Wednesday, November 20, 2013

Holiday Gift Ideas 2013!

It's here!!!'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.  

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

Wednesday, November 6, 2013

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.  

Monday, September 30, 2013

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?


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

Monday, September 16, 2013

Intro to Blended Food for Rett Girls

Are you relying on formula to feed your daughter through her G-Tube? Have you heard about a healthy alternative called a "blended" or "blenderized" diet? Here's the scoop:

A blended diet is simply taking everyday foods and blending them so they can be given through a feeding tube.  A blended diet can be very intimidating at first (it's much easier to open a can and have peace of mind that "everything is in there") but don't over think this one.  Think about how you eat, how your other children eat and how your Rett Girl ate before getting a g-tube.  A blended diet is as easy as preparing a meal - then blending it into a soup-like texture! (note: you will need a blender with a soup setting to get it to the best consistency - see below for recommendations).

We're here to give you a starting point and the resources you need to make an informed decision about blending.

The Benefits:

A blended diet is perfect for those who have food allergies or intolerances and those who are looking to add more fat, calories or proteins.  Your Rett Girl will essentially be able to eat the same nutritious foods you serve your whole family.

Bonus: Since you are in control of the ingredients you will be able to stay gluten-free, dairy-free, soy-free, etc.  You can add more fats if your Rett Girl needs to increase her weight, you can blend raw foods or cooked foods.  You will also have control over whether the ingredients are organic, the proteins are free-range, the dairy's are grass fed and the grains are GMO free. 

Many families have switched from formula to blended foods and have experienced wonderful health benefits. It's hard to say exactly if or how exactly your Rett Girl might benefit from a blended diet since each child is different and each family will blend different food and in a different way.  But what is clear is that fresh, whole foods are always everyone's best source of vitamins, minerals and nutrients.

Fresh whole foods are far superior in nutrients to anything that is processed and put in a can.  One of the most noted benefits of starting a blended diet is that the tube-fed person digests food better.  Of course! That's because food was designed for our bodies to break it down and use its nutrients. We weren't designed to break down chemicals.  With better digestion comes a list of positive outcomes to include: healthier looking hair, nails and skin; improved weight gain or weight loss as the case may be; less gas/bloating, constipation, reflux, and vomiting after feeds; and more energy - to name a few.

The nutrients that come from foods are just not the same as the nutrients that come in a can.  Science cannot replicate fresh whole foods.  Fruits and veggies are packed with antioxidant phytochemicals, which are basically just the natural compounds of the plant. There is also a natural combination and interaction of phytochemicals and macro nutrients (proteins, fats and carbohydrates) that occurs with whole foods that can't be duplicated by mixing different vitamins together. 

Where to Start:

This is the hardest part, starting.  Don't feel as though you have to jump right in, don't get overwhelmed.  Starting a blended diet is a process -- a very slow, gradual process. You will learn as you go.  

The very first thing you need to think about is what exactly your Rett Girl needs.  Make a list of any intolerances or allergies.  Next, decide whether your Rett Girl needs to maintain or increase her weight.

Finally do a little research into a simple, balanced diet and an approximate calorie amount.  This is the step that scares a lot of people, but think of it this way: it's not so scary to prepare a balanced meal for an oral eater and you typically don't spend too much time counting the calories on the plates of your other family members, so relax and don't overthink this part, either.  Ask your daughter's GI specialist or pediatrician for a referral to a registered dietitian or a nutritionist who may be able to start you out on the right foot if you want some support.


This is the part where you need to go slow.  A few things that will determine how slow your transition will be: how long your Rett Girl has been on formula and if she is still able to tolerate some oral feeds or not, and her overall tolerance.  

If your Rett Girl has not had oral foods in a number of years and you are not yet sure if she has any intolerance to certain foods you may want to start with introducing one ingredient at a time just as you did when she was a baby first starting out on solids.  You can either introduce them on their own in between feeds, or blend them in with her formula.  As you add foods you can start to combine them to give her more of a complete meal, decreasing the formula as you go.  

