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

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.

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.

BCLC Series–Peg dropping and pre cane

Today at Blind Children’s Learning Center, Gavin worked with pegs.  He did very great with transferring the pegs from one hand to the other, and then drop them into the drum.  (We use the drum, because it makes a distinct sound when something is dropped into it).  He picked up the peg out of the peg hole with the left hand, transferred the peg to the right hand and then drop into the drum.  His OT moved the drum from the front, to the back, and each time, he did fairly well listening to where the drum was and dropping the peg in.

Ultimately, his OT would like for him to get the peg, and transfer it in one hand (across mid-line) and drop it in the drum.  This technique is crucial to him utilizing his cane appropriately, with the long wide sweeps.

The transfer of one hand to the other, and listening to the where the drum is was a big leap.  He is using both sides of his body to complete a task.  For a child with no vision, using both sides of your body, while trying to accomplish something (as simple to us as dropping a peg into a drum), and keeping yourself upright and straight and balanced is quite a feat.  We use our eyes to stabilize our body, to keep us in balance.  Remove the vision, and you need your entire vestibular system to work together to keep this balance in tact.

Gavin dropping Pegs into a drum. Using balance, hearing, and hand transfer to accomplish.

The other part of his therapy today, was getting his tiny little hands ready for the cane.  He has his cane now.  His O&M brought it during our last visit, last week.  He is not ready to use it, but we are getting ready for that.  We have it hanging by the back door, so he knows, when we leave, the cane comes with us.  We are moving closer to having him find and pick up his cane on his own, when we leave somewhere, but still working on it.  Everywhere we go now, the cane comes with us.  Usually I’m the “cane holder”.  He really wants nothing to do with it, but as expected.

I talked on a previous post about “Pre Cane skills”.  He uses his little shopping cart at home.  At therapy, there is a different type of push cart they use for all the pre cane kiddos.  His thumbs still aren’t quite there yet.  It’s hit and miss.  Some days when he pushes the cart, his thumbs are in the right position, other times not.  You wouldn’t think, how much skill a little one needs to utilize a cane correctly – and not with bad habits.

Using a push cart, to help with Pre Cane development.

The other part of using the push cart, is just like the little shopping cart, or any push toy, the cart/toy will hit the wall before he physically does.  The same with the cane.  His cane will always hit something before he does, and so this is the same concept.  Teaching him how to manipulate the push cart, comes with time.  He is very confident behind the cart, and takes big wide steps, because he is understanding that he is safe behind it.  Backing up, and maneuvering it back and forth when necessary – is still something we are working on. 

Put him on a straight shot of cement, and he will plow you over!  He moves with such force, determination and confidence.  It’s great to see, because at this stage, he is very cautious and moves slowly through space when he is in an unfamiliar area.

Have I mentioned how great BCLC and his OT is?  They’re wonderful.  The other parents, and I, call his OT the “blind baby whisperer”.  She helps me to understand so much, and I am so grateful for her and the services they provide.

Gavin’s Pre White Cane skills

Gavin’s 24” white cane is on back order.  We should be getting it in the next few weeks.  Meanwhile, we have been working on skills to get him prepared for the day that he is introduced to it.  It has been a joint effort between his early intervention teacher, his Occupational Therapist and his O&M (Orientation and Mobility instructor).

Getting his little hands ready (strength wise), is key for him to be able to maneuver the cane appropriately, and not just whack his brother over the head.  Building up the thumb opposition strength, is one of the areas we were concentrating on.  Of course, we do this through play.  In the clinic setting with his OT, he loves, and I mean loves jumping on the tire.  It’s great, because he is getting the needed vestibular stimulation (by jumping), but he is also working on hand/finger strength (by tightly gripping the poles).  It is a necessary fine motor skill needed, to be able to sweep the cane from side to side.  Swinging in a swing, and holding the ropes, is also a good way to work on strength.

Another thing we tried is a very small shopping cart.  It’s a mini replica of a real, metal, shopping cart.  The idea behind this is, when he pushes the cart, the cart will bump into a wall, or hit a bump, before he will.  The same thing that his cane will do.  It’s the idea of maneuvering his body behind something.  He also loves the cart.  When we first introduced him to it, he took off!  It’s hard to now keep up with him.  When he bumps into something, he is learning to try to get around it.  He will back up, and try a different direction.  If we are at the park, and the cart goes off the sidewalk, and into the grass, he will try to pull it back, and change direction.  He does get frustrated, as he just wants to charge straight ahead, but he is getting much better.  It’s also a listening lesson for him as well.  He hears the words “stop” “right” “left” “behind” “in front of”, etc.  No, he does not understand them all (especially right/left), but it’s getting him familiar with the words.

Here is a video of him pushing his shopping cart.

This is also another pre cane toy he has, but right now he much rather prefer the basket.  He does play with it, but doesn’t push it around all too much. 

I have a feeling when he does get his cane, he will not want to hold it for too long, or not at all.  That’s just my gut telling me.  He still throws things to the side.  Yes, he is getting much better at placing things in front of him (in a bucket, etc), but newly introduced things, it is still taking him a while to get acclimated.  Of course, I understand this is all going to happen over time, and I am totally ok with that.  We are in no rush, but I am totally on board with introducing the cane early in life.  There are opposing arguments about when a cane should be introduced.  I weigh on the “earlier is better” side for many reasons.

I will do my best to update, and I will also keep the tally over how many times Landon, and the rest of us are whacked!

Kidding.  Maybe.

Blind Children's Learning Center

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

Adorable!

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

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

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

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