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Wednesday, December 1, 2010

Gavin’s Groupies Gives Back

Mindi Mueller, a board member of the Gavin R Stevens Foundation, and also dear friend of the Stevens Family had a life changing experience a few weeks ago.  This really hit home for her, and we wanted to share.  It also inspired her to want to do something, and of course, we jumped on board.

In Nov. 2009, the Freidrich family suffered a parent's worst nightmare.  Their 4 yr old son, Jeremy, had a horrible accident right in their backyard.  Since the accident, over a year ago, he has not left the hospital, and his parents provide around the clock watch over their precious son.  They also have other children.  You can read about Jeremy’s story, and see some pictures here of his beautiful face here:

www.prayforjeremy.org

This really hit home for Mindi.  She was asked by the family to come to the hospital and provide a hair cut for Jeremy for his 5th birthday.  Mindi knew this would be difficult, but did not hesitate to help.  Jeremy’s family is inspired by the support that Gavin has received, and all the Gavin’s Groupies that rally in support of our cause. This is hard for me to digest, as you can probably understand.  I thank God, literally, for the health and safety of my children.  These parents are inspired by us, and Gavin is fine.  Their child is in the hospital with a brain injury.  I am completely humbled and touched.

Mindi took a Gavin’s Groupies shirt for Jeremy, a wristband, and some shirts/wristbands for the family.  Jeremy had the Gavin’s Groupies shirt draped on him, as Mindi cut his hair, and gave him a very handsome hair cut, just in time for his birthday!

Further exploring the hospital facility, Mindi learned of a “Christmas Wish List” that the children of the hospital want/need.  She approached me, and we were already thinking the same thought.  “Let’s get our friends and family to help support these children during the holidays.”  So we are!

I could not think of a greater project for our friends, family, Groupies, etc.  If you take a peek at the wish list, it is as basic as lotion and hair supplies.  Landon and I, since he was born, and not even aware of what was happening really, would buy gifts for the children at the local orphanage.  We save up his change all year long, Troy and I match it, and we go shopping.  It’s the best feeling, and something I feel the need to instill in my children – since we are so blessed.  This year we will focus our attention on the needs at Newport Specialty Hospital in Tustin, specifically the children.  This hospital provides care for severe injury and illness. 

We are asking for your help.  We will take care of the gift wrapping, and you can just drop the gift off to Mindi’s house, and we will make a trip to deliver the gifts to the hospital.  Feel free to join us for the drop off if you wish.  We would like all gifts by Sunday, December 19th.

It is quite humbling.  Especially when I see the list from my 6 yr old son, that includes the latest and greatest in games and toys.  These children just need the basics to make their life a little more… comfortable. I cannot stop thinking of Jeremy, his family, and the other children who lay in the hospital beds, day in and day out.  I have a hard time talking about it, without fighting tears.  I am touched by the family’s strength, my heart goes out to the other siblings, whose life is also changed.  I cannot fathom the thought of that being my child, and am terrified with the thought that… Jeremy could be anybody’s child.  It was a freak accident, and it can happen to one of my kids.

I hope you are inspired to help with one child, and just one gift.  The age range is from 6 months to 21 years.  I can email you the list.  The list in a PDF file will be up on our website on Thursday 12/2.

I would like to personally thank Mindi for having the heart that she does.  Helping other people, is the basis of who she is, and is why we love her so much.  Thank you Mindi, for letting us be a part of this.

Will you help us with our gifts for these children?  You will help to provide some comfort and love to these children, who do not have a choice, but to be in the hospital.

We hope to FILL the hospital with gifts!  With your help, we can.

"Blessed are those who can give without remembering and take without forgetting."
Elizabeth Bibesco

Tuesday, November 30, 2010

BCLC series – bilateral coordination

Sorry for the lack of posts in the BCLC series.  I have video and photos to share, just can’t find the time!  Story of my life!

I remember when we introduced Gavin to the peanut roll, or even the exercise ball, he wanted nothing – I mean nothing to do with it.  He didn’t want to hear it, hear about it, or touch it.

Almost 9 months later, he is playing with it.  Yes, it’s been a long haul with this, but the best part is, he is using BOTH his hands to hit the ball.  He has always used one hand, and the other hand was not in sync.  He would alternate, and use the other hand, then the other was not in sync.  We tried everything to get him to use both hands simultaneously.  We are finally getting there! 

Many of his toys encourage two hand manipulation, and we are finally there.  He is starting to use both hands in mid-line, and learning to work with them together.  Bilateral coordination is huge, and in the video you can see him using both his hands simultaneously to “pat the drum (ball)”.  I got it on video!  He refused here and there, but his therapist is so great, she helped to push him through.

Today was also another first.  He walked down a 3 foot ramp, while holding one hand on to the wall, and the other holding his therapists hand.  It took some convincing, and a very scared look on his face (I just wanted to snatch him and hug him).  But I didn’t, I kept the tears in because I knew how scared he was.  His face was terrified, but he didn’t cry – just whimpered.  He was unaware if he was safe, or if he would fall – but encouraging words from his therapists, and mommy, led him down the ramp!

I was so proud of him.  Even more important, he was proud of himself, which is a direct reflection of his self confidence, and him making progress to one day walking tall in this sighted world!

Wednesday, November 24, 2010

Thankful life lessons

I’m thankful Reggie wrote a blog post – so all I have to do is link!  LOL 

Really, I am thankful for what this “fearless foursome” did for us on Oct. 16.  We participate in the Irvine Lake Mud Run, a 5k of obstacles done in the MUD.  Reggie wrote a very compelling, blog post about his experience, and things he learned. 

I am grateful they stepped into Gavin’s world for this mud run.  Two runners ran “blind”, and two guides, guided them.  The entire race!  In mud!  Through obstacles!

You get the picture. 

