Goodbye Summer 2013 - Hello 5th Grade!

Back To School Eve - goodbye summer 2013! It's been a real rollercoaster & one for the books! Camp Wonder opened up so many possibilities for us! Seeing old friends & making new ones on the other side of the country = priceless! Bee attended a regular summer camp w/her friends & while we were not sure how things would turn out at first we are 100% happy that she got to enjoy her time during the summer days indoors meeting new people. She went on field trips with her camp on her own several times with no issues – movies, park, museums…you name it she did it!

Today we spent the day with two of her closest friends hanging out by the pool, talking about the upcoming year’s events. While many great activities are planned for the 5th graders there is also an underlying preparation into middle school. Bianca has (7) teachers in total – (1) homeroom/math/social studies, (1) reading, writing & English, (1) science, (1) music, (1) Spanish, (1) art & (1) P.E. (which she’ll just do inside – writing/reading up on sports! We were told that there will be tons of moving back and forth through the day. I’m so thankful for her nurse who deserves an award for sticking around so long – this will be her sixth year with Bianca. We have been truly blessed with having her around!

While it’s bittersweet to say “au revoir l'été 2013” it is another level of success we’ve reached in the limitations that were laid out to us in 2002. The independence reached this summer by Bianca is astounding – the second to last week at camp she was hurt by a 3 year old child. While she was explaining to me what happened she could not stop stressing that he was just a little kid who did not know any better. She went into the bathroom on her own, sat down, called me and I stayed on the line while she handled the wound on her ankle. What’s different from any other time she’s patched herself up? She had to undress the bandage, cleanse the wound & re-dress it. All while making sure she would be comfortable walking on it until we went to pick her up in a couple of hours. This in itself was pure victory. She’s always been okay in cutting a piece of bandage and placing it to where the exposed skin was hurt. She never had to do a deep dive into wound care by herself like she did a few weeks ago.

So with that I say be safe tomorrow Miami and any other city starting school! Kids are out and about once again. So plan ahead – get up early – drive with caution. Our future is walking around the streets tomorrow.

5th Grade Here We Come!!

A Little Back To School Prayer

Lord, on the start of the 2013 school year bless my child with focus, friendships & fun.

Bless her w/understanding & comprehension for the classes ahead.

May she know that she can raise her hand & ask all the questions necessary to understand the lessons.

As well as speak up when she's feeling uncomfortable in a situation.

May she continue to be blessed w/loyal friends who bring out the best in her & each other.

May she be as positive & healthy as possible!

May her teachers, nurses & all of those she comes into contact with have firmness in their ways but compassion in their hearts.

I ask all this in the name of the Father, Son & Holy Spirit.

AMEN! (♥ you my butter).

 

 

Carnival, Talent Show & Prom OH MY!

So here’s my promise to try and do a follow up blog to the amazing adventure Bianca had at Camp Wonder! Bianca’s cabin was filled with so many fun girls and an amazing group of counselors. There was a Carnival theme day where they were all able to have some carnival fun! There were masquerade masks and tons of fun beaded chains handed out – I know because a nice bag size of those made it home with us. There was also a fun cupcake activity event! She said she chomped it down!

Another fun event for Bee was the Talent Show. Apparently there’s a video floating around somewhere of her singing “I’m wide awake” by Katy Perry. Sadly it hasn't surfaced for me to experience it…she received some great compliments that were passed down to me. She also did the “Cup (When I’m Gone)” song  by Anna Kendrick while she juggled around some cups. Still to be confirmed but I did manage to snag a great picture of that event!

  

Finally the real amazing day she had was the one that hosted Camp Wonder’s Prom! Camp Wonder sets this up because, sadly, many of these children do not get to experience a real prom. From what I understand there was a boy that was interested in asking her to the prom but he just didn't know how to approach her…how CUTE is that?!? Apparently, my child at the end decided she wanted to go to prom “stag”! She was more interested in hanging with her girlfriends than a date for prom. We weren't ready to have her go to prom but apparently Camp Wonder had everything in place for the kids to look dapper at their main event. You see, Camp Wonder managed to get all the prom attire donated by the employees of Cetaphil US – dresses, suits, ties, you name it! It made for such a fun event to just pick out a prom dress! So here I am thinking Bee is going to get a modest dress with sleeves and very comfy. BOY was I wrong! My daughter decided to pick a black/white tulle dress with tons of prickly, shiny and beautiful details. Oh and sleeveless! I do admit she worked that dress.

  

Over all her experience at Camp Wonder was such an empowering one! She did mature about a year or more! She seems more confident and in actuality feels more at ease that she’s in good company when it comes to speaking about EB to her peers. I have seen her form some amazing friendships and created some unforgettable memories! I can only pray for good health and many positive days ahead of 2013 into 2014 so she can make it back to Camp Wonder next year!

I have to give some personal thank yous to a few people out there! Christine Tenconi who contacted me and answered many questions I had regarding camp, including setting up all the travel arrangements and my endless emails. Also, Francesca Tenconi for having the same ease and confidence to have established such an amazing camp! Dedication and hard work has paid off exponentially for so many families thanks to her unselfish ways! Also, Richard  (I fail to remember his last name) who gave us a stern talking to at camp (by us I mean Robert and I) to let our little girl become even more independent and to have faith that those that are in the med shed really do know and understand about EB and it’s medical involvement/care. Then there’s wonderful Danielle Malchano from National Rehab who not only is a part of our wonderful supplier that delivers Bianca’s bandages every month but was also one of her nurses at the camp that helped Bianca with bandage changes, showers and so much more! Then there are those counselors like Sarah, Alexis and Carter plus Jassamine who texted me a picture here and there to put my worries at ease. Thank you as well to the Taylor Family Foundation for providing such an amazing venue to host this special camp! I am eternally grateful to so many more that I can’t remember a name but do remember a face! This has been overall an experience we will never forget!

See you in 2014 Camp Wonder!