New beginnings...

I will no longer be uploading this blog.  Please go HERE for the new website to get the latest updates about Gavin, and our journey.  The blog is still titled "All Children.. Should be Able to See a Sunset", but the domain is www.livingwithlca.com

Hope you have bookmarked, and continue to follow us!  I shared some exciting information last week, I hope you hop on over, and see what's going on!

It's been fun blogger. :)

Yes, I'm still alive...

Blogging will return to normal... soon. :)  I'm enjoying our summer, even if it's just lazy days.  If I'm on the computer trying to formulate a blog post, I'm taking time away from my kids and my husband.  I refuse to be on the computer, more than what I have to these days.  By the way, thanks for the emails. :)  I'm still here and read them.

I don't blog about our daily lives, so when I do blog, I try to have it with a lot of content.  The special word is "try" - LOL.  So, it takes me a bit longer, than to throw words together about what we did that day.

School starts the end of the month, so we are down to the last few weeks of summer.  I will be back with updates, soon!  Updates on my new blog site - YAY!  Got a domain, moved everything over.  I just haven't played with it much, yet.

One quick update, no news on Gavin's gene - yet.  Hopefully when I post again, I will have some more news to share.

It's 11am, and we are still in PJ's.  Boys went night swimming last night, and I have yet to pick up breakfast dishes.  Oh summer... I love you.

Until Fall...

Just kidding. :) 

PS - Enjoy your kids.

Speck of dust

Who loves science?  I'm a closet science freak.  I love the science channel, books, pictures, and all that is galaxies and solar systems. My mind often wanders to the enormous size of what exists in our universe, and kind of really gets to me.  I subscribe to many science newsletters, and this particular email I received really got me thinking.  It was titled "How Big is the Biggest Star in the Universe?"  Of course, this title alone gave me heart palputations, and I needed a glass of wine drink of water.  I couldn't read it fast enough, scanning the text for the size.

The size of this star (VY Canis Majoris) being almost 5,000 light years away, and over 2,100 times the size of our sun. Over two thousand times that of the sun!  How can you even imagine that?

Holy Ginormous!

I have always said not being able to share scenic pictures of nature and the world with Gavin, is what can instantly bring me to some heavy sighs.  Yes, he will see it differently, but the visual beauty is what I am talking about.  Especially when I gaze to the heavens on a clear night in the desert.

Instantly, as with much of science when I read about the realm which exists outside of our galaxy, I am reminded how we are just a speck of dust in all that exists.  You would think we, as humans, would unite and align ourselves in a way which bans together the human race.  How did I go from talking about my nerdy star to my philosphy of life? I'm not quite sure.  What I do know is, I am tired of the lack of focus at times from some of my fellow my fellow humans, with whom we share the same planet, sun, air and water.

Speaking of outer space, maybe if the world were put on high alert, and attacked from some type of Extra Terrestial beings, the world would unite and be one. Maybe?  The political parties constantly fighting and bickering, would stop.  People not having respect for our President (walk a mile in his shoes), regardless of what your political party subscription may be, would end. It's amazing that some people think that there is not a human behind that title. Those who religiously practice their faith (or not), but yet are so quick to judge and criticize, would cease.  Those who bully one another, attacks against one another based solely on your sexual preference, surface judgements based on how fat, thin, ugly, charming, happy, sad, poor, rich, or how much money you make (that you spend), would stop. 

These are some of the conversations that make up what we discuss (by we, I mean me as well), and yet, in all that is important, our existence is something much more than what we can humanly comprehend.  I cannot begin to understand the power of ALL that is life, and that extends to the depths of the ocean, to the darkness of the galaxy.  We are at the mercy of our own mortality, we live life breath to breath (thank you Ronnie Dunn).  We focus so much of where we want to be, who we want to be, than right now.  Now is what is guaranteed.  This very breath.  Yet, we tend to fill those breaths with ugliness, hatred, criticism and persecution.

We are a speck of dust, figuratively speaking!  A very important, smart, soul bearing speck, but a speck nonetheless.  We are so small, yet so powerful and yet we tend to focus on not being cohesive with our existence as humans. 

Raising children keeps you on your toes, and knowing that the home environment is shaping and molding the center of who my kids are... puts some weight on your shoulders.  The more I try to explain (especially to my very bright 7 year old), and keep my eye on what is important, the more I feel I am exposed to the negative that exists.  Hence my little rant. 

Can't we just be the human race, and be thankful we exist and that we are here?

See what science does to me.  Am I just cranky and old?

Back to my star.  Who would have thought VY Canis Majoris would bring so much clarity, and prompt a blog post.  Thank you gigantor star, again I am reminded of what is important, just by trying to imagine the sheer size of what you are, versus the size of me. 


"Individually we are one drop.  Together we are an ocean"
Disclaimer:  I respect opinions, I don't expect everyone to agree, it's what makes us great. 

Not blind at heart

 

Busy times

Life is hectic! Is that an understatement?

With obligations every weekend, baseball, and all the other life details that consume our everyday, I will try to do a blog post this week, but no guarantees. Exploring a new business venture, and having to put quality time into the book - makes blogging with real content, difficult. It comes after family time, and even that can be scarce these days with our busy life.

A post will happen, just not sure when. I'm here, just super duper busy.

A really quick thank you to those who replied and emailed me about the "25% chance" blog post. It's interesting, and I agree with all of you on all different levels! Since you were all so honest, I need to be as well. This is something that has made us think about more children. We always wanted 4 (for sure 3). Being a carrier for LCA had made us rethink everything, especially because we don't know if Gavins gene provides the chance for kidney problems/failure.

