Wednesday, April 27, 2011

Our Easter Weekend

I know this is a bit belated, but I thought I would at least post a few thoughts along with some pictures of our Easter Weekend.

Our weekend began on Good Friday when I took Faith to the library where Easter Seals had some fun activities planned for the morning. Faith called it an Easter Party. She saw some of her friends and had fun dying eggs. She also played BINGO for the first time ever! She kept saying "BINGO" even when she didn't have a BINGO, I think she just liked everyone's reaction when she said it!

Faith with the Easter eggs she dyed
Faith liked putting the grass in her bucket
It was a very good thing we got out when we did because as Faith and I headed back home it began to rain which later turned into snow. We had been planning on going to church that evening but decided not to go out in the cruddy weather. Saturday was bright and sunny so we celebrated by going to the China Star!

On Easter Sunday, we actually made it to church by 9:30 a.m. I think it is the first time we have ever made it to church that early! The sermon was very good and although it lasted about 1 1/2 hours, Faith did great through the whole thing.

After a pit stop at home it was off to a delicious dinner at our friends, Bob and Lola's home. It was wonderful and Faith especially liked the fudge swirl vanilla ice cream that she had for dessert. I couldn't resist the cheesecake with raspberry sauce and Rob tried something new - wild rice pie.

After yet another pit stop at home, it was off to do some serious kite-flying. Faith had picked out a Buzz Lightyear kite and couldn't wait to get Buzz flying! The wind was a little strange as it would blow then suddenly stop then blow again then change directions. It made it a little challenging to keep our kites in the air. Buzz did great at first but after a few crashes he just didn't want to stay up in the air. It was great fun nonetheless. We'll have to get Faith a new kite and go kite-flying again.

At one time, Faith let go of the green handle and since Rob was wearing roller blades I was the one who had to go running after the kite!

Kites flying high!
Faith and Bob

All in all, it was a very nice and blessed Easter weekend as we celebrated the Resurrection of our Lord and Savior!

Tuesday, April 19, 2011

Tuesday Tidbits - Faith's Teeth, My Heart

It's been a while since I've done "Tuesday Tidbits" so today with our wonderful winter weather, I thought it would be the perfect time to put together a brief update. (I'm not including a photo of our weather because it is just too dang depressing.)

I mentioned in a previous post that Faith had gone to the dentist. Well in his words "she has a lot going on in there."  Her two top teeth are trying to come in along with her upper molars. She also has four other teeth that are slightly loose. No wonder she's been a bit cranky lately.

According to Dr. Bryce, she will experience fevers along with a stuffed up nose and extra mucous and drooling. He said to give her ibuprofen to help keep the swelling down and ease the discomfort.

I find this especially interesting because when I ask the same questions about the effects of Faith's teeth to her pediatrician, he always says her teeth have nothing to do with these symptoms. I have yet to hear of a pediatrician who says teeth coming in can cause a fever. Why is that?

I had an appointment recently, too - my annual echo cardiogram. I was glad to hear that things look great. I think I received some sort of compliment from my cardiologist when he said, "Look at that nice interior vena cava."

I'll be going back in July to do another test on the treadmill to see exactly what my heart can tolerate when it comes to exercise, etc. I don't think I'm alone when it comes to someone with a congenital heart defect in that we're sort of afraid to exercise because we wonder if we are straining our hearts or helping them. The cardiologist always says, "just quit when you think it's too much." That for me is hard to determine since I've always been one to overextend myself.

I do praise God though for the good cardiology report! And speaking of praising God, tomorrow I will be giving my testimony to our local MOPS (Mothers of PreSchoolers). I'll be talking about the experience I had after my fourth open heart surgery when I was 26 years old and how God used that event in my life to give me a "Change of Heart" both physically and spiritually.

We are finally looking for an accessible van! So, if anyone knows of a used accessible van that is in good condition - please let us know! We have located one in Williston but it's just a matter of getting up there to look at it and the weather is not helping! Again, if you know of one please inform us!

Some more exciting news - the local magazine, Inspired Woman, recently held an essay contest where we were to write about Who Inspires You? I didn't win but they are still going to publish my article, which I wrote about Jacey Enget. Be sure to watch for the May/June edition!

I know I have been talking about our terrible weather but I must remember that at least we're not experiencing deadly tornadoes as the south is. Please keep all of those who have been affected by these deadly, destructive storms in your thoughts and prayers.

Monday, April 18, 2011

A Banner Review

In early March, I received an e-mail from a representative from the company BuildASign.com. They were willing to send me a free banner, created by myself, and in return I would place their link on my blog and I would write up a review of the banner. So, here is that review.

I thought it would be great to have a banner for our team at the Great American Bike Race. I went to BuildASign.com and very easily used their tools to design my banner. From the time I placed my order to when I received the banner was only five days and I was thrilled with the final product!

