13.1 miles for love

If you had told me a year ago that I was going to run my first half marathon in February 2012, I would have said you are crazy!  I could not even run to the stop sign without getting a shin splint, let alone 13.1 miles!

Well, sometime around the end of the summer someone affiliated with Girl Power 2 Cure got this great idea (yes there is some sarcasm here!) to get a Girl Power team together to run the Disney Princess Half Marathon.  I kept looking and looking and looking at the posts on Facebook every week.  Then one day after seeing a post I started thinking about this run.  Thinking, that I am crazy, this is 13.1 miles and you hate running!

Then I thought, Emilie, do you think you can actually do this?  Do you think you can run a half marathon?  Maybe was the answer I told myself, maybe if I had some friends to laugh and cry with every step of the way!  So I asked one friend and then another friend and before I knew it, I had four friends who said YES!  And then three more jumped on board!  SEVEN friends running a HALF MARATHON for Anna Cate….there was no turning back now!  Will was a little skeptical, as he didn’t think that I would “stick with it” as I tend to start and not finish some activities.  If I was smart I would have made a bet with him for something!!!

Luckily for me, many of the runners on the Girl Power 2 Cure team were first time runners too, so Girl Power 2 Cure was fortunate enough to have Chris Twiggs from Jeff Galloway put together a training program for us.  This was music to not only my ears, but my legs and feet too!  For those of you who are not familiar with the Jeff Galloway Method, it is a run/walk combo.

After five months of training, half marathon weekend was here!  I can not begin to tell you how moved I was to have seven wonderful friends join me in Disney to run a half marathon for Anna Cate.  Despite my crazy life of sleepless nights (which got better during the training….THANK YOU ANNA CATE!), doctor and therapy visits and chasing my other two munchkins around with their daily needs (and wants!), I still found time to train for this race.  While, my friends who ran with me do not have the “special needs mom” title and all that comes with it, they still have their families, a job and all the every day things that come with being a wife and mother….and they still found time to train for the race too!  Thank you to all of Anna Cate’s Fairy Godmothers for taking time away from the important people in your life to help someone special in mine.

Here I thought we would go to Disney and have a relaxing girl’s weekend away before race day on Sunday.  I not only came home exhausted, but sick as a dog!  We left here Friday morning at 7AM (got up at 3AM, left for the airport at 5AM) and we were on the Disney property by 10:00am!  After picking up our race packets we headed to Epcot before dinner.  By the time we ate dinner at 8:30PM, I had hit the wall!  Wow!! I was exhausted, but then again I was up for 17 ½ hours!!!  And here my dad and step mom flew in from Texas to cheer me on and spend time with me and I was falling asleep at dinner!  I felt awful, but there was nothing that I could do, except maybe I could have tried to keep my eyes open with toothpicks!

On Saturday surprisingly we slept in till 7AM (sad when sleeping in is 7am).  And then headed to Magic Kingdom, which is always so magical!!!  Disney is fun for me with and without kids, but your perspective changes once you see Disney in the eyes of your children.  It was fun to go on rides with my friends and act like children ourselves!  After a fun filled afternoon we went to our Girl Power 2 Cure team dinner, where we officially meet Chris Twiggs himself!  He gave us a motivational speech, we meet our team members who we have been talking to on Facebook for about five months, and we got to meet three special ladies who would continue to be our inspiration for the next morning’s run!

After dinner we headed back to the hotel to try to get to bed early as 3:00AM was going to come real fast.  Yes, that is right; 3:00AM is the time that we had to be up, as we needed to be transported by Disney to the race area by 4:00AM!  We did it and we looked like it was 3:00AM too!!!  A couple of us even wore our pajama bottoms under our running skirts to keep warm until it was our time to run.  Yes, I was one who donated my pj bottoms and an old sweatshirt to charity!  I can not stand to be cold!!!

By the time that my corral started the race it was 6:15AM.  I had my good friend from high school, Sally, run with me every step of the way.  By the time we got to mile 3, we looked over to the left and saw the girl who would be the “winner” of the half marathon on her way back to the finish line!  We had 10 more miles to go and she had 3!!!  It was unreal!

Disney did an OUTSTANDING job of having something for you to look at all along the way to help take your mind off the race.  Characters, bands, the actual parks, cheering crowds, looking at the outfits people dressed in (some wore full on costumes!), you name it!  People actually stood in lines to wait to get their picture taken with a character!  We did not, but we did get our picture taken after we ran through the castle in Magic Kingdom, as we couldn’t resist! 

