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Friday, October 4, 2019

Our Amazing Time with the Harlem Globetrotters

Life has been so busy (as usual), and I am so behind on my posting.  We had such an amazing experience though, and I wanted to make sure to share.  

A few months back the girl’s dance studio, Dancing in the Streets, asked if they would like to be part of a dance in the Harlem Globetrotters halftime show.  I asked the girls and of course they very quickly said “yes”.  

After multiple practices the day arrived and we drove to Phoenix for the game.  The girls were beaming when they went out on the court.   It meant so much to them, they are still telling everyone they meet about it.  Their outfits were beautiful but paled in comparison to their smiles.  They were on cloud 9!

I vividly remember a conversation I had with Madi when she was younger and our other two girlies weren’t home yet.  She was dancing at our local community center and she was sad because she didn’t get to dance on stage.  She shared with me that her dream was to dance on stage. I called so many studios, but never found one that would work.  I tried again here in Tucson to no avail. Then we found Dancing in the Streets.  Thanks to their amazing work, all the girls have been able to fully participate in their shows and shine onstage.  We never thought to dream bigger, though.  It didn’t occur to us that there was something bigger for the girls than onstage.  It turns out that there was; the halftime show was their opportunity for their “bigger”.  Watching them out there brought tears to my eyes (and I never cry!).  Dreams do come true, and sometimes you find your dreams weren’t even big enough because God has something even better.  It was a day we will never forget!

Kicking off Spina Bifida Awareness Month

Today kicks off the first day of spina bifida awareness month.  When I was 22 weeks pregnant, Madi was diagnosed with spina bifida.  I had no clue what spina bifida was and I was so scared.  I felt like my world was crashing down.  I had no idea what it meant for her and the doctor made it sound like a death sentence (literally).  I remember pleading with God and telling him that I could deal with anything He threw our way, but to please let her make it through the rest of our pregnancy and in to my arms.  Not long after Madi was born I realized how much of the story the doctor left out.  Sure, there would be surgeries, therapies, appointments, wheelchairs, etc...., but more importantly there would be smiles, laughter, joy, determination,  and LIFE.  He forgot to tell me the “stuff” would all start to feel normal, and it would all be ok.  Fast forward a few more years and Madi’s diagnosis also brought us Ramya, because we had learned over the years that spina bifida and wheelchairs really aren’t scary.  Now we get the privilege of watching both girls grow, thrive, and live their lives abundantly. I hope by sharing our lives we have helped everyone see that we aren’t defined by our list of “cant’s” (and trust me, every person on this earth has a list in one form or another).  That list doesn’t rob us of our joy or keep us from living our lives to the fullest.  We don’t live life on the sidelines.  We are truly blessed beyond measure.  

Monday, August 5, 2019

The Trip of a Lifetime

In June we got some very exciting news.  We had applied through Dream Factory to have a wish granted for the girls, and they were chosen.  They asked us if we would like to go to Florida with Kurt Warner through his foundation, First Things First.  When I checked the calendar, the week they asked us to go happened to be the only week that month that had no extra appointments.  The only things scheduled were our regular therapies (OT, PT, speech, attachment, sensory, and reading), and those are easily movable.  The timing was a God thing for sure, because our calendar is never that empty!  I went through the itinerary with the girls, and they happily agreed.  The plan was to head to Florida, stay at Give Kids the World, and do all the big theme parks.  Some of the time we would be on our own, and some of the time we would be with Kurt Warner, his wife Brenda, and their children and grandchildren.  My parents also joined us for the fun.  

On Saturday, July 6th, we were off!  Our first flight from Tucson to Phoenix got delayed, and then our plane was delayed again in the air.  We arrived in Phoenix and had to run a few corridors to our connecting flight to Florida.  We were the last to load, arriving just as they were calling our name for the last time on the intercom, but we made it!  The rest of the flight went smoothly and the kids enjoyed their time in the plane.  It was late by the time we made it in to Florida, but they had had two people from Give Kids the World there waiting for us to help us with our luggage and to our car.  They had rented an accessible van for us so that we could travel safely around Florida as a family.  It was amazing and I sure miss that van!  We are in the process of trying to apply for a grant to help us get a new van, but that's a whole different (long) story.  On Sunday, the fun started.  We got to spend the entire week there and didn't leave for home until the following Sunday.  Luckily our return flight home went much smoother and there was no running involved.  We even had time to grab food and use the airport restrooms, which was a big bonus.  

We had such a busy trip, but we got to do everything the kids have ever wanted.   Princess makeovers, dolphin interactions, character meals, Harry Potter Land, rides galore, fireworks, getting stuck on a water ride and needing to get carried off by the fire department (ok, ok, that one wasn't on our wish list.  It just ended up being an added bonus I guess)...  You name it, we did it!  The entire time we were so well taken care of.  There were always extra hands to push wheelchairs.  Meals were made to our dietary needs at GKTW so that we could dine there without worrying.  We were provided with an oxygen tank in case Madi had a seizure and needed it.  First Things First even brought us sunscreen, backpacks, lip gloss, raincoats (there was a lot of rain this trip!) and so much more to make sure our needs were met.  The kids were spoiled and were given souvenirs galore.  In fact, they were given so many, it took an extra suitcase just to get us home!  When I say all our needs were met, I mean ALL. They even brought us that suitcase, knowing we would need it to get home.  We felt so blessed and humbled to be part of it all. The memories we made this trip will truly last a lifetime.  

Here are some of our favorite photos from our time there.  As you can see, we had an insane amount of fun!

Give Kids the World Village was an amazing place to stay.  Each family gets a little house with bedrooms, multiple accessible bathrooms, a kitchen, and a washer and dryer.  There were characters dining with us at meals, rides on site, a salon, a movie theater, and a really neat pool.  The kids could even eat ice cream for breakfast.  Talk about spoiled!  

The girls got to add a star to Star Tower at the village.  The celling is covered with stars, each one representing a wish child that has stayed at the village.  Each child who stays at GKTW is on their dream trip through a dream granting organization.  They have so many stars, they've had to build a new tower.  It's hard to put in to words how it felt standing in the middle of all of those stars.  To know that each of those families understands, to a degree, what your journey looks like was an overwhelming feeling.  To know that each star represents a child who faces life-altering disabilities or illnesses took my breath away.  So many unique stories and families, brought together in such an impactful and significant way.  It was breathtaking, to say the least.

Princess Makeovers

Feeding Gators at Gatorland

Universal Studios  (This was Conner's dream, but we felt like it was important to make sure he was included in picking the fun.  He is such an amazing, helpful, and tender-hearted brother.  We thought he deserved to get his wish too)

Disney's Animal Kingdom


Disney Magic Kingdom (Two Days Worth!)

It was truly a magical time.