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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.

Sunday, September 12, 2010

Slacker and slacker some more

I know I have mentioned before that I will keep this blog up to date. I will! One day.

The past 6 months have been a time of learning, growing and putting pieces together. As I have mentioned before we have started our Foundation. This was a long time coming, and I understand why. Not only is it a huge undertaking to start and to maintain, it is a lot of constant growth that we want to continue. We didn't want to just start the foundation for the sake of starting something. The foundation was started to make things easier, things we have already been doing for over 1.5 years. It is easier, but being in the beginning stages, we are still putting all the puzzle pieces together.

I am proud to say we had our very first golf tournament, the Gavin's Golf Classic, this past weekend. Let me tell you, when I took a moment in all the chaos, to stop and glance into the ballroom of almost 300 people - I was overcome with tears (now you know that was a given), satisfaction, and a feeling of accomplishment. I am so proud of our board members, and our golf committee, and my family and friends. We did it! We had over 220 golfers, a raffle that took over 1.5 hours to raffle everything off, as well as a silent auction. In between we had dinner, drinks, laughs, tears and ..... money raised!

I will take a moment and do an update with the tournament. We are still organizing pictures, and the like. I just wanted to again, post about the lack of posts lately, and my acknowledgement of it.

It's a bit surreal. My blog a year ago, was what I relied on to voice my feelings, and have an outlet for Gavin, and in general a little bit of everything. I never relied on this blog as a mommy blog, to post about my family a lot, it was started with Gavin, days after his diagnosis. Since the blog, we had Hands Down Monkey website, which is the home of Gavin's Groupies. We started the Facebook pages for GG and the GRSFoundation. We have twitter for each of those as well, and now we have the Gavin R Stevens Foundation website. I, personally, maintain each of these. When I get down on myself for not nurturing this blog, I think of what we are doing, and where my time goes now. It is now board meetings, sub committee meetings, presentations, event organizing, marketing and social media, and list goes on.

Figuring out the ebb and flow of life is essentially where I am right now. Trying to figure how to manage all of it with family. I will not let any of it get in the way of the heart of my family, and what we have within the walls of our home. We have not done an event because of this reason, and I am totally ok with it. It works for everyone!

My mind is constantly on the roam for new ideas that are essentially my babies that in my mind I nurture for months so I can try to get it just right. Seeing these ideas come to fruition is pretty awesome. Our foundation has been a platform for that, and I am so blessed to be surrounded by such good people who want to see the foundation succeed as well!

So, to say I am a slacker when it comes to this blog - I AM! But please don't just rely on this blog for our updates. To keep up to date with our events, news, and the like please visit Hands Down Monkey or Gavin R Stevens Foundation, or find us on Facebook for Gavin's Groupies, GRSFoundation and my latest baby, The Braille Effect. It is so nice to see ideas come together, it's a mental checklist for me and weights lifted (feels like 100 pounds of 'em), when I finally get some time to put it all together. Phew!

Slacker will be back soon to post an update on the Golf Tournament, I promise! I have had people ask me about our Newsletter, and you can sign up at www.handsdownmonkey.com, and we will be sending it from the foundation site soon enough. In the mean time you can sign up there and be included in our next newsletter!

Thank you for still coming here to check out the blog. :) I see your visits and makes me happy.

Until next time....

But don't hold your breath. :)

xo

Sunday, September 5, 2010

The Braille Effect

Hope everyone is enjoying Labor Day weekend. We are, but have been stuck inside the house. Landon has been sick, and so our fun has been indoors. We made one trip for yogurt and to pick up last minute school supplies for him (he starts 1st grade on Tuesday). He was wiped out... but made it through the shopping trip. It was nice to get out, if even for 20 minutes.

Gavin has been figuring out his boundaries in the house, and with his walking. Now that he is not as wobbly on his feet, he is putting his hands out more, and concentrating better. Phew! I'm glad the "I'm just gonna run or walk wherever I want and not use my hands" phase is somewhat over. He's getting better, and it's so fun to see his progress! I will post some fun pictures soon.

Since we have been stuck indoors, I finally took advantage of my time here stuck at home. Besides the normal cleaning, and some TLC for my sick one, I finally put together my braille shirts. I have been wanting to do these for months now. I actually did a while ago, but didn't like the stones I used, and I neglected it for some time. I finally did some research, and found good stones for the adult shirts, and the lead-free pearlstuds for the children and babies. They came out great, but my camera (I hate that thing), does not do it justice. Needless to say, I put together a PayPal account, a Facebook page, as well as a blog for "The Braille Effect". I hope you check it out. I will be adding more as time goes on, as well as some greeting cards I am working on, and some more fun attire. I will attach the one semi-decent picture I captured, but it 's moreso so you can see what the shirt and tank looks like.

Please take a look and let me know if there is anything you would like me to "braille embellish" for you! My hope is to help promote braille literacy as well as raise money for the Gavin R Stevens Foundation, through The Braille Effect.

Enjoy!