Tuesday, May 23, 2017

What's Good for the Goose

Not a new topic. I blog about Ruby's path and the dangerous place of comparisons often. Ruby's journey as a fish and my easily triggered doubts, just to mention a few. But lately I've found myself caught up in comparisons to not only other typical kids, but other kids with the same number of chromosomes as Ruby.
Not such a good place to get tangled up in. Ever.

Because all that does, comparing Ruby to other kids with Down syndrome, is put Ruby (and me) in a hamster wheel of comparison. Oh, they already speak 4-word sentences? Which therapist do they see? I'll go there. Oh, they already run, jump AND swim? Which activities do they do? I'll sign Ruby up for that. And so on and so on.

I need to constantly remind myself to stop, especially in Ruby's community, because our kids are all on such different trajectories. They may all end up in a similar place, but their paths all differ so much! When I forget to hold Ruby up to anyone else's milestones or mastered skills, to other typical kids' achievements, even to the functioning levels of other kids with Down syndrome, that's when I see all of the amazingness that is Ruby. I see her rocking and rolling through speech and gross motor skills. I see her interacting in a meaningful way with peers and adults. But for some reason I have to ruin that by standing her up next to someone else she'll never be and expecting her to perform similarly.

One area I excel at messing this up is inclusion. I want it for Ruby so badly, but sometimes that desire gets in the way of Ruby being where she is supposed to be. Sometimes my desire for inclusion overrides her preparation for inclusion. Oh, the balancing act...

Because sometimes the programs designed for people with Down syndrome or special needs are not necessary for Ruby. And I love when we find a place where she can operate with typical peers in a typical setting with ease. But sometimes those programs and services are very needed. I used to fight to make our life not contain too many of those. But now I'm wondering why...if she can participate and enjoy and thrive, who cares?

Here's the thing I'm learning, albeit slowly: hitting milestones and achieving the next goal is not the only indicator of hard work and early intervention. So much of what is poured into our kids, so much of the time they spend on new concepts and skills, so much of their potential is not visible to anyone outside of the immediate family.

Early intervention is important, vital even. But just because early intervention takes place doesn't mean a guaranteed success or timeline. It doesn't guarantee anything except countless hours of therapies drilling exercises - fine motor, gross motor, oral, etc. So when you see a child that appears to be what you consider 'high functioning', you better believe there has been a boatload of work involved. However, those who might not achieve that label upon first interaction are filling their time with at least as much work. Maybe more because the parents are likely on that hamster wheel I mentioned. They are probably pulling their hair out trying to figure out how they can fit in even more work because they feel they must be failing their child in the area that lacks thriving.

This can be a lonely place. This world of guilt. Guilt over feeling like you are not doing enough as a parent. Not the same guilt you might feel with typical kids when they aren't getting better grades, or they're not finding success as a baseball player (not saying that guilt is not real). This is the guilt you feel because what you perceive to be your shortcomings affects your child's ability to function outside of your home.

A bit heavy, yes?

This is the guilt you feel for not making enough money to buy more equipment or hire more therapists or attend a school that is a better fit. This is the guilt that you feel just for thinking it could - should - be easier than this. For your child and you.
So I'm trying to be intentional about checking in with friends on their kids' successes and struggles, because we are all in this together. And our community is strong. But I'm trying to remind myself that Ruby is not that kid. And Ruby is not this kid. Ruby is Ruby and she does some things now and some things later. Period.

Monday, May 15, 2017

Guest Reader

About a month ago, Maddux earned the privilege to read to another class. Her teacher had the incentive in place, intending for the 4th grader who earned it to read to a lower grade. However, Maddux's first choice was Ruby's (pre-k) class, of course. So she (Maddux) asked Ruby's teacher and got permission. This morning was the day; instead of going to PE, Maddux brought two books from home to read to Ruby and her classmates. When I picked Ruby up, she told me several times, "Maddux. Read." Obviously she loved it. (And Ruby's speech therapist snapped a photo for me!)

