Not blind at heart

 

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

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

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.

Sunsets

Appreciate each other, like we appreciate a Sunset.  I have never seen a sunset, and wish there was more orange, more rays or more purple.  It is what it is.  Kind of makes you want to appreciate each other this way.  I heard this somewhere before, and it has always stuck with me.

We are who we are.  Through all of our activism to raise awareness, I am also happy to say I fully appreciate my son, just the way he is.  That doesn’t mean I don’t wish there was an option regarding his vision.  Nevertheless… these Sunsets are for Gavin.

They are taken by others (friends and family) for Gavin.

I treasure each one!  If you would like to share a Sunset, please email me.  I have an album on Facebook as well, where you can see descriptions of each picture.

The sunrise is Gods greeting - the sunset, his signature – Unknown

Peace... is seeing a sunset, and knowing who to thank.  - Unknown

Every time you wake up and ask yourself, What good things am I going to do today?, remember that when the sun goes down at sunset, it will take a part of your life with it. – Proverb

When I admire the wonder of a sunset or the beauty of the moon, my soul expands in worship of the Creator”

 

Even the most beautiful days eventually have their sunsets. – Unknown

 

 

 

 

 

All Children, Should be able to see a Sunset…

Gavin’s Genetic testing for LCA **Update**

We heard back today on Gavin’s genetic testing.  The results came back as we kind of thought “unidentified”.  As it stands right now, Gavin does not have one of the 17 known genes that causes LCA.

Since our results from the Carver Lab came back “unidentified” last year – my feeling was this was going to be the results.  BUT I did have some hopes, because more genes have been added to the panel, and I had some hope that one of those would be Gavin’s.

Where do we go from here?

Our DNA is being sent to China to have Exome sequencing done.  To not get too scientific, Exome Sequencing is further investigation of the DNA strands using a different method of identification.  I can explain it all here, but instead I linked it to Wikipedia if you wish to learn more.

This will take approximately 4 months.

I will update as I get more information.. but as it stands, hopefully over the summer we will have some news of Gavin’s genetic mutation.  Until then, we will keep doing what we are doing!  Pushing forward.  We do our part, and let the research scientists do theirs.  Might I add the Dr in Colorado has been WONDERFUL.  He is connected to the family on the other side of the DNA sample.  I cannot say enough about Dr. Chiang.

One of our things is the Irvine Lake Mud Run in April.  Are you signed up to run or volunteer?  Hope so!  We are the charitable beneficiary for 2011.

This is part of what we do.

Our story

I’m sorry to be loading you up with information with the recent posts.  I’m finding it easier to be able to blog about the majority of the questions we get, and share those links.  So, with that being said, here is another info post about our story.  I know friends and family know our story, but we have a lot of new supporters, that I think this will provide them with some insight.  I think it’s important for our supporters, new friends and anyone who cheers for us from afar, to know exactly what they are supporting and cheering for.

Thank you again for being here.  Let’s start with a little background.

Gavin was a challenged pregnancy.  We thought we lost him at about 9 weeks, then we were told we were in the process of losing the pregnancy.  Then I was told to be on bedrest until about 6-7 months.  It was a long, haul.  Up until he was considered "full term" I was so scared of losing my baby.

Gavin was born happy and healthy on Oct. 2, 2008.  I was having problems after the C-section, and taken away for about 8 hours until they can control all my vitals.  I saw him for 1 minute and that was it.  I was pretty drugged up, and they wheeled me off pretty quickly to try to control the situation.  When I finally was able to see him face to face, many hours later that night, it hit me.

I told Troy that something was not right.

He blamed it on the numerous of drugs I was on.  I did too.  The nagging, pit of my stomach sense that I had, that something was not right - didn't leave.  It held on, and none of my own convincing allowed it to take a back seat.  It stayed with me until we left the hospital, and days and weeks following.  I thought I was going crazy, and I also started thinking that something was wrong with me, and maybe it was from the months of worrying about every minute of the day that I was going to lose the pregnancy.  I truly thought I was headed to the white padded room with no windows.  I brought it up to the pediatricians, nurses.  Everything came back fine.  I knew his eyes weren't.

Gavin even passed every eye exam, at every well exam.

Everytime he did, I told them, "HE IS NOT OK!"  I wanted to scream!

Finally at 4 months of age, I was on my knees in my living room.  I cried the deepest cry I have ever cried in my life.  I needed confirmation for my son, or I needed medication for me.  Something was not right, and I felt like I was losing my mind. " PLEASE DON"T LET MY BABY BE BLIND" is what I repeated for about 5 minutes.  I picked myself up off the floor, called Troy, and told him to pick up Landon.  I needed to do something.

