Saturday, June 20, 2015

Looking Forward with Hope





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.

by AJ Tesler

I remember the day my daughter got diagnosed with Rett Syndrome.  I remember sitting in the doctor's office and listening to her tell me about Rett Syndrome.  My mind was awash with questions - questions the doctor didn't have answers to.  I remember the feeling of helplessness and despair for what would happen to my daughter.  I remember the grieving period, the feeling that we had lost everything.  Thinking back on that period still hurts.  Looking back, I find, usually does.  But in that time, looking forward hurt more.  Not any longer.

I remember when it all changed.  When instead of being sad for myself or my daughter I decided to take action.  I called everyone I could get a hold of.  I asked questions.  I started volunteering for Rett Syndrome events.  I make videos for a living, so I started making videos to share with the world.   For me, and I imagine for most people, the faster I can help find a cure, the faster my daughter can overcome Rett Syndrome, and that gives me great purpose.  Being her voice has been the greatest pleasure of my life, and has given me purpose unlike anything I've felt compelled to do previously.   And that allows me to look forward with hope and optimism.  Being proactive for Maggie and for Rett Syndrome research, has allowed me the chance to dream and believe and as a result, those dreams have turned into certainty and at this point, I'm 100% positive that we will cure Rett Syndrome in her lifetime.

My wife and I, in periods of Rett difficulty, will remind each other that "we will win this."  I look forward to the time when I can correct that mantra.  Someday, it'll be nice to say  "we won."

Gus' Gift


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.




by Gus Rodriquez

I have three inspirational characters: Nick, Vivian, and Bea. Each one has different strengths and weaknesses, yet it’s been my experiences parenting Bea that have made me a better father to her siblings. To say she inspires falls way short of the plate.

She is truly beautiful, and I could stare at her for hours. Her eyes- beautiful as a clear blue sky, have a way of melting my stress and fears away as she reminds me to see the true treasure of life: family. Watching her fight Rett syndrome is not easy, but much easier than living with Rett Syndrome is for her. I look at Bea and see how strong she really is with every day that passes. The small things we take for granted everyday really make you think twice about complaining. Things like “my leg hurts; I have a pain in my back; I have a headache,” things like this I suppress and keep to myself because I watch my little Gwaggles (that’s her nickname) go through much more pain than any of us can imagine.

Because I see how tough my 4 year old is, I tell myself, “MAN UP!” This is what comes to mind when she gives me that stare, KNOWING that I am on my last bit of energy. Beatriz is my strength and courage. The joy she puts in my heart melts all discouragement away, and always gives me the jolt I need to accomplish any task thrown my way. I tip my hat to her for the simplest things in life: love and happiness. She truly is a gift!

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

While Gus sees his daughter as a gift, he himself is a gift to his entire family. His wife, Suzanne, shares their story together, one that exemplifies the word "Dad."

There’s no doubt that the bright-and-center star of our family is Bea, but it’s my husband Gus who’s the unsung hero of our Rett story. He proved he’d make an AMAZING father the first night I met him. I just didn’t know it because we didn’t share more than 5 words. Gus and I met on a kickball field. He was the captain of a team that I joined simply because I liked the charity they played for. Although our only interaction that night was exchanging names, he did, however, spend the bulk of that first night chatting up a storm with my then 4 year old son, and we have a photo to prove it. As the season progressed, we got to know each other and eventually became a couple.

He’s from a large, blended family, which is probably why he took to his fatherly role with Nick easily. There was no stopping these two and I admit to being jealous early on. Nick was “mine,” not Gus’, but I couldn’t deny that Nick was thriving from the interaction with Gus, or that it made me VERY happy. Then came the ring. Then came a lost pregnancy.

People often think that a mother’s love is stronger than a father’s love because mothers carry the children, but I watched this man grieve in a way I had never seen anyone grieve before. He was a father mourning the loss of a child, and it was then that I began to see how strong Gus is. Where I was a near-lifeless mound of sorrow and crumpled-up tissues wherever I went, he was stoic, steadfast, and cheerful when faced with Nick’s difficult questions. He held down the fort and every semblance of normalcy that mommy couldn’t for Nick. Just short of a year into this parent role and he was already a better father than most. When our first daughter, Vivian, was born the following year, it was as if his heart exploded with love.

