Thursday, May 19, 2011

1 & 1/2 YEARS OLD!!!

Wow - we are halfway there to beating the major odds - a second year with Skylar! It's incredible to have a year and a half with our little girl! We have a 10% chance of making it to November 19th with Skylar and we're hoping to see that day and celebrate it big time! We've been pretty stable these days and are just in a period of waiting. As far as Skylar goes, we're waiting for next month when we can get the trilogy (and check into the hospital), we're waiting to see if Extreme Makeover will bring that bus to Atlanta (we still haven't given up hope), we are still waiting for Skylar's teeth and we're waiting to switch all of her equipment again once we get the trilogy and fight for some more back-up equipment. As for friends and family, we're waiting for updates on baby Joshua, waiting for news about my step-Grandma in FL who is pretty ill right now, and in general, waiting to see what God does in our lives and those around us. Even though we're waiting, we're still living!

This past weekend, I had an amazing day Saturday! I was able to drive to Knoxville, TN for the day to hang out with the Gooden Family! That's right, I got to spend the day with sweet Nora Gooden who is the most precious little girl next to Skylar of course. I can't even begin to describe how much love I have for her and for her family. You may recall seeing Nora in pictures on my blog meeting Skylar last year when they came to the GA Aquarium and stopped by to visit. Anyway, I made it up there around lunch time and got to play with Nora for a few hours. She is so expressive and fun to be with - I helped her launch little plastic monkeys into a plastic tree for hours until it was her nap time. I loved seeing her so excited and proud of herself! Later, we went for a walk, played with bubbles, watched cartoons and just had fun. I hijacked her iPad so I could see all of the great apps they have found for Nora since we're always looking for new fun things for Skylar. I was able to get her to smile and laugh by tickling her with my hair - it was so cute!

As I was sitting outside with the adults for lunch, TJ said, "tut tut, looks like rain" very casually and I looked at him with a smile and asked, "did you just quote Whinnie the Pooh?!" It cracked me up! Later, they quoted a few other movies perfectly, without hesitation, in normal conversation. I thought Kyle and I were the only ones who brought animated movies to life in casual talk so it was really fun to hear someone else do it and be able to appreciate it :) Tj and Jamie are such a fun couple - I wish we all lived closer together, but the three-hour drive was totally do-able so hopefully we can do it again! They are so full of love for each other and are extremely strong individuals - very inspiring.

So that evening was a creative SMA fundraising event through "Sips-n-Strokes" where we had a lesson in painting (my excuse for going up there). I have always wanted to paint, but haven't had the time or confidence to do so on my own so it was nice to have a guide and other people in the same boat who have never held a brush. We each got our own canvas and we were all going to paint the same design - a whimsical tree, aka the GoodenTree! It was funny because I can't paint abstract things very well - especially when you start with a blue sky and a brown tree and then ask me to paint the "grass" like a sunset. It was actually pretty hilarious - Jaime, Nurse Kim (Nora's Nurse who put on the fundraiser), her fiance' and I all had some good laughs. Jaime was a natural and all the "teachers" kept asking her if she's painted before and commented on how amazing her painting was... I don't know why they didn't ask me that, hahahaha. I had so much fun and it was a nice change to hang out with other people who truly understand SMA, what you go through daily, your emotions, etc. You can see Jaime's picture on the left of mine :) That is what it was "supposed" to look like - hahaha - lots of fun! Next time, I'll have to start with a purple sky, then a green tree and sunset grass...

This is me free-handing because I can't paint very well straight up and down on a vertical canvas... LOL. Like I said before, we were all very entertained the whole evening!

I enjoyed it so much that I am going to try to host one myself here in GA to raise money for SMA research! The Walk-n-roll that was supposed to happen in June has been postponed for a few months, so I think I might try having the Sips-n-Strokes in June or mid-July. I'll keep you posted! In the meantime, I am trying to get through my Nora withdraws... I am so ready to go back up and see her and the Goodens again!!! Below is Nora's Mom (Jaime), Nurse Kim in the middle, and me on the right... Thanks Nurse Kim for all you do! To see more pictures and to stay updated with Nora and the Gooden Family, please visit

This Saturday is the 10K (and 2K) for Skylar! Everyone there will be the first to view our awesome new logo and theme for Skylar and our goal to raise awareness. Next week, I hope to post pictures and the logo for all to see. If you feel left out and don't want to run in order to get a "Skylar Shirt", we hope to sell them to raise money for SMA as well :) Lots of stuff coming up so stay tuned. I'm trying to update more frequently, lol. Peace.


  1. Hey Ashley!

    I am so happy and excited for this day! We have all been blessed and I'm just in awe of Skylar's strength! It's all just so amazing to me! I sent Kyle a text message today to let him know that I was thinking about you guys. I really do wish I could be in Atlanta this weekend but since I can't, I will keep you guys in my heart while you run (or walk ;) ) I hope it all goes well and I can't wait to see what logo you have come up with for Skylar!!!

    Sending all my love to you guys!!! XOXO

  2. P.S. LOVE your painting! :)

  3. Ashley, I don't know you personally, but I feel like I do! My husband and I are in a small group with the Griggs, and we are both really excited to run Saturday. I'm looking forward to meeting you!

  4. We loved having you and welcome you back's tomorrow :-) Good luck with the run on Saturday, you will do awesome! I run better if I'm mad, just think about your struggles to get the Trilogy (grrr). Hugs to you and Miss Skylar. Hope to see you again soon <3

  5. Hey Ashley! I found out about your blog from the Trinity Moms Group. AND, I was the face painter at the Kate's Club race!! I wanted to propose an idea to you. I do something called Kitchens & Easels that is very similar to Sips and Strokes, but, I bring all the supplies to you--so you can have the event anywhere-and just for your group. And, I do custom designs for each of my groups, so we could do one that you choose to raise awareness--even your new Skylar project logo. It's just an idea-but my husband and I are new to Trinity-and would love to support you. You can check out my work at or on Facebook at The JSG Page. I hope we get to chat soon! ~Jennifer Smith Contino