Sunday, September 25, 2011

Love and Kindness

Look at this face
Seriously, how can you not just love him!

Today I am feeling so grateful for people who love this kid and watch out for him.

Yesterday we had a neighborhood party at a local park. One of the games was a cake walk. You walk around in a circle with other people and try to end on a number. If your number is called then you win a cake. I explained the rules of the cake walk to Tyler and his eyes lit up. He wanted to win one of two cakes. They were both chocolate and looked delicious! It was very apparent to everyone around that Tyler was quite focused and intended to win a cake! Well, the game began and cake after cake was won and Tyler wasn't part of the winning. With each cake that dissappeared from the table Tyler's head hung a little lower. I wasn't close by to cheer him on, I was off chasing Lauren but my heart was breaking from afar. He didn't need a cake but I wanted him to feel the excitment of winning. Finally it was announced that this was the last round and there was only one cake left. The participants walked their little circle and stopped on their numbers. I stood off in the distance hoping Tyler's number would be called. The person in charge pulled out a number and suddenly I heard a loud cheer and clapping from the crowd. Everyone was patting Tyler on the back as he walked to the cake table. He didn't get one of the yummy chocolate cakes but he was just so excited to win he didn't seem to mind! I was glad that I wasn't around everyone because I got a little emotional. I could feel the kindess and love from our friends and neighbors for Tyler. It was a very sweet moment. Not only does Tyler feel that love and support, I do. I feel like people are loving and supporting me and my efforts at times like that and I appreciate it more than they could ever know! It reminded me of the 1st time Tyler gave a talk in primary and when he was done the entire Sr. primary started clapping for him. I appreciate the love and support others show him. He is a special kid and thank goodness he is so loveable!

Thursday, September 15, 2011

1st Day of School Pictures

I am a little behind in posting these pictures. The kids have been back in school for almost a month now! I have to say that it's been great. I love my kids but I also love having a little time to think and get organized or just head out to the store or lunch without everyone!

Tyler, Alex, and Abby all started school on the same day at the same school. They are all going all day this year which I LOVE! After a few years of preschool and kindergarten schedules it's nice to have all 3 of them coming and going at the same time!

Here they all are right before we headed off the school.

All three of them are doing great so far. Abby has adjusted to 1st grade and going all day really well. Alex is making friends, excited about reading (which is not normal!), and says he has gotten 100 times better at catching a football at recess which equals one happy kid! Tyler has LOVED being back in school with friends, schedules, school lunch, and his teacher.

Lauren started school a week and a half later. She is going to preschool 3 days a week. Here she is just before the bus came and the meltdown began!

Sending her on the bus the first day was very difficult. I knew that she didn't understand where she was going. She didn't understand why I was leaving her on this bus and waving goodbye to her. I could hear her screaming and crying on the bus and it made my heart hurt! Since that difficult first day things have gotten better. She still cried a few times as I put her on the bus but atleast I knew she understood what was going on which made me feel better. Last time the bus came Lu walked right on without crying and waved goodbye to me. It was great!

Wednesday, September 14, 2011


This morning, while driving the kids to school, I thought about how great it is that my kids are friends with eachother. Alex has been working on writing and drawing a comic book for the past few days. He sat in the back of the car reading it to Abby on the way to school. She would laugh at the funny jokes and I know that made Alex so happy!

This is a picture of Alex and Abby on the trampoline with their Webkinz. They are always coming up with fun games to play with the stuffed animals.

At night, when they should be going to bed, Alex and Tyler bond in their room. They play games, build legos, and generally irritate their mom and dad who really want them to go to sleep! But I love that they are downstairs making memories that they'll remember when they are older.

I have many fond memories of when I shared a bed with my little sister as a kid. They are memories that we still joke about to this day. I love to see my kids making those kinds of memories with their siblings.

I also love that they are kind to eachother. Last week I caught this cute moment between Tyler and Alex. They are watching a show in the computer together. I love Alex's arm around Tyler.

They are a bunch of ragamuffins as Nate would say but they are my mine and I love them!

Tuesday, September 13, 2011

Back Story

Part of the reason I started this blog was to have an outlet to express some crazy emotions I've been feeling for the past 9 month (no I'm not pregnant!). I needed a place to share what's happening in my life and I needed an outlet to vent at times. So, I thought I'd share what's been going on the past 9 months.

