Friday, February 24, 2017

Make A Wish Trip

Where do I begin? There is no way I can sufficiently describe the amazing awesomeness that was Ruby's Make-A-Wish trip to Disney. The red carpet treatment extended beyond any boundaries I could have imagined when she was given the trip towards the end of her treatment last year. (During Ruby's hospitalization we were asked to apply for a Wish for Ruby, and shortly after she finished treatment, we were given the green light that she was approved for a Disney trip. We chose to wait until this week because of school schedules and our schedules and to allow Ruby to be as recovered from the chemo as possible.)
We flew to Florida on Friday night, where we were greeted by a Make A Wish volunteer escort. She walked us directly to the baggage claim and then straight out to the rental car lot where our car (and car seat) were waiting for us. This already felt like star treatment. We then drove about 40 minutes to the Give Kids The World Village (I will dedicate a whole blog post to that place later!) where we were again greeted by someone waiting specifically for us. There was a to-go dinner in our 'villa', and a volunteer walked me through a brief orientation to give me all of the details we would need for the week.
At our disposal, we had several days of tickets for the Disney parks, Sea World, Universal Studios/Islands of Adventure, and many other 'smaller' Orlando attractions. In addition, we had free parking, free photo services, and some perks at each park. The best perk? The mack-daddy of all fast passes at each park. At Sea World it meant getting preferential seating at shows if we wanted, trays of fish to feed the sea lions and sharks, and first dibs in line for any rides. At Universal/Islands of Adventure it gave us first dibs in most lines, and special parking. And at the Disney parks it was a Genie Pass which gave us preferential treatment for photos around the park (including the photo files), fast pass lines for any rides at ALL times, and front of the line privileges to meet the characters.
For reals.

Our first day we hit Sea World, where the big kids rode their first 'real' roller coaster. They didn't mess around either; they rode one that dangled their feet and turned them every which way, AND they rode it twice! We saw several shows, fed several animals, and even got rained on a little. Eli and Maddux loved the sea lion show most. That night we made it back for dinner and having fun around the village.
Lehr and I agree that the character benefits were by far the best, especially for Ruby. Not only did she get to meet way more princesses and characters than she even had a working knowledge of, but many of them gave her lots of one-on-one attention. Our first encounter was at Epcot with Jasmine. We waited in line for a minute, unsure of how to use our pass (we hadn't done that yet), and then Lehr decided to find someone to ask. That cast member not only brought us to another entrance, but she raced us around the back way to intercept Jasmine walking to her post so that Ruby could meet her in the alley and walk with her. Unbelievable.
And when it came time to meet Elsa and Anna? We were ushered into a back room to find Anna hiding from Ruby, so Ruby got to 'hide and snow seek' with her for a minute. The look on her face when she saw Anna was perfect. (This had such a lasting impression that Ruby looked behind the curtain a few days later when she met Rapunzel.) Needless to say, Ruby absolutely loved meeting these two, as they are the only two Disney characters she really knew about before this trip. The Frozen ride was a big hit with Ruby too, as she had the opportunity to sing along to Let It Go and see her favorite characters while she rode in a boat through the scenes. It was very dark in there, but I grabbed some video anyway to get her audio reactions. We stayed well after dinner, but not late for the fireworks. It was such a good day that we didn't want to push our luck.
The big kids definitely appreciated the benefits of having this crazy fast pass access too. Time after time we walked up and boarded a ride within 10 minutes of arriving, even though the lines for everyone else were estimated to be 50-90 minutes. This allowed us to cover a lot of ground at all of the parks.
The following day we opted to split up, leaving Lehr and Ruby at the village to swim and play while I took Eli and Maddux to Universal Studios and Islands of Adventure. The two parks are right next to each other (they share an entrance and parking deck), and they each have a Harry Potter section. We'd decided to focus on that park of the parks, likely not doing many of the other rides or attractions. It's a good thing too because we got three rougher rides/coasters in a row that messed with my equilibrium so much that I ended up sitting down for about an hour afterward to regain my balance. The kids loved the HP stuff, but around 3 they both agreed we should head home to play with Daddy and Ruby. We even managed to go in the pool before dinner because it was so warm out that day! Oh, and the village had an awesome Halloween party that night that we were able to participate in.
We followed that day up with the Magic Kingdom. Another day full of sprinting around the park, hitting many rides. We counted 15 rides, lots of character meetings, two sit down meals, one parade and the fireworks. Pretty impressive...totally a perk of having that pass! Eli and Maddux and I didn't get to Space Mountain until after the fireworks, but they agreed that it was worth the wait. They LOVED it and it was a great ride to end the day on.
Our last full day was full of rain, so rather than slop through another park, we opted to stay back at the village. Unfortunately we didn't get to golf because of the rain, and we only found one hour of non-rain to swim, but there were plenty of games to play, ice cream cones to eat, and naps to take to pass the time. Oh, and the kids got to ride on horses...Ruby LOVED that! After dinner we participated in a Village Idol show and then watched Toy Story in the theater next door. (Did I mention how cool the Village was?!?) Village Idol is where any/all kids that want to perform an 'act' get up on stage and then get feedback from judges (all positive). We saw everything from jokes to light saber skills. Eli, Maddux and Ruby got up and danced to "Bad Blood" - totally impressed that the big kids would volunteer to do that.
Our flight wasn't until after lunch the next day, so we opted to get out early and hit Epcot for a few hours before heading to the airport. After all, we'll never have the access with that pass again! We saw Elsa and Anna again, rode the frozen ride, and hit Test Track...a great end to a great trip!