Tuesday, May 09, 2017

Jazz Fest

Always my favorite time of year.
This year the kids rejoined us (last year, I gave Lehr the 40th birthday gift of a fest with just the two of us for the first time since they were born), and they couldn't have been happier. We drove in late Thursday night so we could attend all day Friday and Saturday and only have to miss one day of school.
Despite the fact that we arrived at the hotel at midnight, Ruby was up just before 6AM, ready to go. Lehr snuck her out and the two of them went for a mini tour of NOLA. They got some beignets, coffee, visited Breaux Mart...some of the staples. The kids and I were up at 8, ready to get some beignets also. (Yes, Ruby got to visit Morning Call twice that morning!)
After a quick meal, we went to the fairgrounds. We wanted to be there when gates opened at 11AM, which meant getting there by 10 to buy tickets and wait in the gate line. Even with all of that prep, we were still not the first ones on the line at the Acura Stage. We planned to set up camp there for the afternoon Revivalists show.
Because they are awesome, the Overlys joined us again this year. I say awesome because their boys were not with them, so they could have had a kid-free weekend, but they still chose to hang out with us for most of both days.
The kids ate, danced, and people-watched through the day. We stuck pretty close to that stage all day because of the great line-up. The weather was amazing...even a little cool to start with (which is why you'll see sweatshirts in some of our photos).
After our boys performed, we ended the day at another stage with another family we love. We didn't leave until the music was done and we had to shut it down. On the way back to the car, we stopped by many street performances for more music (because NOLA!).

Day two was more of the same. Ruby woke up early again, but not as early. We hopped out of bed quicker so we could get a bigger breakfast. And by bigger, the big kids each got a pancake that was the size of their large plate. Ridiculousness.
After stuffing ourselves, we were at the gates, ready to go before they opened. On this day, we hit almost every stage, taking in so much great music with amazing weather supporting the whole thing.
Ruby got to drum in the kids area, all of them danced in Economy Hall, mango freeze was flowing freely... Eli and Maddux got to see Big Freedia and Snoop Dogg (which Eli referred to as "The Snoop"), so we've officially earned the Parents of the Year award. I'd like to think we made up for it by ending the day with Rockin' Dopsie. Another day of shutting down the fairgrounds at 7PM, only to walk through the street musicians to our car.
While her early morning wake-up call frustrates me, she does wake up because she has to relieve herself (she rarely wakes up wet anymore). And she did an AMAZING job with bathroom habits over the weekend, communicating to us when she had to go and not having any accidents (quite the feat when the port-a-potties you have to use have a line or are far away).

Monday, May 08, 2017

End of Year IEP Meeting

We had another IEP this afternoon. I called this one. We are not 'due' for another IEP until December (the goals should last a year and we had one to challenge Ruby's initial denial into the program last December), but with the school year ending, prep for another begins. I wanted to establish if Ruby would be returning to special needs pre-K, and in what capactiy, along with goal updates.

Prior to these meetings, there is always a lot of prep for Lehr and I. Re-reading her current assessments and reports, reading up on kids similar to Ruby in different settings, discussing what is working and what isn't, talking with other families to see how they are navigating these waters, praying, praying, praying... But even with all of that prep, this time we did not go in with a clear plan.
 Honestly, I felt very conflicted about what I hoped the outcome would be. We have pushed for as much inclusion as possible all along which would mean us requesting Ruby attend the typical preschool (Mt. Zion) 3 days/week, with a facilitator a few hours each week in addition to attending the special needs pre-K (Sope Creek) the other two days. However, she has done so well at Sope Creek in just four months. She is potty trained and has been with rare accidents since the first month, she has made friends that she has conversations with every day, and she is talking talking talking so much! Those great things (which didn't happen in the typical preschool) are so great that they make it hard to consider taking even a little bit of it away. She may still thrive that way with only 2 days/week next year, but what if she doesn't? And what if her typical environment is one that causes frustration again?
So with these questions (and many more) on our minds, we went into the IEP with a very open mind, ready to have a conversation with her teachers and therapists. We all agreed that Ruby has made a lot of progress in a short time, in all areas. (The teachers are so proud of how well Ruby navigates the classroom and fulfills her responsibilities with no prompting.) And we all agreed that next year she should continue that progress at Sope Creek. She will be eligible for the afternoon (full day) program as well. That program allows for smaller numbers (more one-on-one), and more intensive work to prepare her for kindergarten (handwriting, number work, etc.). However, if she stays until 2PM each day, it will mean her 2-4 therapies outside of school will have to take place after the big kids get home, making our afternoons even crazier than they already are. So Ruby will attend full day, but only on days she doesn't have therapy. (These last few months, it's worked very well for me to pick her up before noon and get her therapies done before returning home to receive Maddux from the bus.)

So that's the plan for next year and we are happy with it. Ruby's summer birthday means she could start kindergarten after next year, or after an additional year (starting right after her 5th or 6th birthday). Should we wait until the second year, her final year of pre-K might be a typical/special needs pre-K mix.
Here's what made me smile at the meeting. The team, Ruby's team, a speech therapist, an occupational therapist and her main teacher, gave lots of feedback with lots of genuine smiles. They told little stories and gave examples of her in the classroom or therapy that obviously brought them joy. They love my girl. They see my girl. They are proud of my girl. They get how much she loves to learn. They see how much she wants to learn and work.

