Saturday, July 9, 2011
Friday, July 1, 2011
Friday, June 17, 2011
Wednesday, April 13, 2011
So I went to have my lung study at the local hospital. I got to sit in a Plexiglas box and breathe into a tube several different times in several different ways. The computer did all kinds of calculations, the results were sent to my doctor and we met with him to go over the results. He said my lungs are already starting to have some trouble absorbing oxygen. Not much but enough that it may be affecting my sleep and that may be why I have been getting light headed when I over exert myself.
So, he wanted to do another test. He wanted to check my oxygen levels while I sleep. I went to the hospital and picked up a pulse oximeter. I got to wear it for a night while I was sleeping. Those results were also borderline so he ordered another test. He wanted me to do an overnight sleep study at the clinic.
It took me a while to fall asleep. I put in my ear plugs and put on my eye mask. I finally felt like I was just in a deep sleep and far in the distance I felt the lights go on and heard the door open. It was time to wake up. (Well, what they thought was time to wake up. I wouldn't consider 5:30am an hour I would generally choose to wake up.) It took a little less time to unhook me from all the wires. They had to spray a solvent in my hair to get the sensors from my head unglued. That was fun. I gathered my stuff and took my greasy hair home. I crawled into my own bed. It woke Jim up so we had a few minutes to chat before he had to get up and get ready for work. A few hours later I got up and got in the shower. They told me the rest of the glue would wash out in the shower, but it didn't.
It is a week later and I should be getting my results anytime now. It is a week later and I am just starting to feel like I am making up my sleep. It is a week later and I am still picking glue flakes from my scalp.
I feel like I have been a horrible wife and mother the last week because I have felt so exhausted. I hope my family understands. I know they will never feel what my body is feeling, just like I don't really know what Austin's autistic brain is thinking. But I hope they can try to understand that I'm not just lazy, just like I know Austin isn't. It is just a different way of functioning. It is very hard to describe. It is also hard to know that with both of us, even though our diagnosis' are drastically different, it is our reality. A reality we will both live with for the rest of our lives.
We live in these fragile bodies for what we think is a long time. It is sometimes hard to keep things in perspective. It has been hard for me this last week. Then I get reminded that this life is very short. It is the eternities that we are preparing for. I know one day I will be able to sit down with Austin and have a wonderful conversation. I also know that one day I will be again be able to climb a mountain.
It's OK if that day doesn't come in this life. I know the next will be even better.
Monday, April 4, 2011
Kyle is in a wonderful choir at Syracuse High School. It is called A Capella. They have the BEST teacher and all the kids a wonderfully talented. I love listening to them sing. Every spring they go on a "choir tour". (I guess they have only gone three times because the school is only three years old) Last year they went to Southern CA (Disneyland). I'm not sure where they went the year before. This year they went to Seattle. I was fortunate enough to go with Kyle as a chaperone.
The purpose of Choir Tour is to expose the kids to other cities and cultures and to get instruction from other choir directors. It also helps to the kids to sing better together when they are a close knit group. Traveling like they do definitely helps them bond to each other and become better friends.
On day two, we boarded the buses around 9am and headed to the Chittenden Locks and Fish Ladder. They use the locks to maintain a particular water level in Lakes Washington and Union, so the sea water doesn't mix with the fresh water of the lakes, and to get the boats to the right water level to be able to travel between the two bodies of water. The fish ladder is along the side of the locks and that helps the migrating salmon (and other types of fish) get up and down stream. Then we went to Seattle Center where we went up to the top of the Space Needle. We also got to look at and try at all the cool stuff at the EMPSFM (Experience Music Project and Science Fiction Museum) That was WAY fun. We then went back to our hotel and got ready for dinner and the Seattle Symphony.
The next morning, the kids had one of their clinics. This one was at Seattle Pacific University, kind of. It was in a church just of the campus but it was with one of the music directors from the university. He taught them some really great stuff. I didn't know those kids could sound any better but they did! And the acoustics in the church were great!
So last Friday night, Kyle and I invited all the kids over to the house for a reunion of sorts. We roasted marshmallows in the fire pit, ate too much pizza and played Rock Band until curfews.
Monday, March 14, 2011
Josh and I have been spending a lot of time together lately. We have been able to have some good chats. I got the bright idea to help Josh make a little gift bag of things to take to Maddie. So through text messages we found out that she was currently in the hospital. We gathered some fun things together - books, coloring books, play-dough, bubbles and a hat I knitted. After church yesterday we headed down to Primary Children's Medical Center.
