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.