Some families start with baby foods.  Stage 1 baby food can be given straight through the tube and can sometimes be an easy and much less intimidating start when moving to a blended diet.  Stage 2 and up foods need to be blended and put through a strainer to make sure they will go through the tube.  Many families will start this way and just replace one meal or feeding for a certain amount of time and then replace another feeding and gradually work up that way.  
Other families jump right into blending and will choose to blend whatever the entire family is eating at a certain meal or create a "staple" meal that includes all the nutrients needed but can be customized by changing the fruit, veggie, or protein to give some variety.

You can find information on how to create your own recipe here or check here for some sample recipes.  Here is an example of one of the recipes:

1 C. dark chicken meat
1 C. amaranth
1 C. brown rice
2 C. sweet potatoes
1/2 C. walnut oil
handful of fennel seeds
4 C. water to blend

If you're not sure exactly how to move forward you can see how one Rett family moved through the stages of starting out here.

There are many different ideas of a "balanced" diet out there but a place to start is just by starting with the basic food groups and using appropriate portion sizes for your Rett Girl's age.  Or, you can get a little more technical and start with the "macro nutrients" or the proteins, fat and carbohydrates (carbs) in foods.

Every person has different needs but a starting point is to go for 40% of the total calories from carbs, 30% from protein and 30% from fat.  Carbs and protein have 4 calories per gram and fats have 9 calories per gram.  So, if you have a food that has 5 grams of fat then 45 calories of that food are from fat.  You can do this simple equation for each macro nutrient in each food that will be blended and get a total of what your Rett Girl will take in through her diet.  


1.  Always check with your Rett Girl's doctor before changing her diet, but don't be intimidated.  You are your child's best advocate and if you see a benefit to transitioning her to a blended diet make sure you voice your position.

2.  Seek the advice of a registered dietitian or nutritionist.  If nothing else then for peace of mind that you are including all of the nutrients that your Rett Girl needs.

3.  Remember water!  You can find general guidelines of hydration needs here and can add the amount of water you need to each feed.  Some parents, however, find a huge benefit to giving water 30 minutes before each feed.  Even just an ounce or two can help "prep" her stomach for food and maybe help with gastric emptying.   

4.  Invest in a good quality blender like the blendtec or the vitamix.  These blenders have the ability to liquefy food so you don't need to strain your blend before you put it through the tube.  They can be pricey, but contact the company and they should give you a refurbished one that is discounted with a doctor's note.

5.  If you are planning on overnight pump feeds you will want to be very cautious about the food spoiling.  Try the Koala by Feeding Essentials to keep food cool throughout the night.  


By Bridget MacDonald, Coordinator
Bridget graduated from Western Michigan University in 1999 with a B.A. in Nutrition.  She worked as a clinical, registered dietitian at William Beaumont Hospital and was a program director at the American Diabetes Association prior to having her daughter, Annie, who is diagnosed with Rett Syndrome.

Sunday, June 16, 2013

2013 Father's Day Blog Series

For the week leading up to Father's Day, some very special Rett Dads have shared their stories with us. Here is a complete list of our eight guest blogs for Father's Day 2013 plus our Tribute Video.

Matt Greenlaw, Teagan's dad - "A Really Real Hug"
Chris Langan, Ilah's dad - "My Little Sweet Pea"
David Bousson, Leah's dad - "Bear Hugs, Headphones, Dora... and more Dora"
Ed Samaro, Kaitlyn's dad - "Ed and Kaitlyn's Special Bond"
Wally Trester, Courtney's dad - "Looking at the Bright Side"
Mike Prask, Zoe's dad - "Zoe Knows Best"
Will Rabke, Anna Cate's dad - "Our New Family Values"
Tony Shober, Ysabel's dad - "Finding the Windows"

"Finding the Windows"

Happy Father's Day! All week we have had some very special guest bloggers: Rett Dads. Just because their daughters girls have Rett Syndrome does not mean they are still not "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

Happy Father's Day! The last post in our series is from Tony Shober, Ysa's dad

In 2008 our youngest daughter Ysabel was diagnosed with Rett Syndrome, after 18 months of knowing, despite being told to the contrary, that something was subtly yet very different with our little girl.  Our friends at GP2C asked if I could share some insights about being a Rett father for their June blog - some brief thoughts follow.