I called his pediatrician (whom I adore), and I told him I was on my way.  I informed them very urgently that they needed to see us, and I needed to talk to him AGAIN about his eyes.  I knew that would get me in the door, but I knew I was not leaving that office without a referral to a pediatric opthalmologist.  He sensed it, and wrote me the referral.

Two weeks later, it was confirmed.

Gavin was blind.  There was no cure.  

Gavin's pediatrician called days later, and told me how sorry he was.  Gavin was his first child who was blind, in his practice... and his first LCA patient.

That kind of sets the tone for the next few months.  The anger, sadness, frustration.  Everything I have felt since the day he was born - it was confirmed.  Honestly, I was a little bit relieved.  No, not glad, or happy.  But, FINALLY someone was listening, and there was something wrong.  Mind you, before we went to see Dr. Lee at Children's Hospital, we had no idea what it was.  Some sort of retina dystrophy, but was there an infection that caused his retina to look detiorated, was there something else wrong?  The word cancer and tumor and other awful possibilities were all brought up.  This went on for two weeks before we could see Dr. Lee.

I scoured the internet for information on retina dystrophies, and quit my job, all the same day.  I had just started working again, from home.  I feel like after the information that was given to me... this was going to be a long journey, and Gavin needed me more than I needed my job.

We found the Foundation Fighting Blindness.  They were having "VisionWalk" in a few months.  I had no idea what this was.  Troy and I talked, and that was the start of "Gavin's Groupies."  We needed to channel our sadness.  We needed to do something, and be a part of whatever this is that we are faced with.  We still didn't even know the name for sure - but we did raise almost $10,000 for the Foundation Fighting Blindness in 2.5 months!

We realized, this is the direction we want to go.  We want to challenge this disease, and use Gavin's name for more.  This is bigger than us; bigger than Gavin.  This is our opportunity to share our story, and raise awareness, and raise money for research.  We thought "We can do this."  It took over a year, because honestly I didn't have the mindset nor the fight in me at the beginning to take on a non-profit.  It took about a year, to let it all sink in.  We started the Gavin R Stevens Foundation in June of last year.  Our purpose is to raise money, and awareness.

Why did we start the Gavin R Stevens Foundation?

There are approximately 17 genes that cause LCA.  We don't know yet what gene mutation Gavin is affected with... YET.  We are in the process of testing.  Once it is identified, our hope is to start research on his genetic mutation.  This is where all the money we are raising is going to go.  We want to fund a research team to work directly on Gavin's type of LCA.  We are getting there!  We need to get his gene identified, and then can proceed with research.  The big focus is on the RPE65 gene - which has been HUGE!  Medical science reminds us that we can move forward with hope.  Eventually what we are doing will help Gavin, and others with LCA!

You are all part of something that will potentially change the direction of medical science and LCA.  We have a long ways to go.  There is a lot of work that needs to be done.  I always say, we may not be doctors or scientists; but we can do our job by raising money and raising awareness!  Troy and I envisioned this, and it’s all unfolding before our eyes, although we didn’t have the strength to work on this until Gavin was a year old.

We are beyond blessed to have you support directly, or afar.  To cheer us on, or to share our story and our links.  The numerous emails that I receive of support, or of fundraising you are doing to help us - is incredible.  ALL the money is going to research!  You are a part of this journey with us, and a reason behind one day, Gavin possibly having some vision in his life.

We couldn't be more proud of our friends, family and those that have already made a difference in our lives.

I have sadness for my son.  I have hope for my son.  Because of all of your support, I have gratefulness overflowing in my heart.  Thank you for learning about our story.  The very fact that your interest lies in our little boy, makes us proud, humbled and feeling like we are truly making a difference.  With your help, I know we will.

www.gavinsfoundation.org

www.tourdesight.org

What is Leber’s Congenital Amaurosis (LCA)?

Thank you to the Foundation Fighting Blindness, for providing a great explanation of LCA.  More information is on their website.  Gavin was diagnosed at about 4 months of age with LCA.

What is Leber Congenital Amarosis?

Leber congenital amaurosis (LCA) is an inherited retinal degenerative disease characterized by severe loss of vision at birth.  A variety of other eye-related abnormalities including roving eye movements, deep-set eyes, and sensitivity to bright light also occur with this disease.  Some patients with LCA also experience central nervous system abnormalities.

What are the symptoms?

Individuals with LCA have very reduced vision at birth.  Within an infant’s first few months of life, parents usually notice a lack of visual responsiveness and unusual roving eye movements, known as nystagmus.  Eye examinations of infants with LCA reveal normal appearing retinas.  However, electroretinography (ERG) tests, which measure visual function, detect little if any activity in the retina.  A low level of retinal activity, measured by ERG, indicates very little visual function.  ERG tests are key to establishing a diagnosis of LCA.

