My Princess - My Everyday Light

Welcome to our 3rd Annual Salute to Rett Dads! Each day this week leading up to Father's Day, we will share a blog written by a father of a girl suffering from Rett Syndrome. Later in the week we will share a video slideshow of over 100 dads with their beautiful girls.

Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

Other blogs this week:

Rockin' Out in Rettville - by Eli Callaway

Inspired by Catherine - by Gordon Christie

Superpowers - by Jeremy Springhart



Written by Juan Diego Perez

What a blessing it is to carry your newborn child. That was my first feeling when I carried my princess Luz Viviana for the first time. I didn't know it at first but she has been my inspiration and strength from the day she was born.

My Luz has been through so much since the day she was born. From meconium aspiration, milestone delay, seizures, to the most recent having a g-tube. This little girl has taught me that there is nothing more important in this life than family. Since the day we found out Luz had Rett Syndrome, we have been closer than ever. Our love towards her has been so big that she sees it in our actions.

I knew I would be her voice. My love, support and dedication has made my princess a strong warrior. Her determination to overcome every obstacle is just amazing. Of course, there are some issues that will never go away, but she will have us here to support her in everything she needs.

There is nothing I wouldn't do for my Luz. I know she will never give up and nothing is impossible for her. Seeing her smile and tap away is enough to keep me strong and continue every single day. My Luz is the light of my heart and soul. Without her everything would be very different.

Superpowers

 

 

Welcome to our 3rd Annual Salute to Rett Dads! Each day this week leading up to Father's Day, we will share a blog written by a father of a girl suffering from Rett Syndrome. Later in the week we will share a video slideshow of over 100 dads with their beautiful girls.

 

Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

 

Other blogs this week:

Rockin' Out in Rettville - by Eli Callaway

Inspired by Catherine - by Gordon Christie



 

Written by Jeremy Springhart

I am the proud father of two wonderful girls. Carly is six and Brooklyn is five. Brooklyn was diagnosed with Rett Syndrome in 2011, on Good Friday. Needless to say, there was nothing good about that Friday.  I was told how Brooklyn would lose her ability to walk, talk, use her hands and read like all of the other children. In one very solemn afternoon, I learned all of the terrible things that were to come.

Unfortunately, the doctor overlooked one very important detail about Brooklyn that day.  I did not learn it until years later.  Brooklyn is gifted.

Brooklyn is not an ordinary child.  When her eyes meet yours, there is so much she can tell you.  While she would love to be able to speak, she does not need words.  With one stare into your eyes, she can tell you whether she feels pain, sadness, happiness or hunger.  It is a sort of superpower.
 
Her stare is not Brooklyn's only superpower.  She can also melt your heart with a single smile.  There is no hiding it.  She is happy.  She feels great, and so will you.

Brooklyn has taught me that life is not always fair, and to do the best with what you have.  She never gives up.  She enjoys life while patiently waiting for a cure. 

The scientists are so close to unlocking this puzzle - one defective gene, one dreadful mutation.  It might sound naïve, but I know one day Brooklyn will be cured from Rett Syndrome.  She will run fast and far.   I will have a tough time keeping up with her.  So, in the meantime, I am just going to appreciate my time with Brooklyn, and those precious stares and smiles.

 

Inspired by Catherine

 

Welcome to our 3rd Annual Salute to Rett Dads! Each day this week leading up to Father's Day, we will share a blog written by a father of a girl suffering from Rett Syndrome. Later in the week we will share a video slideshow of over 100 dads with their beautiful girls.

 

Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

 

 

 Written by Gordon Christie

Catherine was diagnosed with Rett in 2004, at the time the diagnosis came as such a relief. Catherine had been having a tough time getting nutrients from her food and was barely over 20lbs at the time. She was getting her G-Tube installed after going through the feeding via the tube through her nose torture period.

Things went from well she definitely had something different diagnosed every few weeks to becoming involved in the most wonderfully supportive Rett Family of people in New Jersey. I'm generally optimistic about things so I saw all the happiness in the Rett Families we met and was comforted in many ways.

Several bouts of Pneumonia with Catherine turning blue at times accelerated our move to Texas and I was all for a move to somewhere warm. The warm weather re-ignited my desire to run as I used to do before I left Scotland for America in 1996. It wasn't long before Catherine and I were participating in 5K's and Half Marathons. Catherine enjoys running with the wind in her hair and fully expects me to be competing if not for overall top 3 then for at least some kind of age group award. Luckily we have always managed this.