One of the most useful anecdotes I have heard regarding people with special needs came from a neighbor, whose children are now fully grown, but whose older brother contends with hard challenges on the autism spectrum.  We had only just received Ysa's diagnosis, and were going from group to group at a neighborhood block party, still feeling pretty raw, relating what was new with all our kids, with some emphasis on Ysa.

He heard us talking from across a group and walked over and asked if he could sit with Ysabel for a bit.  He is a bear of a man, and someone I would not have pegged for sensitivity, yet he scooped up Ysa in his arms, plopped her down on his lap, and sat patiently with her, chatting with others, until they could meet one another's gaze.  It took some time but when they connected he got a huge smile from Ysabel, a raspberry or two and lots of laughter and smiles.

He explained to us that a majority of the time his brother deals with the pathology of his disorder but that there were windows, moments in time, when the clouds seemed to part and they could really connect. It has been that way since their childhood together.  He felt that you needed to recognize these windows and take advantage of every one of them.  It is a simple, instructive observation.  He kept Ysa for another ½ hour or so, seeming to take real pleasure in the moments between them.  It was an epiphany for me as a Rett father.

The Christmas following Ysabel's diagnosis we were at Mass with family and my Father in Law, Bob, asked if he could sit with Ysa for the long service.  Bob possesses the understated conservatism of our parents' generation, and was really struggling as he watched his daughter and granddaughter deal with our new reality.  Ysa was in the thick of her regression phase with Rett, and holding her entailed some real patience.

The Mass was packed, and at one point Bob got up to walk with Ysa as she was crying, and we were separated until the end of the service.  We felt a little guilt admitting it, but it was a relief to have an hour or so of respite with our other 2 kids knowing our little baby was safe with family.  Back at home that evening we sat down to talk over a cocktail and Bob related simply "that something passed between us that night" (Bob and Ysabel) and that he was moved profoundly by it.  He has become a real friend to Ysa:  he loves to sit with her at parties, he joined us at Disney and accompanied Ysa, pushing her in her wheelchair for the entire week, he sits with Ysa on his lap while watching the films of his era at our home.  In short, he found the connection.  Fantastic.

For me a challenge of being a Rett father is trying to set the stage where Ysabel can connect with others and visa-versa, recognizing that while she fights through the haze of her symptoms,  that she is acutely aware of the world around her.  Strangers and family alike struggle at first with behaviors for which they have no experience or framework - the seizures, medical gear, hand wringing, inability to easily match one's gaze, vocalizations, crying and eating issues that do not seem age appropriate.  Children stare in a way that makes you cringe.  This being said, with each occasion that you summon the patience to show that Ysabel is a sweet little girl like any other only with some extraordinary challenges and get people to see past the symptoms, you set the stage for people to connect.  It is a profoundly humbling yet rewarding responsibility.

Yesterday was our summer block party, five years after her diagnosis and the first anecdote above.  It was 95 degrees and humid, Ysa was having a really tough day and we could not bring her outside to socialize.  She was sitting inside watching TV and reading with my mother for most of the afternoon.  Around dinnertime I could not find my middle daughter and her group of friends, and when I went into our home to investigate, I found them in a circle around Ysa laughing and talking in front of the TV.  Ysa was grinning from ear to ear.   To anyone else it might be nothing special, but to me it felt like a hard fought win.

Saturday, June 15, 2013

"Our New Family Values"

With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. 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.

Today's post is from Will Rabke, Anna Cate's dad

We have all heard the saying about “finding the silver lining” in a bad situation; to all of the families that struggle with girls and women fighting Rett syndrome, this must become one of our Family Values.  There are countless ways that Rett syndrome has made me a better person and more importantly a better husband and father, but one of the most important is that my daughter’s diagnosis forced me to develop my own unique set of Family Values.  Here are a few of the new or altered Family Values that I have learned.