Thinking back on the race now, I don’t know if it was the fact that there was so much to look at all along the way or that I had an incredible friend to talk to the whole time or a combination of both, but the run wasn’t bad!  It was actually great!  Crossing the finish line and getting that medal was a feeling you can’t imagine, you have to experience it for yourself!  And if you are running the race for someone or for a cause, it makes the feeling even more emotional. 

Will I do the Disney Princess Half Marathon next year?  You bet!  Without a doubt!  And instead of having a team of eight on Anna Cate’s Fairy Godmothers, I would like to double it and have a Sweet 16!  Where else can you go and be treated like a Princess and be a Fairy Godmother?   

“You will feel fulfilled when you do the impossible for someone else”

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Will you be my Valentine?

What did you and your special Valentine do for valentines this year?  I always try to find something fun to do with Anna Cate for her classmates, but more importantly I want the valentines and treats to come from her.  Of course, I could buy valentines, sign them with her name and be done with it. It would be a lot easier and quicker, but then she didn't have a say in them like every other child.  

Like many people, I am addicted to Pinterest and found some really neat tags for Anna Cate to give to her friends.  Once I found the ones that I thought she would like, I had to think how she was going to be able to help me do them.  We picked two different ideas, one for the boys and one for the girls.  

Anna Cate requires help with all aspects of her valentines.  Not only does she need help making them, but I also wanted to make sure they were age appropriate for her peers.  My creative side, wanted them to be fun too!  

I want her to be involved with the process as much as she could, after all they are HER valentines not mine.  So Betsie opened each bag and we counted out the number of candies per bag as she dropped them in.  When we were finished with each bag, I would call out a classmates name and then ask her to point to which tag she would like to put on their bag.  Before attaching it to the bag, I had her stamp her name on the back, as she can not sign her name.  This was a fun activity for Anna Cate and Betsie to share together too!

If I didn’t take the time to help Anna Cate, then her peers would know that I did them for her and I don’t think it would mean as much to them.  Now, they will see that she stamped her approval on all of them and know that she did her Valentine’s Day treats just like them!  We turned a fun activity into a learning experience, but she didn’t see it that way!  Anna Cate worked on her counting, colors, names of her peers, fine motor skills and everything in between!  But to her, she was doing her valentines and having a taste test with the candy!  

New Jersey Clinic Visit

Anna Cate had a great check up at the Natural History Study clinic last weekend. As you read from my earlier blog, I was going into our appointment with fear of hearing the words that Rett may be taking a bigger toll on her body, but I am THRILLED to report those words were not SPOKEN!  

In fact, we heard how strong she is!  Yes, she is as strong as an OX!  Anna Cate is pretty much solid muscle and the grip that she has on her hands is that of a suction cup on a mirror!  Her doctor couldn’t even get them apart!  However, she has no problem releasing them to hit her ball back and forth with you or when she wants to release them.  

Patience is key in her recovery from surgery, along with therapy.  So we are going to increase the amount of physical therapy she receives weekly and hope that she will regain her strength back quickly!

It is also wonderful to see all the families we have met over the years since Anna Cate’s diagnosis and to see their beautiful daughters too!  I love seeing how the girls have grown and skills they have gained since our last visit.  Being at clinic is the one place where you do not have to explain anything about your daughter, because everyone understands.

As we were leaving, there was one family who came up to us and said that they love seeing Anna Cate every year, as she is a breath of fresh air to them and is their inspiration for their daughter.  As they walked away, Anna Cate said “bye” and blew them a kiss.  Just like I have to remind myself now with her recovery to be patient, I reminded this family that repetition is key.  Anna Cate did not wake up one morning and do all that she can.  We practiced over and over and over again until finally one day it clicked.  And when the day comes ,when a word you have been working on comes flying out, you will realize all the repetition and patience was well worth the wait!

How far we have come....

On the eve of our annual appointment for the Natural History Study Anna Cate is a part of, I am sitting in the hotel room in New Jersey thinking about how far Anna Cate has come since her diagnosis of Rett Syndrome. Anna Cate has only had her diagnosis with Rett Syndrome for five years, and while it seems like it has been forever, it really hasn't been that long.  What seemed longer to me, was living in the "unknown" zone for the three years prior.

The little girl who didn't have a diagnosis at the ages of three and four was an adorable, burst of energy.  She had this walk where she would swing her arms, like she owned the place.  She was very confident in herself to say the least.  This same little girl also could not sit and work at a task for more than 25 SECONDS, when she was three.  Yes, that is correct, not even HALF A MINUTE.  She had at least four different high pitch screams that all meant something different.  She only had about 20 words.  She wasn't potty trained.  She couldn't feed herself unless it was a finger food.  She would pull her hair out.  It would take her HOURS to go to bed and many nights we would have to drive her around for over an hour to get her to fall asleep in the car.  And then PRAY that when you transitioned her from the car to bed, she did not wake up!  She was afraid of the noise of an airplane flying overhead if we were outside.  Her favorite movies were Elmo and The Wiggles...FOREVER.  She had behaviors when she would get upset.  She had friends, but not friendships.

