being at home this morning by myself. It is so quiet. I miss her singing her little songs and her constantly asking me for a hug. But soon, I will return for her and I will hear all about her first day of school. I am looking so forward to that and will continue to look forward to it for the next nine months.

Tuesday, August 25, 2009

The Kindergarten Milestone

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 was beginning to feel a bit nervous. They couldn't give me the magnesium they usually give to stop preterm labor because of my heart condition. All they could do was try to hydrate me through an i.v. Because of my heart condition, the pregnancy was high risk which is why my doctor made the decision to airlift me to Mayo Clinic, where I had my fourth heart surgery just four years prior.
Faith stayed in her little home in my womb for another three weeks. After my placenta abruption, the obstetrics team along with my cardiology team managed an emergency c-section and at 4:36 p.m. on October 25, tiny little Faith came into the world. She weighed 2 lbs. 6 oz. and was about 14 inches long. I was only able to see her for a couple of minutes. I was allowed to reach into her isolette and touch her tiny hand before they whisked her away to the NICU. It wouldn't be for another week that I would be able to hold her.

Two weeks later, she was transferred to Bismarck, which made things much easier for me and my husband. We lived at the Ronald McDonald house for the next two months. She was discharged from the NICU on her original due date - January 5th.

That was almost six years ago. Since then, we've made many changes in our lives, including moving from Watford City to Bismarck so our daughter could get the best care possible. When she was six months old, we found out she had spasticity, likened to cerebral palsy. Since then, we have had to adjust to many new things from therapy to orthotics and wheelchairs to feeding tubes.
It used to bother me when she delayed in reaching certain milestones or didn't reach them at all. But now I know that even through the most difficult times, God had a plan and even when it didn't look like He was answering our prayers, He remained faithful. And now, after everything we've gone through, our daughter will be reaching one milestone right on time, starting kindergarten.