We are still holding the baby card in our hand. Just not sure how it's going to be played. Many of you know we lost our last pregnancy, and it's been a year, and still as many of you know, it's difficult. Adding LCA to the mix has made it even moreso. Both my kids fulfill my life, but as with many of you expressed who are LCA parents, it's difficult to see things your child has to endure. Making sure the special needs are met, is time consuming as well. I would never want one child to feel as if they are not getting as much attention. The list goes on, and it's so nice to know how many families/mothers I can relate to!

I just rambled. I'm also doing this post from my phone. Sorry for any auto corrections. Lol

Ok, back to the craziness. First up, to unpack from our little weekend spring trip to San Clemente. How can 4 people have so much laundry? I vote on disposable clothing.

PS - Anyone want to vote on something else? I deserve mom of the century! Landon has yet to have his laser tag party for his birthday. His birthday was in March. Let's hope we get it in before Christmas.

Vote now.

Scooter board time - BCLC

Gavin has been "riding" his scooter at Blind Children's Learning Center, for a few weeks now. The thing is, he has to be in the mood to explore, since it does require the skill to really keep your balance.

I'm so proud of him!

When we first started working with the scooter, he didn't even want to hear it. We moved to touching it. Then he began playing with the wheels, and turned it upside down.  A few weeks later, we played a game with it, where we began to push it back and forth. Then it was fun!  He began asking to play with the scooter (which meant pushing it back and forth to Joan).   That was such an accomplishment.

Today, Gavin gets on and off like nothing.  However, it is still a work in progress, as you can see he doesn't like to be on it for too long.  He will get up on the scooter board, all by himself, and get down, all by himself.  At times he wants to get right off, but then Joan plays with him, and tells him "Let's go see mommy", and they scoot over to me, and I tickle his feet.  He laughs, and we can do this a few times.

Seeing his progress, and the new things he is doing, each week, is so encouraging.  It all takes time, especially for someone like Gavin, where he really needs to get an understanding of something before he is comfortable.  Then he moves to mastering it.  He makes strides chunks at a time. 

All in his own time!  I love watching him succeed.

A video and some news!

Tour De Sight from Blend Media Solutions on Vimeo.

Gavin’s Groupies and the Gavin R Stevens Foundation

Please check out the above video!  It shows the incredible energy from our mud runs at Irvine Lake!  It is our promo video for our upcoming Tour de Sight journey in 2012 – where we will be cycling coast to coast for a cure for LCA!.

When you’re done, hop on over to Gavin’s Groupies blog, and check out the latest news that’s going on with two of our very own Groupies. 

So EXCITED!

A baseball reunion

 

One of my favorite things to witness, as a mom/wife, is watching your husband coach your little boy in baseball.  This is Landon’s 3rd baseball year, and the delight that Troy gets coaching his son’s team, makes me proud. 

Shhh… I’m actually more excited that our team are the Yankees.

Yes, it gets very hectic during baseball season.  Practice 2-3 times a week, and games every Monday and Saturday, do make for some even crazier weeks.  Add to the mix, that I’m the team mom, and there are a few things that I need to make meetings for, etc.

All in all, being at the baseball field, has been one of my favorite moments as a mom!  So much happiness, and the kids give it their all, it’s definitely our happy place.

One of the hard things though, is little Gavin.  Gavin and his dad are BFF’s.  I don’t exist when Troy is in the room (sometimes the break is nice – LOL).  Anyhow, Gavin is with me all day, and when he hears that garage door open, he is so excited.  He knows daddy is home! 

The thing with the schedule is, usually Troy rushes home from work, for about 5 minutes to quickly change into his baseball clothes, pick up the equipment, and he’s out the door.  This happens 4-5 times a week with practice/games/meetings.  Gavin is at an age, where he doesn’t understand.  His excitement when he hears Troy come home, quickly changes when he knows his dad is gone for a few hours. 

Games are just the same.  He hears Troy on the baseball field, but yet, he doesn’t understand why his dad is not coming over to rescue get him!  I can distract him for so long with his music, food, and his stroller, that he loves to knock over.  Thank goodness there are always grandma’s there to save me from the Hulk help me.  Gavin’s little two year old fits are a sight to be seen!  They can come in full force at the baseball game, and I completely understand why.  He can’t see that his daddy is on the field, and involved in the game.  He just hears him, and doesn’t understand that daddy can’t come play.

Why doesn’t daddy want me?  I hear him?

This particular game, Troy went straight to the field after a meeting at work.  He was late, and didn’t see the boys at all, before the game.  Gavin was ecstatic to finally hear daddy, and saddened at the same time. 

So I walked Gavin over to the fence, and they held hands during the duration of the game.  The BFF’s were finally reunited, after not being in each other’s company the whole 12 hours of the day. 

Gavin ultimately wanted to rip down the fence, it was a long couple of innings, but he finally ended up getting his daddy.  And all was right in the world.

25% chance

I'm not feeling like a long post is coming, but rather a question.  A question if you are a parent with LCA, or not.  Leber's Congenital Amaurosis (LCA), is an autosomal recessive disease.  Which means, both mom and dad must be carriers of the gene that causes LCA.

Since Gavin has LCA, Troy and I both carry the defective gene.  We carry the defective gene, but we are not affected by gene.  Our children are, or rather that chance that our children will be affected, exists.

This means, it is hereditary, and each of our children that we have has a chance of being born with LCA. 

A 25% chance. 

I have heard many different opinions about those who have this information, and opting to or opting not to, have another child.