Now you can read all about it.  Thanks again, Reggie.  You have been a blessing to our family, and I value your friendship and your courage to take these steps with Heather the past mud run.  You can also view more awesome photos here.

I’m most thankful for my children’s laughter and health this Thanksgiving.  Our problems bear no match, to the many children, and families, who are fighting for their health.  I have a new outlook, after our many trips to Children’s Hospital.  My heart aches for those who do not have their children home with them during the holidays.

Happy Thanksgiving! 

Bless you all.

Wednesday, November 17, 2010

Gratitude

Who does not thank for little, will not thank for much. ~ Proverb

I feel like my life has been split into two different lives. 

Before Gavin was born, and after Gavin was born. 

It’s almost like before kids.  Everyone has their “before kids” life, and then of course, when the babies come along, life changes.  As it should.

The same concept holds true for Gavin.  I have, in this blog, written about those feelings, about feeling changed.  I think it is different for me, because Gavin is my second child.  I went through all the first experiences of being a mother, a changed person, with Landon.  When Gavin came along, I felt the same love and amazement that I did when I held my first baby, for the very first time.  I also felt like the “seasoned parent” as I’m sure some of us do, with our second, third or tenth child.  Gavin came into our lives, when we were already parents.  Then the reality hits, that you are not seasoned at anything!

When we found out about Gavin’s diagnosis, we wanted to challenge ourselves, and LCA.  We took on the attitude, that we own Gavin’s blindness.  If we as a family, internally set ourselves with the attitude that we are “ok”, then we will be.  Bottom line.  Yes, we can feel all the emotions that still bring us to tears, but taking ownership of what his diagnosis was, has greatly impacted our outward attitude.  To me, it has helped us with the process of becoming an activist family with LCA.

Before Gavin was born, I thought I understood compassion, kindness and genuineness.  I thought I was compassionate, kind and genuine, and held these values of importance within my own family.

Before Gavin, I thought I was an appreciative, humble person.  I tried to help others, volunteer in various causes – and even give monetarily.  Not much, but I felt as if I was doing my part. 

Before Gavin, I thought I knew what it meant to be a loyal friend, a solid family member, and a dedicated citizen.  I felt like I was there when people needed me, and listened when they needed me, and gave of myself… when they needed me.

Since Gavin has been born, I have learned so much more about kindness and compassion, and it exceeds more than what I thought was possible.  My family is part of the most incredible, truly compassionate individuals and community that I could ask for, and honestly it’s hard to truly take in at times! 

Now, I get it.

I am now fully understanding the power of kindness.  I am now setting my bar higher for what I do for others.  I am changing my personal goals of becoming a better person.

The past few weeks have been overwhelming to say the very least.  When people offer their help and support, I become a sissy!  I should be used to it by now.  But there are so many things happening to support our foundation, and support the cause for helping to find a cure for LCA.  I can barely keep up, we are thinking we need to lease an office for the foundation, I have so many post it notes of “to do’s” it’s unreal.  We are exceeding our pace, by far, in which we set for our goals – and all within a few months.  I am just trying to keep up, I don’t know where to start!  I am staying with my word of not talking much about the foundation here on Gavin’s blog, because we have a website, and you can keep up with our news there!  But I do have to leave with a few things that are going on, and maybe you would like to be a part of.

  • We became the beneficiary of a golf tournament (an extravagant tournament)
  • We became the beneficiary of the Irvine Lake Mud Run for the entire year 2011
  • We will be riding bikes ACROSS THE UNITED STATES in 2012
  • We had 3 concurrent fundraisers this past weekend

… and I will stop with that.  It just goes to show how much people are willing to support a local cause.  There are many fundraising events in the works, that others are doing for us (and that’s just what I know of).  There are a few other “beneficiary” possibilities that may also happen. Now maybe you can see why I could not get through 2 interviews and one speech the past week, without bawling like a baby (I’m glad Troy is stronger, so I can pass the mic to him).  I am very emotional.  This is all for Gavin, and all the other LCA families – and I am deeply touched.

Stay tuned for yet another website for the Tour de Sight in 2012.  We are working on it now, and are also working on our bike route.  We want to raise $100,000, and cannot do it without your help.  Keep posted on Gavin’s Foundation page for all upcoming info.  I will not be sharing too much about it here, but also sign up for our newsletter. I also have media kits I can mail out to you, that includes info about our Tour de Sight 2012.  You can email me at jen(at)gavinsfoundation(dot)(org) to request a media packet.  This would be an incredible marketing opportunity for your business, as we hope to have national coverage (working with NBC), as well as a media company with us to document the whole tour.

Gratitude.  A simple, yet, very meaningful word.  It’s something I am learning more about, through our Gavin’s Groupies.  I am a little loss for words, with what I feel in my heart.  I just know that Gavin’s Groupies are shaping me, and molding me to push harder and work better.  You are incredibly awesome, and I love the family that we have all become.

It is because of you, and your willingness to help Gavin, and the LCA cause, that is going to find us a cure.  I have a heart full of gratitude for Gavin’s Groupies, and I could not ask to be a part of a more dynamic group of people!

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Thank you all, for loving my son!

PS – We will be needing about 600 people at an event next April!  If you have wanted to volunteer, (or volunteer again), we will be needing you :)  Will keep you all posted.

Monday, November 1, 2010

BCLC series – Jumping and proprioception

We talk often about proprioception at Blind Children’s Learning Center.  It is such an important piece to Gavin’s awareness as he gets older.  Proprioception doesn’t come from one specific organ, but rather from the entire nervous system as a whole.   Its input comes from sensory receptors – nerves from inside the body rather that on the surface.  Visually impaired or blind individuals don’t have a good sense of their space perception.  This is very common.  It’s basically understanding their place in space.  This can be difficult without vision.  Proprioception is the sense of the orientation of one’s limbs in space.  Without proprioception, you wouldn’t be able to type at the keyboard and look at the screen – you would have to focus on your fingers to make sure they are doing what you want.  If you happen to be reading while eating, you would have to stop every time you would want to put food in your mouth, to judge the position and orientation of your hands.