Taking it in stride

When your oldest child is impacted by something like Rett, you don’t have “normal” development to compare against, so you just learn to take everything in stride.  This is not an easy change to accept, but it is a change that must be accepted.  Our family celebrates the amazing things that my daughter with Rett syndrome does, and we have learned to celebrate the everyday things that our other two kids do.  Were it not for Rett, we would never appreciate the importance of thanking God for all things, big and small, that each of our children do everyday.


Perspective is another great lesson that I have learned from my daughter.  My little girl has Rett syndrome, but I am blessed that she has a mild form of this devastating monster.  There is absolutely nothing that I will face which comes close to the battles that my daughter wins against Rett syndrome everyday.  “Bad day at the office?” Really? How about finally succeeding to grasp a cup after thousands of failed repetitions of having to force your own hands to, first, separate from their constant clasp, then hold a cup so that you can drink on your own.


I would be lying if I failed to describe a bad Family Value that accompanies having a daughter with Rett syndrome, grief.  For the months that my wife and I waited to get the genetic results back, which confirmed what our daughter had, I stayed up nightly researching Rett syndrome, just hoping that I would find something that would prove that my little girl did not have this.  Unfortunately, by the time, I took the fateful call from the geneticist confirming my daughter’s diagnosis, I knew that she had Rett syndrome.  My tears had been shed over the prior months as I sat up at night searching for some different answer, so I was somewhat prepared when I finally heard those words, “The genetic tests confirm that your daughter has Rett syndrome.”  But, after that initial moment of loss, the feelings of grief still arise when something makes me wonder “What if?”  For a couple of years after our diagnosis, I could not handle watching a father give away his daughter at a wedding or share the first dance at the reception, because it made me ache to share those moments with my own princess one day.  Now, the grief is triggered when I see other girls do something that I wish my own daughter could experience, usually something little, like taking off on a bike to a friend’s house.


Finally, Rett has taught me and my family to Hope.  I hope that one day, my precious, little girl will tell me she loves me, give me a hug and walk away to live her own life.  Amazing how visualizing one’s daughter being able to do those things would be such a miraculous dream come true.  Hope must be constant and unfaltering.  Our family shares a hope for our daughter to continue to grow and learn new skills, and a hope that a cure will be found before the Rett monster breaks our little girl’s body apart.

Friday, June 14, 2013

"Zoe Knows Best"

With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. 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.

Today's post is from Mike Prask, Zoe's dad

I don’t think I was qualified for the job when I became a father for the first time. Our oldest daughter is six now, and despite (and perhaps because of) many of her wonderful idiosyncrasies, I think I’ve done as good a job as I could have expected.

Our younger daughter, Zoe, has Rett Syndrome, and I can say without hesitation that I wasn’t qualified to handle the responsibilities that have come with that. Any success my wife or I have had in this area we owe entirely to Zoe. Despite the limitations, obstacles, and hardships that Rett has presented to her, Zoe has the purest heart and sweetest demeanor of any child I’ve ever known. Without those qualities – along with her wonderful smiles, her reassuring pats on my cheek, and the two-armed hugs she’s developed the skills to administer in the last year – this job would be so much more difficult.

It has still been a tough journey, for which my wife and I have been fortunate to have each other. Zoe is as healthy as she could be in light of her condition, yet there have still been long nights in the hospital, waiting for her tiny body to rehydrate from a bout of pneumonia, and neurological episodes that approach a blurred line into seizure activity but never cross it. Out of all those scary moments, none came close to the anxiety we felt the night before Zoe’s first day at preschool.

Up until that point, Zoe had never been anywhere without either of us, except for the occasional overnight visit with relatives. She could neither walk nor talk (and still can’t), and yet we had this notion we could send her off to school, on a bus, no less. My wife and I barely slept that night, and I was ready to call the bus company and the school first thing in the morning to say we’d changed our minds.

There was no way she was ready, I assumed; the whole thing would have to wait till she was ready. Luckily, Zoe knew better. Morning came, the bus arrived, and we buckled Zoe into her seat for the ride. She had as big a smile on her face as she could muster and could not have been more excited to start something new, to experience something fresh. The look on her face was unmistakable, and she had the same expression when the bus brought her back that afternoon – ‘What the heck were you so worried about, Daddy?’