As of this year, I have run for Team Rett in the Boston marathon 4 times, raising a lot of money to be used for clinical Trials. Catherine's running highlight was of course being infamous at the Princess Half Marathon and being hauled off the course after only a few miles, Catherine enjoyed this even more than running.

Catherine never lets me settle with participating in easy races or slacking off while training for such events [I'm sure she talks to me subliminally while I'm running]. When I hit 40 in 2010 I decided that a Marathon would be sufficiently challenging to do. I have since completed 30 and twice been Texas State champion: once in the overall division and once in the over 40's while wearing a pink tutu and a pink cape with Girl Power to Cure badges on it. 2011 was my first 50K though it took me 2 years to finish my first 50 Mile race. Me falling 8 to 10 times on such a trail race was pretty much my normal, fortunately I only ever broke one rib so far. This year I did my first half and full Ironman Triathlons, who would have thunk I could swim after all.

I'm ever so happy that Catherine is in a good spot with her health over the last 12 months and could not ask for more than for that to carry over to the next 12 months. I promised her I would drop 15lbs and become competitive in this triathlon thingy that I'm so new to.

I can't wait to see what crazy things Catherine inspires me to do over the next year.

Rockin' out in Rettville

Welcome to our 3rd Annual Salute to Rett Dads! Each day this week leading up to Father's Day, we will share a blog written by a father of a girl suffering from Rett Syndrome. Later in the week we will share a video slideshow of over 100 dads with their beautiful girls.

Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

Written by Eli Callaway

After three boys I was losing hope of fulfilling my wish to have a daughter. The idea of a little girl to "protect." The idea of chasing away boys and one day sending her off into the world.  Tea parties, glitter, learning to do hair and nails all of these were yet daydreams. Until my Bliss came to us. Elianna  Bliss. My perfect brown eyed angel. My time in Perfectville did not last long.

At not even two months old my Bliss was taken into surgery for herniated uterus and fallopian tube. Everything turned out fine. Slowly oddities crept into her. She was not a good sleeper. She was allergic to cow's milk. Cuddling seemed to frustrate. Most troubling was the awful look she would give to people. She acted as though she wanted  to talk and walk. At one year old we were content on moving from Perfectville to High­Maintenanceville. After all, this was my Bliss. She was worth it.

The next six months were a bright flash, and bang. How did we get to Autism Land. A blur of therapy and more therapy. Strange people always trying to help my little girl. My little girl that wouldn't stop screaming. As a Dad, Autism was a challenge to fight. I can do something about this. More therapy, more books, and more blogs. And this entire time my Bliss is slipping further and further away from me. Endless days listening to my beautiful daughter scream. Nothing was working. I had put all my hope into getting out of Autism Land. I was slapped  in the face to learn we had misread the signs. Our sign read, “Welcome to Rettville.”

As her regression slowed, my Bliss came out from her shell. During the time that I felt completely helpless as a father, my daughter started to laugh. And continues to laugh a lot. She lights up around people and wants to play. From absolute misery she has given me true bliss. Rettville is not the funnest place. Unlike other places, in Rettville many choices now are easy. Quitting smoking was almost easy. My family is stronger and more compassionate. We are Team Elianna, rocking out in Rettville!

Holiday Gift Ideas 2013!

It's here!!! RettGirl.org's 2013 Holiday Gift Ideas!

We have had so many of you ask us about this year's list, and we are so excited about the great things that have been put together here.  There's really something for everyone regardless of your Rett Girl's abilities or age I think you'll find something great here that she will just LOVE! 

This year we have adopted the gift giving philosophy of  "Something to wear, something to read, something you want and something you need."  Plus, we have ideas of how to incorporate fun outings as gifts that can come from mom and dad, aunts and uncles, Grandmas and Grandpas or anyone!  And we didn't forget the stocking stuffers!!!  

Many of the products can be found in Amazon Smile's new charitable site! We have linked them there to make it easy for you! If you designate Girl Power 2 Cure as your charity when you purchase through Amazon Smile, Girl Power 2 Cure will receive .05% of the proceeds.

Something to Wear:  

Adorable Apron:  For ages 4 and up, this is a great way to get your Rett Girl in on some of the Holiday baking!

Herbal Warming Scarf:  This all natural herbal scarf can be warmed in the microwave before heading out to the bus for school! 

Hat with Built in Speakers:  Keep your Rett Girl warm and looking cute with this great hat with built in speakers, just hook up her mp3 player and she's can listen to her music or audio books while out and about this winter! 

Knit Leg Warmers for Girls:  These are soft, adorable and are one size fits all for girls size 4-16.  

