Jasmine and Nicolle brought the boys to the Mall and got their picture taken with Santa. So cute!!
Update on our Family
When I sat down to write this blog, my intention was a simple, quick update. As you can see, it did not turn out that way! There are just too many pictures and way too many fun things that went on this fall. This past year has had lots of ups and downs for us. We are imperfect people and make a lot of mistakes and we are trying to figure out how to take better care of ourselves and each other. But for this post, I want to focus on the positive! We are so blessed and grateful for so much. During this season, especially, my heart is really full. I am so grateful for God, Jesus Christ and the Church in which I am a part. I also love Brad, Laya, Eli and Evan with all my heart.
Brad's been busy at work. He's had to travel a bit more, so that's fun for him to get away and have a break from the family from time to time. (ha ha!) He always finds something to stay busy with. In addition to his job, he maintains a website and is in the process of building a new one for a company in Texas and volunteers to help the Cure GM1 Foundation with their technology/website needs. Brad teaches the 15 year old Sunday School class at Church each Sunday and has been doing that for the past 2 years. In the fall, Brad went on a boy's trip with some friends and hiked across the entire Grand Canyon in one day!
I have been serving as teacher for the Relief Society (women's group that meets together at Church each Sunday) for the past 6 months, teaching once a month. (I really love this calling) I've been working hard to get things in order more at home and cut out non-essential activities in my life so that I can focus more on what's most important. I've also been serving as the Secretary for the Cure GM1 Foundation for over a year. This past Fall I accompanied for The Vail Chorale's Fall session and concerts and three other school choir's fall concerts, but have stepped down as accompanist for The Vail Chorale, I will truly miss that.
Laya is in 5th grade and will go to middle school next year! What?!? She was involved with a program called Starbase that they did with the 5th graders in her school this year. It was a field trip they would go on once a week for a full day, for 5 weeks. They got to do real life experiments, designing and "missions" revolved around STEM (science technology engineering and mathematics) every day at the Davis Monthan Airforce Base where the program was held.
Eli has been doing pretty well. He will turn 9 in March, What?!? Here's something I wrote in my journal on November 7th. "Today as I was hugging Eli, he wrapped his arms around me and squeezed me in tighter. Even though his movements were awkward and uncoordinated, I could tell he was showing me love. And boy, did I enjoy that moment!" He has so much love to give even though sometimes it's hard to tell. He continues to have choking episodes (at least a few a week) and has begun to have issues with poor circulation in his legs especially. We now prop up his legs with a pillow and send him with a blanket, coat, neck pillow and gloves to school each day. He looks so cozy. Bathing him in the bath is getting more difficult. We have a bath chair, but it doesn't work well for Eli since it doesn't have a good harness. (I'm looking into getting a better one in the future). So we gave him his first sponge bath the other night. Jasmine was here and gave me great ideas on how we should do it. It was much safer and calmer and I think he really liked it.
Evan has loved being at Desert Willow Elementary this year in Kindergarten. He loves riding the bus, helping out at school and learning. He has some special jobs that he does from time to time such as walking around the school delivering things and feeding the Tortoise. He now has a walker and has been really liking it. He especially loves to use it at school where there are so many open sidewalks! He also received a new official special needs stroller and rides that on the bus lift now.
My sister Ashley got this shot! She should be a photographer and Brad says Evan should be a helmet model!
Evan's new chair
In November we had 2 sets of visitors. Brad's sister Lori, her husband Brandt and their six kids came to visit for Thanksgiving. We loved having them so much. They are the nicest family and we just loved every second.
The next weekend my sister Ashley came to visit, she flew down with her 7 month old Ruby and left her 3 year old with her husband at home. Ruby was the sweetest thing ever, so much fun to spend time with them. We were honored that they decided to sacrifice time and effort to come see us!
In October Brad's parents came to visit during our Fall break. They spent a few weeks here hanging out with us, having a great time and being super helpful and thoughtful.
Then my parents came to visit just a few weeks later and spent a long weekend, which mainly revolved around food and fun! We were also so grateful they took the time to come see us and spend time with us. We had fun dressing up for Halloween! :)
Doug and Christine, the Founders of the Cure GM1 Foundation came out to Phoenix for a trip and we drove up to spend some time with them at the zoo. It was the first time we had ever met another child with GM1 Gangliosidosis. It was a really great experience and a memory we will never forget.
Back in September, my Great Aunt Sharon stopped by to see us on her way to visit my second cousin. It was amazing to see them and very kind that they took time to see us on their way to Sierra Vista.
The Tucson Temple has been completed and it is amazing and beautiful!
We are having a Christmas party this weekend with all the Respite Providers that we've had in the past, Nicolle, Alex and Jasmine. We are going to have food, games and silliness. It'll be great. We love our respite providers and have been so blessed to have help. They truly have become a part of our family and we love them.
Jasmine and Nicolle gave us this amazingly cute picture board. I love it!
Sunday we will go to Church of course and I will accompany on the piano for the Choir's Christmas program. And then we plan to just have a quiet, relaxed Christmas at home with our little family.
We love you all and appreciate all of your love and concern for us!!
Love, Marilee, Brad, Laya, Eli and Evan
Here's an update on what's been going on with the Cure GM1 Foundation.
Dear Friends of Cure GM1,
We have had an amazing year. Thank so much for your continued support. Here is a message from Christine as part of our December Update. "Please help us end this banner year in the strongest way possible....your support helps fund potentially life-saving medical research."
Here are a few ways you can help us finish out the year strong!
- Help Distribute Cure GM1 Christmas Card Designs
- Make an end of Year Donation
- Post pictures of Holiday Lights on social Media #BeTheLight and #CureGM1 in honor of children with GM1. Consider adding a donate button with a link to https://donate.curegm1.org.
- Sell or Purchase from Yankee Candle (40% goes to Foundation) Group Number: 999976987
- Sign up for FlipGive and purchase from stores online such as Walmart that gives 3% and more to the Foundation.