Spring is in full swing, and we are jam-packed with our upcoming fundraisers and events!  They will all be on our website shortly, but wanted to post a run down for those interested:

1.  Spring Fling Indulgence Faire at Victoria Gardens THIS Saturday from 12-6pm in the Cultural Center.  Come do some great shopping and support our foundation.

2.  Orange County VisionWalk at Anaheim Stadium on Sunday June 15th at 9am.  Come walk with Gavin’s Groupies as we walk for a cure for all retinal diseases!

3. 4th of July fireworks booth in the City of Chino. Once again, we will have a fireworks booth, and all proceeds benefit our foundation.

4. Lake Arrowhead Classic Car and Motorcycle Show in Lake Arrowhead on Saturday July 26th.  Register your car, or just come on down and take a stroll through the village and check out the vehicles.  There’s food, vendors, beautiful backdrop of the lake, and all proceeds benefit our foundation.

5. 5th Annual Gavin’s Golf Classic – September 26 2014.  Grab your foursome, and join us for a fun day of golf.  We are also selling sponsorships, a great opportunity for your business.

6. Helicopter Ball Drop at Gavin’s Golf Classic – Purchase your tickets for a chance to win $3,000!  Each golf ball is $10, and you don’t have to be a part of the golf tournament, or be present to win.

7. Night without Light dinner fundraiser.  TBD, and details to follow.

I’m sure we will have additional fundraisers to add, but this is what is coming up for the year, so mark your calendars!

** We are also putting together our committee for our largest fundraiser of the year – the golf tournament.  If you’re interested in helping, or selling golf ball tickets, please email jen@gavinsfoundation.org.

As always, thank you for your support as we raise funds for LCA-NMNAT1 Project Research for Sight.

 

 

 

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As many of you may know, Gavin attends the Academy of Music for the Blind, in Los Angeles.  He is the youngest student, and we are so blessed to have him be a part of the extraordinary music education!  All the students are visually impaired/blind and some of the teachers are also blind.

Gavin’s music curriculum include the recorder, percussion/drums, voice lessons, ukulele, piano, harmonica.  As he gets older, the guitar, saxophone, flute, etc. will be introduced to him.

This education includes tuition, and we hope to bring some fundraising money in to allow this academy be available to all who wish to attend.  In celebration of the 10th anniversary, there is an upcoming dinner/auction to be held at Café Mudial in Monrovia.  It will be an evening out with cocktails, dinner, and auction.  Gavin will be part of the entertainment, and will be singing for the guests!  Click here to purchase tickets and be a part of this wonderful evening for a very worthy cause!

Follow Academy of Music for the Blind on YouTube and Facebook, to keep up with these very talented children!  Below is a snippet from the Christmas performance.

Enjoy!

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I wrote the below Facebook post a month or so ago.  It had over 15,000 views, and so I thought I would share it here on my blog as well.

It was 5 years ago this month, we saw our first specialist. It was then the doctor slumped back in his chair, after examining our 3 month old baby. The look on his face, and his words still ring in my head. “Your baby is blind, and I don’t …know why.” We began our new life with Gavin that day. I wish the person I am today, could have talked to the devastated, lost, withdrawn, depressed, and confused mom I was then. I would have told her, it gets better, and your son who was born blind will have all the opportunities that your older son has. His life will fill you with the greatest joy, and his spirit will bring people to your life that will enrich you. The blind community that you know nothing about, will become your family.  You will learn the way you see life through Gavin’s eyes will make the world much clearer. His cane, Braille, therapists, meetings, it will all become part of you, because it’s part of him. And you will one day be ok with it. You will still feel sadness, but the miracle that is your son will bring happiness and fill your heart with little miracles everyday! The only thing that will now bring tears to your eyes, is hearing his angelic voice ring through your home. This month 5 years ago, the saddest thing we thought happened to our little family. Little did I know, our life was to be special, and that was the start of a new, better life that I couldn’t imagine any different.”

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I have met many families who are just now going down this road with their child.  To them, I  wanted to write the below:

Dear confused and sad mom and dad,

I know how you feel.  As you hold your baby, the quiet tears may fall.  You may be trying to picture a year down the road, or a kindergartner, or a high schooler, that will be blind.  It may be very cloudy, because it seems as though it’s hard to look at tomorrow.  For us LCA parents, we know there is not treatment (lots of hope).  This is the deck of cards we were given.  As difficult as it is to understand it, this is what it is.