The only problem became how we were going to hang it. Thankfully, our team's bike was near a wall so me and a few other girls hung up using some pink duct tape I had grabbed before leaving home.

I did get some nice comments about it - that is was a really nice banner, one that could be used again and again. It is very professional-looking and durable. I am very happy to have it and we will definitely being using it at next year's Great American Bike Race!



Monday, April 11, 2011

Twelve Fantastic GABR Memories

As the Great American Bike Race is now in the past, I look back on it with many fond memories. Faith being a GABR star was a blast! We had so much fun during the many new experiences this opportunity afforded us - from doing a radio commercial to being on TV - and the people we worked with were all awesome as well. I just hope Faith isn't too disappointed that she won't get to be the GABR star again next year!

Besides Faith being one of the stars, there are 12 more fantastic things I will always remember about this year's GABR:
  • Faith having the energy to endure being amidst the noise and excitement of the Bike Race all day!

  • Our awesome team - Faith's Fantastic 12 who all showed up to ride and who did a great job of raising money!

  • Our cool t-shirts that turned out great!
  • Having so much fun seeing all of the friends we have made these last 6 1/2 years!
  • Having the team, Badlands Bikers, join in on the event all the way from Watford City!
  • Finding out that Jacey Enget rode not once, twice but three times for her team! She's our hero!
  • Seeing Faith and Tanner having so much fun together!

  • Having a 1/2 team with team captain Lynette and her daughter Ashley - Ashley and Faith's Tie-Dye Team!
  • Being right next to Ashley's team, Paige's team and Tanner's team - all in a row!
  • The support Faith received from her school, her classmates, her friends and family!
  • Rob riding for the 5th year in a row - He's rode for Target, MedEquip and both of Faith's teams
  •  Riders coming back year after year to "Do It for the Kids!"

All in all it was a great GABR and I have already
started recruiting for next year!
See you in 2012!


Friday, April 8, 2011

A Special Reception

Today at school there was a very special reception held for Faith. All of the first graders came along with their teachers and even the kindergarten teachers were there to join the festivities. There were also other staff at the school who came to eat ice cream and Oreo cookies - a few of Faith's favorites. It was a celebration of sorts held to honor Faith the GABR Star.

We all got to watch the newscasts in which Faith was interviewed. The highlight of the afternoon was when they announced how much money the school had raised that day for GABR. To raise funds, Centennial Elementary had "Hat Day." If you donated money, you got to wear a hat to school.

Some kids dug out their "tooth money" while others grabbed some coins from their piggy banks. And in the end, the students, staff and parents raised a grand total of $1,300 - the most ever raised by Centennial Elementary for GABR. The money was evenly distributed to the four students at Centennial who have teams for the Great American Bike Race - Faith, Jacob, Ashley and Paige.

It was a very special reception. Faith was a little overwhelmed by all of the attention but she still smiled big for the camera! After tomorrow Faith will be done with her star status and maybe, just maybe her schedule will slow down a bit!

By the way if you live in the area, KFYR will be having a live broadcast from the Bike Race between noon and 1:00 p.m. Faith will be on around 12:10. And if you would like to see the interview with Faith at school, you can view it here.

All the first graders were invited to Faith's special reception


Faith and her teacher, Mrs. Reim
Faith visits with her kindergarten teacher, Mrs. Steckler who is riding on our team!
Faith with some of her friends
Even Troy from MedEquip who comes to the school to work on Faith's chair dropped by along with Faith's physical therapist, Judy.
Ms. Hall is not only a special education teacher, she is a very special person who does so much for Faith and does a lot to promote GABR at Centennial.

Singing Her Heart Out

I will never forget one of Faith's first programs ever. It was during her preschool days and she was tense and nervous the whole time, startling every time someone clapped. She really didn't look like she was having much fun. Then she began to gag and I knew if I didn't do something, she would throw up all over the place. I bolted towards her, grabbed her out of the chair and hurried into the bathroom with her. I didn't have her venting tube with me but her aide brought me her feeding tube so I could at least try to get air out of her tummy so that she wouldn't throw up. Thankfully, it worked.

In kindergarten though Faith didn't have any near throw-ups during a program, she still continued to be stiff and nervous and startled when everyone clapped. It was a little hard to watch and both Rob and I wondered if sticking her in front of a large audience just to be in a school program was the right thing to do. There were times we both wanted to run up and rescue her.


With a little help from her music teacher, Faith even said her two lines!

