Tuesday, March 21, 2017

So Familiar

Last fall, a long-awaited film came to select theaters for a one night showing: To Joey, With Love. It was the work of Joey Feek's husband, Rory, chronicling the last few years of her life. I'd followed their story ever since their daughter was born, and was totally immersed in the last few weeks of her life as Rory shared them with the world on his blog. And while I had read his many blogs and already watched his many short video clips throughout that time, I was anxious to see the project he worked so hard on through such a hard time. Along with half a dozen other moms from my Gigi's circle, I bought a ticket and saw it. In short, the film was amazing. Such a hard story, but it was laced so thoroughly with faith and love and God. I was so happy to hear they opened up another night at theaters, so I went again and invited a different circle of friends because I had to share this touching story with as many people as I could.

When they released the DVD over the holidays, I bought one for myself, one for my mom and one for my mother-in-law. Again...gotta share. Because life is busy, it took almost three months of owning the DVD before I was able to find a night when I could sit Lehr and the kids down to see it. That night finally happened earlier this week.

You'd think I would be able to make it through, having seen it twice already, without so much waterworks, but no. This film, and story, definitely has a cumulative effect on me. My first viewing had tears, the second had more, and the third...I even got to step out for 30 minutes to get Ruby to bed right at the point that things got really real, but I was still a mess the rest of the time.

Besides the obvious reasons for the connection - who can't or doesn't want to connect with a story of a husband and wife's beautiful love story and who hasn't been touched by loss - this film hit me in so many places that were unintentional. Like I said, I've followed this family since Indiana was born because she has Down syndrome. But this movie isn't about that at all, so I didn't expect to tap in to that portion of my emotions.

But watching the movie, watching the footage of Indiana at days old, weeks old, months old...it all was so familiar. SO familiar. From the confused parental grief to the adorable facial expressions to the similar mannerisms that I never realized might be part of Down syndrome and not just part of Ruby....everything hit oh-so close to home.

And here's the thing I realize every time I've seen this film. Ruby is more alike than different when it comes to her typical peers, when it comes to her siblings. But she is also very alike some of her friends in the Down syndrome community too, in ways I never realized. Now there are so many cool things I see in other babies that I recognize from Ruby's babyhood. The baby eyes that just search out connection and don't break your gaze. The desire to connect with every person around them, bringing new meaning to the term 'outgoing'. So many awesome similarities in the sweet way they interact with peers, in an incredibly empathetic way. Almost every scene in this film brought me back to Ruby's early days...

So there you go - you'd think I was getting paid for this pitch! I just can't say enough good about this film and the gift the Feek family was given in Joey, especially during this time with the recording of events.

**Sidenote: I'm now reading Rory's book, This Life I Live. If you enjoyed the movie at all, you will love this book. That guy can tell a story in such an easy, real way.

Wednesday, March 15, 2017

Golf

Eli has dabbled in the sport of golf for many years. Usually in the spring, with the Masters and the warm weather, he will pick up a few clubs and create a course around our yard, we will take a family trip to the driving range to hit a few bucket of balls, and Lehr or Grandpa Jim will take him to play 9 holes once or twice before summer arrives. When we were deciding about middle school for Eli, golf was on his 'pro' list for private school. He was very excited at the opportunity to join a golf team.
Just after the holiday break, Eli had to make some quick decisions regarding sports. He has always loved baseball, so he was interested in trying out for the school team. Given how sporadic and full the rec league that he usually plays in is, we told him we would not be able to do both school and rec. The kicker was, registration for the rec ended before the team tryouts for his school. Eli made the choice to take a chance and hold out for his school team.
Then we found out that it would not be possible for him to participate in both baseball and golf at school, given their schedules. So if he made the baseball team, he wouldn't be on the golf team. Another hard choice, but he decided to go ahead and try out for baseball. Unfortunately, he didn't make it. It was a long week of tryouts, following a few months of practices with the team. Instead of being disappointed though, Eli smiled and said, "Now I can play golf!" We were super impressed with how Eli handled this; I know he had to feel at least a little deflated. His best friend made the team, making it even more difficult, but that day they walked out of school (after having just found out), arms around each other, joking and laughing. They tried so hard to make the other one not feel bad about the way it turned out...best friends indeed.
Golf started up a week or so after baseball: Eli has one practice a week and one match a week. There are 12 kids on the roster, and each match only needs 4-8 players, so we knew Eli would not be playing in many matches. Being a new member to the team meant that he could earn spots in some matches, but likely not many. However, he was able to participate in the first three matches, based on his work at practice and a last minute schedule change for one match. During his last match, the score was kept off of the best team ball each hole, and Eli had several of his balls counted for the team score!
Eli is nothing if not passionate about his sport de jour. It was very evident to me this week as I drove him to his practice in 32degree weather and 17mph winds. He loaded on some warm clothes, hopped out of my car and started swinging his clubs outside while he waited for his coach to arrive. (I would have waited in the car until the last second!)