She loved to play with her ball and nothing came between her and her favorite toy.  She not only had a mean volleyball hit, but also an incredible drop kick.  She loved flipping through magazines and photo albums, and never forgot a face.  She loved to swim in the pool like a little fish.

Today, she is a beautiful ten year old still full of energy.  I would say she is still confident in herself; however, the arm swinging walk, has been replaced  by her hand wringing.  I think that she is still confident in herself because she knows that we and her team at school believe in her.  She now can sit at her desk and work on school assignments for OVER 45 minutes, if not longer.  She loves to learn!!!  She is learning to read this year, and it is AMAZING to see.  I can honestly, say I never thought this would be a possibility for her.  She does not scream anymore, unless she is upset and has a behavior.  I wish that as she got older her behaviors would have decreased, but unfortunately this is not the case.  She has over 70 words (approximations and letters sounds too) that she can say!!!  This is huge!!!  We are very lucky that she can say most names in our family (Mommy, Daddy, B (for Betsie) EI (for Eli), Ne (for Granny), Nanny, Mama, Mimi, Poppy, Papa, Popo, Ah-me (for Amy) and D (for David).  She is potty trained and will let us know if she has to go...this was at least a three year process, and now looking back, it seems like forever ago. But when we were going through the process, I thought we would never get where we are today.  Patience.

She can feed herself with a fork and hold a cup to drink!  She usually falls asleep now within two stories and if she wakes in the night she can put herself back to sleep 70% of the time.  This is all new within the last four weeks and is HUGE for our family.  Finally in ten years and with three children, we are not sleep deprived!!!
Noises are not that big of a deal to her anymore.  She has become used to most everyday sounds that are in her environment.  And I am beyond thrilled that we are no longer watching Elmo and The Wiggles!  We have moved on to age appropriate shows like Wizards of Waverly Place, Hannah Montana, Shake it Up, Good Luck Charlie and her favorite movies are Monsters Inc, Shrek, Soul Surfer, Justin Bieber, all three HSM, and anything Hannah Montana.  And she has FRIENDSHIPS!!!!!  My last blog post was all about her friends.

The ball is still her favorite toy of choice and her hits or kicks have only gotten better.  She never takes her eye of the ball and can even hit it without looking at the ball and nails it at you every time!  She loves to play Connect Four and to swing.  She can tell you "push me" now when she wants to go on them!  This was her FIRST two word combination.  She can also say "good morning" and "good night"!  And not only does she still love to swim, pool is one of her words she can say and we can't even spell it forward or backward in front of her, as she knows what we are talking about!  If we do, she instantly starts saying "pool, pool, pool!" And you better me ready to take her to one, as she will not stop!

A year ago at clinic we were told that tendon surgery was in our VERY near future.  Well, in September 2011  she had the surgery and her walking hasn't been the same since.  It truly has only been seven weeks since she has been able to weight bear with and without her brace on, but I wanted her walking to be back to the way it was yesterday.  I know I have to be patient, but I do not like to see her like this.  I will also be honest, that I am scared that this is also Rett taking another toll on her little body.  And I am scared to hear these words.  I pray every night, that she gets stronger and builds her strength back up in her legs.  I know she will!

Anna Cate is a strong little girl, who NEVER gives up.  I know that she will get through this rough patch and will we climb this next mountain together.  It may be a longer climb to the top, but we will do it.  I am so proud of how far she has come and I can't wait to see in the next year, how far she will have gone.  You amaze me every day Anna Cate!

I get by with a little help from my friends…..

Anna Cate is so blessed to be in a school with so many truly caring friends and teachers.  The amount of support she receives from her peers sometimes is astonishing.  They are by her side and help her, play with her, encourage her and choose her to be their partners in school projects (I think this is my favorite!).   They see her just like one of them, but when they have questions they are not afraid to ask and to learn. 

The smile that these friends bring to Anna Cate daily is priceless.  When I am having a bad day, I like to look at these pictures as seeing the smile on Anna Cate’s face makes me smile! 

Ever since Anna Cate’s diagnosis, my biggest fear would be that she wouldn’t have friends.  Friends are a part of growing up and I did not want Anna Cate to go through life alone besides her family.  I didn’t want her to sit at lunch alone, to not get picked to be partners in class, to not have play dates…the list is endless. 

