Christmas 2010

HAPPY NEW YEAR 2011!!!!

Santa brought you a what???

You'd better not pout...

You'd better not cry....

Who let the cat in? (Who. Who. Who.)

condensing: Christmas/Halloween

Our Darlings sporting new matching PJ's with a reminder of our family theme for the year:
Be True 2 U!

nativity

I couldn't help but smile the other day when I went into Shawnie's room and saw the way she'd set out her nativity. You can't help but feel excitement when you see everyone squished up close, animals included, trying to get as close as they can to see the wonderous miracle baby. Don't you just imagine that we'll do the same thing when He comes again?

She shared her testimony at church today:
I will like to bear my testimony. I know the church is true. As I look at my nativities on my desk I am grateful that Christ was born. And I am so grateful for temples and I say these things in the name of Jesus Christ, amen.

shawnie is 12

I can't believe my baby is 12! She had a fabulous birthday and is now officially a beehive in the Young Women's program. She is adjusting well, the girls are finally (after 10 years in the ward!) learning to love her and appreciate her sense of humor and her incredible inner strength. She has some pretty amazing leaders (myself included, hee hee - I was released from the R.S. Presidency and put in as a Beehive advisor to make the transition easier) and we've had some pretty "WOW" experiences already. It's going to be an exciting ride, that's for sure!
I know I'm pretty late, but HAPPY BIRTHDAY sweetness! I can't ever imagine life without you!

life is a race

Shawnie had an AH-HA moment at church last Sunday. This is her illustration of it. I just love that girl.

back to school...

Shawnie is adjusting remarkably well to her new school. She loves her teachers and has made some pretty incredible friends already. She is excited to participate and interacts with her peers really well. She is even completing her school work quickly so that she won't have so much homework!! Her school is getting to know her and her positive attitude has already affected many.


Sari. My sweet FRESHMAN Sari. She flew into this school year so gracefully, I just watched in awe. I can't believe the maturity that she possesses at this point in her life. She is going above and beyond in her classes at school, she is always looking for ways to make things more creative and out-of-the-ordinary, school assignments included. She is friendly and thoughtful to everyone, so naturally she has lots of friends, girls and guys alike. She went to her first high school football game the other night! Her memories of the night included falling on the bleachers (right in front of the seniors...) and not watching a moment of the game because she was socializing. I am so excited for her to be able to have the experiences that come with these next few years of life.

mda summer camp 2010

MDA summer camp this year was a riot! Shawnie was brave enough to have a volunteer (during the day) so I was asked to be a group leader over a bunch of other campers. We had a lot of fun being in rival groups, somehow she always ended up with our stolen flag and I never once was able to get hers... We both have made some pretty incredible friendships through the years of summer camp so far and have come in contact with some really amazing people. It was fun for me to get to be a part of the preparation and "behind the scenes" as well as to watch Shawnie interacting independently with others, but also to still be a mom at the end of the day (and get a few hugs throughout the day as well...) I am forever grateful for people like our friend Brenda Wilson, who sacrificed a week of her life at a challenging time to come and help and influence a pretty special kid.

One of my favorite camp memories was when my group's flag got stolen and the consequence was that we group leaders had to jump in the pool. Well, Shawnie knows that my ability to stay afloat in any body of water is nill, so she immediately burst into tears, crying because her mom was going to die at summer camp. It took a while to calm her down, and I wore a PFD AND a duckie floatie when I jumped and thanks to Shawnie, the group leaders were very careful with me and all ended well. Good times.



One of the greatest highlights of the week every year is the talent show, and according to everyone at camp, one of the highlights of the talent show is Shawnie and her friend Rylie Carpenter's dance. This year was just as awesome as ever, maybe even the best yet!