Vivian came early, weighing just 5lbs. She was in two different NICUs for 11 days. And once again I was witness to his strength. For 11 days, Gus commuted an hour each way, worked his 8 hour job, and visited the NICU every three hours from 10 pm to 6am so I could get my rest at home and be with Nick. When she finally came home, he was in heaven with his little family and shared that joy with everyone within earshot. You could literally feel love and happiness when within 6 ft of him. So much love that 6 months later, we were pregnant again! He was dead-set on us raising our children versus daycares or nannies so he took on extra jobs to account for my lost salary. When Beatriz was born, he was once again father of the year as an eager volunteer in all things baby. Who wants to change diapers? This guy. Who wants to burp the baby and get puked on? This guy. He is as hands-on as it gets, and I often heard (still do) from friends/relatives/other moms that I was “so lucky” because their husbands didn’t share in baby duties. Despite the busy schedule he kept so he could provide for our family of 5, he was never too tired for cuddles, a book, dress-up, baseball, or bear hugs.

When Beatriz turned one and her “quirks” turned to health concerns, Gus’ strength stole the spotlight again. We were slapped with our daughter’s mortality and told that while there were no guarantees about when she would die, they were sure she wouldn’t “live.” Rett was like being trapped in a body that didn’t work. It would have been completely understandable for him to walk around like a zombie, I was after all, but Gus went on to work and went about his day, because that’s what his family needed.

It’s often said that we are tested not to expose our weaknesses, but to discover our strengths. Gus has hit a home run with every curve-ball thrown at him. He even helped one of my best friends escape an abusive relationship by opening our home to her and her two children, and was happy he could help them. He makes everyone feel like family. These days he still works multiple jobs to provide, and while he can’t be at every doctor’s appointment or therapy visit, he’s texting me like a crazy person until I update him. He comes home and is hands-on with dinner, baths, homework, and housework (including laundry mountains). He’ll then head to his “office” and spend hours scouring the internet for treatments or activities, or videos on how to adapt toys for Beatriz. “Selfless” falls short when it comes to describing Gus. He is the glue that holds me together. He sets the example of what a man/father should be for Nick, and the type of man we hope Vivian and Beatriz bring home one day. What more could I have asked for in a husband?

Monday, February 2, 2015

How I Saved Over $27,000 Last Year

Special Guest Blogger: Syndi Knowlton, Rett mom and couponing expert

Being a special needs parent comes with a hefty price tag.  Co-payments for appointments, dozens of medications, home modifications…. And trying to maintain gainful employment to afford it all is more stress than we need.  Take all of that stress and times it by 3 and you have my little family.  All of my children have major medical issues.  We were faced with two options:  work an insane number of hours to cover the monthly bills or live intentionally below the poverty line.  I knew I was capable of working.  I also knew I could be craftier about the way I spent money.  That’s when I turned to couponing.  In the beginning, it was slow going, but as I learned the tips and tricks, I have cut it down to less than 2 hours per week (including the trip to the store). I was asked to share some of what I have learned.  If you have questions along this path, feel free to email me at Syndi@Utahkidsfoundation.com

Point #1

There is predictability in most things you purchase for your home.  I am attaching a list here to see a more complete list.  A lot of it is common sense.  Think of January.  We all make New Year’s Resolutions.  Many of them include losing weight and getting healthier.  This is a great time to purchase your exercise equipment and stock up on vitamins.  You are also half way through the winter.  Many stores will offer great deals on winter clothing.  Try to plan purchases you might make each year around when the sales are to save a lot of money.

Point #2

You can order just the Sunday newspaper in many cities.  Most newspapers have a couponers special and you can get a steal on up to 4 papers delivered for a low cost.  The rule of thumb is you want one paper for each person in your home.  I am allowed to purchase 4 and I pay just $20 a year for delivery each Sunday.  You can coupon without getting any deliveries. 

Point #3

You can even coupon some without having a printer!  Many stores have their own online coupons.  Kroger chains have a Fresh Value Card.  Log in to your account and add coupons to your card before you head to the store.  There are smart phone apps that also do couponing, but it saves up your savings and you can cash them out for cash or gift cards.  Some examples of the apps to coupon in a rebate format are:

Checkout 51 –  go to http://www.checkout51.com Scan your items and receipts and you earn money without using coupons.  This can be redeemed for Paypal funds when you reach $20.  New items added on Thursday.
Receipt Hog – go to http://app.receipthog.com/install/bv5d5cqw Scan your receipt, save for Paypal funds.  You can redeem at $5.  You now can scan all stores, not just grocery stores.
iBotta –  go to http://ibotta.com/r/ipsbBw  Scan your receipt and items to gain Paypal funds or a few gift cards.  Also certain restaurants and movie theaters etc have money back in this app.
JingIt – go to https://www.jingit.com/?ref_id=103311&s=e  They offer small rebates on your every day staples: Milk, bread, eggs, etc
Snap – go to https://snap.groupon.com/app?ref=9dcb83b076d8f78d  This is an app from Groupon that also redeems rebates.