If you had a child that was born with a hereditary, genetic condition, and you had the facts that 25% of every pregnancy would result in that genetic condition being dominant, would you have another child?

Why or why not? 

I know this answer will definitely vary, given the condition, but some have very hard stances one way or not.  Explain your answer in the comments, I would love to get some more opinions on this.  It's not talked aobut too often, and there is no right answer - just opinions. 

Disclaimer PS - I'm doing some writing, and your personal opinions will remain nameless.  It's for my personal piece of a project I am doing.

Gavin's eye pressing - another update

So, as you may know, we are on a new adventure with Gavin's eye pressing.  Read this post, from a few days ago, for more information.  In the past week, I have tried some new tactics.  I wanted to share, because I know so many other parents struggle with this.

And what a struggle it is.

The way I reprimand Gavin, and the way I reprimand Landon (our 7 year old), are totally different.  Obviously, because of their age, but I mean in the sense of how we handle a situation, when they are in trouble. It sure is a ride raising one sighted child, and one completely blind child!  If Landon is misbehaving, all he needs to see is my face (or his dads) from across the room, and he straightens up.  With Gavin, as he is getting older, I am finding myself having to be much more vocal.  I even need to get louder, to emphasize my voice in a manner that he knows I am not messing around.  This is so new to me!  He can't see my facial expressions, so he goes based off of our voice. 

I have to be very conscious and aware of the way I say things. This is a learning curve, like I mentioned. 

Back to the eye pressing.  If I tell Gavin "hands down", like I have a bajillion times in the past, he presses his eyes harder now (for the most part).  That is his way of being defiant (and a typical 2 year old).  He does this, and laughs at the same time.  He laughs!  He knows how to get under my skin!  I try so hard not to laugh myself, while I am thinking "What a stinker!"

Obviously, this is telling me we need a new way to handle this.  I have also tried tapping his little arm, and say "hands down monkey."  Almost like a prompt.  Yeah, that does nothing.  Again, he thinks it's a game, or he enjoys frustrating his mother, and he presses harder, and smiles/laughs.

Stinker!

So, I have moved onto raising my voice with him, and getting close to his face, so he knows I mean business.  This has worked!  It kills me, because I am not a yeller, and I am not yelling, but I feel like I am, because it is not me.  I don't raise my voice, all that often.  Sometimes to be heard in my house full of boys, I need to get louder, but I'm not necessarily a loud person. 

Let's see how long this new tactic will last, until he catches on, and starts yelling (or laughing) back at me.  I'm hoping this will just break the habit, for now.  Yes, I understand the need will still be there, but breaking the habit (like we did when he would rip off the glasses), is what my goal is right now.

If you have found another tactic working for you, please email me.  I would love any information I can gather, from all those seasoned parents out there who have dealt with this!

I will keep you posted on our progress, and how the crazy screaming lady is coming along with her new approach.  Kidding, of course.  Kind of.

Nap time, bed time is the best.  I know his little eye sockets are getting some much needed rest.  The pacifier continues to still help him as well.  He is soothed much quicker, and does much less of the eye pressing when going to sleep.

Gavin's Groupies BLOG

Here is Gavin's Groupies BLOG.  Please bookmark if you would like to keep up to date with the Foundation side of our lives!  This blog (All Children... Should be able to See a Sunset), will remain more personal.

I will try to keep the Gavin's Groupies blog up to date as much as possible.  I personally run the day to day operations of the non-profit, and I do all my blogging, after family and work.  So, please be patient!  You may hear of an event, but not have all the info up about it.  We do about 2 events/fundraisers a month, thanks to the help of our awesome board!  Some months, every weekend.

Hope you pop in every once in a while!

Thank you! 

An update on Gavin's eye pressing

I'm so glad we have had about a year of not much eye pressing (there were phases of a month or so, where it was bad, until we broke it).  His glasses (non-prescription) have really helped.  He would go to eye press, and feel the glasses and put his little fists down.  It was a great deterrent.  Of course, the eye pressing would happen as soon as the glasses came off (for bath time, or bed time).  He had been doing extremely well at leaving his glasses alone, and not taking them off.

At two and a half years of age, things have completely changed. 

About 3 weeks ago, I saw him playing the piano only with one hand.  Where was the other?  UNDER his glasses pressing his right eye.  I knew that was it.  Once he made the connection that he could slide his fingers under his glasses, I knew a new habit had started.

Sure enough, this is now a constant struggle, that occurs 100% of his waking hours.

There are some things that really just frustrate me with Gavin's blindness.  One being, watching my little guy walking with his 'bumpers out' (hands out), and run into a corner of a door or a wall, directly into his face or head.  The other is the eye pressing. 

Oh the eye pressing.

Eye pressing takes the trophy, hands down, as the most difficult.  I don't want to sound frustrated, but we are.  Of course, the objective would be to keep his hands occupied, and busy.  Of course they are, but it takes one split second, or a pause in playing, or one hand, to just slip under the glasses.  I can set him up with a toy, or one of his piano keyboards, turn around to walk to another room.  All it takes is for me to be without hands distance with him.  It's troubling to turn around, and see 3-4 of his little fingers, about one inch deep into his eye socket.  In a split seconds time!

We have tried everything.  The car rides are awful, especially sitting for 45 minutes in the car line to get Landon from school every day.  Toys help, but not with both hands.  The Snuggle Wraps we had used previously, did work.  I couldn't do that to him now.  They are so constricting, and he cannot stand them.  Yes, they serve a purpose, but I think we are past the stage when they worked really well for Gavin.