The sense of position and movement of the limbs and the sense of muscular tension. The awareness of the orientation of the body in space and the direction, extent, and rate of movement of the limbs depend in part upon information derived from sensory receptors in the joints, tendons, and muscles. Information from these receptors, called proprioceptors, is normally integrated with that arising from vestibular receptors (which signal gravitational acceleration and changes in velocity of movements of the head), as well as from visual, auditory, and tactile receptors. Sensory information from certain proprioceptors, particularly those in muscles and tendons, need not reach consciousness, but can be used by the motor system as feedback to guide postural adjustments and control of well-practiced or semiautomatic movements such as those involved in walking.

As you can tell, there is a lot going on that we don’t even realize!  When you remove a sense, such as vision, spending time in certain areas can be crucial to development, and to reach a certain level of awareness.  Getting Gavin to understand his position in space, is something we work on, constantly.

Gavin loves to jump!  It is satisfying the vestibular stimulation that I often talk about, as well as providing him proprioception awareness.  Of course jumping to a cute little song, makes it even more fun.  You can hear his therapist towards the end talk about the importance of proprioception in relation to his joints.

 

BCLC series – bucket swing

Gavin has a bucket swing at home.  He is in the swing at least two times a day, it is part of his “therapy”, and allows for him to get the much needed vestibular input that his body craves.  Gavin doesn’t really prefer the swings at the park, no matter how long we have him feel the swing.  We don’t just plop him in anything unfamiliar.  How scary would that be?  Even though minutes of “feeling” the swing, he never takes to them very well.  The same can be said for the same exact bucket swing at Blind Children’s Learning Center.

It has taken us about 6 weeks to get Gavin to actually swing in the bucket swing at BCLC.  Even though he loves his swing at home, it’s the same exact swing, and he is in it for up to an hour a day!  It’s another reminder that even though he may be familiar with something in his own setting, the same cannot be said in unfamiliar territory. On our part it just takes patience, and working through.  Like his therapist said, when he is put in a swing, he has no idea if he is 2 inches off the ground or 20 feet off the ground. 

I was so proud of this moment!  Each week we worked with the swing, just for little portions of time.  Nothing elaborate, but it is all part of the process.  That is what I have learned over the course of Gavin’s life, which is so different from Landon.  I have one son, who is sighted, and one who is totally blind.  It’s two completely different worlds!  Gavin takes a lot of time to get used to something – which I totally understand.  When he finally allowed his therapist to put him in the swing, we were elated!  We went from not even wanting to touch the swing, to touching the swing, to touching the ropes, to moving the swing, to pushing the swing, to singing while pushing the swing (which is a great indication he is enjoying himself) – to swinging in the swing!

Such a small task for us sighted individuals, but it took a lot of work and trust!

After we accomplished the bucket swing, we tried the rectangle swing.  Of course, the same scenario ensued with this swing.  It took him the same time to become comfortable, but I believe the self confidence and knowing he is in a safe setting, and that his therapist would make sure to help him, gave him the courage to sit on the rectangle swing, and GET OFF on his own!  Getting off of the swing, by his own will, was just as important as him mastering swinging in the swing.

I’m so proud of him.

Monday, October 25, 2010

BCLC – Gavin’s therapy progress with velcro squares

I received permission from Gavin’s OT (Occupational Therapist) at Blind Children’s Learning Center, to document photo/video of his sessions with her. I want to be able to look back at his progress. There are so many times things “click”, and I see it in his expression, I see it in his self confidence. I see it in his sweet smile!

Not only is he making phenomenal progress, he is having fun. His OT, Joan, pushes him, yet respects him. If he says ‘no’, she tries once with him, and then they are all done. Typically the ‘no’ response from him, is because he is uncertain. Usually after she shows him, he enjoys it, and wants to do it again.

I will be posting pictures and video of his his weekly progress. I may be late, because I am just getting to post from his therapy session 2 weeks ago! But I will post about it each week. Ok, fine – I will try my best to post it each week.

This particular session we worked on his midline. Midline basically is the median plane of the body – basically working directly in front of him. Like many blind children, Gavin would throw objects he had in his hands. When he is all done, he throws them to the side/behind him. Getting his two hands to work simultaneously is something we have been working on for a long time. It will increase his strength for good cane use/control, as well as continue to work on the midline.

This particular video shows Gavin working with two velcro squares. To a blind child, the velcro squares really don’t have any meaning. We had tried the squares (along with other pull apart toys) for weeks now. This was the first time, and I have it on video, that he actually worked at trying to pull them apart! He did not get frustrated that the first time attempt was not successful, he continued to try …and we pulled them apart! He took it a step further, and he put the squares together, and pulled them apart again. You can see from our reaction, we were elated. It’s these small things that we work on with him day in and day out, but not in such a way to where it is frustrating for him, or where his self confidence is hindered.

Working on midline, is huge! Until he works more with midline, and using his hands in front of him, we can’t move to him brushing his teeth, feeding himself with a spoon, etc. We are getting there. Baby steps… You can see when he was done, they were thrown to the side – but not until after he pulled them apart.

Stay tuned for more video/photos from his sessions at BCLC.

Tuesday, October 12, 2010

Faker and Peaches

Ok, from Amazing Grace extreme to this! Here is the "video". Please keep in mind, we did not teach this to him. Yes, laughing eggs him on (how can you not laugh), but no harsh comments please! It's in innocent fun, but is so funny - and you asked for it!

This started with Gavin pretending to cough when he wants attention. It's been a joke in the household for over a year, and Troy or I would always say "you're such a faker!", or "you're so dramatic like your brother!". Well.... now, this is what he says back to us.