By early adolescence, various changes in the retinas of patients with LCA become readily apparent.  Blood vessels often become narrow and constricted.  A variety of pigmentary (color) changes can also occur in the retinal pigment epithelium (RPE), the supportive tissue underlying the retina.  Sometimes, pigmentary changes are similar to another retinal degenerative disease known as retinitis pigmentosa.

Although the appearance of the retina undergoes marked changes with age, vision usually remains fairly stable through young adult life.  Long term visual prognosis remains to be defined.  Visual acuity in patients with LCA is usually limited to the level of counting fingers or detecting hand motions or bright lights.  Some patients are also extremely sensitive to light (photophobia).  Patients with remaining vision are often extremely farsighted.

Many children with LCA habitually press on their eyes with their fists or fingers.  This habitual pressing on the eyes is known clinically as oculo-digital reflex.  The eyes of individuals with LCA also usually appear sunken or deep set.  Keratoconus (cone shape to the front of the eye) and cataracts (clouding of the lens, the clear, glass-like structure through which light passes) have also been reported with this disease.

In some cases, LCA is associated with central nervous system complications such as developmental delay, epilepsy, and motor skill impairment.  Because LCA is relatively rare, the frequency of central nervous system complications is unknown.

Is it an inherited disease?

LCA is most typically passed through families by the autosomal recessive pattern of inheritance.  In this type of inheritance, both parents, called carriers, have one gene for the disease paired with one normal gene.  Each of their children has a 25 percent chance (or 1 chance in 4) of inheriting the two LCA genes (one from each parent) needed to cause the disorder.  Carriers are unaffected because they have only one copy of the gene.  At this time, it is impossible to determine who is a carrier for LCA until after the birth of an affected child.

Are there any other related diseases?

Initially, LCA can be confused with early onset retinitis pigmentosa (RP), congenital and hereditary optic atrophy, cortical blindness, congenital stationary night blindness, flecked retina syndrome, and achromatopsia.  Although similarly named, LCA should not be confused with Leber optic atrophy.  In addition, there are syndromes seen in infancy where visual impairment is a component.  A thorough ophthalmologic examination including diagnostic tests measuring retinal function and an accurate documentation of family history can distinguish between these related conditions.

What treatment is available?

Scientists have identified 14 genes with mutations that can each cause LCA.  These genes account for approximately 75 percent of all cases of LCA. With this information, scientists are better equipped to develop preventions and treatments.

Clinical trials of gene replacement therapy for LCA caused by mutations in the RPE65 are now beginning. It is the same therapy that gave vision to 50 dogs, including the world-famous Lancelot, born blind from LCA. These studies provide extraordinary promise for eradicating LCA caused by RPE65, and eventually, LCA caused by other genetic variations.

Some individuals with LCA, who have remaining vision, may also benefit from the use of low-vision aids, including electronic, computer-based and optical aids.  Orientation and mobility training, adaptive training skills, job placement, and income assistance are available through community resources.

That’s how I roll

Dad’s iPhone (with my own playlist that is getting really old).

Juice (mom thinks I don’t know she still gives me mostly water.  Hmpfh)

Bagel with light butter (in little pieces so I take longer to eat.  Hmpfh)

They think I have not caught up with their tricks.

I will show them when I don’t take a nap when I get home.

Love,

Gavin (AKA The Hulk)

Genetic Testing Update

I have not talked much about genetic testing lately, as I don’t feel like being so negative on this blog. If there is one thing that infuriates me, it’s insurance. Yes, a must-have, but we have got the run around. No, this is not a life or death situation, but frustrating nonetheless.

Gavin’s ERG took almost 8 months to clear, and our Dr had to fight for it.

Really?

We’ve waiting 1 year for the results from the Carver Lab, in which the gene was not identified.

Last July ‘10 we started the interest into looking to another facility to do genetic testing, we are now in March ‘11.

Now, we have been getting the run around, to cover the genetic testing at another facility. We were so close to just paying it ourselves.. but I didn’t want to give up the fight, in which the battle was half won. They approved, they denied, they needed more information. They approved, they withdrew, then the day of the last time we were to go give our blood sample, we got the call that they denied AGAIN.

Really? That was 3 months ago.

Leads us up to today. Finally we were told to go to Children’s Hospital and give our blood, and go through the copious paperwork. We were the first family who has pursued further genetic testing at this facility (from Children’s Hospital LA), so this was new to our Dr, and the great nurse that helps us with EVERYTHING. Thank you Kathy

We did that this past Monday, and we may get preliminary results today… 3 days later.