You can really tell he has been pressing, even with my constant guidance.  It's something you cannot escape.  My house is a mess, I'm behind work, as my time is devoted to keeping Gavin's fingers out of his eye sockets, trying to break him from this habit.  I know he will always have an urge, I get that... but trying to break him the habit right now, is my number one priority.  Sorry this is a frustrating felt blog post, but it is what it is, and comes with the territory of having a child with LCA, with no vision.

My biggest concern with the eye pressing, is the damage it can cause to the bone structure in the face, and of course the damage to the cornea/lens of his eye.  He is more precise now with the pressing, since it is not just his fists, as he did before.  He is actually inserting fingers now into his eye.

I was feeding him soup for lunch today, turned to get another spoonful, and turned to feed him, and the above picture is what I saw.  This is us, all day long.  I feel for all the parents who deal with this.  I'm hoping for a break soon, and hoping we find something that helps Gavin.

* If you are interested in why Gavin may eye-poke/eye-press, please click on the link to the right of the blog that ready "Why does Gavin wear glasses if he is blind?"  I go into pretty fair detail about it.

Thanks for hearing my rant. :)

New blog!

This blog will be moved to WordPress (FINALLY).  Phew!  I have been wanting to switch to WordPress for quite some time, and to it's own domain.  I'm finally in the process of it.  Hold tight, the finished touches won't be for a few weeks, but once it is up, I will no longer have a blogspot account.

Many of you may know, we have Gavin's Foundation that we started about 10 months ago.  I have kept to my promise that I do no inundate posts on here with foundation info.  We have our website, we have our Facebook, and our Twitter and Flickr accounts all with the foundation info.  I wanted to keep Gavin's blog, Gavin's blog, more personal, and dedicated to his development, trials and triumphs, and to be resourceful.  I do pop in every once in a while, when we have a big event coming up... but I did not want to turn this blog into a Foundation blog.  Not that it's not important, but it's really second to everything.

I also want to thank those who have put me in the "mommy blog lists".  I get frequent emails from people who have found the blog through those, and I am thankful.  I, however, do not consider this a typical "mommy blog".  I choose to not blog about "mommy" activities, or day to day events.  We also have another older son, who is 7.  I didn't start the blog to be a "mommy blog" and update our daily events. Absolutely nothing wrong with that, I just choose not to.  I'm sorry if I have disappointed those who have come here to read about that.  If that were the case, only every other post would be devoted to Gavin, to keep fair to our oldest, wonderful son!  Landon is not talked about much on here, but because I didn't start the blog to blog about both my children or my family in general.  It was a way to have an outlet with Gavin's diagnosis, and has taken a life on it's own, since.

I appreciate all my loyal readers, and even when this gets moved to its own domain, it will be kept more informational, and just about Gavin.  It will also be my opinions on certain things, and our emotions regarding the day to day challenges.

We have also decided (I actually started this about a month ago, but with allthefreetimeIhave I haven't made it live, yet), to do another blog just for our Gavin's Groupies and our events.  This blog will be an extension of our Foundation website, for those who are interested in reading.  I think this is great, because you will not get overwhelmed with all the postings of our events (we have about 2 a month), and all the Foundation talk!

Not that it is not important, but I know there are many here who come for support, and who are not interested in fundraising.  I completely understand!  I don't want the foundation/fundraising info to be shoved down your throat, so to speak.  We have A LOT going on with the foundation, it would not be fair to share it ALL here - when you may be here just to get resources. Now you will have an option to read about our upcoming, past, and ongoing projects, events, fundraising, and all the incredible things that go into running a non-profit (including the headaches).  snicker

I will never give up the fight for my son, so he may one day have an option!  I will first, however be number one as a mom to both my boys, an advocate for them, and the foundation falls into line where it may in our lives!  Today, it is my full-time job, outside of my full- time job <mommy> (neither of which I get a paycheck, but it's the most rewarding job I could ever imagine).

Thank you all for being here, and showing interest in reading about our son, Gavin, and our journey.  There are so many different layers of being a parent to a child who is blind.  I love reading your comments and emails!  You inspire me, and I'm glad you are with us, as we take on this journey, that we are now so blessed to be on.

By the way, how can you not be inspired by this hair?  LOL

The million dollar smile, however, is another story. :)

What a show off!

Count the garden by the flowers, never by the leaves that fall. Count your life with smiles and not the tears that roll. ~Author Unknown



Celebrate life

This past weekend, we spent in Las Vegas.  My cousin got married, and I was honored to be a bridesmaid.  It was a fun weekend with family, many I have not seen in a while.  It's always so nice to reconnect, hug, and have an understanding that we are all so close, regardless of the distance between us.

I had a realization, as I was standing shoulder to shoulder with the other bridesmaids, waiting for the beautiful bride to walk down the aisle.  I looked into the crowd, and saw my aunt, who lost her husband (my uncle), and my grandma #2 (my grandpa's wife) who lost my grandpa, both within one month of each other. It hit me, as we sit here as a family, celebrating life, and love - there is an emptiness that will always invade our hearts, regardless of the occasion.

It was truly bittersweet. 

I have mentioned before that the past two years, have been a turning point for me, in the way I perceive life.  Gavin has played a role in that, and the grief in my heart for those I love and miss, play a role in that.

Thanks to some things that have happened, I have so much peace now!  It's taking me some time to get to this place.  I thought I knew the "big picture", but now I feel I understand it.  People utilize so much of our precious time that we are given to live our life as a human being, on such irrational, and insignificant things.  I know we all have our own path, but things are so much clearer to me.

