Tuesday, February 11, 2014
The world of Rare Disease is never a world we wish to be in. When we found out that Cali and Ryann both inherited a recessive gene that Rick and I both carry our world became just that - RARE. When our beautiful girls were finally diagnosed last year after 14 years of searching for answers we weren't sure if we should be happy or scared. It's one of those situations where you are laughing and crying at the same time. We feel the same way today, one year later. It's not easy having two special needs kids with a Rare disease. As parents we feel like we are never doing enough. We struggle everyday to keep calm and patient and not get frustrated. We know that Cali and Ryann can't help themselves not to cry every morning because they are annoyed that we have to dress them, brush their teeth and help them with every step of their routine. They can't help but cry because they want to go with their friends and play on their own. We know that all they want is to be independent like their middle sister, Raelyn. We also know that Raelyn is watching us and how we deal with those frustrating situations. Yet, we do lose our cool at times. We do have to count to 10 backwards and remind ourselves that this is our life and we have to keep the happiness, peace and tranquility. It's not easy but we can do it. Then, those proud moments happen that make it all worth it. An opportunity comes into our lives and we grab it, run with it and it makes every hard moment worth it ! Right now we are in the middle of one of those amazing moments and we couldn't feel more proud and excited! Our geneticist with UCI approached us with an opportunity for research. We went to UCI and toured their lab and met the scientists who are working hard everyday to find answers for Rare disease. We got to see the stem cell research lab among all of the the other labs and talk to the scientists about what work is being done that most of us don't ever think about. You see, we have two little girls that need this research so badly in order to have the life that all of us wish for them to have. They need treatment. They need answers. These answers aren't going to come if we sit at home and do nothing. They will only come if we look for them and keep searching. So we decided to work with UCI and see what we can find out. The downside is that research is not covered by insurance and there isn't extra money laying around for them to use. We have to fund it. Trust me, we don't have this kind of money either so we have to ask for help. We have to enter another new world of fundraising. This does not in any way sound fun to us. We have never asked anyone for anything. We are very independent people but we cant get this money on our own. So here we go!!! We played around with what the heck we could do for this fundraising. UCI suggested for us to have a party at our house and ask our friends and family for money. This sounded like a terrible idea to us. "No way!", we said. So we waited and thought about it. One of our closest friends told us about an inspiring documentary called, Miss You Can Do It. She said this woman who has cerebral palsy won Miss Idaho and was so inspired she started a special needs beauty pageant and now years later families travel from all over the country to take part in this event. I was absolutely inspired and thought, "That's It!!" We can have a fun fundraiser where we can make these special needs kids feel beautiful because they truly are. We can call it "Especially Beautiful"!! The idea stayed in my mind and heart and then another opportunity put the icing on the cake. Another one of our closest friends told me that he was working to promote a new fashion like called , Rove. "WOW!", I said, "This is perfect." I excitedly explained the idea of our special needs fashion show and he was all in. This is was the beginning of "Especially Beautiful- A Rare Fashion Event". We have so many incredible families in our lives that have especially beautiful kids so it was hard to only have a handful participate this year but I didn't want to bite off more than I could chew. With the help of the most amazing team in PR, Fashion, friends and families this dream is now a reality. On March 2 we will have 10 gorgeous girls strutting their stuff and showing the world how beautiful the are! They are all modeling Rove clothing, we will have their hair and makeup done and of course they will all be wearing their huge smiles :-). We already had our photo shoot last week and that was the most rewarding day of my life. To see these girls get styled and dressed up and the look they had when they looked in the mirror - AMAZING! I have found my calling. I cant explain how wonderful it is to see how proud they are of themselves, how beautiful they looked and how happy they were. I was jumping up and down in the studio every time another Especially Beautiful model let herself feel beautiful in front of the camera. We cant wait to see them model in person in front of all of us proud parents, friends and families. I have been dreaming every night about the event and I know it will be life changing for so many. So here we are with this incredible opportunity to not only fundraise to help Rare disease but also to inspire. We all need inspiration to be the best that we can be. The teary eyed look in everyone's eyes of pride and joy is the best feeling. This experience makes those hard and frustrating moments worth it. I now know why I am here. I now feel like I have learned what my life is about. It is about taking risks and thinking about others while we fight for ourselves. It is about community, love and sharing. We don't know what answers we may find but that doesn't mean we should give up. It means fight harder and look deeper. We are happy we have this exciting event with these amazing kids and families here with us too. Making them smile and feel Especially Beautiful is an incredible feeling that we want to continue forever.