Walk-A-Thon or should it be called a "Talk-A-Thon"

Saturday's Angelman Syndrome Walk-A-Thon was AMAZING. We had about 35 people show up to support Kendal. The day started out so ugly, and yet all these people got out of their beds and came down in their "Team Kendal" t-shirts. I was so proud to be surrounded by people that love us - we have truly been blessed to have amazing family and friends. In addition, we had many people that donated to the ASF on behalf of Kendal and we thank you so very much!!!

As usual, I did more talking than anything. I'm not sure why it is a Walk-A-Thon. I think if I were in charge, I would just have some comfortable seating to sit around and socialize. Something I LOVE to do!

We met several people that I have talked to or seen their blogs on their children. I spotted beautiful Carmyn (http://lovebeingamom-paula.blogspot.com/) and was so happy to met Paula, her mother. Paula, please let me know if you end up moving this way - it would be great to get together!!

I was able to trade stories and suggestions to some parents about things that work for Kendal. Again, how blessed are we to have a network of people right here in our area?

Pictures will follow of this great event. Again, thank you to everyone that was able to donate this year!!

Happy Belated Mothers Day!

I'm sorry this is late, but I did want to send out a special post to all the wonderful mothers that are doing such an amazing job raising our kids in this sometimes crazy and bizarre world we live in today. Please keep up the fight to raise moral, caring, and courageous children. They are the future and don't forget they will be taking care of us while we're in the nursing homes. That is truly a scary thought!

With Kendal being my only child, I am used to her silence. Used to the fact that I do not know what "I love you, mom" sounds like from her mouth. And even if I never actually hear her speak it, I know that she loves and appreciates me by telling me in other ways. Sometimes though we just want to hear it.

No matter how discouraged, frustrated, or lost I can sometimes feel when I am trying to do the best for my child, I have to remind myself that God placed this special child with me because he knew I was the perfect mother for her. What an amazing honor!


These are the beautiful flowers my sister sent to me! Thank you Katie, Mike, Marilyn, & Olivia.


This is Kendal running around with my card, not wanting to give it to me.

This is one of my favorite sayings by one of my favorite artists. Please check out her website. I have several of her prints/canvases in Kendal's room.

https://www.maggielindleydesigns.com/index.html

"thank you, mom, for loving me before you ever knew me. thank you for cutting the crusts off my sandwich and driving me everywhere I needed to go. thank you for your precious hands that heal every ache and pain. thank you for being my wisest counsel and my best friend. and thank you for being my heart’s first home. I love you, mom."

Now I Feel Old....

Last weekend my good friend Shirley came over for a visit while her eldest daughter Stacy attended her School Prom close to our house. I was shocked to see Stacy at the door looking absolutely beautiful and looking so grown-up. I was just wondering what happened to the little girl I met 10 years ago. Where does the time go???

Worth Repeating

I'm sure I've posted this before but it is worth repeating. This article is about a researcher that has "cured" Angelman Syndrome in mice, by regulating a specific enzyme in the brain. Wouldn't this be wonderful if they could do this for our children down the road.

http://www.cureangelman.org/news/LongShot.html

To think maybe one day Kendal could talk...that I could know what's going through her head - what an amazing day that would be.

CDC Preschool

Well Kendal is officially in the Special Education Program in the Public School System. She is only three and it is hard to drop her off and leave her with people that I don't know as well as I would like, but I know she is in good hands and the program will really benefit her. It has been a big adjustment for her and we hope she grows to love it. Dropping her off and picking her up has been an issue because she is shuttled around several times a day now. She will be receiving Speech Therapy through the school system and she will also start with a private therapist later this month. Since she fell off of TEIS in March, she is still doing good with making sounds but has regressed on her usage of signs.

It still amazes me how the "normal" kids react to her. They seem to instinctively know that she is different and can't communicate the conventional way. Every morning her friends run to give her hugs and kisses and tell the teachers how sweet she is. Kendal just laughs and squeals, and it's the most beautiful sound I have ever heard.

Just Found it and I love it

I just ran across this picture we took last summer, and I absolutely adore it. It's Kendal with her "Nana". We had been out on the lake all day and we were riding in the boat back to the house. After a hot day, the wind felt so good!

I promise by Wednesday I will update you on Kendal. She had a rough day today and I can't expel any more energy thinking about it. Details to follow.....