To call life a series of processes, is an understatement.

My life is at peace, even though I have sadness in my heart.  I am learning to be able to compartmentalize those feelings, and that is thanks to so many things.  My relationship with family members have become stronger, and some relationships, I choose not to be as close to anymore.  Albeit, family, friends, acquaintances.  I put energy into positive people and those who I have learned to trust with all my heart.  I often wonder how people can carry on their life with judgement, and criticism, and I wonder how happy they really are?  Thatsanotherstory.

Those moments, like the sadness I had for my aunt, and my grandma #2, is a moment that is life.  It is what we are now.  I have learned to appreciate it, as it is a recognition of those who are no longer with us.  I have learned to appreciate those who are living, just as much, as well.  Working on myself, so that I am a better person to those who I love and cherish with my whole heart, is a life long process, that I am so thankful to do, because I am here.

Fighting the tears as my heart broke for my uncle and my grandpa who were not there to watch my cousin walk down the aisle, was difficult.  Realizing they will always be here with us, and they are a piece of us, carrying on their legacy; was easy.

When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, "I used everything you gave me." ~Erma Bombeck

 

Talking Easter Eggs

It's that time of the year again, time for the talking Easter eggs.   You can find the Hide 'Em & Find 'Em Eggs at Target, WalMart, etc.  They have an on/off switch, and will "talk" for 30 minutes.  These were a hit in our family last Easter!  The sighted kids like 'looking' for them, with their eyes closed.  I also love that you can still put little goodies in the eggs.

They do run out quick at the stores, so don't wait for the last minute!  You can also buy them on Amazon.com!

Happy Beeping and Talking Easter egg hunting!

We live this life, breath to breath

 

Ronnie Dunn

I absolutely L-O-V-E this song.  I have become fairly fond of country music the past few years.  Ronnie Dunn, is a reason why!  Powerful!  If you don’t want to watch the whole video, at least skim over the words.

Reminds me of the that we are all one breath away from your entire life changing!

Let’s say were sorry, before it’s too late, give forgiveness a chance
Turn the anger into water; let it slip through our hands
We all bleed red, we all taste rain, all fall down, Lose our way, 
We all say words we regret, we all cry tears, we all bleed red

If we’re fighting, we’re both losing; we’re just wasting our time
Because my scars, they are your scars and your world is mine
You and I, we all bleed red, we all taste rain, all fall down, lose our way
We all say words, we regret, well cry tears, we all bleed red
Sometimes we’re strong, sometimes we’re weak, sometimes we’re hurt and it cuts deep
We live this life, breath to breath, we’re all the same; we all bleed red

Let’s say we’re sorry….Before it’s too late…. We all bleed red, all taste rain, all fall down, lose our way, We all say words we regret, we all cry tears we all bleed red, Sometimes we’re strong, sometimes we’re weak; sometimes we’re hurt It cuts deep; we live this life breath to breath; we’re all the same We all bleed r-e-e-e-d-d-d 

We can’t forget Gavin’s version!

Gavin Stevens version

Irvine Lake Mud Run - this Sunday!

The Gavin R Stevens Foundation, which was created in Gavin's name, is the chosen beneficiary for this year's Irvine Lake Mud Run!  We are so thankful, and we are so excited!

Gavin's Groupies is in full force, with another big group, getting dirty for a good cause!  We are running to raise awareness for Leber's Congenital Amaurosis (LCA), and raise money for a cure.

The Mud Run, is this Sunday.  I think it will be extra muddy, as we are expecting rain the next couple of days.  In October's mud run, we had two people who ran "blind", and we had two guides, who guided them through the course.  Our friend, Reggie, wrote a blog post about it.  I wanted to share his touching post, so if you could pop on over and read what his insights of being a "blind guide" througout the duration of the 5k mud run, was like.  It's heartfelt.

Jayson (guide), John (runner), Heather (runner), Reggie (guide) -- October 2010

My favorite quote:

"We walk around with blinders that we inadvertently place there, which hinder us from what we want to do, while those without sight live life blind to barriers as nothing could hinder them from what they desire to experience."

Brothers

Sometimes being a brother is even better than being a superhero. ~ Marc Brown

Help your brother's boat across, and your own will reach the shore.  ~Hindu Proverb

Landon was able to attend occupational therapy, at Blind Children’s Learning Center with Gavin today, as he is on spring break this week.  He was his motivator during some of the more difficult tasks.  Gavin was also doing a little bit of showing off!

There's no other love like the love for a brother.  There's no other love like the love from a brother.  ~ Astrid Alauda

Happy 7th Birthday Landon!

This little boy made me a mom, 7 years ago.

It was on that day, and the days following, I realized my purpose.

My kids are the highlight of my life.  Yes, days I am frazzled – Gavin requires a lot of time at this age, and Landon has his hands full with activities.  I try my best everyday to build them a life they will remember, when we are no longer here. 

Landon is kind, he is hilarious, and he is smart.  He has a heart of gold, and would help anyone at the drop of a hat.  His feelings get hurt, when he sees someone else’s feelings hurt.  I love my Landon Troy!  He loves Star Wars, he loves his family, and he has patience of a saint for his brother, Gavin!

I am so blessed to call him my son,

and am so happy to have the past 7 years with my little boy!

Happy Birthday Landon!  I love you more than you can possibly ever imagine.

