Our Harlem Globetrotters Experience

Earlier this month the girls performed in the Harlem Globetrotters halftime show.  It’s the second time they’ve been able to perform in a show and it’s always such a fun and unique experience. They practiced like crazy and were so excited to have the opportunity to go out. They looked so beautiful and grown up and did such a great job. I’m a proud mom for sure.  

My Three Amazing Ballerinas

 This past weekend my girls danced in The Nutcracker with Dancing in the Streets.  They looked so beautiful and did so well.  They were in multiple dances and even helped create some of the choreography. Last year’s performance wasn’t able to happen due to covid and the girls missed it so much.  They were beyond excited to hear they’d be able to perform this year.  Dance means so much to them.  It challenges them to get out of their comfort zone, it challenges them physically, it’s is a great way for them to exercise, and they love expressing themselves and helping to teach others about their abilities through something they are all passionate about- dance.  Finding a dance studio that values this experience as much as we do can be such a huge challenge.  One that we've experienced ourselves.  They always feel at home at Dancing in the Streets, though, and are always welcomed there.  If you are looking for a wonderful, dedicated organization to support, they’re it!  You can donate by going to https://www.ditsaz.org/.  Here are some pictures from this weekend.   I think you can see their joy flooding through.  

We are Alive and Well!

Oh man, I haven’t been on here in so long!!!  We’ve been so busy living our lives, time just got away from me.  Life has been full of lots of good things, but some days it feels like we are constantly on the move.  

I know I shared before that I’ve had some of my own health issues.  Because of that, I’ve had to add specialists and appointments for myself.  It’s not my favorite thing, I won’t lie.  Genetics, Endocrynologists, cardiology,  GI, neurology, my naturopathic doctor, and my mold specialist.  I’ve had a lot of testing too.  I’ve gotten some official diagnoses myself, but no real answers.  It’s a frustrating process, but I’m trying to focus on living life to the fullest and finding joy throughout it all.  Right now they have me on the carnivore diet.  The hope is that giving my gut a break will give it time to repair, and in return, will help me keep my SIBO from reoccurring.  We still haven’t been able to figure out why it won’t stay away.  The current guess is because my IgG count is low in a few areas.  The next specialist I’ll need to see is an immunologist.  

The kids are doing well and keeping busy.  We are officially back in co-op and are still homeschooling.  Being original homeschoolers throughout the whole pandemic was such a blessing. We were able to keep the kid’s lives pretty “normal” throughout everything, and I’m so thankful for that.  After some time off when everything was closed down, Conner has been back in parkour and is loving being a crazy boy and jumping off things. The girls are back in dance and have a performance coming up in December.  They are in three dances and are so proud and excited.  

Madi tuned 13 on the 11th, so we officially have only teens in the house.  It’s so crazy to think about how grown up they all are now.  Kyla, our “year bonus kid” had a baby last fall, though, so it’s been really fun having a baby around again.  Gracie was diagnosed with NEHI, which is an interstitial lung disease.  Kyla is the best momma though and makes sure she always gets the best care.  She’s growing and thriving and is such a happy and fun baby. We see Kyla and Gracie multiple times a week and love it.  

The girls are doing great in therapy and have made big strides. We were finally able to find an in-home physical therapist for the girls, which has been awesome.  Ramya has new AFOs on the way, Madi has a new wheelchair on the way, and Deena’s been doing great with walking with just one arm crutch and SMOs.  They never cease to amaze me.

I’ll post some recent photos of the kids and our recent vacation to California.  You won’t even believe how big they are getting.  They are such great kids and make life so fun.

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!

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

SeaWorld

Disney Magic Kingdom (Two Days Worth!)

It was truly a magical time.