I have to say that this should have been the least of my fears.  Anna Cate is not only liked by many, but loved.  The girls want to be her partner on projects, they pick her to play with on the playground, they fought over pushing her in her chair when she had her surgery, they pick her to have lunch with them when their parents come to school and they invite her to their birthday parties.  They treat her like their other friends and that is all I wanted for her. 

I do still have a slight fear, that as these friends get older, they may change as I know middle and high school is a very trying environment, but I hope I am wrong.  Especially as Anna Cate gets older, friends are going to be even more important to her. 

A friend of Anna Cate’s will learn so much about friendship from her.  Anna Cate will not talk about you behind your back, Anna Cate will not repeat things told in confidence,  Anna Cate will not make fun of you.  Anna Cate will just be by your side and listen.  She will not judge, she will just be your friend.  Anna Cate will enjoy your company for who you are, no need to impress her.   And if you are lucky she will leave you with her contagious smile until you meet again.

I will not dwell on the future, but did want to mention my little fear.  Instead I will enjoy all the pictures being sent to me from her friends parent’s, all the notes she gets from her friends saying how AWESOME she is, the high fives she gets in school and the smile on Anna Cate’s face when I mention her friends names.  A smile takes a moment, but the memory of it lasts a lifetime.

Happy New Year

You know what they say, time flies!  I can’t believe how fast time does go by and that the last time I wrote on my blog was in October!  I am going to try my hardest now in the New Year to write more.

Happy New Year!  Our holidays were filled with lots of laughs and giggles and were pretty relaxing.  The kids were definitely ready to go back to school and I can’t deny I was also ready to get back to our daily routines.

And in the daily grind is training for a half marathon!  I can’t believe that I signed up to run a half marathon!   I’m still in shock to think that I will be running 13.1 miles!   I joined the Girl Power 2 Cure Rett Team in honor of Anna Cate and asked my friends who I knew were runners if they wanted to join me.  I was overwhelmed with joy, when five friends jumped in and said that they would love to be a part of something so special.  And then I found out that another friend was already signed up to run the Disney Princess Half Marathon, but she wasn’t running on a team, so she jumped aboard Team Katie’s Fairy Godmothers!

I have to say that the training hasn’t been all that bad.  And I never thought that I would say that I actually enjoy running.  I do!  I love it!  I find it to be a great stress reliever and something I can do to clear my head.  There are two things that are difficult for me; overcoming my shin splints and continuing past mile nine!  After nine miles, my legs are ready to throw in the towel and I can’t blame them!  But throughout my training when I wanted to give up and walk, when I was supposed to be running, I would tell myself, Anna Cate doesn’t give up and neither will you.  With everything she has been through, a little pain is going to be ok!

We are about 5 weeks away from our girl’s trip to Disney and I am so excited.  Having my girlfriends support me on a daily basis is one thing, but to have them join me on this little journey truly means the world to me.  They are giving up time with their family to not only go away for the weekend, but train for a half marathon.  Their love and commitment to our family is priceless and I am so lucky to have these amazing friends in my life!  I can not thank them enough for being by my side when I need them the most.  I hope they are ready to peel me off the pavement at mile 13.1!

The kids have been back in school for three weeks and they are having a great year.  Anna Cate is still trying to figure out her walking from surgery in September.  Honestly, we did not think that we would be having this challenge with her (she walks like she is the leaning Tower of Pisa).  But it is just one of those “enigmas” that she likes to throw our way.

On another note, her sleep has been getting somewhat better, but that is only because I scheduled a sleep study to be performed soon.  Naturally, as soon as I schedule a test for an issue, the issue gets better!

Betsie is still dancing and has become a Daisy for Girl Scouts.  She has been busy tying up the phone lines calling North, South, East and West selling Girl Scout Cookies.  If she hasn’t called you count yourself lucky.  If she has, thank you for supporting her troop!

If you would like to order some cookies that we all love, please let me know and I will have my people call your people!

And Eli leaves me laughing every night, well….okay….most nights!  He started his soccer class back up and loves every minute of it!  I can’t believe that my baby is going to be in JK next year.  School contracts came home this week and I can’t believe he only has one more year, before he goes to kindergarten.

Will has been a busy bee at work and is looking forward to his work year ending at the end of the month to take a little time to breathe…I hope!

And I have been busy organizing around the house and thinking of ways to fundraise and create awareness for Rett syndrome for Girl Power 2 Cure in a fun and exciting way.  I have also started planning for Camp Amica!  Because before I know it, summer will be here! 

Cheers to a Happy and Healthy New Year!

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!