Josh was nervous. He didn't know what he was going to say or do. I assured him that even though she was not feeling well, she was still the same Maddie. We felt a little bad because she was sleeping when we got there but they said it was OK and we were able to have a really nice visit. Maddie's mom was so happy that we did. She told us that was the first time Maddie had smiled all day. She smiled especially big when she saw the Veggie Tales coloring book we got and when Josh got brave enough to sit by her for a picture.
That wasn't the case with Jim's cousin, Zac, who had the same cancer. I spoke with Jim's Aunt Sue this afternoon and she said it has been ten years since they first heard Zac's diagnosis. We talked about him and I told her how much our family has learned, and are still learning, from their wonderful example.
I know that there are lots of different endings to a story that starts with the words "Osteo Sarcoma". I know how I want Maddie's story to end. But I know even more deeply the importance of humbling ourselves enough to learn the lessons that we can learn from our trials. Our Heavenly Father loves us and will tell us what we are here to learn if we only ask. Chemotherapy makes you physically weak but this girl has a strong spirit. I could tell she got it from the wonderful example of her parents. I'm sure they will be strong. I am also sure they will know when to lean on others when their strength alone is not enough. Those others are out there just waiting to do good for others.
I try every day to be one of those people. The best example I had of this was, and still is, my big sister. She was the kindest, most giving person I have ever known. Over the last few years I have tried to be more like her. I feel like that is a one way I can keep her close to me even though she isn't physically here.
One of the things that we used to talk about was her anxiousness about turning 40. She wasn't looking forward to it. She passed away four months before she had to face it. (I sometimes think that is one of the first things I am going to ask her about when I see her again.) I, on the other hand, have been looking forward to my 40th birthday. I want to have super big party! I want to celebrate being alive and being able to be with my family and friends. But I have also been looking for something more meaningful to do to celebrate those 40 wonderful years.
Well, I think I have my idea. I was inspired by our visit with Maddie. One of the things we put in her gift bag was a hat I had knitted. They were so grateful and impressed. To me it was nothing. Just a few hours spent doing something I love to do. On the drive home, the thought came to me that there must be other kids at PCMC that have lost their hair for one reason or another. They must need a hat. I don't know how to cure cancer but I can knit.
My goal, starting today, on what would be my big sister's 45th birthday, is to knit 40 hats by my 40th birthday. Boy hats with skulls and crossbones and girl hats with flowers on them. All colors and all sizes.
It isn't much on my part. I can't take all the pain away from Maddie and her family. But maybe I can help some other little girl or boy feel better about going out in public when their illness has taken part of them away.
So, thank you, Uncle Rock, Aunt Sue and your whole family! Thank you, Lisa! Thanks for being shining examples to me and my family. Thank you for showing us what it is to be strong when life is hard. Thank you for inspiring those that know you to be better people because they know you.
And thank you, Maddie! Thanks for teaching me that, "When life gives you lemons, make grape juice and leave them wondering how you did it!"
Wednesday, February 23, 2011
But on the other hand, he has the kindest, most tender, sweetest heart of any 15 year old I know. He cares about his family and friends very deeply. He is even kind and compassionate to strangers. He has one of those sparkling personalities that you just can't but help but love. When he was little, I used to tell him, jokingly, "It's a good thing you are so cute or I'd have to kill you!" Probably not the best thing to say to a child but I always said it with a smile and I know he knew I wasn't totally serious.
I occasionally get to be in the car with one of my boys and we can have a great talk. This has been one of the many blessings that has come from working our new business. Today I had the chance to ride in the car with Josh for about 45 minutes. He will just blurt out what is on his mind, right in the middle of his train of thought. It is so hilariously random sometimes! He had me almost crying with laughter.
We were following a truck with a Transformers sticker in the back window. Out of nowhere and all of a sudden, he burst out with, "If I were a Transformer, I think I would want to be a boat."
A little bit before that we were listening to my Zune on shuffle. I have a very eclectic taste in music. One minute we could be listening to Fall Out Boy, the next we could be listening to the Beach Boys. On this trip I told Josh he could have two "skips". That means he can skip a song he doesn't like and I can't stop him, even if it is a song I love. Michael Jackson's "Beat It" came on. We were almost home and he hadn't used a single skip yet. He was tempted to push the button. I stopped him, explaining that this song was cool because Eddie VanHalen played the guitar in that song. He looked at me very puzzled and asked, "Were they alive at the same time? Isn't Michael Jackson dead?" This from the boy who spent a whole month listening to nothing but Queen's greatest hits. I thought I had done such a great job musically educating him in Classic Rock. I guess I have more work to do.