graduation

Shawnie just finished her final year at Edith Bowen Elementary School. (sniff! sniff!) What a blessing that place has been in our life. I never could have known nine years ago when we made the decision to move Sari there what an impact it would have on our family. Both of the girls had incredible teachers and friends throughout their years there that have influenced them in many ways. They were both loved and adored by everyone in the school, administrators, teachers and students alike. They both participated in the honor choir and Shawnie was able to participate in spanish dancing and was a member of the student council for three years, as well as a member of the newspaper staff! Shawnie's teachers had amazing attitudes and were able to see instantly beyond her physical disability at the "normal kid" inside and treat her as such. She became an integral part of the school community and I can honestly say the school will never be the same without her there! She even had a teacher who had never taught her come up to her on the last day of school in tears thanking her for her influence. I get all teary thinking about it! I am so grateful for the opportunities and blessings and memories that have come from our experiences with this wonderful institution. I just can't believe it's really come to an end.
But now we move on to new and exciting adventures! Shawnie will be starting over (NEXT WEEK!!!) making a difference once again in a school that is not prepared for her challenges but ready and willing to embrace them. The Bear River Charter School will be just as blessed for having her attend as Edith Bowen was and I'm excited (and really nervous) to see where these next few years take her...

mda

We really don't like to ask people for donations for ANYTHING, but MDA has become SUCH an important part of our life and has made a big difference for us already...



Once again we're joining as friends and family to "STRIDE and RIDE" to a cure for Muscular Dystrophy! We're inviting all our friends and family to please join us or make a donation to our efforts for MDA! Together we're providing help and hope to kids like Shawnie who are served by MDA in our community. To donate ANY amount through our team, please visit:
https://www.joinmda.org/2010utahstrideride/meliscrzy

Muscular Dystrophy Association uses these donations to send kids with MD to an incredible week long summer camp each year, to help pay for needed supplies, doctor visits and equipment and support further research. This year, among other things, they contributed $2000 towards Shawnie's new communication device. It is a great cause and benefits many wonderful people with MD who are in need of special help.

independence

For Christmas, we bought an automatic soap dispenser to go in the girls' bathroom. I know, WOW. How thoughtful we are. Actually, we've been trying to help Shawnie be more independent. Now she can wash her hands and face, start to finish, by herself. Well, thanks to that handy dandy gift, that's not the only thing she can do by herself now.
Thursday she came home from school and headed straight into the bathroom. She was in there for a little while, but I didn't really think much of it. She came out just about falling out of her chair with uncontrollable laughter. I had to ask several times before she would finally confess what she'd done. A friend at school had taught her the "soap on the toothbrush" trick and she'd drizzled soap all over Sari's toothbrush. She was so excited to get Sari good. After I laughed for a while, I said, "That's fine, but just understand, I'm not going to stop Sari from getting you back!"
A little while later, she came out of her room and said she felt bad and was worried. She went in the bathroom and washed it all off. Personally, I think she was most worried about the retaliation factor. Anyway, we went on with the evening and didn't speak of it again.
The next morning, the first thing she said when I went in to get her out of bed was, "Did Sari brush her teeth?" The monster within had gotten the best of her, and she'd gone back in the night before and reapplied the soap.
The funniest part of the whole story is poor Sari didn't even notice! (I guess she must be used to the taste of soap in the mouth.)
Keith and I decided at this point it would be wise to keep our toothbrushes out of reach...

sickies...

Hi. This is Shawnie here. I've been sick over the past week. Now I got my dad sick. Not fun.

funny Shawnie

The other day Shawnie was creating a card for her aide who is getting married next month. She worked so hard on it for two or three days. When she was finished, Keith and I debated whether or not we should tell her it said, "Gradiations, your getting marred!"
In the end, we helped her tidy it up a bit.

life is beautiful. again.

So we went to Salt Lake to Shriners hospital on Wednesday this week. We sat the doctor down with saw in hand (his hand, of course) and said, "This cast is totally digging into her lap when she sits in her wheelchair all day, see how her leg is all red from the pressure?" He started cutting. Almost two inches came off the bottom of her cast. Next we say, "Her right arm is having a LOT of issues, the position that the cast has put her shoulder in is very good for her posture, I'm sure, but it keeps sticking straight up in the air and locking her elbow and getting stuck! It is pulling the muscles tight all the way down her back and we can't reach it to rub it out, not even with a wooden spoon! (thanks, mom...) Is there any way we could cut a window in the back?" Sure, he says, and starts cutting away. This is the point where he says, "Hey, it needs to be comfortable!" I looked at him and (laughing) said, "It's not EVER going to be comfortable, all we're looking for is wearable." So as he's cutting away at the window in her back, I thought to myself, "Why not..." and I said, "I know this is asking a lot and I'm sure that they are important to the structure of the cast (this is what the other dr. had said when I asked him) but she's been SOOOOO emotional about these handlebar straps over her shoulders. Would it ruin everything to get rid of them?" Nope, he said, and sliced them right off. Shawnie was hilarious. She just kept saying "thank you, thank you, thank you!" It ended up being one of the most worthwhile trips we've ever made to Salt Lake. Her spirits are high, her whining is low, and life is beautiful once again.