DISCLAIMER: Gavin says bad words while trying to say something else. Don't listen if you are easily offended! You've been warned, so just skip down to hear the innocent Amazing Grace. :)

Monday, October 11, 2010

Gavin singing Amazing Grace

... the last part gets me everytime. I will have to try to get video of him finishing the entire song -- he just loves the cheering!

"I once was lost, but now am found, was blind, but now I see."

Sunday, October 10, 2010

Reflections

Gavin’s second birthday has come and gone.

WOW.

Where has time gone, and why hasn’t anyone figured out how to make that pause button for life? Reflecting to the past 2 years, I think we are finally getting to a place where there is a little less sadness. I’ve touched on this a little here and there. Our activism has helped to work through some of those emotions, and even face them when you do not want to (through interviews, speeches and the like). We have turned into walking fundraisers, but it is not all who we are – and the same with this blog. I have been offered some exciting opportunities, and I will share when I can, but I am trying to find a way to fit it all in?

This blog post has no real direction, so bare with me.

My time constraint is the biggest struggle right now. With the foundation moving to a full time job, I cannot neglect the basis of where this all started. Things have happened so quickly (again, where is that pause button), that it’s nice to have moments where Gavins birthday allows me to reflect. We have a life before Gavin, and a life after. The basis the same, but the direction, somewhat different.

Foundation work is a full time job for me now (not paid people, we’re all volunteer). The best non-paid job I have ever experienced! No salary could make me want to do anything different right now in my life. But finding that balance is key, with everything! Family, friends, business, etc.. We have found, we are saying NO better. When we first started fundraising, we jumped at every opportunity, now we are getting to a point where we don’t feel like we need to. We are taking a moment to breathe, and stay consistent with our belief when we started the foundation, that we will not do a function if it interferes with all of the family being together. Landon is involved in sports, and his interests are just as important as Gavin’s, or ours. We have actually opted out of a possibility of a foundation function because Landon had a game, etc. This weekend we skipped a fundraiser, etc. We feel good about it though! We are getting a little bit of control and focus on the center of us, which is our family. We’ve never lost sight, it’s just the nature of the beast, when an opportunity is given to you, you jump!

I am so grateful for our family and friends taking on their own fundraising, at work, school and in their community. I cannot thank you enough!

Upon reflecting on this 2 year milestone, which is Gavin’s birthday… we are being wiser with our choices and I am proud that we are. Not that there are regrets, it’s just relevant to understand where it could be getting crazy at times. To get back to the post, and my reason for it… I will pop in with foundation posts, but the substance of the blog will be the relevance of why I started this, and that is Gavin! It’s nice to have this blog NOT be about our foundation in a way. I know that sounds weird, but it is refreshing. It’s a way for me to compartmentalize things – and I like it that way.

We have all of our websites that is foundation based. You can find all of them in nav bars. I want to try to keep the blog, back to Gavin, our journey and his progress. Of course, I will throw things in here about GRSF, but for the most part, it will not be.

Oh… to keep you all back on track with our upcoming events, you know we have our Facebook pages, Gavin’s Groupies and the Gavin R Stevens Foundation. We also have our mailing list, that I know many of you are on and I AM SO SORRY for the lack of monthly newsletters. We will be utilizing that tool again to get back on track with keeping everyone up to date with us. You can sign up on Hands Down Monkey, which is where this all started, and the home of Gavin’s Groupies! We have some exciting info coming on upcoming events, as well as our online stores. So, make sure you are signed up. We will NOT share email addresses, nor will we clutter your inbox. Promise!

These momentous milestones are a good time to reflect, and it has given me a chance to reorganize some things. Life can get so busy, it is easy to not reflect, because you are so busy. I am going to try to reflect more, it’s refreshing. :)

I’m going to leave you with Gavin’s FAVORITE toy right now.. the “round and round” as he calls it. I think I have mentioned it, but he LOVES it! It gives him a lot of confidence too, as he feels good about himself when he can climb on or off, at his will, and he has the control to manipulate the speed. He can go “round and round” as fast or as slow as he likes, or he can just spin it and also manipulate the speed that way. This toy came highly recommended to me from a fellow LCA mommy, back when Gavin was just a few months old. Just now is he really liking it, or loving it. I highly recommend it as well, if you are looking for a new toy to fulfill sensory motor development, as well as vestibular stimulation.

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This is his other favorite toy right now. His brother. His big brother who is on constant look out for his safety! Landon’s nerves are on edge with Gavin learning to walk, I have had to talk to him about allowing Gavin to fall (of course not in harms way) sometimes, because that is how he learns. He is such an AWESOME brother to him! They are both so lucky to have one another.

Just keep in mind, 2 seconds after I snapped this picture, Gavin was getting mad at Landon for “helping” him. Landon gets mad because he wants to help him. It’s this dynamic of support, comfort and independence. I love watching it grow, and enjoying each level that this brotherhood brings.

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Reflection. I will be doing more of it, and looking back at the importance. I’m grateful for this blog to give me an avenue to express it, if I have zero readers or a million. It’s a place to personally reflect. I am so glad I have this to see the beginning of our journey with Gavin, and see where we have become. Not just with our activism, but more importantly than anything, our acceptance and joy with what God has given us.

I hope you find times to reflect. It’s so easy not to, but can bring such a firm grounding of where you are when you truly know where you have been!

“Follow effective action with quiet reflection. From the quiet reflection will come even more effective action.”

Wednesday, October 6, 2010

Words from wobbly toddlers

***Disclaimer ***
No I do not approve of foul language in my home. Please do not read if easily offended.

Don't say I didn't warn you! LOL




Toddler times. These have to be my favorite times. The unstable, getting better at walking toddler times. Also, the pronounciation (or lack of) certain sounds when talking, times.

Don't know what I mean? Let me explain.