Tuesday, May 02, 2017

Alice In Wonderland

Maddux signed up for Drama Club this spring, meeting with about 20 other kids in her school once/week. She was interested in joining in the fall, but schedules conflicted, so she had to wait until January. The culmination of the season was to present a play to the parents and the older grades at school. The play chosen was Alice In Wonderland, which they started working on immediately.
After a few weeks of meeting and 'reading', parts were chosen. Maddux ended up being one of the story tellers: "red", while the others were rainbow colors as well. It was difficult to get her to practice her lines with me in the beginning, but she was very interested in pulling her costume together!
When the big night arrived, Maddux asked me to make some special treats for the reception after the play. She also asked me to come early to take photos of the entire cast. So many creative costumes and talented kids! There were just over half a dozen Alices throughout the performance and many of them have a future on the stage!
Maddux did a great job, delivering her lines clearly and timely. She has a hard time being part of the performance (rather than a spectator), but with so much to see during the play, who can blame her!

Saturday, April 29, 2017

First Dance

Eli's school held their annual middle school dance last night. I wanted to volunteer as photographer, but at that time, Eli had not yet brought the dance up, so I wasn't sure if it was even on his radar to attend. So I asked him, and he seemed fairly interested. I suggested that he might check with some of his friends to see if they were interested as well (since he was telling me that no one had talked about it). The week before the dance he said he was going, so I signed up as well. He had to convince his best friend, Drew, but they both got dressed up very willingly.
Eli chose red pants and a cool plaid shirt. He wore a white belt and skater shoes with it, and on the way out, he grabbed a hat. Not sure where he gets his style, but I like it. A lot!

The night of the dance, I drove the boys since I was going to be at the dance as well. I took them out for a burger first, and we ran into many other 6th grade boys at the restaurant (all dressed up). I think this helped get the boys a little more comfortable with the whole thing (even though they both spilled food on their shirts). By the time we arrived at the school, they were chatty and excited.
The whole dance was very fun, very innocent, everything a middle school dance should be. So many of the kids danced the whole time, taking occasional breaks to snack, go to the photo booth, or play some random games around the room (corn hole, connect 4, etc.) Boys and girls danced, but not really together, but it was all ok.
As I drove the boys home, they both couldn't stop talking about how much fun it was. I think their first school dance experience could be considered a success!

Friday, April 28, 2017

Grandma & Grandpa Visit

We wanted to take the big kids to NYC without Ruby (nothing personal!), so we flew Grandma and Grandpa here to hold down the fort while we were gone. That turned into an extended stay to hang with the big kids over Spring Break, fortunately. Eli got to take Grandpa golfing once or twice, hit balls once or twice, and play in his yard course countless times. (It was literally the ONLY think on his mind all week, and he reminded us often.) Maddux and Ruby and Grandma had lots of fun coloring, playing outside, going to parks...we did it all. Weather (severe weather!) kept us inside a few days, but we still had our fair share of outdoor fun.
Ruby loved Grandma and Grandpa being here too. As much as she always asks for "Gam-pa!" when we face time them, she gravitated towards Grandma Cathie plenty. In fact, when Grandpa slept in her room one night, she woke up in the morning and said, "Gramma?". When she saw it was him, he tells us that she put her head back down and went to sleep, maybe disappointed.
Another Ruby story: she dropped the "Grandma" title. She started the week saying "Gramma Caffee", but after a few days that was shortened to "Caffee", which she would call from anywhere in the house to find her favorite playmate. She had no time for Lehr or I (or even Maddux) while they were here; she was very focused on commanding them to 'come. sit. (eat. play. whatever)' the entire visit.

