National Family Caregivers Month – Supercharge Your Caregiving

Just wanted to celebrate November as National Family Caregivers Month and honor all the caregivers out there.  I am a caregiver to my daughter.

https://caregiveraction.org/national-family-caregivers-month

 

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Design Frustrations

Do you ever think you have a good idea only to find out that someone has already created it and trademarked it?  In some ways, I think snapping a photo is easier because that is already your copyright.  Even writing words seems easier at times.  That is why I like writing my opinion because that can’t be copyrighted.  Well, at least I don’t think so.

I understand people wanting to protect their designs and creations, but on the other hand soon you won’t be able to say a particular word or phrase without paying the copyright “owner”.  I find that annoying.

Part of this is because of the exposition of the internet and that makes the world seem smaller in some ways (six degrees of separation).

How can you be original?  Then if you are original and create a work truly in isolation, only to find something was already done on the internet; what do you do?

Signed,

Creatively frustrated and annoyed (or maybe my off emo day) ~

8X8 Foam Board Photo Mount Project

 

In this simple video I demonstrate how to mount 8X8 photos on black foam board to be mounted on the wall.

For this project you will need:
8X8 Photos
8X10 Foam sheets (Gator Foam) I used 3/4 inch black foam board
Ruler
Exacto Knife (Adult project. Be careful and use at your own risk.)
Spray Adhesive
Command strips to mount on wall

www.Foamboardsource.com – Where I purchase my gator foam.

www.costcophotocenter.com – Where I got my 8X8 photo print in luster finish.

Scotch Removable Mounting Squares

Consider donating to:

www.champ1foundation.org

Support Group:

www.champ1gene.com

Other Resource:

www.champ1champion.wordpress.com

Art Day.

 

This was my first art day in quite some time.  As this is the original purpose of my blog here.  I hope to improve my blog and refocus!  I really enjoy doing voice overs on the video.  It’s really fun.  Things will improve as I get assistance in the video department and then all I need to do is talk.  My husband says I put him to sleep when I talk to him.

lol.

Toodles,

Esther ~

Champ 1 Champion Blog

 

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Photo by Zoltan Tasi on Unsplash

I decided to create a separate blog for Champ 1 gene mutation.  Let’s see how that goes!  I primarily created Esther Bautista Designs to be my blog about art, but as I have ADD and am all over the place it has morphed into many things.  I have been severely creatively blocked recently, trying to go back to school to get an A.A. in Psychology, busy, and in a rut.  So I am not flowing as I would like.  However, everything is up in the air and I will go with the flow of what works vs. what is not working.

 

I wanted to bring awareness to Champ 1 gene mutation which is what my daughter, Bethany has, and to help do something with my fellow group of “Champers” within the support group.  Many of them are looking for research and a cure for Champ 1 gene mutation!  I am not an outgoing person or a fundraiser.  I do have somewhat of an ability to write!  I may not be a good writer, but I can write!

So for my fellow followers I would like to direct your attention to my new blog for Champ 1 gene information, support, and research.

www.champ1champion.wordpress.com

I am hoping to keep my Champ information to this site, however; I may still post Champ related info here from time to time.  I appreciate all of my followers and I apologize for my disjointed blog.  I still struggle with keeping the focus of my blog on one thing which I am told that is a very good thing to do!

Thanks for your support,

Esther ~

p.s. feel free to contact me if you have any questions…

Diagnosis: Champ 1 Gene Mutation

Diagnosis: Champ 1 Gene Mutation

by Esther Bautista 

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Champ 1 Gene mutation is a newly discovered mutation on chromosome 13q34 which causes intellectual disability and severe speech delay among other characteristics. My daughter Bethany was diagnosed 12 years after birth January 2015.  Up until that point we had been through numerous doctor visits with specialists such as: neurologists, genetics, and endocrinologists. She had undergone numerous genetics testing through UCLA and UCSF as well as through her local pediatrician.  And with the help of Julie Jones at Greenwood Genetic Center in South Carolina her Champ1 Gene mutation diagnosis was discovered. 

