Sunday, August 31, 2008
Well, I never imagined not writing in my journal for 9 months but life has been very busy. I'm not sure how to really recap the last 9 months so I won't really try. Here are a few of the highlights.
Kayla started walking without the aide of her walker around her second birthday but it took her a few months before she could walk completely independently. Kayla still loses her balance easily so we have to stay close by to make sure she is safe. She is also able to walk up the stairs if someone stands by to assist her. She's such a big girl now. Speaking of big, she is 42 lbs and 43 inches tall already. She looks like a 5 year old.
More news; after a year working at eBay again, I made a decision recently to leave to help launch a website, www.myotonic.org, for the Myotonic Dystrophy Foundation where I've been a board member for almost 2 years. It's a family advocacy group started by 8 different families who are affected by myotonic dystrophy. Our focus is education, advocacy, community support and research. We also have a community site where families can connect at: www.community.myotonic.org It's been great to have time to do something that makes a difference in peoples lives and although I miss my eBay friends, it's been the best decision of my life. I now have time to focus on helping to fight this disease and to make a difference. In my free time, I'm still helping the MDA to work on fundraising events in our area. It feels so good to be in a space where Kayla is relatively healthy and that I can do such important work.
Well, we have had a really nice summer overall. We took Kayla back East to Baltimore again this summer but unfortunately it was for Jeff's father's funeral. Jeff's dad died from complications from Alzheimers. It was a really sad time but it was very special for Kayla to be able to spend time with her cousins on both Jeff's side and mine. Kayla really enjoyed playing with her cousins and it was amazing to see her running around with them, happy as ever.
Kayla started pre-school on August 19th. It was one of the happiest moments for us to see her going to school after being told that she may not likely survive past the first year. Kayla is such a fighter. She's attending a special day class where she will be integrated into a regular classroom throughout the week. It's a perfect setting for her and she loves her teachers, aides and therapists. Her teacher Mrs. Kelly is a bundle of energy and I can tell that Kayla adores her. She also has a signing aide in the classroom that is helping her to continue building her signing vocabulary. She is now signing over 170 signs and is begining to put words together to let her needs known. She's still struggling with her speech but with lots of therapy and help from us and her care providers, she's coming along. I have faith that Kayla will be able to speak so we are working as hard as we can to help her but meanwhile, we continue to use ASL signs.
Today is Jeff's and my 5th wedding anniversary. I can't believe we've survived 5 years even with all we've been through. We are going our tonight for a nice dinner to celebrate. It seems so ironic that we got married on Labor Day weekend considering that it's the weekend dedicated to fight muscular dystrophy and all of the other neuromuscular diseases. Speaking of the weekend, tomorrow, on Labor Day, Kayla will have her story told again on the Sacramento region Jerry Lewis MDA Labor Day Telethon. For those of you living in the Sacramento region (extended), tune in on channel 58 from 10:45 am to 11:30 pm to see Kayla's spot and to hear our interview. They are interviewing my mom, my aunt June (mom's twin) and I about how this inherited disease affects our family. It's the first time that I'll be talking about the disease and how it relates to my mom and I. I'm a little nervous but think it will be liberating to talk about it. I feel like I've been living someone else's life as I've been nervous to talk publicly about it but I'm finally ready. If you are able to, you can also make a donation during the telethon. Make sure you tell the person on the line that it's in honor of Kayla. :) I love being able to share Kayla's story with everyone and for telling how she's beaten the odds.
Well, Kayla wants me to pay attention to her so I'm going to sign off for now. I'll write more later.