Wednesday, April 26, 2017

New York, New York

Just as we did for Eli when he turned 10, we gave Maddux an extended weekend trip for her first two-digit birthday. It was not as easy to pick a destination for our girl; Eli's love for history made DC an obvious win. Lehr and I ultimately decided on New York because of all of the sights and sounds (and food!) it has to offer. I think we picked a winner.
Because we have had some crazy weather in Atlanta this spring, our flight (meaning our trip) was impacted. The week before our trip we had bad storms and tornadoes. Then things calmed down for five days before picking up again big time. Two days before our flight was to leave, we had severe storms and winds to the point where many flights were delayed, rerouted or cancelled that afternoon. So when we arrived at the airport for our flight (two days later!) they were still sorting out the aftermath, meaning over 700 flights cancelled, just that day. Ours was one of them. Because Lehr is quick to recover, he hopped on the phone and stuck it out for 3-4 hours on hold to get us on the next available flights. Unfortunately that ended up being a full 24-hours later. And because our trip was already a short one to begin with, that forced our hand to extend our trip by a day also (meaning the kids missed two full days of school).
Once that was behind us, we had a great time. Just the big kids went with us; NYC is a little harder to navigate with a stroller and a toddler, and we wanted to cover a lot of ground and let Maddux see as much as possible. That first morning, we were in Grand Central Station by 9am. Not too shabby!
The weather was cold and really windy the first two days, but we walked enough to keep ourselves warm. We visited the 9/11 memorial (which includes a water feature that was shut off due to the high winds) and the museum the first day. The kids handled it all pretty well, not getting upset by the images and videos. We were not plugged into the audio tour though, and I think that helped them keep it all at an arm's length distance from affecting them too much. That night we went to Ellen's Stardust Theater where actors frequenting Broadway playbills keep their lights on by serving food and entertaining patrons with Broadway tunes. The wait was insanely long (just over 3 hours!) but the kids really enjoyed it.
The next day we hit the Freedom tower, where we got to take an elevator up 100 floors and walk around the observation deck. This was REALLY cool. The kids enjoyed looking out over the city and seeing all of the buildings from the top. We then went to Central Park (another favorite of theirs mainly because of the cool acrobats and music we saw) before going home to change for a Broadway show. We chose School of Rock because we knew Eli and Maddux would love the cast of kids. They were amazing. AMAZING! These kids not only nailed the acting and singing and dancing, but many of them also played instruments live on stage. This was the best thing of the whole trip for both kids. After the show, we walked through Time Square so they could see all of the lights and screens at night. Another favorite for Maddux (lots of those, obviously!).
The last full day, our main goal was the Statue of Liberty. Maddux's one request was Lady Liberty, but we could not get ferry tickets from the Manhattan side. So we rode a small ferry over to Jersey, then caught the Ellis Island ferry to the statue. We did not go up inside of the structure, but we walked all around and got to take in her beauty from the outside. The kids loved all of the boats and trains we took that day. That night we walked the High Line. This was probably my favorite! The elevated trail was a great way to enjoy the awesome weather that night, and grab food along the way. We ended at Chelsea Market where we had more food before walking through some neighborhoods on our way to the subway.
The final day we only had until noon before we had to head to the airport. I wanted to walk the Brooklyn Bridge with the kids since that was the most enjoyable thing I remembered from my brief trip a few years ago. We ended at a pizza shop in Brooklyn before taking the subway under the river back to the hotel.
We covered a lot of ground. We ate a lot of good food. We took the subway, the ferry, uber and a cab. We visited many neighborhood playgrounds/parks. We ate lots of good food. We saw a totally different way of living from what we're used to in the burbs. We ate and ate. (Did I mention the food?) The kids had a great time and Maddux thoroughly enjoyed herself.

Monday, April 24, 2017

Therapy Updates

It's been a while...my blogging takes a hit when we get busy. And, as humans, we get busy.

Ruby is still rocking and rolling at the local public school special needs pre-K. She loves her school, but she has become a little too comfortable as certain less-than-desirable behaviors are often present. Mostly it is not sitting/staying put during story time and not maintaining her personal space. We are working on it. (Story of our life!)
Aquatic Therapy
Ruby loves it. We started this a few months ago, but had some hiccups with Medicaid and insurance. We are back now though, and Ruby couldn't be happier. For those that don't know (I didn't), Aquatic Therapy can be used for PT, OT, speech...you name it. For Ruby, it's mostly PT, but also a little OT. She and her therapist move around the pool, using platforms and ankle weights and a variety of squeeze toys to engage core muscles and use the water for resistance and also balance support. After just one session I noticed some improvement in Ruby stepping over structures/thresholds. And just this week she jumped with two feet simultaneously (while waist-high in the water, on the platform) for the first time EVER. I have spent countless hours working with her on this skill on trampolines and curbs and all raised structures...who knew water was the answer!

Rock-n-roll. Ruby's speech is not clear, but her vocabulary is growing daily. And she strings words together so much now! Her latest and my favorites are:
  • "Got it" (Ruby says this when she is working on something and you try to help her..."I got it".)
  • "faster" (Ruby says this when you push or pull her down the hill in a wheeled mode of transportation.)
  • "Caffee" (This is what she calls my mom. The big kids call her 'Grandma Cathie', but Ruby obviously feels that is a big formal because while she can say a version of 'grandma', she intentionally drops it for my mom.)
  • "Baby. Want read? Ok."(This is an example of the conversations she has with her baby dolls and stuffed animals around the house while I'm making dinner.)
At school Ruby works with an Occupational Therapist twice a week on specific tasks related to fine motor skills. She is getting so much better at controlling a writing instrument (usually a big crayon) to loosely trace lines and make round shapes. She is also stacking blocks and stringing beads with much more control and skill.

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


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.