The fact that we are at this point, is a relief. I have doubts, but yet stay positive with identifying the gene. We know that it may not come back identified, and have to pursue other avenues of testing. Which is fine. The fact that, as I type, our blood work is being worked on… is a relief in itself. We’ve been waiting for this, since Gavin was 4 months old, and diagnosed unofficially. I sigh an ever greater sense of relief, because I know if and when the Dr. identifies anything, he will call me. He keeps us updated; returns phone calls/emails immediately, if not, within an hour. Thank you Dr. Chiang!

I will update as soon as we hear something. Thank you for your continued good thoughts with this. It has been a struggle. I know this can be said for many individuals who play the waiting, run around game when it comes to approval, referrals, etc. I am speaking for everyone when I say – Really? Having to deal with it on the other end, when it’s your child, makes it even more grueling.

… and so we wait

Patiently!

We have an update to the results of this testing, if you are interested.

Click HERE

BCLC Series - Climbing up the stairs

Sorry for the lack of updated videos from Blind Children’s Learning Center.  I am trying to post what I can, and actually have a few half-written posts that have not been published yet.  Those will be up soon.  I do appreciate how these videos are helping others out there – I promise to return the emails!  The whole purpose of this blog, when I started it, was to share Gavin’s story, but also help others learning about our unique story.  I’m glad to be able to not just help one person, but many!

We are continuing to work with Gavin on getting him confident moving in space.  This is a general feat, but it is something that will link over into everything he does.  If he feel comfortable and confident, taking on new tasks or entering an unfamiliar area will allow him to feel better about himself when he explores.

We are also continuing to work on object permanence with him.  I truly think he gets it, but some times I wonder.  He doesn’t tend to go after things.  Yes, we totally understand this may be due to the blindness, but even in eating situations, I am still seeing that he is lacking in this area.  A good area where we are working with this, is him playing catch with his brother with a basketball.  I have to tell Landon to let him find it… and some times he does.  It’s a fun interaction game between the boys, and it’s teaching Gavin at the same time.

Back to climbing up the stairs.  We have stairs at home.  The majority of our living is downstairs.  Upstairs are the 3 bedrooms and the 2 bathrooms.  Every chance we get, when we go upstairs, I try to not just scoop up Gavin and carry him (which is sometimes much easier).  We are trying to get him to walk up the stairs by holding one hand on to mine, and the other he trails the wall.  He does it 50% of the time.  We are not quite to the point of where he crawls up the stairs.  He has zero interest.  He actually will stand at the bottom of the stairs and say “I want to go up the stairs”.  He will wait until someone comes and guides him.

At therapy the other day, we worked on the stairs, and he did it.  There was some hesitation, and at the top of the stairs was a toy – so he was enticed.  But nonetheless, he DID IT!  I love these moments of challenging times for him, and a sense of accomplishment he must feel when he is pushed out of his comfort zone, but yet, crosses a hurdle!  He did it all by himself.  I’m a proud momma.

Gavin crawling up the stairs at Blind Children’s Learning Center

Why does Gavin wear glasses if he is blind?

This is from a NOTE that I posted on Gavin’s Groupies FB page.  I have had numerous questions about this, so thought I would try to explain in detail.  I’m still learning about the eye pressing, from dr’s, other parents, and therapists.  So, this is just from information I have gathered, obviously I am not an expert in this – it’s my observations and learning experiences from raising Gavin!

I get this question a lot, and I know many more would like to ask, but maybe think they are out of place by doing so.  I want to first state, that we are an open book!   We are putting Gavin's story out there for others to learn about Leber's Congenital Amaurosis, and blindness.

If you have a question about Gavin, our Foundation, LCA, or anything related - PLEASE ASK!  Email me, ask on Facebook, or ask me in person.  Those of you who know me, know that I am always willing to load you up on information!

Many individuals with LCA (and other retina degenerative diseases) wear glasses. Some, do not.  Many individuals who have LCA, are not all completely blind. Some are.  I can't speak for everyone, but in Gavin's case, he is totally blind.  In my heart when he was months old, I thought he had some peripheral vision.  That has since deteriorated, or he never did have it.  It's hard to tell with babies & children as they don't have a point of reference of what vision is and what they are supposed to be seeing.  The dr's can give you an idea of what they think, based on what the eye tells them.  The rest is what the parent thinks.

It was a hard day when I finally let it hit me, his peripheral was gone, and possibly his light perception was little to non-existent.  Some days I think he has minimal light perception, other days I thnk he has none.  But I did give up on trying to figure it out, because it can drive you crazy (and it was).