Friday, March 03, 2017

Ruby Updates

So much talking with this girl! As I've mentioned before, when we see growth in the area of speech, we usually see decreased articulation (more to say means rushing through previously mastered sounds), but that is a price we are willing to pay. So many of our friends, Ruby's therapists, and people in our community are able to understand her and carry on (small) conversations with her right now. Love it!
Ruby will tell you what song she wants to sing ("Go" for "Let It Go", "bus" for "Wheels on the Bus", "Bad Blood", or "Pi-der" for "Itsy Bitsy Spider"), she will tell you what she wants to eat or drink (usually "Muk" to drink these days), and she will tell you to "go way" when she wants you out of her space. The list of words this includes now is too long to list; she really gives me new words pertaining to her surroundings on an hourly basis. It's a very cool time for Ruby!

A few of my favorites from her:
  • "Bless You, Mommy" - anytime she hears me sneeze (just in time for spring pollen!)
  • "Thank you, Mommy" - She says this ALL of the time, and unprompted mostly. If you put on her shoe, or give her a cup of water, she will look at you and say this so sweetly!
  • "Sing" - She will usually say this to me or Maddux, as in "sing for me!"
  • "Bye-bye, Daddy. I love you." - Yes. All of that without any prompts. Perfection.
We are still not receiving PT services, but last week Ruby did start Aquatic Therapy. Once a week she will be able to jump in the pool with a therapist and work on some PT skills in the water (core strengthening, jumping, etc.) and hopefully pick up some swimming along the way.

Wednesday, March 01, 2017

Give Kids The World Village

This could be a very long post. The Make-A-Wish trip we were afforded last month was amazing and it was only in part due to the cool experiences the kids got at the theme parks. Our lodging was at Give Kids The World Village, and to say it was awesome just isn't enough. (Though Eli said that about 200 times!)
To start with, here is some background. When you take a Disney trip through Make-A-Wish, you don't stay on Disney property, but rather this amazing village, just down the street. Give Kids The World Village is a 79-acre, nonprofit resort (coolest, most kid-friendly resort ever!) that provides weeklong, cost-free vacations to children with life-threatening illnesses and their families. And when they say cost-free, they mean it. There is nothing you will pay for while at the village: food, entertainment, lodging...nothing.
The first night we drove in to see the above sign and this building. A volunteer came out to our car and directed us to follow her golf cart to our villa. (The villa was huge: two bedrooms, a kitchen, sitting room with TV, washer/dryer, and two bathrooms. The 'master' bath was in the kids' room and had a walk-in shower, two sinks and a jacuzzi tub!)
She let us in, showed us around, gave us dinner (it was 9:30PM but they knew we'd been flying during dinner time) and then sat down with me for a 30 minute 'orientation' while Lehr and the kids got settled in. At this time she gave me all of our tickets and buttons for the parks (along with verbal and written instructions), she gave me the rundown of the village amenities, maps, and answered any questions I might have not thought to ask. Plus we got a guidebook covering anything she said that I may forget (there was a LOT to remember!), and told me to call the desk when I needed a verbal reminder.
The next morning we got to try out some of the services available to us. We rode on a carousel (as many times as we wanted with no line), called for a ride to breakfast (golf-cart style, but extra long), walked into a free breakfast buffet (complete with volunteers standing around waiting for you to arrive so they can walk beside you, carrying your tray as you choose your food), and beautiful grounds to walk around in.



