Monday, September 27, 2010

Catch up and a thank you!

I want to do a catch up post on Gavin, and his progress; as well as the foundation. I also want to first say "thank you" for the award! This blog received an award for being in the top 30 of the 2010 Vision Impaired Blogs. Nominations came from my reader base, so thank you! This blog came in at number 15. Just when I think I am being negligent, the blog receives an award. I had no idea such an award was even given? This was quite a nice surprise! So thank you! I will get the award button up soon.

Let me start with the foundation. I have never been part of something more gratifying than this. I am not going to post away with links... they are all up on the side nav-bar of the blog. So please check it out when you get a moment. You can learn a little bit about Gavin, the foundation, and our mission.

I am working on the finishing touches of our alternative gift giving program, which will 100% benefit the Gavin R Stevens Foundation for the holidays. I am also working on the finishing touches of our online store. There are so many fun things, I can't wait to share. We are booked until the end of the year with events, and are working on another possible "Night without Light" dinner, as well as a VERY big event for GRSF, that may take place in the early months of next year. We are also working on our grant writing for corporate sponsorships for the hefty contributions to our foundation. I have never been busier! Before Gavin, I worked for a software company, and a mortgage company, in the e-commerce/networking world. I had many clients that I juggled from many different time zones, I brought work home with me (every night), and juggled all this with family. At times I worked every weekend, every evening, and at 3am when my clients needed me. What's my point? I thought I was busy then. I also loved my job! Although I miss aspects of giving your all to a career/job, I have never been more satisfied, gratified, and felt so fulfilled.

I, also, have NEVER been so busy! Have I mentioned that? :)

This has always been my calling, and now I understand it. I will sacrifice a nice paycheck for the sake of doing what my heart wants to do. Before this little guy came along, I had no idea what "that calling" was. Of course, the obvious, be a good mom, wife, enjoy life - all those goodies. But the depth of who I am, and what I am about. It makes all the sense in the world now! I have always participated, donated and been involved with charity work. Now, that effort is going towards my sons foundation. It's a little surreal.

All because one little boy came into the world, almost 2 years ago!

I cannot stress how much Gavin is thriving at Blind Children's Learning Center. He still does not want to leave his play time with Joan, when it's time to go home. He has accomplished SO very much in a short time. He was his Occupational Therapists success story for their newsletter. His confidence is increasing, as he explores... and she just understands him and his world. I am so excited each week to see what he is doing! We have been working on getting him to work more on the midline, which is typical for a blind toddler. Things typically get thrown out to the sides, especially for a totally blind child. He started throwing things in front of him, in a box. This was HUGE! I started getting misty eyed, his therapists started getting misty eyed. It was a moment I will always remember. He got it! On his own time, he got it. My biggest appreciation of Blind Children's Learning Center, is I am better to understand my son's world. I live my life with sight. He does not. I can try to understand, and am with him solely 24 hours a day. But the OT teaches me so much! I am so very grateful for her. :)

Right now we are working on proprioception, and additional vestibular stimulation. Labeling more direction (in front of, behind, left, right, etc.). He is fully walking on his own now! He has better balance, and is able to maneuver carefully, with minimal guidance. We are still working on his attention span with his braille books, but still not too interested. He is surrounded by braille, and he is starting to feel for it on new things introduced to him. I know that will come, like everything else has.

On the medical/genetics front, we are waiting for insurance to clear us. We are trying to get cleared for another test. I will keep you posted with that. That will be HUGE. Something we have been waiting patiently for. We also have our geneticist appointment at CHLA this month. For some reason, Gavin's glasses are not working out for him lately. We had a breather for a few months, where it seems like he did not touch them. Now, he hardly leaves them on, which just makes life a little more on the difficult side. Mornings and afternoons are awful, I leave 30 min early to drop off/pick up Landon from school, and the moment we leave our garage - he is poking! I can see him in the mirror, and it drives me to the looney bin. Hopefully this changes soon. By the end of the week, his eyes are starting to look bruised again. :(

Our Gavin's Groupies have their hands full! We have another mud run in a few weeks, and Gladiator challenge they are partcipating in. I can't wait to let you know the total runners. So far, the last two mud runs, we had over 430 runners! How incredibly awesome is that!

I am beyond words with Gavin's support. Thank you to everyone who participates, and those who are with us in spirit. Again, strength in numbers, and that cannot be more true!

I want to end with a quote that has really resignated with me as of late.

"Never doubt that a small group of thoughtful, committed people can change the world. Indeed it is the only thing that ever has." - Margaret Mead

Gavin's Groupies and the Gavin R Stevens Foundation has a group of thoughtful, committed people. I am proud to be on the journey with them, to change things, one life at a time.


  1. Amen! I am so honored to be a part of your circle. You are thanking us, and I am thanking YOU. Gavin is truly inspirational, and I think of him often when I see a beautiful sunset. =)

    Thank you for sharing a glimpse of his world, with us . You deserve the award girl!

    Someone asked me today about my braille hat. I hope you are ready for some more orders!

  2. Awesome post. I love the quote - I am going to use it!

    I have to stop stealing from you!! LOL.

    You do amazing work. I am always in awe of how much you are doing for Gavin and for LCA. Glad you are in our corner!

  3. Thanks Meghan - I was going to ask you, because I got 3 in today. lol! I just haven't had a chance to email you back.

    Jennifer - You are not stealing, silly lady! We are ALL on the same team, for the same goal. I'm so thankful you guys have our spirit to move forward with bringing change, and we can share our success! Ultimately, through the eyes of our children. :) xoxo

  4. I am a new reader. I look forward to reading more of your posts, and catching up on past ones. I found you on the vision source website, which drew interest because my nephew has RP. What a very credible thing you and your family are doing! We have a 2 year old son, and of course this draws at our heart.
    Alex M.

  5. Your blog was passed to me because we are adopting a 16 month old little boy diagnosed with Retinopathy of Prematurity (I think). He is beautiful and wondrous and amazing. It is our first adoption and first child with a special need. We have 5 bio girls - the youngest being the exact same age as our future son! I am learning so much from your blog and Gavin's blog! Thank you for sharing your life and experiences. We need all the help we can get so that we can advocate the best for our future little guy! He is not walking yet, but is crawling and rolling. He tilts his head back and to one side a lot. He also rubs at and taps his eyes - this sounds like some of the things I have read about with blindness in children. I look forward to learning from your family. Blessings to you! You can visit us if you like or have time! Matthew and Kelli Stever

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