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!