When we returned from Sea World that afternoon, we ate a free dinner (same set up as breakfast), played in a game room with interactive train sets, arcade games, pool and ping pong and 4 gaming systems and plenty of games, rode on more carnival type rides including a train that travels through part of the property, and we ended up at the Castle of Miracles. Every Wish Child that visits the Village gets to decorate their own star and go through the process of sending it to a star fairy who will place it in the Castle to remain forever. The next day, we were able to go back and visit Ruby's star, as the location was given to us (along with a souvenir star to take home). Ruby's star is in the blue room pictured below.
 In the Castle of Miracles there is also a spa where the kids could get airbrush tattoos, face painting, make-up or manicures. During our trip, Maddux got everything done at one time or another, and Ruby got one airbrushed tattoo.
Oh, and we finished the night up with ice cream. Because there is an ice cream parlor in the center of the Village that serves ice cream from 7:30AM (what?) until 9:30PM. We hit that thing at least once each day, and yes, we did have ice cream with breakfast one day.

The two other areas that I need to mention are the incredible playground and the pool. The playground is Candy Land themed and so so fun. Everything is bright and colorful and covered from direct sunlight. The big kids loved running around in there as much as Ruby did.
And the pool. The pool area was SO cool. Pictures don't do it justice. It is a zero entry heated pool that I think topped out at 4 feet. Several side areas so it never felt crowded. Beautiful landscape all around to make you feel very relaxed and 'tropical'. There are towels and refreshments available to you, courtesy of the volunteers, of course. And then right next to the pool is a HUGE splash pad that Ruby ran around in for close to an hour during her first visit. So many fun interactive parts to that. Just behind the splash pad is a really cool pirate ship that we're told is for shows/stages. I assume it is used during the Pool Party (we missed it while we were at Epcot).
 
Other things we got to take advantage of include movies in the theater (Maddux and I went to see Toy Story),
Horseback riding,
the incredible weekly Halloween Party,
Character Meeting,
and Village Idol.

The grounds are beautiful, and we missed out on a few things: fishing, mini-golf, the tuck-in service by the Village mayor (a bunny character comes to your villa and reads you a bedtime story), some of the cool night events...but the things we got to do will remain in the kids' memory forever. (And if not, there are photographers at all of the 'main' things taking photos for you that they put on a disc before you leave.) This village is amazing.
There are no details left out; every surface, every experience, is designed to bring joy. The Village sneaks gifts into your villa every day for the kids, like a secret Santa. They knew we went to Sea World, so one day the girls got 'Barbie Doll' Animal Trainers with a Killer Whale. Another day they got legos and a Candyland game. There are volunteers tripping over themselves to serve you at every corner. And everything is wheelchair accessible and kid-friendly. The tables are low, the chairs are small, the doorways are wide, the rides have lifts...it's amazing.
And because they are aiming to 'give kids the world', they make the village so fun, so full of entertainment that even if the child's condition is one that prevents going to the parks, you could stay just in the Village all day and be totally happy. (We were sad we couldn't have spent more time there!) Here are a few (not even all!) of the events that happen every week  at the Village:
  • Life-Sized Family Candy Land game
  • Animal Encounters
  • Halloween Party (they let you trick-or treat, they had a balloon manipulator, crafts, music, games!)
  • Mayor Clayton's Birthday Party
  • Winter Wonderland (complete with a visit from Santa and gifts...that was the night we left :(
  • Village Party on the Pirate Ship
  • Teen Activity Nights
  • Family Game Show
  • Storytime
  • Pool Party
The list goes on...seriously. And in addition to this there is a breakfast/coffee cart driving around each morning, a cookie/milk cart at night, food delivery to your villa if you don't wan tot eat in the main dining hall, random puppets or art displays or people with telescopes or ANYTHING you can think of placed around property for you to find as you wander around. When the kids get a little older, I was to apply to volunteer there. Every day they log 1700 volunteer hours. All for the love of these families.

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

Maddux

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 attention...it'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

Conflicted

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.