All day today I had been in the car, rushing here and there. Busy, busy, busy. I got quite a bit accomplished on those trips but none of them were nearly as much fun or filled with laughter as the last trip with my baby. Our journey was a bust in a few ways. There was lots of "drive home" traffic. We got lost and even after we found the home we needed, we didn't even end up putting up the sign. But we had a great time on the journey. We talked and laughed and enjoyed that 45 minutes.
What lessons can we learn from that? Quit rushing through life! Spend some time with your loved ones. Have conversations with your kids. Or better yet, close your mouth and open your mind and ears when you are with your kids. You will get a better insight to their hearts and thoughts. They might be more willing to open their mouths and hearts to you if you learn how to listen. Find the joy in your journey.
Wednesday, February 9, 2011
When I woke up on Saturday, the skies were mostly clear and the temperatures were above freezing. I had plenty of "chores" I could have done but I told Jim he needed to take me somewhere outside. We decided to take the FrontRunner downtown and go exploring. We got the boys ready, got bundled up and headed for the train station. The boys put in their headphones and and text-messaged the time away. Jim and I enjoyed each others company and conversation.
That didn't last long, though. The boys were hungry and finding a good place to eat became top priority. Jim and I decided that our new business should take our family out for a nice dinner once a month and Saturday would be our first "dinner meeting". We walked a couple blocks south to Market Street Grill. Just our luck! It was Crab Festival time! We enjoyed a nice long late lunch/dinner. We talked about what we wanted our business to do and what we were willing to put into our business. We taught the boys about putting their napkins on their laps and that there is a difference between a salad fork and a dinner fork. And with our bellies full, we walked over to the Gateway Mall to walk around. We looked to see if there was a movie we wanted to see but there wasn't. We did some window shopping but, as usual, we ended up at the Clark Planetarium, one of our favorite places.
It was starting to get dark so we hopped on Trax and rode back to the main FrontRunner station. I was tired, but the good kind of tired. We had seen some sunshine, walked in the fresh air and spent some quality time together. It was a great day! I am hoping as the days start getting longer, the temperatures will continue to climb. I know that it will still snow in the next few months. But I also know that we are just about to see the first daffodils poke up through the dirt. That gives me hope. I also know that, if I get desperate for warmth, St George and some wonderful family are only 5 hours away!
Monday, February 7, 2011
I forgot to post last weeks meal. It was another Pampered Chef recipe that I found called BBQ Beef Bundles. It is ground beef, bbq sauce, green onions and red bell pepper, all stuffed into biscuit dough and baked in a muffin pan. Everyone liked those and they even ate the leftovers for after-school snacks!
Last week our freezer meal group got together to exchange meals. Tonight we had Taco Casserole made by my friend Angie. I don't have the recipe but it was yummy. It was ground beef taco meat, tortillas and some kind of sauce (red enchilada sauce, I think) layered and covered with cheese. I served it with sour cream, shredded lettuce and corn. If I had been feeling better I would have made some beans and rice.
If I get the recipe I will post it in the comments... Enjoy!
Wednesday, January 26, 2011
1 pound lean boneless beef top round steak, cut into 1/4-inch strips (I used sirloin because that's what I had on hand)
3 garlic cloves, minced or pressed
2 small pieces (1/2-inch) fresh ginger root, peeled and finely chopped
2 cups water
2 packages (3 ounces each) baked beef flavor ramen noodles
3 cups broccoli florets
2 carrots, sliced
2 green onions
- Heat stir-fry (or large non-stick skillet) over medium heat until hot. Lightly spray with nonstick cooking spray. Stir-fry beef, half at a time, 3-4 minutes. Remove beef from skillet; set aside
- Add garlic and ginger to skillet; stir-fry 30 seconds. Add water; bring to boil. Add noodles, broken into pieces, broccoli, carrots and seasoning packets from ramen noodles.
- Bring to boil; reduce heat. Simmer 3 minutes or until noodles are tender and most of the liquid is absorbed. Return beef to skillet; heat through. Sprinkle with green onions.
Everyone liked it. I liked that is was quick and easy to make. I thought it was a little salty. I don't think it was quite 6 servings. You could probably add just about any vegetables you like and it would be good. You could probably also make it with chicken. I would make it again!
Tuesday, January 25, 2011
Need I say more? Well, I will anyway. Christmas parties, shopping, wrapping, hosting, decorating, cooking, eating, etc.