Wednesday, February 22, 2017


Still on our trip. Today the kids got to ride on horses, one of them with pink hair. This is the conversation Eli and Maddux had:
Eli: Pink horse. So weird...never seen that before. I wonder if it poops pink?
Maddux: (without missing a beat) Nope, it poops white. I saw it this morning

Monday, February 13, 2017

The Dogsitter

Ruby loves dogs. LOVES dogs.
Forever her favorite dog will be Mossy though. Right across the street, calm, old(er), and as tolerant and patient as can be as she puts up with Ruby's constant's no surpirse Ruby loves her so.
And when her family leaves town for the weekend, Ruby has her all to herself. Ruby will let her out to use the bathroom (and follow her around asking her if she has to go, then clapping for her when she relieves herself), Ruby will feed her water and her food, Ruby will pet her and love on her incessantly, Ruby will walk her, and Ruby will give her as many treats as she wants.

Tuesday, February 07, 2017


Our holiday break was so nice. Besides seeing so much of my family for a whole week, the five of us got to hang out and not give a thought to anything responsibility related. For me, that was especially evident in the 'time off' from therapy and school conversations and research about this that and the other. And for Ruby that meant time for her just to be her. Amen.
But when we returned we had a lot waiting for us. A new school for Ruby and registration for next year for Ruby. All within three weeks. Ruby's new class, a special needs pre-K at Maddux's elementary school, started slowly, with a few holidays and snow/ice days, but it was obvious from the get-go that Ruby loved it. Unfortunately, the first full week she had was the same week I had to register her for the following year at her previous (private, 'typical') preschool. Unsure of what exactly to do, I opted to register her for the 3-year-old class, 3x/week. She will turn 4 just before the school year starts, but I think that may be a better fit for her than the 4-year old class, where she would be the youngest in her class.
So here we are, now a month into her current school, and I'm conflicted. I've always been very pro-inclusion. Always in favor of starting as we intend to go. Always on-board with Ruby participating with all of her typical peers. That's why she's been at a private preschool, and that's why we've signed her up for it next year as well. But in the last month, in an environment that we've not wanted for Ruby, we've seen Ruby blossom in a really cool way. She has picked up some new words, spoken out more in school (her speech at school resembles her speech at home now, and it never did in her private preschool), she is rocking the potty training, and she is happy!
It's so hard to know what the right thing is to do. Do we continue to push her to be in a typical classroom because that's what we want for her once she hits Kindergarten? Or do we let her stay in her special needs pre-K because we know she is getting more help with the things she needs help with there in an effort to best prepare her for the typical environment in a few years? Do we fight for her to be in the private preschool next year so that she can learn how to speak up for herself and learn by watching others? Or do we give her more opportunities to be with the teachers that are trained to help her learn her way?
Too many good arguments on both sides of this, and my brain hurts each night after running through the list of pros and cons on both sides constantly all day. For now, we have decided to continue to enjoy the great things we are seeing for Ruby in special needs pre-K. When we have our IEP in May, we will weigh everything again and see where Ruby is at that time.

Sunday, February 05, 2017

Pirate & Princess Ball

Ruby has received many gifts, honors and recognition in the last 18 months because of her battle with cancer. Lehr and I are always humbled and usually feel awkward accepting any of these because it all seems too generous or unnecessary or something. But when I step back and view it from the outside - when I see someone else going through something similar - I want to give the same praise, love, recognition, so we try to be as gracious as possible.
Last night Ruby was one of eight honored guests at the Pirate & Princess Ball, benefiting Team in Training (Leukemia and Lymphoma Society). That meant that she and her family were invited to attend the event for free and be recognized 'on stage' with a gift basket. Lehr and Maddux had other obligations, so Eli, Ruby and I represented. 
I was a little apprehensive about the evening, given it's later start time (7PM) and the fact that I may be chasing Ruby around and wrangling her all night, in heels, but the Ball held a secret weapon unbeknownst to us: Princesses. Shortly after we arrived, Belle and Cinderella showed up and Ruby was mesmerized. She never let them out of her sight all night, and her greeting them for the first time was SO cool. She was humble and quiet - like she was greeting royalty or something. Once the ice was broken, she still gave them mad respect, but she danced and walked and held hands until we left just before 10PM.
When they called Ruby up, she ran through the aisle to the director and even grabbed the mic. No stage fright there! Ruby's former physical therapist was in attendance and was so kind to grab this video of the stunner on stage.

Saturday, February 04, 2017

Father Daughter Dance

Maddux was so disappointed to miss her school's annual Father Daughter Dance last year, so she was very geared up to attend this time around. She even passed up the Princess and Pirate Ball to do so!
Daddy bought her a very cool, very grown up dress for the event and the two of them had a great evening, dancing, eating chicken nuggets, and taking pictures in the photo booth.