*Gavin fake coughing for attention when you do not talk to him *
Me: "Gavin, are you coughing, you faker!"
Gavin: "I coughing you f**ker."

*Gavin getting ready to eat some fruit*
Me: "Gavin, would you like some peaches."
Gavin: "I want some bi***es."

I know this is HORRIBLE. But you gotta know it is funny! These words couldn't possibly come from the mouth of this angel, right?

Riiiiight.
PS - I DO have video -- do I dare share??
Eeeeek!

A messy thank you!

You guys are awesome!

I received so many wonderful wishes for our little boy, on his birthday. It reminds me how much it means to people, when you know you are thought of. My inbox was inundated with sweet messages from people I know, and only know through the readers of the blog, or Facebook friends on our pages for Gavin. Regardless, they were EACH read to him. I did it in spurts, but he felt the love - and kept singing "Happy Birthday" every time I read it. You all put a smile on his face, as well as mine. :)

We did a low key immediate family dinner. We opted to not do a big party, like we do each year for both the kids. Honestly, Gavin wouldn't have fun. Too many people, too much noise, and he gets antsy, and is not comfortable. I figured I would make his favorite, homemade spaghetti dinner.

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Two full servings later, I think he liked it.

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Caprese salad is the best!

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Grandma’s and aunties are always around to do the clean up!

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Homemade Monkey cards are also the best.

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He didn’t care for the balloons, so they stayed away.

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But the ice cream cake, that’s a different story.

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Just don’t sing too loud!

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My cousin shipped us some really cute Monkey decorations!

Thanks Jessica. :)

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He loves his “copuuuder” (computer).

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He also loves hanging out at night listening to music with dad.

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I would love to be in more pictures with my boys, but this is as good as it’s going to get after a long day, especially when you’re the photographer.

I couldn’t have asked for a better birthday for my big boy!

Friday, October 1, 2010

A Happy 2nd Birthday to my boy!

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A scheduled C-section allowed me to pick his birthday. I am a lover of October and Fall. When I knew it was an option to have my baby in this month, I sacrificed some very uncomfortable last few days of pregnancy to make it happen!

Gavin was born healthy, and off I was wheeled away for about 8 hours to get my vitals under control. I just wanted to hold my little boy! We did not want to know his gender, and I will always cherish that intimate moment between Troy, Gavin and I. The moment we knew we had another son, and Landon, had a baby brother.

My pregnancy was abnormal. I was on bed rest. We thought we lost Gavin at about 9-10 weeks, but he held on. It was a miracle to me when I found out, in an unfamiliar hospital, there was still a beating heart. The moment when the ER doctor explained to me I was still pregnant, was shocking. The words following "... but this is probably the start of a miscarriage..." is all I heard. We left the hospital (we were temporarily living in Las Vegas at the time), and my OB demanded to Troy that we come home. We packed the car, and left 2 hours later. The dreaded drive home...

Hours passed, and our baby held on.
Days passed, and our baby held on.
Months passed.... and our baby held on.

The subchorionic hematoma that caused us to think we lost Gavin initially was not healing. To begin with it was somewhat large, and not getting better. We were approaching 6 months, and I was faced with the reality of a possible still born. Something my mind could not even grasp, and at the time, I couldn't really tell anyone. I couldn't even really relay those words.

My baby held on. But my mind was trying.

The anticipated words that "everything will be ok" in last month of pregnancy was music to my ears. Hindsight, that difficult pregnancy was almost a foreshadowing of events to come. Shortly after Gavin's birth, we were again given news. News that he was blind, and there was no cure. Gavin had it together, he was fine. My mind was trying, and I had a difficult time conveying in words to others what was going on. Hence this blog. This was my way to reach those around me, at a time when I couldn't even open my mouth without sobbing.

Gavin was fine. And I was trying to be.

Days went by, months went by, and now 2 years have gone by.

Gavin is fine. And so am I.

This little ball of stubbornness brought the world around him a shining light, even through his world of darkness. I treasure him, I value him, and I love him.

Happy Birthday to my precious little boy! You are perfect, and stunning. But we will continue what we are doing, to make sure you have an option.

Through you, and for you, we will continue the fight!

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!

Saturday, August 28, 2010

Gavin's Groupies photo video

In case you're wondering why I chose this song. It is Gavin's favorite. He loves the piano in this song... so while you visually enjoy the video, he is also enjoying it. :)

Monday, August 16, 2010

LCA TEAM fundraising website

At the LCA Conference, Jennifer Pletcher and I (her daughter Finley, has LCA) were chatting about fundraising. Jennifer and I have been communicating back and forth the past year or so, I'm still bummed they live so far from us. We think a lot alike, and have the same goals with fundraising, etc. I decided to form a website to share our fundraising ideas that we have done in the past, that has worked for us. I also hope others can share their LCA fundraising ideas with us, so that we can post the ideas on the website. I am always looking for a fun, different way to draw funds in.

My family and I find a balance to be able to raise money through fundraising AND also focus on Gavin, and give him the best that is possible. Our fundraising events have pulled so many people together, our family has a blast volunteering, and helping. It's encouraging to know you are trying to just do something to help the situation, which has caused my son to be blind.

Please feel free to share and email us feedback, or even send us your personal story, so we can share it. EVERY DOLLAR counts! It doesn't matter who you are rasing money for FFB, FFR, or whatever you choose. We just want to hear about it. :)

Please beware, I am still working on the "prettiness" of the site. I haven't had much time to get it looking the way I want it to, but the content is there.