You will hear it all.  “At least your baby is only blind,“  “At least he can hear.”  If that makes you angry, it’s ok… it made me angry too.  Logically we know all of this, but our child is relative to OUR LIVES, and it is heartbreaking.  Gavin was the second person in my whole life I met that was blind.  I had not a clue where to begin with making sure my emotions were in check enough to deal with all the work that came with this, and figuring out early intervention, the medical aspect, and everything in between.

Raising a child who is blind, may be a process of acceptance.  Many people, many, many people will share their journey with you.  But the waters need to be navigated by you, to get to a place of understanding and acceptance.  Logically, your brain knows your baby will grow up to be a happy independent adult.  Your heart and the part of you being your child’s mom, needs to process this to catch up to your logic.  Your emotions need to find their way back to your heart to fully get a grasp.  Gavin is 5, and I am still learning.  The crying is not everyday like it was for the first 2 years.  But yesterday, I was very sad as I tried to explain a bee to Gavin.  He wanted to touch/see it.  He wanted to understand them.  He did not get it.  I knew he would, it would take some time.  That was the logic talking to me.  The mom in me, wept.  It was hard, and these types of situations always will be, it’s just what it is.

IEP’s, meetings, doctor appointments, therapy, therapists, specialists, braille, white canes… this is your new family, and a part of your new life.  Your new team that will help guide your child.  Don’t be afraid.  But don’t stop being your child’s best advocate.  Your baby needs early intervention, and you as a parent, need to find your groove with your child.  You need to learn what makes them upset when they can’t tell you.  Loud noises, open spaces, too many voices in one room, echo’s in an empty hall, car horns, loud pitches in music, over stimulating toys, under stimulating toys, too many things to play with, not enough movement, too much movement, and the list goes on. Our children who are blind, learn very different.  Stay close to their cues, and listen to your gut, don’t dismiss your instinct.

Open your ears and your hearts to those who have gone down this road.  Put yourself out there, not one question is too dumb.  The blind community has helped to heal my broken heart.  They have shown me what I needed to see.  They have taught me that even though you don’t understand, and you go through all the emotions to try to just fix it, that it is ok – and this is it.  Get comfortable with interacting with adults who are also blind.

I get it.  I am raising one son who is fully sighted, and active, playing soccer, running around the playground with his friends.  And I am raising a totally blind son (minimal light perception only), who I wonder would he have been doing the same if it wasn’t for the blindness?  I couldn’t have helped but get sad this past weekend because many of my friends were at opening baseball ceremonies for their kids.  I can’t help but allow my mind to wonder, and ask, “Would that have been Gavin out there in his uniform, with a team, running the bases unassisted, catching a ball on first base all on his own?”  It’s ok to have those thoughts… you’re a mom and it’s normal.  I feel like for so long, I was quiet with my emotions, and only my husband saw me cry, and knew why.  Because I didn’t want to be that mom who was perceived by everyone else that I am not grateful that I have a healthy baby, and he is only blind.  I felt like my emotions weren’t validated, not because of anyone saying anything to me, but just me.  But it’s still relative to me and my family, and there are times where it can be just downright sad.

Having said all of that, I don’t know if I could imagine my son anything other than who he is?

Odd coming from me, because we have founded a non-profit for research for Gavin’s gene mutation that has caused his blindness?  Not really.  Troy and I have found our lives work with this.  If a cure comes in 5 or 10 or 20 years, and Gavin doesn’t want it, we would never have regretted going down this road.  And I will still be working for it.  LCA, is not only a part of my family’s DNA, but it has become emotionally attached to us.  If you’re reading this with a baby in your arms who is recently diagnosed, it may sound weird.  But you will get to know your child more in the upcoming years, and come to a point where you understand, respect the life that was given to your baby.  And that your child may not want the choice to regain their sight.  What a mix of emotions right!?

Cry when you need to cry.  Be sad when you want to be sad.  But pick yourself up and take glory in all the amazing miracles that is your child!  They are waiting for you.

Try not to let it bother you too much, when you feel as though people don’t understand.  No one will ever, EVER understand unless you have traveled this road.  Don’t let it detour you.

Tell your family what you need from them.  Don’t change your vocabulary around your baby.  Talk about colors, the sunset, all the intangibles that will be very difficult to explain.  Do it anyway.