Personal Shopper for Hire

 

Personal Shopper for Hire

Will work for

A never ending bowl of pasta with light butter and parmesan cheese,

Apple juice that is not watered down

and

Your iTunes playlist downloaded onto my iPod

Disclaimer:

Not responsible for dairy or frozen items being perished by the time I am done with your shopping.   Nor am I responsible for my personal quality control being done on cereal products, fruit, and Honey flavored Teddy Grahams.  I must avoid aisle #8 (non kid friendly products), and there is no guarantee I even make it out of aisle #12 (candy aisle). 

Actually the only real guarantee is that I have fun pushing the cart around the grocery store for 1.5 hours.

You may not even get your shopping list back, let alone your groceries.

Any takers?

My tribute to Dr. Nancy Mansfield

I met Dr. Mansfield, about a week after we had our first appointment at Children’s Hospital LA.  Dr. Lee (Gavin’s pediatric retina specialist), suggested we go and meet with her.  When a devastating diagnosis is given to one of his patients, regarding their child’s vision, he refers them to Dr. Mansfield. 

I wrote this on February 26, 2009, in a blog post:

In addition, Dr. Lee also put us in touch with a child psychologist. This particular psychologist, Dr. Nancy Mansfield, concentrates on families whose children will be affected with vision loss. She works in conjunction with CHLA Vision Center. You can read about her here. We will be meeting with her in 2 weeks. She and I had a session over the phone. At the end of our conversation, she said she was 'anxious to meet me' as I sounded "too good". Hmmm, I don't think that is a good thing. She caught me at a good time, and not in one of my moments, so maybe I gave her a false Pollyannish version of myself. I am optimistic, but I am also deeply saddened at the same time, I'm sure she will probe deeper. I am looking forward to it actually. She sounds like an excellent advocate for us, as well as had a wealth of information. What I took away from the conversation was, to not overlook your instincts - more importantly your parental instincts. We do have them for a reason, and don't try to justify them. They are there, and should be there, and we need to listen.

Troy and I decided to visit with her.  We were struggling with our emotions, and trying to learn how to deal with the news of Gavin.  We figured, how could it hurt?  We were lost, and any kind of support, in the form of a child psychologist could only help us.

We were fortunate enough to meet with Dr. Mansfield on a few occasions.  I walked in her office with a smile, and she instantly handed me a box of Kleenex.  She saw through the fake grin.  We sat, we talked, she listened.  She even had us bring Landon in on a visit, and she talked with him for a while, and they “played” while she analyzed.  I think Landon early on, didn’t understand, and he had concerns for his baby brother.  I think all the doctor trips to the big hospital freaked him out.  Seeing his mommy and daddy so sad, made him sad.  She gave us tips on how to get him to feel less stressed.  It worked like a charm.

I was so deeply saddened to hear Dr. Mansfield had passed away.  We found out a few weeks ago, when we had our blood drawn for our genetic testing, and I am still thinking about it.  She was such a gift to us.  Talking with my other LCA families close by, I learned she was to them as well.  My friend (who has two children with LCA), and I talked on Tuesday about it, and shared what she taught us both.  I can only imagine the loss the Vision Center at Children’s Hospital is feeling.

Please read about Nancy, and her accomplishments, and what she did for so many.

I want to share the most important things I learned from Dr. Mansfield

1.  Gavin’s eye disease is relative to us and our family

I remember sitting down with her, crying buckets, and she asked me why I was so emotional that day.  I told her I did not feel worthy of feeling sad.  I walk the hallways of Children’s Hospital, and see so many sick kids. That particular day I saw so many cancer patients, it made my stomach hurt.  I wonder why I am so upset because my son is not sick.  He is healthy.  I shouldn’t cry for my son, I should be crying for these children who may not see tomorrow.  It was such an inner struggle. 

She stopped me mid sentence, grabbed my hands and said “Gavin’s disease is relative to you and your family.  There will always be someone who is sick, the stories will always be tragic, and they make us sad.  That does not mean you do not have a right to feel the sadness you do for your own child, who cannot see light.  Gavin is relative to you.  Love your son, you can be very sad for your son, but also mourn thoroughly for your son’s vision.  It is important to mourn, to be able to move forward.  He is not sick, but that doesn’t make it any less sad.”

Those words made a difference!

I hear Nancy often, in my head.   Her encouraging words invade my mind, when I see others and what they are struggling with.  All any of us knows is our struggle, and how it is relative to us.  REGARDLESS of how minute or devastating it may seem on the outside.  It can be a mom’s worry over her child’s very poor vision, who will need glasses for the rest of their life.  In my mind I could be thinking “I would love that to be Gavin!”  But to this mom, it may be very heartbreaking.  Her child’s poor vision is relative to her.  As it should!

I see far too often people comparing sadness. 

“Johnny” was born deaf and blind, so you should be glad Gavin is just blind.  Yes, I have heard this before.  About a week after we found out about Gavin.  Does that remove the element of sadness for Gavin?  Absolutely not.  So, does that statement mean I should be GLAD for Gavin that he is just blind?  I have learned a lot about comparing sadness.  I have learned everyone has their place for their own sadness, regardless of what it is!  And it should be respected and not compared.

Thank you Nancy, for your words of wisdom and your brutal honesty.  You had an ability to teach me how to compartmentalize my sadness, so it doesn’t spill over to everything else, as it so easily could have! 

I am very grateful to have met you, and had you in our lives.  Troy and I, and our whole family, is certainly at our good place where we are right now, because of you!

Rest peacefully.