shawnie's cast

On November 18, Keith, Shawnie, and I headed down to Salt Lake for an orthodontist appointment and to be admitted to Shriners hospital for her rissor cast. It ended up pretty much being her worst nightmare of a trip. The orthodontist surprised us and said that her palate expander had over-expanded so he was going to take it out for a while. He started to pull it out, and she got really upset that it was hurting so bad. All of a sudden it came loose, and the molar that it was attached to was still attached to it. He had pulled out her tooth! The only molar she had on that side of her mouth and it was gone, just like that. He felt terrible, he said it must have been ready to come out but he normally numbs it first. Go figure. He also gave us a palate expander for the bottom teeth. Normally he glues them in, but he was worried that it's going to cut her mouth and tongue to shreds with the lack of control that she has of her tongue and her susceptibility to cankers, so he wanted us to be able to take it out. He put it in and she was absolutely miserable, just depressed and uncomfortable and sore and frustrated. When we got to the parking lot at Shriners we decided that it was rediculuous to put her through all of this at the same time, so we popped it out and it hasn't made its way back in yet.
The rissor cast procedure was just as bad as she was afraid it would be. The night before the procedure, we met with the doctor for the first time. It was here that he informed us that his intent was not just one, but two 3 month castings for a total of 6 months in her cast. This puts us into April instead of February. Then, if all is well, she will go into a special back brace for a couple of years until she has stopped growing enough to put the rods in her back. Her scoliosis curve was at 70-80% when we were admitted. During the procedure, after anesthesia had set in, they put her in traction and twisted her straight, then casted her at that point. Afterwards, they did an x-ray and found that they had reduced her curve to 30%. This is incredible and they were very pleased with their work, but in the meantime, Shawnie's little body that was used to being contracted was now expanded beyond it's capacity. Her back and tummy and hips have really struggled with it. Now, two weeks later, she is still really having a hard time. They have decided that she needs to be seen again, because I guess this is abnormal, so on Wednesday this week she goes in for a check-up. She has been totally depressed. She says she doesn't even look like Shawnie anymore. This afternoon, as with every afternoon, she got weepy about the "dumb cast". She wants to know why she has to go through it if she's going to have to have the rods in the end, anyway. I don't even know what to tell her. Her friends at school have been so supportive, though. Her teacher is making all the students in the class sit up with their shoulders back to make her feel better. A boy in her class said she looks cool, "like a football player." Me, I still think she is "superwoman" and can't believe the endurance that she always pulls through with. Her testimony is getting stronger even as her morale is getting weaker. I wish I could take this away more than anything else in the world, but I know that she is who she is for a reason, and she'll be blessed for her strength in trials in the end.

teton science school

So WAY back in October, Shawnie FINALLY made it to Teton Science School with her 5th grade class. Her teacher and I have been talking about it since she was in second grade. It was more incredible than I imagined it could ever be for her. Thanks to wonderful people who bless our lives, she had everything she needed to be successful while she was there. We had a medical stroller that mom found at DI adjusted by 'Stan at the AT Lab' to be able to handle the terrain, and at the very last minute the night before we left, mom saved the day by creating a mini-sleeping bag with built-in pockets for handwarmers to keep her warm in the frigid temperatures.
She had so much fun! Before we got there, they set up ramps to the doors of all the buildings so she was able to get around the camp in her wheelchair. She got to sleep in the bunks with the other girls in her class. Her group went on a special hike to Jenny Lake so that she could be successful. She saw elk and bison and a fox, heard the elk bugle at night and was voted the best imitation elk bugler by her classmates, she rocked at it!! Her group leader, Jared, was thoughtful and kind, and Keith made sure all her needs were met during the days and I was able to help her at night. Her teacher, Mrs. Jensen, is incredible and has so much faith in her!
In the parking lot of the school when we got back, Mrs. 'J' and I both looked at each other and started crying! We'd been mentally preparing for so long, it was hard to believe it was over, and such a success. I am so grateful forever, she'll never forget this experience.