Now with our diagnosis we are somewhat relieved.  We have a label.  But what we do not have is a lot of information since this is a new genetic mutation.  We do have a parent network online to share information and support in our journey.  So far there are only 30+ Champs world wide.  

I would describe our Champs as on a spectrum like the autism spectrum with varying levels of ability.  Some Champs are diagnosed as autistic, but not all.  My daughter Bethany has autistic tendencies but does not have autism.  She is a very happy girl.  She is 14 years old and attends a special day class.  She loves playing with water, dancing, music, and eating!  Most of the times she has a very happy demeanor.  Very rarely she seems to be sad and she has a brief period in which she will cry.  But as I said these events are extremely rare.  

Bethany is non-verbal and in diapers.  She communicates to me by blinking her eyes.  One blink means yes.  We have yet to get the two blink down for no.  Sometimes she will say: “Momma, uh uh, up.”  But her speech is extremely limited.  A lot of time I am guessing as to what she wants.  She is not advanced enough for adaptive communication devices.  I try to give her choices such as showing her food options for meal times.  

Bethany was 8 years old when she first learned to take independent steps.  She can walk really well today, but has balance issues and can easily get off balance and fall.

Some other characteristics that are common in Champ 1 gene mutation are: microcephaly, hypotonia with motor delay, and facial dysmorphic features, and some seizures.  

Here are some very technical medial articles on Champ 1 Gene Mutation:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4564986/

https://ghr.nlm.nih.gov/gene/CHAMP1

Undiagnosed (Short Documentary)

Chasing Rabbits

Happy Easter! Jesus is still the reason for the season…

I am very introspective. I am still searching for something. Answers. Peace. Something.

What I realized is the most of my life I have been chasing rabbits. Dreams that were really just fantasies.

The dreams lead to disillusionment with life because life never lives up to a dream. And not all dreams come true…

Some people are born to sing. Some people are not. And it’s quite painful when you keep trying to do what you were not created for.

This has been me. Always wanting the spotlight, stardom, or fame. Thinking that somehow that will bring value or validation to who I am.

Don’t get me wrong, I still struggle everyday. But at least I realize I’m chasing rabbits again!

Trying to hold on to something as if it’s eternal when it’s not.

What I want / need is something eternal that can never be taken away. I want a value on my life or to value my life.

God said He loves me. And so much that He gave His one and only Son to die for me so that I could be forgiven and have a relationship with Him that can not be broken.

This is the eternal worth that I look for and only need to accept.

I still have questions. And that’s okay. Humans are curious creatures.

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Photo by Francis Delapena on Unsplash

Creative Blocks…

I have been very much creatively blocked recently.  I’m trying to remember when this all began.  As a creative, I tend to feel things too deeply and take things too personally.  But I think my creative block has to do with my emotions and or a lot of negative emotions within me.

I don’t think I have a problem writing because I am very good at rambling in my blog posts.  But as to whether it is good or bad, I guess that is subject to opinion.

Somehow I must integrate the negative aspects of the past into my present so I can move past it.  It is difficult.  The emotions keep me blocked.  I would try to express them in some way but honestly artistically I am not producing anything of value. (I guess I say to myself. Perhaps others think it’s valuable. IDK.)

I did create a meme yesterday birthed out of cynicism I suppose.  But maybe cynicism is not a good producer of beauty.  Here it is:

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Okay, so yea…that is all I have produced creatively lately.  Sometimes I think of throwing in the towel on this blog.  What I realize is that I am not good at keeping my blog to the point for which I originally created it…and that was being creative!  And again, I reaffirm my commitment to not do anything for monetary recompense.  That never works out.  Money seems to ruin a lot of things, in my opinion.

I apologize to my audience, if I have one, for being so morose.

Does anyone have any requests? Comments? Etc?