Enjoy!
LCA TEAM Fundraising

Wednesday, August 11, 2010

Blind Children's Learning Center

Yesterday was Gavin's first day at BCLC. BCLC is in Santa Ana, it's a little drive for us - but worth it. He will be going once a week for occupational therapy. This has been a long time coming, and I wish he could have started there sooner, but some things are out of my control. Needless to say, I am so excited for him! Yesterday he did great. Of course with a new facility, new people, it took him a while to get used to. He was hesitant and started with the death grip around my neck with two hands, 10 minutes later we were down to one hand (while the other hand was playing), and another few minutes later, he was on the ground playing. I was able to step back a little. I brought Landon with us, in hopes that it would help him to be more comfortable, and it worked. Landon helped Gavin, and another few minutes later, all three (including our new therapist) were all playing, laughing, and singing.

Adorable!

We stuck with toys that he is used to, to bring the comfort level to a good point. We did not want to introduce anything that would scare him. Yesterday was a day of exploration for him, and one day down in attempts to get him comfortable there, by having it be full of fun. They played with the balls, drums, and I could not peel him from the dizzy disc. We are going to have to buy this for him, at home. He did not like sitting on it (yet), rather he spun it around and around. He liked the sound, and was easily manipulated by his small hands, and didn't take a lot of strength. Landon got on it, and we made a game out of Gavin spinning his brother. ONE - TWO - THREE - SPIN. We said that about a hundred times. It took me another 10 mintues to break him away from this. It is looking like he is left handed dominance so far, let's see how that pans out.

I will try to do a post every week, with new things Gavin is doing at therapy, so maybe you guys out there can learn something new, that I am learning along with him. His OT is wonderful, she knows exactly how to interact with Gavin, ways to approach him that are not scary, and she instantly knows when to pull back when he is not receptive. Her key is to give him the self confidence he will need to continue to successfully explore his world. I cannot tell you how proud and excited I am for him, for this new path. I have a feeling she will take Gavin to the next level of development, through play and self confidence. I also am looking forward to the knowlege I will gain, so I can continue these techniques at home.

He is still receiving home services from Braille Institute, his early intervention teacher, Vision Impairment teacher, and soon O&M (Orientation and Mobility). BCLC we actually travel to once a week, and it's pretty nice to have him get services out of his home, and a new environment (for both of us).

As for Gavin and Landon, they are starting to become closer buds. With Gavin getting older, they can interact a lot more, wrestle, and give mom a heart attack. Guess that comes with the territory of boys. Landon is so patient, and helps so much with Gavin, as far as guiding him and making sure he is safe. They have had a lot of fun this summer. I look forward to watching the relationship develop!

Monday, August 2, 2010

Gene? What gene?

This past weekend was the LCA Conference. What an experience. Not just with gaining knowledge with the medical information presented. The connection to the other families, is very hard to describe. Pretty much every person attending had a child who was blind/visually impaired due to LCA. There were over 100 families (I believe) that attended. There is an unspoken connection you can feel amongst everyone. We have all probably felt 'something was wrong', we have all been given the diagnosis about our child. We have all heard those words there is no cure, and I am sure we have all experienced the roller coaster of emotions that come with that diagnois.

We met with some pretty wonderful people. Those that I have been communicating with, but have not met yet. I will do a post on that later. I'm sure they will be our life long friends. :)

In addition to all this great news, we came to the conference not knowing which gene has caused Gavin's blindness. There are 15 known genes that cause the LCA disease. We have been waiting since Dec. '09, which is when we submitted his blood work to the Carver Lab at the University of Iowa. The Carver Lab is where Dr. Stone is doing all the research, to find which gene is causing LCA in the individuals affected. Typically, it takes a few months. Out of those 15 genes, they are really focusing efforts on the RPE65 gene. That is the gene they have actually have success via gene therapy. Corey Haas, the little boy I wrote about before, has the RPE65 gene AND was the youngest in the world to receive gene therapy. His vision has improved in the eye in which was treated. It's a fascinating story, and so inspiring, and I could have hugged that family this entire weekend. Like Dr. Bennett said, Corey, and the Haas family, are the true pioneers.

Back to Gavin's gene. We had a chance to meet with Dr. Stone this weekend. I had a few questions for him (what a kind man). He ended up making a phone call to the lab, and we ended up finding out from Dr. Stone, that Gavin's gene is one of the unidentified genes. Which means, for those genes that they know about, Gavins is NOT one of them. For an odd reason, I had a funny feeling this was the case. I told our family members that I think Gavin's gene is not one that has been identified, or at least that would be our answer from Carver Lab. And so it is.

This means a few things. I will divulge later when I can. But for now, we are already doing some more research on getting an answer, our blood work will be moved to a second phase of testing at the lab. This can take months. Of course I am anxious to find out what gene he has, so we can move towards the funding of the researchers working on that specific gene. We can't do that without knowing the gene. There are some people who don't sense our urgency, and that is ok. But with every discovery of each gene, it can potentially blow open the doors for all the others. Hence, the name Project 3000, that Dr. Stone heads. Their philosophy is to find all 3,000 people in the country who have LCA, so they can test their gene. I may be losing you, I enjoy the medical, gene information. I can go on and on, but will save that for later. In an ideal world, we would have loved to have been given a gene. I know at some point, ALL genes will be identified. But for now, only about 80% are known, which is about 15 genes. Gavin's gene is not one of those known. This means we work harder, better and more efficient with our fund raising, so when the time does come, we are ready. Ready to fund the researchers and scientists.

I have to admit, although I had a feeling Gavin's gene would not be identified yet, it was still a little difficult to hear. Either way, it doesn't change things today. Our objective is still the same, and we will continue the march ahead with hope, persistence and above all, optimism. I have hopes that through our fundraising, and raising awareness, we will not just be trying to help Gavin. We will be helping all those affected!

Friday, July 23, 2010

1st Annual Gavin's Golf Classic

PHEW! Is about what describes this house. It's a good craziness, but a crazy none the less. We are marching full steam ahead with our foundation. I am thrilled to be able to do fundraising, and know this money will directly go towards a great cause. Money is needed to continue the research for a cure for Gavin, and for so many others. Let it be known (again)... I honestly feel Gavin is part of a much bigger picture. If it is his plan to live without vision (and a full, happy life at that), we have accepted that. But... BUT I will NOT let this disease go unknown. It is such a rare disease, and we want to raise awareness! Through Gavin we will raise awareness and money to help others who live with Leber's, and fight for their sight.