If you share these links with your friends, you build a larger money saving team and in some applications, work towards big bonuses.

Point #4

You can print a lot of the same coupons that would come in the Sunday paper.  Here are a few of my favorite sites:

www.commonkindness.com – this has more obscure coupons on this site and you can donate a portion of the coupons you use to a charity
www.smithsfoodanddrug.com – digital coupons to use with your card.  Every Friday they have a free coupon.
http://www.retailmenot.com/:  This gives you coupons for almost every store (not groceries) to instant savings and online coupons listed.  Deals both online and in stores

Also, register with your favorite brands.  They often have coupons for their products on their own websites.


Point #5

Now you know where to get the coupons, and rebates.  The next step is to coordinate the sales with your coupons to get more bang for your buck.  My go-to site for what sales are at most stores and what coupons to match with the sales can be found at http://www.grocerysmarts.com/national/lists/indexnatbdv.php

Select your state and the store you want to shop at.  It will show you everything on sale that day.  If you notice the far left column, it reads Stock Up scale.  This is a classic rating system to help you know if this is the bargain of the week or if it’s just "ok."  Even the money you save on a basic coupon is still savings.  If you are wanting to only get the great deals, on the upper right side of your screen you will see a button that says Shrink.  This cuts out the fluff.

There are oodles of websites for price matching.  Certain stores (including WalMart) will price match but only within a limited area.  For example, I live in Utah.  I know that most produce is grown in California and shipped here.  I can’t find an amazing price in California and have them give me the same deal.  Ask your friends what price matching sites they use locally to ensure you are getting the correct data.

I want to stay on WalMart for just a moment as it is mostly universal for our families.  Walmart is one of a few stores that will actually give you cash back.  For example, Ladies Speed Stick, the smaller stick, is $.89 at my local WalMart.  If I had a coupon worth $1, Walmart would actually give me the $.11 back.  They apply it towards the rest of the purchase but if that were the only thing you were purchasing, they will hand you $.11 minus the tax for the item.  Other stores typically zero out anything you would receive back if the coupon is worth more than the item.

I am sure many of you are aware of WalMart’s Savings Catcher program.  At the bottom of all receipts at Walmart, there is a code you can enter either on their website or your smart phone app.  This will then go search all local stores and if a lower price is found, you will be offered a gift card to use for future purchases.  They have a promotion going on right now.  If you go to the kiosks where they have gift cards for sale, grab an American Express BlueBird card.  This is a card you can preload money on to.  Now until the end of February, the usual $4.95 fee for the card is waived.  Also, if you run the Savings Catcher program, you can have the difference of the lower price added to this card and they will DOUBLE the money back.  The refund from Walmart that goes on this card can only be used at Walmart.

Point #6

Buy smaller quantities / volume!  Stores like BJs, Costco and Sam’s Club are great for buying in bulk.  On average, you are saving 15% off retail for the same quantity at your local store.  I no longer shop at these stores because I do much better with coupons.  Let me give you an example:

I have a coupon for $.50 off French’s Mustard.  If I buy the largest bottle, I am spending $1.83.  After the coupon, I am spending $1.33.  If I use the same coupon and apply it to the smallest bottle, the bottle is priced at $.99.  After the coupon, it’s just $.49.  If you take the ounces in the large bottle and divide it by the price, and do the same with the smaller bottle, you are getting your quantity cheaper.  This is where multiple coupons are great to have.

Point #7

Watch the information on your coupons and your stores coupon policy.  I always print and take a copy of the store’s policy with me before I go.  They can be found on most stores’ websites.  If I am not sure about the policy, stop and ask at customer service before you shop.  Some stores limit the number of identical coupons that may be used at one time.  Many coupons also limit similar transactions to 4 in one day. 