Headphone Earmuffs:  Super soft earmuffs with earphones hidden inside.  

Something to Read:  

The I Like Book: Make a new tradition to snuggle up with your Rett Girl and share something you love about her by jotting it down in her book.  A keepsake to cherish forever!

Read With Me Violet:  This cute puppy pal makes reading fun with five interactive, read-aloud books narrated by Violet. Violet responds to every pet, pat, hug and kiss—press a button on Violet’s collar to start reading and pat his head to turn the page.  Violet sings, cuddles and plays lullabyes too!

Turtle Books: TURTLE BOOKS fill the missing gap in children’s literature. Now you have easy-to-read books that honestly talk about what it’s like to be a child with a disability. Warm, colorful illustrations and simple, beautiful stories offer insights in dealing with children who have physical and mental disabilities.

Audible: This company is run by amazon so it's nice and secure.  There are lots of audio book apps these days but this one offers a HUGE library of books from children's to teens to adults and you can customize your membership.  Listen anywhere with android, iPad or iPhone.

Something you Want:  

Touch Magic By LeapFrog:  There are a few versions of this Touch Magic Board from Leap Frog. Takes no effort to make these boards come to life. The surface is completely smooth, no matter where it’s touched it will make sound or music. 

Butterfly Lights:  These lights are perfect for dressing up your Rett Girl's room or hanging in a special spot!
  
Wheelchair Accessory for Dolls:  Your Rett Girl's favorite doll can be just like her with this doll wheelchair.  

Giant Step-On Keyboard:  Great sensory input for our Rett Girls who are able to walk or crawl or who are still learning!  

Just Me Music:  Personalized CD's or DVD's that sing or say your Rett Girl's name!  

Giant Butterfly:  Beautiful hanging butterfly perfect for your Rett Girl's room.  

The Talk Back Mimicking Doggie:  Reward every sound your Rett Girl makes, this cute dog repeats everything in a cartoonish voice.

Butterfly Wind Spinner:  This is a beautiful wind spinner that works with the wind alone outside or enjoy it during the colder months by bringing it inside, Hang it indoors with this battery and watch it spin for hours.

Touch Magic Guitar:  The slightest touch will get this guitar rocking!  

Glow Worm:  This classic glow worm provides comfort at night.  Or check out this adorable Jumbo Glow Seal!

PicWits! Card Game:

Time to get social! Funny photos and caption game! Perfect for eye gaze and switch communication.

Big Hugs Elmo: This amazing hugging Elmo also sings, sleeps gives imagination activities and more!

Something you Need:  

Himalayan Salt Lamp:  To naturally purify the air in your Rett Girl's bedroom or favorite room of the house.  

Fun Bed Sheets:  Everyone needs new sheets, but these are perfect for a princess!!  

Towel Warmer:  Imagine getting your Rett Girl out of the tub and wrapping her in a heated towel.  

Big Mouth Bib:  This is a great, fun bib that catches EVERYTHING!  

Stocking Stuffers:  

Light Up Shoelaces

Personalized Spinbrush

Bow Holder

Purple String Lights

Knot Genie Brush
 
Girl Power Flower Zipper Pulls

Friends and Family Get Creative

Instead of the typical gifts this year how about giving the gift of your time and friendship:

• Give your special Rett Girl a gift certificate for two movie tickets and let her pick a date for both of you to go.
• Make a home made card with a "coupon" for her to use to go to her favorite restaurant with you.
• Build a movie night basket with her favorite snacks, a blanket and a DVD, then set a date to come over and watch it with her.
• Give her a gift card to your special Rett Girl's favorite store then take her shopping so she can pick out exactly what she wants.
• Create a coupon book for your special Rett Girl filled with things she likes to do, such as: going to the zoo, sleepover, baking, etc. and allow her to "cash" in on them all year long. Whenever she cashes in on a coupon you come over and spend time doing the activity she chose.  

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Visit the GP2C Shop to get T-shirts, decals, fleece, tumblers, buttons and more!

Check out our HOLIDAY TIPS for a less stressful season

Visit our Holiday Gift Ideas from previous years:

Holiday Gift Ideas - 2012

Holiday Gift Ideas - 2011

Holiday Gift Ideas - 2010

Holiday Gift Ideas - 2009

Can Salt Be Healthy?

What is Crystal Himalayan Salt?  

Crystal Himalayan Salt is a type of salt mined from salt mines in and around Pakistan.  This crystallized salt, because it's mined deep in the earth, has not been exposed to environmental toxins that are usually found in Sea Salt.

What's Wrong with Table Salt?  