With that being said, I introduce you to our first annual Gavin's Golf Classic. This is our second golf tournament, but our very first one for the Foundation! I am ecstatic! A golf tournament takes time, money, volunteers and more time. It is time consuming, we have our wonderful golf committee that we formed a few weeks ago. They are on their way to recruiting golfers, sponsors and raffle prizes!

Following our golf tournament, we will have a dinner in the banquet hall of the golf course. It is there we will discuss a little about the foundation, have an awards ceremony, eat and drink, and also have a spectacular raffle drawing. We will sell tickets for the drawing the day of the event, and we have some incredible gifts to give away! If you are a non-golfer, come to our dinner/raffle the evening of the tournament. We had a lot of people join us for that last year, and it is SO much fun!

September 10 is THE BIG DAY! We are having an afternoon scramble, and dinner will be following. All money rasied is going towards the Gavin R Stevens Foundation.

Golfing for a great cause, can't get much better!

So if you're in the area and would like to golf, please do so! If you own a business and would like to donate a raffle gift item OR interested in a tee sponsorship (they start at $100) and you get an 18x24 sign at the tee, as well as advertisement in our dinner journal. We also got a lot of these last year. Some people lived out of the city, but wanted to contribute, you can provide us with a gift card that will be part of the raffle prizes. A lot of people did restaurants, supermarkets, gift cards. It worked out so well... so there are many ways to get involved, should you choose to do so.

You can read up about it here. Mind you, our foundation website is under construction. I'm hoping to get the content up this weekend. I will let you know when you can come back and take a peek when it's all up!

You can also see pics from last year.

Tuesday, July 20, 2010

Q & A

Foundation Fighting Blindness, Gavin's Groupies, VisionWalk, Hands Down Monkey, Gavin R Stevens Foundation. What is what? What do you do? How do you raise money? Do you sleep?

We have been reaching so many people, and I have been getting a lot of questions in regards to the above. Let me try to clarify. I apologize to our new readers, or followers on Facebook and Twitter. I am still in the developing stages of the new website, and currently working on the content. Please bare with me! Once our foundation website is up, I think this will all make more sense. The below are some questions I have been emailed with, or variations of. Please let me know if there is still some details missing - I know we have our hands in everything.

What is your affiliation with Foundation Fighting Blindness? FFB is a non-profit, nationally recognized organization, whose goal is to find a cure/treatment for blindness. I found FFB last year, days after Gavin's diagnosis. Each year they have VisionWalk, which is their signature fundraising event. It takes place in various cities across the country. We were at such desperation and sadness last year, FFB and VisionWalk helped us. We got a team together in 3 months, and raised over $9,000 in 3 months. I was then asked to be the Walk Chair, and on the board for our Orange County Chapter. I was honored, and accepted the position. Since last year, we have raised over $22,000 for the Foundation. FFB is my second family, they are near and dear to my heart.

What is Gavin's Groupies? Gavin's Groupies was our team for VisionWalk in '09. Since then, whenever we enter an event, and need a team name, we are always Gavin's Groupies. It's catchy. We have shirts, wristbands, visors, and the list goes on with Gavin's Groupies. Every "member" of our new foundation (more info below) will be officially considered a Gavin Groupie with membership, (and other goodies). Gavin's Groupies is our team name, but is also the name of all our supporters. :) It kind of stuck, I created a FB and Twitter name for Gavin's Groupies, and the rest is history.

What is the Gavin R Stevens Foundation? Troy and I started a non-profit, 501(c)(3) organization, GRSF. The reason behind this was, I wanted to start something whose focus is on the exact disease Gavin has, Leber's (LCA). I want to raise awareness and increase funding, specifically for this disease, and not just blindness in general. LCA is so rare, approximately 3,000 in the country. Something needs to happen to really vamp up the research and awareness. No one better than people who are emotionally tied to this disease, than those affected. I can't wait around to wait for a cure, or for someone else to take the reigns and make a stink. We will! Thus GRSF was born. It's been a year trying to put this together, lots of money, research, blood, sweat and tears. Ok, not that drastic, but you get the idea. It's been a long time coming.

Why the GRSF when you have FFB? I chose to form GRSF, only because FFB donates towards many diseases, as far as research. I adore what FFB does, they cover it all. They have made great strides in supporting research for LCA as well, and I am so fortunate for that! Don't worry, we are not cutting off our support of FFB. We will always do VisionWalk, we will always fundraise for them. You can't abandon the support that has brought you to the place where you are. My hopes is we can cross promote, and I already have plans for next year, using GRSF to help FFB with VisionWalk. Stay tuned!

Why the Mud Run? Recently we did the Irvine Lake Mud Run in Orange, CA. This is our second one, and if you combine runners from both events, we had a combined team of 520 people! Mind you, these are all people who ran in the mud, to help us raise awareness! None of the money from the registration was donated towards GRSF. We kind of fell into this, and turned into a great thing. We were featured in an article on msnbc.com, OC Weekly and a few magazines, and other newspapers. We have booths setup with Gavin's Groupies merchandise, literature, and endless volunteers, ready to answer your questions about Gavin, LCA, our foundation, and how to get involved. There are over 5,000 people there each day, so we reach a lot of people! This is why we did it again. It's not just about raising money, it's about educating. :) This is a great place to be able to do it. We actually held our own fundraiser within our team, and our runners were able to take part in our pledge program. We raised close to $2,000 with this, just from others pledges.