Gavin's favorite toys

I have had half this post written for months now (mom of the year, I tell ya).  It was inspired because I have recieved some emails regarding the types of  toys that Gavin enjoys.  Most have been from other parents who have a blind/VI child, others are from teachers, or family.  I decided to share some of Gavin's favorites that he has shown interest in.  We are constantly rotating toys.  Upstairs toys, downstairs toys, car toys.  Car toys are VERY important especially for a little eye presser!  You have to keep those hands occupied.  I have brailled most of them, the ones I haven't yet - I just haven't been able to ... yet.  So I keep the ability to braille the toys on my mind when choosing a toy for Gavin

The toys below made the top list. 
[These are not specifically for a blind/VI child.]

The first set below, are great "car toys".  We travel to Gavin's therapy, and it's a 2 hour round trip every week.  We sit in the car line at school to pick up Landon (45 minutes early) everyday.  A "car toy bag" is a necessity for Gavin, and these are a few that keep him occupied.  (Along with the Goldfish and Juice cup) that are a staple in the car.  All are brailled (by me - they did not come brailled).  All are perfect size for his lap in a car seat.  The top two, were great when he was smaller (bigger buttons). 

(yeah ignore the spacing, I know the pictures are not even)





The next row of toys, are ones he plays with either standing up, or on the floor.  Little big bigger than the car toys.  The "piano" is his favorite.  He loves piano, he loves his keyboard, and he loves his meow piano.  It has more buttons than just the keys, and he has mastered every single one.  It's quite fascinating to watch his little fingers trail over the toy to find the exact button he wants.









(here too, I'm too tired)















(it is annoying, I know... but it's not cooperating)










This alphabet train from Vtech is awesome!  All the blocks have a different letter of the alphabet, there is a hole to drop the blocks in with music (as a reward for doing so).  There is a book on the side of the train, and the pages of course turn.  It's a book of the alphabet.  You can store the blocks under the seat of the train, and the train also has a seat you can sit on.  Getting "on" and "off" of anything is HUGE for Gavin, especially giving him the confidence he can do it himself.  This is a perfect height, not too far off the ground.

It's a great toy with many learning aspects!  Our big hurdle is getting him to play with his braille books more often.  He is turning the pages on the book of the alphabet train, and it's great becase it's in the form of play and not direct instruction.




Gavin's favorite place in the house is the kitchen.  Of course!  With drawers that make noise, and annoying mom with pulling everything out of the drawers, how can you not?  When he was younger, our biggest struggle was getting him to play with toys in an upright, standing position.  This magnetic word builder is PERFECT!  He can play in the kitchen, he needed to be upright to play this fun toy.  We have about 4 of these on our refrigerator, but this is his favorite.

He also like the magnetic braille magnet letters.  I can't find that on Amazon, but will update when I do.







This jungle activity center was great when he was right around 1 year of age.  It was a perfect height, and he actually started his first time "cruising" around this toy, and the couch.  It is sturdy, it provided stability, and it was enticing.  You can drop the ball at the top, the monkey plays different music, and you can "hide" the balls in the hippos belly and elephant's nose.  Now, at over 2 years old, he still asks to play with the "monkey" as he calls it.  His fun he gets out of it now, is quickly putting all our ping pong balls at the top, and finding which side it has come out of (there are two exits).  Provides directional instruction (on top of, to the right, left of the monkey, etc).





Moving to the very important Vestibular Stimulation. This indoor or outdoor trampoline is great!  We usually keep it indoors, but we can move it outside pretty easily.  Gavin can jump for hours, and there is also music on the handlebars.  It feeds the vestibular stimulation that his body desperately needs.  It's not too big, and is perfect height just for him.  He reaches the handlebars great.  It is also teaching to get him "on" and "off" of things, while he jumps "up" and "down" usually while singing "Five Little Monkeys". 

It introduces a lot of directional listening skills, and engages him for hours!




Ok, I am saving his ABSOLUTE FAVORITE TOY for last!  You would think this toy was paying him to advertise it.  My word.  Where do I start?  He first found this toy at Blind Children's Learning Center.  He was intrigued at the first spin!  BUT, he just wanted to spin it with his hands.  It's made to sit and spin around, kind of like a sit and spin, but without the middle part.  It's completely flat, hence the name "disc".

Gavin calls it the "round and round".  On therapy days at BCLC,  before we get in the car, he asks for the "round and round", because he knows we will be playing with the sacred spinning toy very soon.

He now has advanced to actually getting on and off the "round and round".  This will be a toy to have as he gets older too.  Gavin likes to spin in circles, as many blind children do.  It's more socially acceptable to spin around on a toy that actually is meant for that.  I can envision Gavin being 4 years old, on his belly, and spinning on it till there is smoke.

These toys are in addition to his blocks, and all of the unanimated/non-music toys.  We are working with pegs, pegboards, pull apart toys, etc. to also work on fine motor and hand strength that will help with his cane grasp.  Many things that we are making strides in, is mostly done in a non-direct instruction manner!

Thank you toys!

New meaning

In a world where we are bombarded with messages about physical attractiveness, and chasing the latest trend, I have found some insight about superficial qualities that many base their entire self worth on.  Through the quest for outer beauty, that everyone tries to achieve, Gavin has really changed my value on the way I perceive others . 

We are so consumed, over analyzed and constantly trying to change.  

We need to critique each other and ourselves over our physical traits. 

We put each other down, or build each other up, based solely on these physical characteristics that are either judged as being aesthetically pleasing, or harshly unappealing.

 

Judgment is passed, opinions are formed.

 

We can be laughed at from afar, or admired close up.

 

All based on our natural, or altered beauty.

 

My favorite people are the ones whose hearts are genuine, spirit is kind, and demeanor is honest.