Surround yourself with the circle that is going to support your decisions.  You will need more support than you may think you do.  Start a journal, and don’t just take pictures, TAKE VIDEO of your baby!  Take video of your baby laughing, blabbing, playing.  You want them to know what they sounded like when they were babies.

Find online support, find your community.  Late at night, you may need some words of wisdom to get a restful sleep, and reassure you.  Reading through past blogs, posts from the communities I am a part of, has helped during those late nights when my mind was searching for answers.

My most important point to get across.  Love your baby, even if you don’t know today how you will find the courage to raise your child who is blind.  Because believe me, I had many moments like that when Gavin was just months old.  How am I going to do this?  You will, and you will find your way.

You know what else, it gets easier…and harder.  Remember the logic versus the mom.  It’s a constant.  It’s not as prevalent, it may not rule your life like it did when your child was small, and you were trying to just understand it all.

Let me give you a glimpse of where we are with Gavin today, at a mighty 5 year old!  I say mighty, because he is the most stubborn little thing I have ever seen!  He will start kindergarten next year.  He is learning/writing braille, he is becoming quite the little musician/singer.  Our days are fun!  We laugh, we love, we are family.  All the craziness that comes with that, makes me so grateful for this beautiful life we have.  When Gavin was diagnosed, I was depressed, sad, confused.  Every emotion you can think of.  That has since passed, but those emotions sit there.  I can feel them, but they don’t surface all too often.  When I see Gavin struggle with trying to pick up on the social cues, I get bummed.  That is our biggest struggle at this moment.  So when I say it gets easier, and harder, it’s because there are always new phases that you have to find how to navigate.  But you will have the solid foundation under your grasp, once you travel those first few years of acceptance.  You will get there… but make sure to get there with your group, your support and your family and friends.  Bring them with you, share with them how you’re feeling.

I look at Gavin now, and I see the most fascinating little boy I have ever known.  I look at Landon, my oldest, and I see the most fascinating little boy I have ever known.  :)   Yes, that’s a mom talking.  But that’s my point.

This is your life, and the beautiful lesson that comes with it, is this is all much bigger and better than your comprehension of what you believed and wanted your child to be.

Love, respect and accept.  What a journey this has been!

With love and understanding,

Jen

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BUNCO is Baaaack!

March 10, 2014

Join us THIS Friday for a night of fun!  Bunco is always a blast… we will have food, drinks, 50/50 and raffle prizes.  It’s a great date night, and a way to help us raise awareness and funds for our research.  Never played Bunco before?  It’s not just for girls, in fact we have just [...]

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“Mom, am I blind people?”

January 11, 2014

I got asked the question tonight, I have been wondering how to answer for the past 5 years. I’m finishing up making dinner, call Gavin to the table, and I hear in his little innocent voice, as his little bare feet pitter patter closer to me. “Mom? Am I blind people?” * heart sinks * [...]

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Braille Christmas Ornaments

October 29, 2013

You can order here Truly unique Christmas ornaments can be hard to find, but what about an ornament with personal meaning and helps raise money to fund research to cure LCA – NMNAT1. We love making these each year. I started when Gavin was a baby for family and friends. The first Christmas with Gavin, [...]

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Night without Light dinner

October 17, 2013

  One of our most treasured fundraisers for the Gavin R Stevens Foundation is coming up on November 9th.  You can purchase your tickets online.  Come spend an evening with us, and take a walk in Gavin’s world as you eat dinner in complete darkness.  We will have raffle prizes, music, drinks and dinner in [...]

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October Blindness Awareness Month

October 6, 2013

October is Blindness Awareness Month – we have an official month, yay! It seems like everyday is Blindness Awareness Day for us at the Stevens household.  But it makes me super excited to know it is recognized in the month of October. During this month, I wanted to share a little about blindness, LCA and Gavin. [...]

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Upcoming events for the Foundation

August 12, 2013

We are plugging along, continuing to raise money for LCA-NMNAT1 gene mutation.  We have some upcoming events that I would like to share with you.  Since we are 100% volunteer non-profit, we do everything to raise money, and every dollar is as valuable us – if it comes from a small fundraiser or a large [...]

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Baby Josh needs our help

July 31, 2013

To all our wonderful Gavin’s Groupies supporters… I hope you read the below, and am asking you to PLEASE SHARE, and consider being a possible donor.  Josh’s little life is up against time, as he waits at Children’s Hospital LA.    Josh is a family member of a close friend/Gavin’s Groupie. This is when social media [...]

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