Shawnie's song

Shawnie composed this song yesterday:

my song

maybe if Jesus were here then we wouldn't have to be scared
because he would tell us what lies ahead
maybe if Jesus was here he would make me feel
like I am not the only one who ever has felt scared before
we just need to hold on hold on
when you feel scared I will always think about you
just hold on hold on
and I will wait for you

happy 11th birthday Shawnie!

I've finally gotten around to Shawnie's 10th year celebration. It made me tired just watching it! I can't believe everything that this kid fits into her little life. She truly is an angel and we feel so blessed to have her in our family. My favorite memory of her year is definitely MDA summer camp. We had an incredible bonding experience there. Notice also her birthday party at the end...SO atypical of me, we went ice-skating, the rink provided the decorations, the cake, the party favors, we just showed up. When it was over, we walked away. It was fabulous and just as great a memory for her as the parties and cakes that have taken hours to prepare and clean up.

I love you tons, Shawnie. Thanks for the strength that you add to our family. It is so fun to see you grow up and have such a love of life. Your happy heart and precious giggles help us remember to laugh even when things get tough. Your little testimony is getting stronger every day and I get so excited when you see the Lord's hand in your life. Always remember that He is there for you, and we are too!

Happy Birthday Angel!

enduring it well

We had a bit of a rough day on Thursday. Shawnie had an appointment with the orthopedic doctor in Salt Lake to check the plates in her knees to see if they were ready to come out yet. (they're not...) We've been having some problems getting her to sit up straight for a while, so we asked them to do an x ray of her spine. Well, she has always had mild scoliosis, but her curve has shot up to 80% which basically means her ribs on one side are touching her pelvis. They were able to stretch her out and reduce it to 40% which means it's still flexible but the only solution the doctor could give us was fusing her spine and putting in metal rods. She flew out of the room sobbing, and I had a hard time holding it together as well. Her bones are still growing so his recommendation is a 3 month upper body cast called a risser cast this winter. It may take multiple castings, but he's hoping to hold her off of surgery until she's 13 or so. She's had a hard time coming to terms with it and was pretty weepy even through yesterday morning. (I've been weepy as recent as last night...ok, make that this morning...) The cast will mean light anesthesia, a couple of days in the hospital, no showers for 3 months, and a whole new wardrobe. But she's so tough! She knows what she needs, she deals with the frustration, and moves on to the next step.
I am not being so tough. So I took Shawnie's advice and went to the temple yesterday. It's amazing how fast the spirit in the temple can fill you up and calm you down. I got there just in time to have a few minutes to ponder and pray in the waiting room before the session went up. I was feeling absolutely drained, so instead of pulling out the scriptures to read, I just prayed. When I looked up, the man sitting in the row in front of me was reading the scriptures and it was open to Doc. & Cov. 121. My eyes went straight to v.7 and I read down.

7 My (daughters), peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment;

8 And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes.

9 Thy friends do stand by thee, and they shall hail thee again with warm hearts and friendly hands.

10 Thou art not yet as Job; thy friends do not contend against thee, neither charge thee with transgression, as they did Job.

I had a hard time getting in control after that beautiful reminder from the Lord. I got the overwhelming impression that was confirmed multiple times during the session that this life is such a small moment, and if I can just help both of my girls to endure it well, they will be exalted and triumph over all these challenges. I felt a little chastized as I read verse 10, because I need to always remember the love and support that we are blessed with from so many people. I know that Heavenly Father has placed each individual in our life to bless our family in different ways and I know we'd never be able to be exalted in the end without these interactions.

So with the support of family and friends, we'll all endure it well, and triumph over this foe.

crazy lady

I don't think there is much to say about this one, except where did this kid come from?? I'd have vomited all over the rink. She definitely has a power soul.

get a grip

ok, I'm a little slow with the posting. It's not because I'm sitting around drinking cocoa and watching old movies, though. We're out making memories like crazy. I KNOW I should be recording them but lately there just aren't enough hours in a day even to sleep. Shawnie told me the other day to "get a grip". She also told me, "Mom, you need to go to the temple." It was a great reminder to me from a great source.
Maybe by Christmas I'll be caught up....maybe not....

Shawnie vs. goats