#3 - Last-Minute Christmas Knitting
Just when I thought I was going to be able to have some fun time before Christmas, I started realizing The boys needed help with their gifts. I spent most of my evenings knitting the cutest things for my niece and grand-niece. The first got a cute, pink, felted purse and the second got some adorable, purple, kitty slippers. The third cousin got a store bought present. It needed to travel to St George so we decided that would be OK.
#4 - Jib Jab
I meant to post some of the crazy videos we made for Christmas on the blog but was having too much fun with the boys once they started their vacation. I rarely get on the computer anymore because they are all on facebook. And, Kyle had discovered that he can watch past seasons of his favorite shows on Netflix. It's not my computer anymore. But on the bright side, and a little late, here's some funny Christmas cheer...
#5 - Jim's Favorite Time of Year
Most of Jim's company shuts down the week between Christmas and New Year. Jim looks forward to this all year long. We love having this time to spend together as a family. You can usually find us hanging out at home, in our jammies, playing with our new Christmas toys. But this year was slightly different. The boys earned some money and used it to buy season passes to a local ski resort. They headed to the slopes as much as they could during their time off from school. All they needed from us was a ride up to the shuttle stop in Eden, UT. We tried to split the drop offs and pick up's with other parents in the neighborhood so we didn't have to go up there twice in one day. They are LOVING it!
We have found a fun New Year tradition that works for us. It is something my family used to do when I was really little. We get together with friends in the neighborhood and have a multi-family sleep-over. We play games, watch movies and eat way too much. When midnight comes, we let the little kids jump on sheets of bubble wrap. It sounds like fireworks but we don't have to go outside in the cold. This year we didn't get to do the sleep-over but we did everything else. I spent most of the day slicing, dicing and preparing. The New Year spread is quite comparable to the usual Super Bowl spread. We started pretty early and it had to last all night so it is nice to have a lot of yummy snacks readily available. It was a super fun night and a super sleepy January 1st!
#7 - Austin's Eagle Project
Austin LOVES animals. When he was deciding what he wanted to do for his project he knew he wanted it to help animals in some way. When we were at the county fair we stopped at the Davis County Animal Shelter booth and asked them about projects. The lady took our number and we went up to see here at the shelter. She showed us the bland cat room. She asked if we could do something to brighten things up and make something for the cats to play on.
We were worried about this winter because we didn't have a white Christmas. The day after Christmas it started snowing and has snowed in regular intervals since then. We don't get too much because we are so far west but The walks and driveway still need to be shoveled or it turns into a frozen slab of ice. Generally the best time to shovel is the middle of the day (as long as it is not snowing at the time) so the driveway has time to drain and dry before the sun starts going down and it starts to freeze. That means I get to be the shoveler because I am the only one home at that time of day. I usually don't mind it as long as I can stay warm. It just takes some time because we have a very wide driveway!
#9 - Reality Check, Again...
As soon as the days start getting cold and very short, I start to feel yucky. That's my cue that it is time to visit the doctor again. We switched up some meds and I got my yearly chest x-ray and heart ultrasound. He also wants me to go and get a lung function test so we can make sure we know if I start getting pulmonary hypertension (but I keep forgetting to make that appointment). As long as I stay warm, get plenty of rest, take my meds and take my daily walk, I feel good - normal - well, at least my "new normal".
And #10 - We Bought a Business
I have always been very reluctant to make my boys go out and get an after school job. I feel like right now their job is to work hard at school, work hard at scouts and work hard at whatever their other interest is at the time. For a while it was sports and music. It still kind of is but things have shifted over the years. I want my boys to be well rounded but I also want them to be hard workers. Kyle had a early morning paper route for a little over three years. He was able to use his savings to buy a car.
Jim has a friend at work that started this business with his family. Now his kids are grown and have gone away to college. He mentioned it to Jim and they sent some work our way. We started by cleaning out foreclosed homes for banks. We have done about six. Some are pretty gross. Others are not too bad. It is something we can do on a Saturday for a couple hours and the boys can each earn just about as much as they would flipping burgers. They can still do their normal weekday stuff and homework. It's win/win. The other part of their business is putting up the posts and signs for real estate agents. We officially bought the inventory and data for their business called Kizmet Clean Up and Kizmet Posts.
I think this will be a good thing for the next few years. I think it is important for the boys to learn to work. I also think it is important for them to feel like they have some ownership in the work they do. And I think it is important that they see the rewards from hard work. I like that they were able to buy their own season passes for the ski resort. I like that they are also saving some of that money for their future.