Typical table salt goes through a chemical process to "clean" it. The problem is that this process also strips the salt of all of its minerals, and the final result is simply sodium and chloride which causes all sorts of issues in our body.  When we ingest table salt from either processed foods or from the salt shaker our bodies recognize it as foreign and tries to eliminate as soon as possible.  In order to do this our body goes through a natural process of trying to neutralize the sodium and chloride by pulling water from our cells, these cells can actually dehydrate and then die.  Over time the salt can cause all sorts of health issues such as hypertension, gout, arthritis, and kidney and gall bladder stones.

What Makes Himalayan Salt Different?

Once the Crystal Himalayan Salt is mined it is cleaned and minimally processed so the natural elements and trace minerals are preserved.  The result is a natural, pink colored crystal that contains 84 essential elements. These elements are naturally found in your body so when you ingest it your body recognizes it as nutrition and breaks it down much easier, without the use of excessive water from cells, and distributes the nutrients throughout your body rather than trying to eliminate it from your body.  

What are the Health Benefits of Himalayan Salt?

Because of all the essential elements and minerals that it contains, Himalayan Salt can have many health benefits such as:

• Improving circulation
• Strengthens bone structure
• improves sinus and congestion
• helps to balance blood sugar levels 
• hydrates and promotes a healthy pH balance in your cells
• Improves blood pressure
• Helps maintain muscle tone and strength while eliminating muscle cramps

How do I use Himalayan Salt?  

There are many uses of Himalayan salt and you can get it in many different forms.  

-Larger crystals are usually used in salt baths sometimes called "brine baths".  These brine baths use about a pound or more of salt mixed with very hot water.  The result is a very strong detox that can be beneficially in removing impurities and improving vascular  health but can also be dangerous to those who have high blood pressure or more delicate systems like our Rett Girls.  Instead, try adding just a small amount of salts (a few teaspoons) to her bath, making sure they are completely dissolved and keeping the temperature at a comfortable level for her.  Our skin is the largest organ in our body, sitting in this bath for 20 -30 minutes will give her body enough time to absorb some of the essential minerals. 

- Himalayan Salt can also be used to make "sole."  Sole is essentially salt mixed with water until it is saturated and no more salt can be dissolved in the water.  The sole is then used to make sole solutions which are different concentrations of the sole that can be used for various different things such as a sinus cleanse, mouth wash or even a drink to replenish your electrolytes.  You can find out more about Sole Solutions here:  

- The easiest way to benefit from Himalayan Salt is to just use it in place of your cooking or table salt.  You will be eliminating the harmful salt AND gaining the health benefits of Himalayan salt without changing much at all. Please remember that Himalayan Salt still contains sodium so while it's healthy in moderation you don't want to overuse it.  The USDA recommends no more than 2500 mg. of sodium per day.  

Himalayan Salt can also be turned into a salt lamp.  These lamps are thought to purify the air by neutralizing positive ions.  They have also been studied to help alleviate the symptoms of asthma and allergies.  You can find out more about Himalayan Salt Lamps here.

Will Our Rett Girls Benefit From Himalayan Salt?

Many of our Rett Girls have digestion issues which can cause malabsorption of many minerals.  Without absorbing essential minerals our girls are at a much higher risk to experience health issues (see the health benefits list above).  Adding Himalayan Salt to their diet can supply our girls with the trace minerals that their bodies may be lacking and in turn may help to ease some of their symptoms.

PLEASE NOTE: Although this is a very safe and natural product it is always best to check with your Rett Girl's doctor before trying anything new.  

Team Spirit!

Feeling disconnected with the people working with your daughter? Want them to feel more comfortable around you? Need something besides cookies to bring to an IEP meeting to get things off to a good start? Looking for something to give out for Rett Syndrome Awareness Month this October?

BUTTONS!

Yes. Buttons. We've see it work first-hand. We've got them in our store and will customize them for you!

Give a team button to everyone who attends your daughter's IEP meeting - and then give out more. The therapists, the special ed teacher, the aides, the school nurse, the bus driver, the principal, the school guidance counselor.

Bringing on that team spirit will give you a better chance at team work. The buttons will remind them they are all part of a team that should be looking for wins, looking to grow, looking to be strong, and looking to have good sportsmanship.

It takes just one to pin the button to their purse, lanyard or bulletin board - then you have the beginnings of pride and a sense of belonging.

Try it and let us know what you find out. Give us your ideas. We are rooting for YOUR TEAM!!!

CLICK HERE TO ORDER. Then send your custom text request to kelly@gp2c.org.