Point #8

A quick shout out for Kroger brand stores.  If you are a Kroger’s shopper, you know that there are points for every sale that can be used towards money off the cost of gas up to $1 off per gallon of gas.  I fill all of my prescriptions here as well to boost points for cheaper gas. 

They have a lesser known program that can save your family a lot of money.  I have a son, 15, with Autism.  He has a terrible habit of losing and/or destroying small electronic devices.  He is higher functioning though and wants to be like his friends.  I also like being able to know where he is.  Kroger owns a cell phone line called iwireless.  You can get non smart phones from as little as $4.99.  The same points you accrue to get cheaper gas, you can also use to pay for your cell phone bill!  It is not a one or the other!  My son never uses his phone.  I have just a 100 minute or text plan that is $10 a month.  When his bill is due, I log in to iwireless and use my points to prepay for the next month of service!  I haven’t paid for his cell phone usage in 2 years and if he destroys a phone, it’s maybe $10 for a new one.  Pretty slick deal!  They do also have smart phone unlimited plans as well and their service runs on the Sprint network.



Last little nugget

Some of you reading have Food Assistance Programs.  If you use coupons, you do have to pay for the tax on the coupons.  However, it is usually far less than the money you would save by using the coupon.  If the tax was $.06 and you are saving $1, it’s still saving you $.94.  It can help you build up a food storage quickly!

Some stores offer double coupon days.  This adds another level to your savings.  Many stores also have store coupons.  You can stack a store coupon on top of a manufacturer’s coupon for extra savings.  All of the apps I mentioned in Point #3 can be added on top of these. 





Written by: Syndi Knowlton, Rett mom - Thank you Syndi for all of your, help, advice and expertise!

Tuesday, November 11, 2014

2014 Rett Girl Holiday Gift Guide

The wait is over!! RettGirl.org's 6th Annual Holiday Gift Guide is here!

Each year, since 2009, we have scoured online to find products we hope that special Rett Girl in your life will love! We are Rett parents, too, and know how hard it can be to shop for our girls.  Please pass this guide on to friends and family who are searching for that perfect gift for our girls!!

This year we continue the gift giving philosophy from year's past: "Something to wear, something to read, something you want and something you need." 

Plus, we have "group gift" ideas that can come from mom and dad, aunts and uncles, Grandmas and Grandpas or anyone pitching in together! And of course we didn't forget those stocking stuffers!!!  

Many of these 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:

EarTunes Hat:  Keep your Rett Girl warm but keep her happy with the built-in ear buds in this great hat! 


Kids Infinity Scarf: These scarves are GREAT! They're cute, stylish, keep your Rett Girl toasty warm AND keep the drool at bay! 




Weighted Lap Pad:  Super cute and perfect for a little sensory input.

Children's Wireless Headphones:  These are designed to fit smaller heads and they're wireless!  Plus they come in lots of cute colors!


Compression Socks:  Great for our girls with poor circulation.  



Something to Read:  


Personalized Books: You can personalize these books for your Rett Girl!  There are lots of different titles to choose from so you're sure to find a story that's perfect for her.  


DC Super Hero's: My First Book of Girl Power:    If there ever was a perfect book for your Rett Girl THIS would be it!  A celebration of girl power for budding super heroines featuring DC characters from Wonder Woman to Batgirl.  


Just Because: This is a beautiful book written from the point of view of a little brother who loves his big sister so much, just because.  "My big sister Clemmie is my best friend. She can’t walk, talk, move around much, cook macaroni, pilot a plane, juggle or do algebra. I don’t know why she doesn’t do these things. Just because."


One More Story:  A Beautiful online library of the best of classic and contemporary children’s literature. The site makes books accessible to pre-readers and early readers so that they can engage in and enjoy literature. Add a switch and your Rett Girl can turn the pages!

Something You Want:  


Flower Power Personalized Wall Decal:  Give your Rett Girl a little flower power for her room with this beautiful, personalized Wall Decal!


Trampoline:  If you don't think your Rett Girl can use a trampoline, think again, she may just need a little help!  Fun and great exercise too!

  
Pink Water Speakers:  Multicolored lights illuminate jets of water that "dance" to the beat and volume of your music! What could be cooler?

Smart Phone Projector:  Pop your smartphone into this handy projector and unleash the potential of your cramped screen by projecting it onto a wall! 


Symphony in B Music Toy:  13 different instruments, each with their own sound - your Rett Girl controls the symphony!  