That was two years ago, and while I laugh at myself for worrying like I did, I can already feel the same anxiety building for this fall, when she goes off to kindergarten. I tell myself this time, I’m right. We don’t yet know what school she’ll attend or what kind of program it will be. She could attend a school 30 minutes away instead of our neighborhood elementary school where her sister goes. She could be in too restrictive a special needs program, where she won’t be exposed to the appropriate kindergarten curriculum.

We could get our wish, and she could be in a blended program with typical kids, but those kids may not understand her or her condition. It’s terrifying to us, every possible scenario that can arise. But if we continue to be as lucky as we’ve been, the next terrifying situation won’t be the last one. We keep praying there will be another terrifying situation for Zoe to confront around the corner from the last one. She’ll continue to wonder why we worry, and she’ll continue to do just fine.

And every day, we try to figure out a way to make up tomorrow for the fact that we didn’t overestimate Zoe today. Why don’t we do that more often? I guess I’m too afraid, and not equipped, to let the most indomitable spirit in this house have her way with the next obstacle in front of her. After all, around here, she’s the one most qualified to deal with this on a daily basis. I’ll learn someday.

Thursday, June 13, 2013

"Looking at the Bright Side"

With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. 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.

Today's post is from Wally Trester, Courtney's dad

That moment in time that we were told our daughter Courtney had Rett Syndrome remains as vivid of a memory as the other ones someone would cherishes such as a wedding or the birth of your children.  I don’t know if it was the realization of the life I was soon to discover, or the one I was leaving behind.  I was still young at heart, and tried to live to the lifestyle.  

Kind of carefree to the rest of the world and only worried about things that mattered to my family and me.  I look back at that time in my life as the hardest test I would ever encounter.  I had just started a new position in the company I work for, things were going great.  I then decide to take on College – something I and many others thought would never happen.  Then things began to take a turn, Courtney’s development was not what it should have been and the extensive testing begins.  Test after more test, medical bills upon more medical bills and the stress of life starts to build.  As the testing continues the dark depths of the unknown continued to grow.  I remember there was one point in time where I thought something has to give – the question was what was it going to be.  

Then the call came in and we now knew what the problem was, and reality came crashing down.  I know what I was doing up to the point that I got the call, but I don’t remember much after the call.

Something happened that day that changed me forever…

I now have a different look on life.  Much of it comes from the experience my daughter has endured.  When things seem like they are at their worst, or I can’t continue on. I reflect back everything my daughter has endured in her nearly 6 years of dealing with Rett Syndrome.  I look at this entire experience and remain humble for what we do have and the things we can do.  

As I know there are others out there in far worse situations.  Had it not been for Rett Syndrome, I don’t think I would be the kind of man I am today.  I would not have had the opportunity to meet so many great people, or help raise awareness for a great cause.  While I hate Rett Syndrome for what it is and how it robs our girls, I’m thankful of the things it has taught me.

So when I think I’ve hit that point that I can’t continue on, I just think about the all the things Courtney endures in a day and the challenges I have already overcome – think of the bright side of the situation and persevere.  Pray for the CURE to give my baby girl the life she deserves.

Ed and Kaitlyn's Special Bond

With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. 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.

Today's post is by Ed Samaro, Kaitlyn's Dad

Kaitlyn and I are as close as any father and daughter could be.  She is my special angel.  We love to swim together,  go on long walks or have an adventure; such as our last trip to Boston; we got on trains we had no idea where they were going just to see a new part of the city.  Kaitlyn also loves to be read to and listen to music.  But I think our favorite is eating together!

We share a special bond and could not imagine my life without her!

 A little bit about Kaitlyn:

Today Katie can no longer talk at all (hence the name "My Silent Angel"). She can walk short distances however, we had to get a specialized pediatric wheel chair for her (this was also very expensive) She has rapid hyper motor movements in her arms which we use weights and other physical therapeutic tools for her. There are many other symptoms to include severe gastric problems and stomach pain. She is totally incontinent. She has to ride in a special car seat; she cannot hold her little body for very long. She is small; she weighs 28.6 lbs. (at the time of writing this). She is in a special school which she gets physical and occupational therapy many times a week.