Last November, I attended a Time Out For Women conference in SLC. I wasn't planning on going. In fact, it was a very last minute thing. Even as I was driving to it I was wondering why I was going. I had been away from home too much recently and I was feeling a little guilty for leaving Nate with the kids again. But, I went anyway! Two of the presenters were Linda Eyre and her daughter Shawni Pothier. I was enjoying their presentation and really caught onto the phrase of being a deliberate mother. It's something that I had never given much thought to before. Somewhere in there presentation, Shawni showed a picture of her youngest daughter named Lucy. Lucy reminded me of Lauren. I instantly felt a connection to her. Shawni mentioned that Lucy had been born with an extra toe and had some developmental delays and that she had an eye disease that would cause her to lose her vision. Since Tyler and Lauren had been born with extra fingers and toes I was even more drawn to that cute little Lucy. At one point during the conference I wanted to buy a book written by Linda and Shawni that had a picture of Lucy on the front cover. I couldn't even look at the book without getting emotional because of the strong feelings I was having.

The day after TOFW I decided to look up Shawni's blog called 71 toes. I read about Lucy and looked up some information about the syndrome Lucy has. It's called Bardet-Biedl Syndrome. As I looked at the list of markers for the syndrome I was shocked. It was describing Tyler better than anything I had ever read. I sat and stared at the computer screen in disbelief for a while. I couldn't believe that after so many years I could have really stumbled onto what Tyler has and most likely what Lauren has by going to TOFW! It seemed to fit perfectly but I was having a hard time believing it. I knew that I needed to find out more information but I didn't even know where to start! What followed over the next couple of months were little miracles that showed me that I was on the right track. I was able to get in touch with Shawni Pothier and visit with her a bit. I was able to find another mother near me with 2 children with the same syndrome. I was able to find a local pediatrician who has experience with the syndrome and I was able to get an appointment with genetics with only a 2 month wait instead of the 9 month wait that I had initially made! There are long stories that accompany each of those events but it's too much information to share at this time.

Even though I had strong feelings that I had found out what Tyler and Lauren had I still hit a road block mentally when I thought about the "going blind" part of the syndrome. Most people with the syndrome have Retinitis Pigmentosa which is a degenerative eye disease that causes significant vision loss. I just couldn't imagine that my kids had that. I felt that if my kids didn't have the eye disease then we might not have the syndrome. If they did have the eye disease then we did. I knew a lot was riding on that information. We scheduled an ERG for Tyler in March. It is the test that would tell us whether he had RP or not. He had to be sedated to perform the test. I sat in the same day surgery waiting room of Primary Childrens. I've been there a number of times before so I knew how it would work. After the procedure was the done the doctor would come in and sit with me to tell me how it went. I watched a number of doctors come in and visit with parents. I wondered why they were there and what hard things they were going through. Finally, Dr. Hoffman walked in to talk with me, only this time it was different, he invited me to a seperate room to talk. My heart immediately sank. I knew that was the "bad news" room. He told me that Tyler did have RP and that he would most likely lose a lot of vision by high school. Looking back, I feel like my whole world changed at that moment. I cried for a moment and then had to pull it together quickly to listen to what the doctor had to say. As I left that day I didn't know what to think or feel. The only emotion that I could make any sense of was the feeling of gratitude. That day I learned that we did for sure have that syndrome and I learned that without a doubt I was led to that TOFW in November for a reason. I had prayed for 10 years to know what was wrong with Tyler. I had prayed to be led to answers and I had prayed for help. When I went to TOFW I didn't know what I would find there. I know that Heavenly Father put me there that day as an answer to years of prayer. I felt so grateful that I now knew what we were dealing with.

Since then I've had a lot of sad moments. The spring months are quite a blur to me at this point. I slipped into some sort of survival mode for a bit. I feel completely overwhelmed by what lays ahead of us with Tyler and Lauren. I am still learning about this syndrome and actually only know very little about it still. But, I have felt supported by angels both seen and unseen. I have gained a greater testimony that prayers are answered. And I have learned to appreciate the term "tender mercies". I always thought that was the most overused phrase. I now have a greater appreciation for tender mercies and how they show us the love that Heavenly Father has for us.

So there you have it....that's my back story!