Spin and Learn Color Carousel: Great cause and effect toy with a big giant button!  Great for our younger Rett Girls!  


B. Woofer Guitar:  Easy to access with lots of different musical options! Another great choice for our younger Rett Girls!


Shake and Sounds Learning Pup:  Another cause and effect toy!  Shake the bone and the pup responds.


Vibrating Pillow:  Colorful, lightweight and fun shapes make these vibrating pillows perfect for sensory input.


Fleece Collage Photo Blanket:  Snuggle your Rett Girl up in a blanket that will keep her engaged looking at all her favorite pictures! 


Something You Need:  


Spa Diffuser:  Add a couple drops of your Rett Girl's favorite essential oil, or an oil that helps her sleep and let it diffuse into the air for hours.    



 

Zipit Bedding:  This fantastic zip-up bedding prevents the covers from being kicked off at night!

Novaform Roll Out Lounger:  2" thick memory foam that rolls out into twin size bed.  Includes a washable cover!


Groovy Globe Nightlight:  Who doesn't need a nightlight?  Especially one this cool!  



Stocking Stuffers:  


Bravelets
* $10 of purchase will be donated to GP2C through this link. Purchase on 12/2 and $20 will be donated!

Chewy Tubes


My ID Squares


Toy Adapter

Burts Bees Lotion for Circulation

  
Girl Power Vinyl Decals




 


Group Gifts or Splurges!

Remote-Controlled Ride On:  Let your Rett Girl ride in style while YOU have the controls! 

Switchamajig for the iPad: Control your world with your iPad! The Switchamajig Controller lets you use the iPad’s touch screen to control anything that’s switch-adapted. It opens up new possibilities for including people with disabilities in more and more activities, from cooking to chemistry class. Unlock your iPad’s potential!

Tobii Eye Mobile:  Give your Rett Girl the gift of portable communication with the Tobii Eye Mobile!
 

Make Memories!

Instead of just piling up the toys and clothes this year why not make some memories instead?  Here are a few blog posts to visit with great, non-toy, memory-making ideas!


18 Non-Toy Gifts for Children:  This has a great list with classes and memberships and some other creative ideas.  


The Ultimate List of 100 Non-Toy Gift Ideas:  This is a very long list of some great ideas including Learning tools and family experiences.  Of course not ALL these ideas will be suitable for our Rett Girls, but some of them are!  


Last but not least:


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

2. Check out our HOLIDAY TIPS for a less stressful season.

3. Visit our Holiday Gift Guides from previous years:



Wednesday, August 27, 2014

A Smooth Transition

Our back-to-school post is all about making a smooth transition into a new school year.  Here are some tips and advice for keeping the first day of school jitters to a minimum!


Acclimate yourself and your Rett child:
If your Rett child will be changing classrooms, teachers or even schools this year the transition will be a bit more challenging.  Familiarize yourself and your Rett child with the teacher, the staff, the therapists, the school, the classroom, everything before the first day.  Take the time to drive up to the school, take a tour, find out where the office is, and make sure to meet the secretaries.  Introduce yourself and your Rett child.  The more familiar you are with the building, people and classroom the more at ease you will feel about the transition -- and that will rub off on your Rett kiddos!


Communication is Key:
Our girls have LOTS of staff in school helping them out - therapists, special education teacher, general ed teachers, para pros and the list goes on.  It can be pretty tough to keep up with all that goes on in your Rett child's day.  Make it a priority to know everyone working with your daughter and have their contact information in case a question arises.  For therapists and teachers set up in the beginning of the year how and when you will receive updates on your Rett child's progress (and it's not a bad idea to write this into the IEP).  Are progress notes enough every quarter or do you want to know week by week or even day by day how and what she's doing?  Let the therapists know how often you would like to be updated and how you will correspond: through letter, email, or phone.  Likewise with her teacher.  Many teachers do a daily communication form but if there is something specific you would like to know on a daily basis let her know. If your childs teacher doesn't have a communication form, feel free to copy the one on our school resources page.  It's amazing, with the amount of staff our kiddos have, how easy it is to forget and let a couple months slip by and then think "hey, I wonder how her OT goals are going?"