I would love to say she’s getting better, but she’s not. Kim and I remember the last spoken word she said which is ironically "bye bye". We do the best we can to be positive and do everything we can to help her and to help our mission of educating, raising awareness and pushing for a cure.

Katie really loves Pizza, she loves the merry go round at Lego Land and she loves to be sung to. We indulge her in all the things she loves and anything else we can. She is very beautiful, special little girl!

Wednesday, June 12, 2013

"Bear Hugs, Headphones, Dora... and more Dora"

With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. 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.

Today's post is by David Bousson, Leah's Dad

Rightly so, many people proclaim that “People First” wording is the correct thing to do for people with disabilities.

But there’s something different about Rett Syndrome and the families who live with it. We’re a close knit group, and we use Rett Girl, Rett Dad and Rett Mom as terms of endearment (Rett Sibling has never really caught on...). We’d all love to see Rett defeated, and we all know that these girls are so much more than their disabilities. Rett Girl has a certain strength to it. These girls put up with an astounding amount of difficulty in their lives, and yet their smiles continue to melt the hearts of those who take the time to receive them. 

When you join the Rett club, it’s painful. These girls go through so much that we can’t even comprehend. You watch this new person progress and then regress. They are crying, and not understanding what is happening to them. Doctors are consulted, often to the frustration of the parents, as Rett is not widely known (no, it's not Tourette's). 


Your marriage will be tested, don’t doubt that for one minute. It’s hard. It changes the lives of everyone in the family. I wish I could say that it made me pull it together and become “Captain Awesome Dad,” tirelessly advocating and seeking out every opportunity to make the lives of those in my family better! But it’s been a struggle, and I have, in some ways given up. The best way to describe it is "weary." I only do what has to be done to make it through the day. Ambition and I have parted ways more often than not. Leah is 10, and I am just barely getting to a point where I feel I know who I am again. 

My wife, Tammy, is amazing. She has been there for Leah at every turn, putting aside her needs and wants to care for Leah's every need.  She keeps this family running, and I laugh when someone asks me if my wife works or stays home. She has made her career caring for Leah (she should have her doctorate in "Leah Studies" by now). I am continually fascinated and amazed by how she continues to do all she does. She deserves so much more than she often gets. But she is weary as well. 

All things considered, things are going pretty well. Leah has had two surgeries in the last 8 months, yes, but she is recovering. The smiles are returning once again. She's a charmer, with those beautiful eyes and that beaming smile. It takes a commitment on your part to find them at times, but once she see's that you're worthy*, they show up pretty quickly. (*Worthy: Being willing to wait for her to process your presence, and to let her body finally react.) 

Bear Hugs

We have a thing we do most every morning, when I say goodbye to her and go to work. It's called a bear hug. I grab her arms and wrap them around my neck while she's lying in bed, and make a growl-y bear sound as I give her kisses on her cheek and neck. Because of her hand wringing (typical in Rett), she then clasps her hands together, resulting in a hug on her part. She loves it, and I often feel her tightening her grip around my neck in the closest thing to a hug she can muster. But best of all is what happens on her good days. She growls back. And smiles. And laughs.

Being a Rett Dad is not easy, but I'll be the first to admit that I've got it pretty well off (again, all things considered). Divorce rates among families with disabled kids are really high. I've been blessed with my family, and I try not to take that for granted. I've had a hard time coming to terms with Leah and Rett. I have found many other things to do, when I should be playing with my kids. I feel guilty when I spend more time with my son Riley, and I find myself wondering what to do with Leah. 

I know what I need to be doing, which is just spending time with her. Talking with her, reading books to her, walking with her, playing with her. But often I don't. It's ridiculous, but it happens. There are only so many times I can try to do something with her, only to have something happen where she's in pain, or overly anxious, etc., etc., and then we have to cut the plan short. 