LCA is a degenerative disease, and there is no time table to tell you how degenerative it is in each case.  It is so different from one individual to another.  A lot that is determined upon which gene mutation you have.  In Gavin's case, we are still fighting to have his identified.  As of now Gavin's gene mutation is in the "unknown category".

Ok, back to Gavin's glasses.

• Gavin's glasses are NOT prescription
• They are transition lenses (he can have photophobia)
• The main reason he wears them is to stop the eye pressing/poking/rubbing

Many individuals with LCA press their eyes.  It is thought the more severe the vision impairment, the more of an eye presser you are.  Gavin has been pressing his eyes since he was a few months old.  We were told early on by his dr., to try to get him to NOT press/rub his eyes.  We learned the hard way, and honestly this was a full time job for many, many long months!  He goes through phases where the eye pressing/rubbing and poking is better than others.

When Gavin is getting good vestibular input, his eye pressing is less.  But nonetheless, the phases still occur.  He was in a very difficult phase a few months ago.  He ripped his glasses off every chance he could - hundreds of times a day. Hundreds of times a day is not an exaggeration.  He would poke his eyes to the point where half of his little finger was in his eye socket.  We were left with the effects the next morning, with dark black eyes and sunken in eye sockets.

He is in a good phase right now, and only rips them off a few times a day.  This has left his eyes looking less sunken, and no black eyes!  Yay for good eye-pressing phases.

He presses/pokes his eyes, and it looks painful if you have seen it.  It is thought to actually feel good, and is giving his retina the stimulation it needs, since it's not getting it from vision.  It is feeding the part of the brain the stimulation it is desperately seeking, since the vision is non-existent.  There are many opinions on this, as some others say they "see white lights" when they press their eyes.  I will not know what Gavin's case is, until he is old enough to fully communicate with us.  Even then, he has no point of reference.

So, he will probably always wear glasses!  They are to protect his eyes.  We don't want the cornea to become damaged from eye pressing.  The need to eye press will probably always be present in his life, but as he gets older, he will begin to understand that it can do harm.  Today, he doesn't understand that.

Gavin with his first pair of glasses, the first day he got them. – 6 mos old.

Say it isn’t snow

Taking advantage of a 4 day weekend is always a good thing. 

A long weekend in the snow is a change of scenery for sure!

It was Gavin’s first experience with snow.  That’s the great thing about living where we live… you are a short 40 min drive up the mountains to the snow, or a 40 minute drive to the beach. 

We had the “snow turning to ice snow” when we got there.  Then that night, we got a foot of snow, and had the “snow soft as baby powder, can barely feel it in your hand” snow.”

The boys had a blast, of course snow ball fights and snow wrestling were hits.  Gavin wasn’t too interested.  He felt the snow, and wanted to go back inside to the play with the “dabinets” (cabinets).

Our cabin is surrounded by windows, and it is set deep inside the woods.  You have trees completely surrounding you – it’s so pretty.  I would be lying if I said that waking up to this

 

…didn’t make me weep like a baby.  All those feelings I keep under wraps, always surface when the beauty of nature hits me. 

These are things that I will have to learn to try my very best to explain to Gavin.  He can feel snow, but how can I convey the beauty of the white blanket that covers the mountains?  Waking up and glancing out our bedroom window to a white wonder – made me cry. 

And cry.  And cry. 

Troy walked in, and it’s these moments he doesn’t even have to ask why I’m crying.  He knows, because he feels it.. and I can see his eyes well for the same thing.

Gavin is as happy as can be, he knows no different.  But I ache, cry, and am sad for my son’s inability to visually see the majestic beauty of our world.

I’m so glad we opted out of a Disney weekend, for this.  We spend 3 days every year at Disneyland – since we have season passes, it’s not that expensive.  It’s a little escape for us, and it’s nearby.  We do it in October (not because it’s my favorite month – and am obsessed with Halloween or anything), but I have been hearing it from Landon that we skipped this past October.  I’m glad they were all in for a snow trip instead.

It was, as always, a happy-yet-bittersweet-weekend all in one.  These moments come and go, all day.  It’s never not on my mind, but I don’t allow it to occupy all my thoughts.  We have so many reasons to be so grateful for our children, life and Gavin’s ability to feel our love.

But I would be lying, if I did not tell you that my sadness for Gavin is ever present is our lives.  The darkness he lives in, day and night.  The snow, the sunsets, the trees and the ocean are all reminders. 

And again, I find peace in the quote:

“The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.”

And we move forward….with our hearts full of love, because there is so much to be grateful for.

Like Gavin “honking” his dads nose when he holds him.