 

My favorite people come in all colors, shapes, size and type.

 

“Beauty is not in the face; beauty is a light in the heart”

 

Thank you Gavin, for giving me a much better insight of the true meaning of genuine beauty and admirable qualities outside of the physical realm.

 

Here are some other “new meanings” that have changed for me, since he has been born.  From the sound of music, to the sound of rain drops.  From the sunsets at a distance, or the compassion from others I feel close, deep in my heart.

 

I have changed. 

 

All for the better.

 

Here are a few more at the top of my list.

 

 

Music

The sound of music is Gavin’s world.

Braille

Braille will be Gavin’s way of reading the world.

Sound of rain

Gavin dances to the sound of raindrops.

Sunsets

I hope Gavin can see the fascinating beauty in a sunset one day.

Glasses

Glasses always meant to me, a way to see better.  Gavin wears glasses, and he doesn’t see better with them, but they are a huge part of his life.

Service Dogs

A guide dog will be Gavin’s companion one day. 

White Cane

A cane will help Gavin’s accessibility, and a way to help him with independence.

Rainbows

Same as a sunset.  The beauty is remarkable.  He is learning colors!

Compassion

I have never felt more compassion in my life, than I have the past 2 years.  It has taught me to be a better person.

“Let the beauty we love, become the good we do”

 

In our society, we all want to look better so we feel better. 

I wish the message would focus on doing better to feel better.

 

I’m all about making the best of what you have, and who you are.  I enjoy trying to look my best, and feeling good.  I just see too often how quickly judgment is passed.  There are so many beautiful people in this world.

 

If only we would look deeper.

 

Gavin doesn’t see the physical beings, he sees the soul. 

 

  Thank you Gavin for helping me see the true beauty in people, as only you will.

 

Sometimes our children are our best teachers!

Vestibular Stimulation (reprinted article on NFB.org)

I was happy to have this blog post that I wrote, reprinted on two websites and as an article in a magazine and in Future Reflections on NFB.org.

Vestibular stimulation was a constant (and still is somewhat) struggle for Gavin.  Trying to get him enough vestibular stimulation, and doing in the form of play was always tricky.  I wrote my ideas in a blog post, to hopefully help others.  Here is the article on NFB’s website.  I’m hoping to get it soon on the Future Reflections mailing as well.

These always worked for us.  It was at a time when Gavin wasn’t moving much.  So it’s great for right around 1 year age range.  Hope it helps you if you are looking for some resources.  Make it fun for your child, with lots of positive reinforcement! 

http://www.nfb.org/images/nfb/Publications/fr/fr30/1/fr300103.htm

Thank you NFB, Future Reflections, and Wonderbaby.org for also reprinting and sharing this information!

This is the original post on my blog from last year.

FFB Dining in the Dark in Orange County

Last night, we attended the Foundation Fighting Blindness Visionary Awards & Dining in the Dark event in Orange County, at the gorgeous Fairmont Hotel.  I was hoping to attend the Symposium during the day, but with the kids, school it was a little difficult to get down there all day.

We always love the meet and greet reception time before.  The great drinks and appetizers, and rubbing elbows with some of the best names of the Foundation and research, are always great.  A few of my fellow Chapter Board Members were there, it’s always nice to see them in a dressy setting, looking fabulous!

I was honored to be asked to be guest honorary speaker for the evening.  We spoke at the beginning, which was great.  My speech followed Corey Haas’ video (below)

When Corey’s video started, we were escorted out.  I told them it would be best if I did not see the video, then have to take the stage in front of 350+ people seconds following the video.  It gets me every time. How can it not?  I managed the speech.  I have talked at previous VisionWalks, Kick off luncheons, our Foundation events, etc.  But I have not given a formal speech in a while.  Troy usually takes the reigns on that one.  He can manage the tears better than I can.

This speech, I was very nervous.  Hundreds of thousands of dollars were trying to be raised.  We were the only non-professional guest speaker, and looking out into the crowd of pharmaceutical companies, doctors, research scientists and the like – can be intimidating!

I was glad to manage the 5 minute terror speech.  Then I was glad to be in my chair, after the speech, with my wine.  The lights went off, and darkness engulfed the room.  I handled this one better than the prior 2 we have been invited to.  No tears, but lots of emotion. 

Thumbs up, a celebratory pep talk before and after the speech from Foundation Fighting Blindness CEO Bill Schmidt and Chief Research Officer, Stephen Rose is always a good thing.  Someone said there wasn’t a dry eye in the room.  I hope I did my son’s story justice, and able to help keep pushing research forward, which is our ultimate goal.

It was not until my drive home that I had phone calls, emails and texts from those who watch the show “Bones”.  The show airing that evening had LCA in the storyline!  Can you imagine.  I don’t follow the show, but a woman is pregnant, and they are testing to see if their unborn child has LCA.  Does anyone know how they find out that the mom is a carrier?  That struck me as odd.  But then again, I don’t follow the show, but am happy to see LCA get some exposure, since it is so very rare.

The full episode can be seen here:

http://www.fox.com/bones/full-episodes/

We had a great evening!  My dad and my mom #2 were also invited.  FFB wanted to make sure my parents saw their daughter speak.  How awesome are they?  I truly have a family in FFB.  I adore who they are, what they do, and their outreach with family.  It’s definitely an organization I am tied to, even though we will push forward with our LCA Research and fundraising.  We will always represent, donate, and help FFB with all they ask of us! 

Thank you Foundation Fighting Blindness!  I am honored and humbled to have shared our story on such a special and memorable evening for so many.