It's hard to explain. I just don't want to set my family up for another failed event. And it's not her fault. Rett Syndrome has taken this away, and I hate it for that. But I love the kid. It's a vicious cycle. Don't get me wrong, we still do things, and have fun. But that is always a lingering fear whenever we go somewhere. It's an element of stress that never leaves.

Riley, my 12-year-old son, has a heart for his sister, and for those like her. He doesn't even think twice about playing with the kiddos who are a little (or a lot) different. He just jumps right in there and starts playing. And it's so wonderful seeing the eyes light up as they are playing with him because he "gets" them. There are many days when we can't go out and do regular family things with him, and sometimes he really gets upset. But life goes on for him and for all of us, and we do what we can. 


When you watch your close friends describe what is going on in their "normal" little girls' lives, you hurt inside (Please though, rejoice in those stories of your kids, and keep posting them. I do indeed want to hear them, they are truly wonderful). The beautiful song by Steven Curtis Chapman called "Cinderella" is especially painful. Many a tear has been shed during that one. Your little girl won't do a lot of things, and you can get lost in the list of what she won't do when you start to think about them. 

But here's the thing. Your perspective needs to change. Focus on what she can do. Search for every little thing that she does on her own, and encourage it. Make a big deal about it. Those things are there, but they can be so difficult to find sometimes. 

Another favorite song, this one written by Rich Mullins, is called "Hold me Jesus" It's a beautiful song, written about those moments where you just need someone bigger than you and your situation to be there for you, and to hold you. 

I need to be that for both Leah and Riley, and that song serves as a nice reminder. Rett may have entered our lives, and it has caused it's fair share of troubles, but we have to do what we can to move through it, and give these kids the childhood they deserve.

Dora and headphones

Rett Syndrome has a soundtrack unique to itself. These girls can't talk, so they have to express their needs in other ways. One of the more common sounds in our house is "The Grinding Of The Teeth." If you've never heard this done on a constant basis for days on end, be thankful. 

And then there is the whining, when something hurts or something needs to be taken care of. I won't even try to describe it. Suffice it to say that it completely robs you of your ability to think. Security companies should study it and turn it into an alarm. It's that effective at stunning a person. 

We've quickly learned to run through a basic troubleshooting list: Are you hungry? Is it gas bubbles in the stomach? A diaper that needs changing? A change of scenery? The wrong Dora? Does your back hurt? What you don't think to ask is: Is there an eyelash in your eye? Does your scalp itch? (Sorry if I just made your scalp itch...) Did you want to go do that thing we promised we'd do today, but forgot since we brought it up yesterday? A leg cramp? Do you miss someone? Do you want to tell someone something that's on your mind? 

Yeah, it gets overwhelming. All the while, she's crying or whining because that's the only way to express the need. If all else fails, we resort to Dora and a pair of headphones. The headphones are for me because sometimes nothing fixes it, and I have to block it out to hang on to a few shreds of sanity.

How to help

So, now that you are thoroughly depressed... sorry. But here's the thing. All of you reading this can make a difference. Or maybe you have already. 

Learn about Rett Syndrome. Spread the word, donate money to research. Participate in a fundraiser. Raise money. Donate money. Yeah, I said that twice. It's that important. 

Scientists believe that they can reverse Rett Syndrome, and they are trying each and every day to make that a reality. But they can only do that with money. So give what you can, and continue to do so whenever possible. Because these kids depend on it. And on you. 

Be prepared for me to keep throwing donation opportunities onto Facebook, and please follow those links I post about Rett Syndrome, so that you can follow the amazing progress. I know you are doing so. I hear you telling me your stories: about the woman you met at a race who was wearing a Run for Rett shirt, and you stopped and talked to her. I hear you tell me about what you learned about Rett. And I enjoy the moment when you read the Purple Card I just handed you (ask me for one!), and learn one more thing you didn't know about Rett. Those moments mean a lot. 

(Here's her Girl Power page: Did I mention donations? You can do that through her page...)

Thank you for your time, it means a lot to all of us. With your help, there will be a cure.