Are you doing another Night without Light? Yes! Do I have dates yet? No. I'm sorry I don't have a definite answer on this. We want to wait until the cooler months of the year, and have been talking about this fall/winter. We have other potential events in the upcoming months, so once we solidified those, we will be closer to an answer. I will definitely keep you posted.

I see Hands Down Monkey, what is that? Hands Down Monkey is our first website we started. It is kind of our first go to website that will contain all of our info, and links to my blog, FB and so on. We do a newsletter that is sent from HDM. Anytime we share info, we say "check out handsdownmonkey.com for more info". It's easy to say, and catchy. :)

Will your upcoming fundraising events benefit GRSF? Yes. We have already been receiving checks (thank you so much) to our new PO Box (so exciting) made out to GRSF. Aside from that, our fundraisers will benefit GRSF. I hope to raise $1 million dollars very soon, but will first shoot for $100,000. We will be there soon.. sooner than I think we know.

Where will you donate money from GRSF? We are working on that. We have a general idea of where we want our money to go (towards research), but specifically we need to find where. It may be one specific place, or a few. We are talking to people about this, and communicating with where the money would best benefit. I will keep you posted. I am so excited to be able to cut a check, very very soon! Side note: All our Board of Directors are volunteer, we do not have salary employees. We are not benefiting from any of the money raised, we don't want to.

Why do you do this? Because I love it. It is a mission. I am a walking fundraiser. I had no idea this would be my path. I was very career driven, climb that corporate ladder, make more money, blah blah blah. Then I had kids. Then I had a child with special needs, and a disease I cannot help by kissing his beautiful eyes. We are starting the foundation with no money going into it, our own personal money to start it, and I couldn't be happier. I have never been more fulfilled, doing something I love, living it, breathing it, sleeping it. This is truly my passion, and I make no money doing it. I make connections, we will change lives... and Gavin is part of a bigger picture, and I am so happy to pave that path. It's challenging, it can be exhausting, but I have never been a part of something more rewarding. Doing something for others is where I belong.

Do you sleep? Ha Ha. Only because my body forces me to. Can you imagine what we could do if we didn't spend time sleeping? Grrr...

I guess on that note, since my kids will have me up in 5 hours, I should actually try to get some sleep. I hope I covered it all. If not, PLEASE leave me a question in the comments and I will add it to this post. I love the questions, so nothing is off limits. I know we are doing things all over the place, but thank you for your involvement, and continued support.

I can't wait what tomorrow will bring!

xoxo

Irvine Lake Mud Run - Summer of mud, Gavin's Groupies raising awareness of blindness.

We had runners, we had walkers. We had adults, grandparents, great grandparents, teenagers and children. We had new friends, we had old friends. We had families, individuals and babies in strollers. People we went to high school with (and hadn't seen since), neighbors, friends of friends, and new people just happy to join our cause.

I had tears of thankfulness, many moments of joy, many hugs and laughter.
We walked away with more strength, admiration and love for those who continue to support us, and an even more grateful heart.

We had fun, we got muddy -- and mission was accomplished!


The course at Irvine Lakes in Orange, CA. We did our first mud run in April, I wrote about it here. We had 50 more people this time, and ONLY 60 people were returning, which means in just two months, we had 180 new people join us!


I'm trying to hurry and get our booth ready for the crowd.

Our registration desk. We had over 240 people JUST ON OUR TEAM! We had to check in all of them, have them sign the waiver and give them their number. They had a great process, thanks guys for working so diligently! That's my cousin Cody on left, friend Megan, my aunt Michi (in back), and my sister Karyn on right. It was very hot in the booth, with not a lot of air flow.

This is Grandma Alice and some of her grand kids/great grand kids. If everyone had a grandma Alice, the world would be a better place. You will always find her working our booths and talking about her great grandson, Gavin. I'm so happy my cousins who could come, did. It's always so nice to have your family with you!



Many people came early, to avoid traffic. They hung out in front of our booth. It was so awesome having our team mingle with each other - ORANGE was everrrrywheerrrre!


Summer and her buddy, Gavin.

Cousin Kyle and his infamous smirk.




Gavin staying cool in his playpen.

Daddy and Gavin.

They made their own Groupies shirts, love it!




Shot of my family before they took off running.
L-R James, Sharlene, Chuck and John. Sharlene joined our team, with her guide Chuck. Sharlene is blind and likes to be active, and often runs marathons, half marathons, has cycled across Europe and that's just a brief rundown of what she has accomplished. This was her very first mud run! I was touched to have her and Chuck with us. John (team captain) ran with blacked out goggles, so he could get a sense of what it's like to do this without vision, rely on a guide, and use his other senses to help him complete the race. He said he was very humbled by the experience. James was John's guide throughout the race. Next time you don't think you can do something, think about Sharlene! She has inspired me. This photo speaks many words, but most of all - resiliency and perseverance.

Groupies at the Start line, getting ready to go!
The great people who run the mud run, have been SO extremely supportive of us and our cause. They give us a terrific platform to be able to get people involved, and just makes us want to strive for more, and do more. A special thanks to all of them! They put on a fun event!


Richard Blade was again doing the announcing. He's always so great! He talked about Gavin, our cause, and handed the mic to Troy so he can say a few words to our team. Troy thanked everyone, and told everybody how much we appreciate them for being there and running for Gavin!

Look at all that orange -- WOW! That's just our team!


John being guided by James.


Mud

... and more mud.

And some bubbles. They even had a kids race.


The after math.

John and James


Sharlene and Chuck, just finished!


We also had a team enter into the Dirty Dodge ball tournament, that took place after the mud run. We took 2nd place! This was brutal. It was blazing hot, and they did not mess around!




My sister in law, and niece Maya. They couldn't be with us because they are on vacation, so they brought Gavin's Groupies to Costa Rica!



We have close to 200 pictures on Facebook of the event, please check them out on Gavin's Groupies page.

Trish joined us and ran with us, and wrote about it. Thank you Trish!