Wednesday, October 26, 2011

October is Rett Syndrome Awareness Month

Talking about Rett syndrome is like me asking you how your day is going.  It is part of my conversations with people daily.  Especially in the month of October, as it is Rett Syndrome Awareness Month.  This month has been an interesting month for me in many ways.

On September 29th Anna Cate had her FIRST Rett Syndrome related surgery.  And with this surgery, also came our first purchase of a wheelchair, or what we like to call her "cruiser".  I will be honest, we had many mixed emotions over the purchase of a "cruiser", as she is mobile, but tires after long days of being out and about.  But at the end of the day, we want what is BEST for AC, and what is BEST for her, is for her to be comfortable and happy.  Anna Cate had a tendon lengthening surgery on her left leg and has been quite the trooper to say the least!  The bigger challenges have been showering and carrying her up and down the stairs these past two weeks and we have two more to go!  Can you say MASSAGE in the future????

Everyone has stepped up and helped with every aspect of care for not only AC, but Betsie and Eli too!  My aunt even flew in from Boston!  I guess she wanted a taste of the craziness too!

I pray that the surgery was a success and that Anna Cate will be able to be off her toe on her left side and be flat footed once again.  I just hope with one step back, we don't see any other setbacks and can move forward.

Her surgery came up very weekly as Camp Amica was at the end of August, then school started, and then we surprised the kids with a trip to Disney (deserves its own blog post!!).  But during all of this down time, I have had some "me" time again to think.

After my summer camp and seeing how happy Anna Cate was to be around her typical peers who are her friends, it hit me like a ton of bricks, that my passion is to make sure that she can live the most typical life she can as a 10 year old, just like her peers.  This was how I was also going to spread awareness and raise much needed funds for Rett Syndrome.  

As many of you know, I was the State Representative for the International Rett Syndrome Foundation.  I was one of the families first contacts when they would enter the world of Rett Syndrome and I also would connect with all my families in my State asking if they needed to talk, help, etc.  Without going into too much detail, I realize that sometimes the best way to handle things isn't always the easiest.  I am no longer the Rep for IRSF, but that is okay, as I know that when one door closes, another door opens.

The door did open as I was accepted to the Board of Directors for Girl Power 2 Cure!  For those of you who do not know, Girl Power 2 Cure is:
          a 501c3 nonprofit organization dedicated to raising awareness and funds for treatments and a cure for Rett Syndrome, a devastating neurological disorder that almost exclusively affects girls.

We are committed to making Rett Syndrome the first reversible neurological disorder by harnessing the spirit of girls to support fellow girls who are suffering. We support girls in the planning and implementation of events that raise awareness and funds for Rett Syndrome Research, as well as support Rett families with resources, fundraising help and awareness tools.
Our inspiration is our flower:  always in bloom with hope and positive energy, ready to grow anywhere there is someone ready to join in our mission.

My passion for my daughter is that she can be just like any other girl her age.  I wanted to become involved with GP2C on a higher level as everything I do for my daughter is about believing in more, in life, in a chance, and my passion parallels the mission of GP2C.  By harnessing "typical" peers to support girls who are suffering from Rett syndrome, GP2C is helping those around our "girls" to learn new creative ways to be, do and think.  I couldn't be happier to be involved with an organization with so much hope and positive energy.

With my new involvment with Girl Power 2 Cure and Rett Syndrome Awareness Month here, Anna Cate, Betsie and I hosted an all girls event at our house on October 16th!  It was called Pedicures and Pumpkins!  We had two awesome women come paint everyone's toes different shades of purple and if you wanted they would add the flower to your toes!  Pumpkins were everywhere!  We had our own mini pumpkin patch where our  guests picked a pumpkin and then painted the Girl Power Flower on it to raise awareness at their homes.  Everyone enjoyed (or I should say devoured) delicious Girl Power cupcakes made by a friend who started her own business, Kakealicious.  And then event would not have been complete without Girl Power!

Anna Cate had so many of HER friends not only come to enjoy, but who wanted to HELP with the event!  I was the only adult, the rest of the show were all AC's friends!!!  It was so amazing to see them work together for Anna Cate.  They loved every aspect of the day and they were the BEST at selling Girl Power 2 Cure bags and flower decals, as well as, flowers to plant a garden of hope for Anna Cate and all girls living with Rett Syndrome.  Nothing stopped them and when one wanted to go to another station they made sure they had someone to cover their station where they were working.

All of our friends who attended I truly feel left here on Sunday feeling that they not only made a difference, but really had a better understanding of Rett Syndrome after meeting two girls living with Rett Syndrome.  For me it was really touching to see mothers and daughters enjoying themselves while supporting a cause close to my heart.  It is obviously hard for me to do some "typical" mother/daughter things like getting a pedicure with Anna Cate at a salon, so I brought the salon to us!  And it was incredible to share this moment with friends who believe in Katie!

At the end of the event I was walking around taking pictures and my husband (ok, there were a couple of boys there showing BOY POWER too), called me outside.  He had found the best picture opportunity to end my pictures for the day.  On the table where the girls were painting pumpkins someone painted, "I love Anna Cate", and a pumpkin had written on it "find a cure".  I couldn't agree more with these two two statements!  But knowing it was her friends who wrote these words makes me happy to know that we are making a difference together, but also makes me sad that they even have to use the word "cure" when talking about a friend.
Anna Cate, I love you and we WILL find a cure!