Last night was different. Maybe Faith has gained confidence or maybe she is just that much more comfortable doing things with her classmates. Whatever it was, I could not stop smiling as Rob and I watched her sing along to the songs. Some words she sang so loud that we could hear her voice and when the audience clapped, she barely flinched. It's a wonderful change and I know as she continues to grow and mature, she will continue to amaze us not only at school programs, but in everything she does.

video

Wednesday, April 6, 2011

The Waiting Room

I was taken by surprise when I pushed Faith into the dentist office the other afternoon. The waiting room was packed with nowhere to sit. As I looked around the room, I saw that those waiting to be seen had some sort of disability and were all accompanied by a caretaker.

I noticed the familiar face of an older girl with cerebral palsy whom I had seen at Medcenter once or twice. An attractive lady in business attire sat next to a man who waited in silence holding a little tiny beach ball in his hands. There was another older man with Down Syndrome. The only way he could talk was by pressing buttons on a little machine that hung around his neck.

A chair happened to open up so I took it and pulled Faith as close to me as I could. I took off her coat and readjusted the straps on her harness. She told me she wanted to go home. I explained to her first we had to see the dentist. A loud, abrupt noise from one of the people in the waiting room startled her. It seemed we would be waiting for a long time and to ease her nervousness about being at the dentist's, I told her we could go home right afterwards.

The door opened and more people continued to fill the room. An older lady entered pushing a man in a wheelchair. The man had cerebral palsy and was nonverbal. Following closely behind was an older man pushing someone who had to have been the other man in the wheelchair's brother. They looked just alike. As the woman sat down next to us with her son who looked to be in his 30's, Faith said hi to her and asked her name. "Diane, what's your name?"

"Faith."

"That's a pretty name."
Diane's son seemed to like Faith as he looked at her with his beautiful blue eyes and smiled at her. Faith simply smiled back.

Names were being called and Faith wondered when it would be her turn. As I looked at her to answer, I noticed a woman taking the man with the machine around his neck to the bathroom. Another man stood up by the desk, swinging shoe strings that were tied together back and forth. His caretaker kept a close eye on him as he seemed to like to wander.

As I observed all of these people with these different types of disabilities I wondered how their parents and/or their caretakers managed to take care of them. How did this older couple with the two men in wheelchairs find the strength to care for their sons daily? What was it like to try and care for someone who couldn't talk? So many different needs all right there in one waiting room.

Strange as it seems, I almost forget sometimes that I am one of those people. One of those parents whose child has special needs. Though she sits in a chair and can't walk, though she moves her arms in spastic motions, though she gets the bulk of her nutrition through a feeding tube, I sometimes forget that she is disabled. Is it because I see instead that she is SO ABLE to do many things despite her disability? Is it because her sweetness, her joy, her smile makes me easily forget the challenges? Or is it because I know that God has a wonderful plan for her life and that he has healed and continues to heal her?

It may be some of those reasons but the more I think about it, the more I think it's because she is a part of me and I love her deeply and unconditionally. My love for her enables me to see past her disability and past her imperfections and allows me to see her heart instead.  And isn't that how it is with us and God? We are a part of Him and He loves us deeply and without condition. He sees past our imperfections, past our physical appearances and loves us despite our sins.

I wish I could love others as God loves us. It's easy to love my daughter but God calls me to love even my enemies. I pray that one day I will be able to look past people's imperfections, past their physical appearances and love them as God loves them.

So many thoughts from just sitting in the waiting room at the dentists office.
"Faith." Finally, they call her name and we head back.


Friday, April 1, 2011

Lights, Camera, ACTION!

Yesterday was a big day for Faith - there were a little bit of lights, a few cameras and lots of ACTION!

At the beginning of the day about four people met with Faith so that she could FINALLY get the right part installed on her chair that would enable her to use the same buttons she uses to drive her chair to work with her computer. Technology is wonderful but it can require lots of patience!

Faith working on her computer with help from Ms. Hall
That afternoon, the KFYR TV crew came in to record Faith doing some of her daily activities at school. They recorded her doing some work on her computer with her buttons and also driving her power chair.

I haven't seen her drive her chair for a long time and I was very impressed by how well she's driving! She is even able to drive herself into the elevator and turn around because she doesn't like her back to the door. The cameraman got in there with her and I think he was a little nervous she was going to run him over!

The reporter asked Faith a few questions about GABR and then interviewed Faith's physical therapist at school and also her special education teacher. All three of them did a great job!

Faith being interviewed by KFYR reporter, Julie McDonald
And after all that, you would think Faith could have taken a break but she had to go to the gym to practice with all of the first-graders for their upcoming program. I was able to look in on her and see her singing along to the songs!

Seeing her doing all of these activities today reminds me of how far she has come since her first days at preschool. I am so proud of her and I know that she will continue to work hard and with the help of others she will be able to overcome her obstacles and meet all of her goals. What more could a parent ask for?

By the way, this week her TV interview on the KXMB noon show aired. To watch the video go here.