Bring in the Comforts of Home:
Does your younger Rett kiddo have a favorite blanket, stuffed animal or toy?  Bring it in!  Especially for the first week or 2 of school. Whatever eases her anxiety and makes her feel more secure is OK.  For our older Rett kids, maybe a favorite CD that helps with calming anxiety?  Bring it in with a set of headphones and ask her teacher to let her listen to it if she gets upset.  Does your Rett child use a weighted blanket to calm her?  Consider buying an extra one for school.  What about winter?  Does your Rett child get chilled often or does her circulation require you to keep a heated blanket on her throughout the day?  Consider buying an additional one for school so she can feel the same comforts there if she needs it.  Whatever comforts your Rett Girl at home will likely comfort her at school as well.

We wish all our Rett kids a very smooth transition and wonderful school year.  RettGirl is always here to help you!


Sunday, June 15, 2014

Fill My World With Love


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
My Princess, My Everyday Light - by Juan Diego Perez
Being Avery's Dad - by Bryan Beeson
She Melts My Heart With a Single Smile - by Phil Covington
Together with Evie - by Frank Morris



Written by: Jon Seeman

I met Kelly, Brooklyn and Boston almost 3 years ago. I was 38 years old and had no idea they would change my life. I found the woman of my dreams and two very precious children. I have the honor and privilege of caring for and loving Brookie and Boston every day. I may not be their biological father but I love the two of them as they are my own.

For those of you who do not know, Kelly's daughter Brooklyn (my Little angel) has Rett Syndrome, and her son Boston (my little bubbers) has a duel diagnosis of Down Syndrome and Autism. I have received compliments from many people saying  "what a good person I am for choosing a life with two special needs children." I realize I am being complimented and while it is nice to hear, I feel they are unwarranted.  In my heart, I don't feel like I chose this life for myself, I think it chose me. I think it was God's will that Kelly and I met and fell in love.

I am thankful to God that I have been blessed with two amazing children to love.

I am thankful that I get to play outside with them.

I am thankful to be able to tuck them in at night.

I am thankful to snuggle with them in the recliner.

I am thankful to be able to watch Disney channel with Brookie.

I am thankful to have Boston sit In my lap, cuddle and watch the Wiggles on the iPad.

I am thankful to see their amazing smiles when they are happy.

I am thankful to be around to console and love on them when they are hurting or sad.

Many of you know that caring for special needs children is not always easy but I would not trade them for the world (of course we will be throwing one heck of a party when we cure Rett Syndrome!). Boston and Brooklyn are my two little angels and I could not imagine my life without them in it. I love them so so so very much. I might not have helped bring them into this world but they fill MY world with love! 

Saturday, June 14, 2014

Together with Evie


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
My Princess, My Everyday Light - by Juan Diego Perez
Being Avery's Dad - by Bryan Beeson
She Melts My Heart With a Single Smile - by Phil Covington




Written by: Frank Morris

I was recently asked if I would be interested in writing a post about my daughter and our relationship. After going back and forth in my head whether I could or would, I decided to give it a try. You need to understand that I am not the writer in my family, that would be my wife. If you have read her blog you would agree that she is quite good at it. For me it is much harder to express my feelings verbally, much less express them in written form.

Three and a half years ago when my daughter was born I was blown away. She was gorgeous! The things that stuck out at the time were her wonderfully long eyelashes and her long graceful little fingers. I thought, "There are the hands of a pianist." As she grew, healthier issues started to appear. First it was the lack of meeting milestones. Then it was hypotonia (low muscle tone), upper respiratory problems, scoliosis, and seizures. For the first couple of years it seemed my beautiful little daughter was inundated with issues after issue. In my mind I couldn't understand what she could have done to deserve the cards she had been dealt. It took two and a half years to learn the cause.

We finally received a diagnosis of Rett Syndrome in February 2013. Now we had a name for the culprit, not that it made anything easier, but at least we had a name.

Like any child, my daughter has her own unique personality. She has a wonderfully bizarre sense of humor. She laughs at things that some people would consider inappropriate. Slapstick humor makes her giggle the most so I often find myself making weird or rude noises to her to laugh. She has the most infections laugh I have ever heard. You can't help smiling when you hear it.

Probably the hardest part for me to see is her frustration. What I wouldn't give to make it easier for her to be able to communicate in a way that alleviates her frustration. The last three and a half years have been hard, scary, wonderful, and joyous all at the same time. She has made me a better person than I was before she came into my life. Where our journey will go...I don't have any idea. What I do know is that we are taking it together and for that I am thankful.