I Never Thought...Day 7

This week for Down syndrome awareness month, I've been sharing some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life with amazing experiences.

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This post is different today. This post is about a moment that is a blessing and a curse all at the same time. A few years ago, Jaycee was blessed with something I never thought would happen to one of my children. She qualified to receive a wish from Make-A-Wish.

Years of medications, hospital admissions, surgeries, and daily medical interventions led to Jaycee's health being serious enough to qualify for a wish. It wasn't necessarily her Down syndrome that put her in the situation. Her AV canal heart defect, Wolff-Parkinson White syndrome (another heart condition of the electrical system), asthma, sleep apnea, recurrent pneumonia, and severe reflux all together make simple colds anything but simple. No one could predict all of Jaycee's health issues when she was a baby, and no one can tell me today what her future holds.

I never thought I'd be the mother of a child with a complex medical history. I never thought I'd sleep in an ICU room watching my child's monitors. I never thought I'd see my child on a ventilator for an illness, but I have more than once.

And in all the craziness of Jaycee's medical history, something good happened. It was Make-A-Wish.

For her wish, Jaycee wanted to meet Barney the Dinosaur at Universal Studios, which meant we stayed at Give Kids the World Village and visit other Orlando area parks. Here's a few highlights:

An amazing picture with the Toy Story characters

Jaycee meeting her favorite! Barney!

Getting some time with Elsa and Anna & the rest of the Frozen gang at Disney was probably the second most magical moment. 

I never thought my child would battle multiple health problems. But, I also never thought this would lead to Jaycee becoming a wish kid. The wish was a bright spot in Jaycee's life before, during, and afterward. We looked forward to her trip, enjoyed every minute of it, and still talk about it today.

Sometimes life doesn't turn out how you think it will, but sometimes good comes out of bad situations.

You can read more of Jaycee's Wish Story HERE.

Here's a story of her meeting BARNEY.

A Day for Wishes

There are things about raising a child with medical conditions that have made life different for our family. There have been scary moments in the hospital with my daughter, Jaycee, as I watched machines give her breath during a respiratory illness. There have been tearful departures as Jaycee left my arms to go off to an operating room with doctors. There have been an innumerable amount of prescriptions filled and specialty appointments scheduled. There have been times when I have hugged my scared child as I tried to convince her to enter a hospital for an ordinary appointment because she is frightened that she will be admitted.

The absolute worst part has been wondering if my child with Down syndrome, repaired AV canal heart defect, ablated Wolff-Parkinson White syndrome, asthma, lung cyst, obstructive sleep apnea, and GERD will live to be an adult. There have been a few close calls, but we are grateful that Jaycee is still here.

For some of the hard and scary days that Jaycee has had, we have also had a few amazing, one-of-a-kind experiences throughout her 11 years of life. One of those happy moments was made possible through the Make-A-Wish foundation. Make-A-Wish grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy.

In 2015, Jaycee was granted a wish through Make-A-Wish Illinois. (If you want to read how this process started and our trip, click here!) Through the generosity of many foundations and companies, Jaycee was able to meet that amazing purple dinosaur, Barney, at Universal Studios. She was ecstatic to see meet her favorite character as well as visit many Orlando theme parks with her family and stay at the Give Kids the World Village.

Jaycee's granted wish remains the most wonderful week in all of our lives. It offered unique experiences and helped us forget about the difficult moments from the past. We didn't know how much joy it would bring Jaycee and the rest of us nor did we realize the lasting impression it would leave on us. Two years later, we still look at pictures from that trip, and Jaycee communicates about her favorite experiences.

World Wish Day is celebrated on April 29th to mark the anniversary of the wish that began the Make-A-Wish foundation. Since the first wish in 1980, more than 350,000 children around the world have had their greatest wishes fulfilled by Make-A-Wish. Make-A-Wish is the world’s largest wish-granting organization, serving courageous children in nearly 50 countries on 5 continents around the globe.

When I think about all the people who have come together over the years to donate time, money, resources, and gifts to fulfill the wishes of children like my daughter, I am overwhelmed with the kindness and goodwill of others. There really is good in the world; you can find it with Make-A-Wish.

Visit wish.org to refer a child, make a donation, or learn more about the foundation.

Getting the Medicine of Music

"Hey Jaycee here's your very own song of love..."

When the song's opening comes through my van's speakers, my daughter gets very happy. She knows this is HER song. As it plays, she gestures, attempts to sing along, and dances to the catchy song that is all about her.

How did she get this song of her very own?

This song came from the Songs of Love Foundation, a group that provides free songs for children and teens facing medical, physical, or emotional challenges. Each song is unique for each child, with no song ever being duplicated.

We received this song on CD over a year ago, but it's still exciting for Jaycee to hear. Through our visit to Give Kids the World via Make-A-Wish, we learned about this foundation and decided this would be perfect for Jaycee.

To receive the song, I filled out a simple form describing Jaycee and her health conditions. It also asked for information that could possibly go in the song. I wondered what song would be created from Jaycee's nickname "Sissy" and her interests in swinging, swimming, Barney the Dinosaur, her cousin Gabby, and hugging.

After a short wait time, we received a CD with Jaycee's song that amazingly made all of her interests work together. It was so sweet! Here's a portion of the lyric sheet:

The foundation website says that they provide the medicine of music, and it's an accurate description. My daughter spends 40 minutes every day sitting through airway clearance and approximately 30 minutes on a nebulizer each day. You can easily double those times if she has any respiratory symptom or cold. She spends each night on a bi-pap machine, which is something she has needed since age 3. Jaycee has a very good and full life, but there are machines and medicines she must have daily to stay healthy. That is what makes organizations like Songs of Love so special because they are dedicated to reaching out to people like my daughter who miss out on many typical things due to accommodations needed for her diagnoses.

Prior to our wish experience, I had never heard of this charity. I'm guessing that many of you haven't heard about it either. They are always seeking kids who qualify to receive this free gift of music as well as donations to keep the songs going out to kids who need them.

For more information on this organization or to make a referral, please visit their website.

Guest Post: Make-A-Wish

Last year, Jaycee had a wish granted from Make-A-Wish due to her complex medical history. Last year, my niece, who has had two kidney transplants, also had a wish granted.

I had the honor of being a guest blogger for Make-A-Wish recently. Read my guest post about Jaycee and Gabby here.

Wish Trip Part 7: The Finale!!!

Here it is....the end of our wish trip story:

The last few days of our trip were all about slowing down and relaxing before going back to real life. Our hotels and meals were now at our expense since we added these days on. However, we had money left on our debit card to cover most meal and shopping expenses.

We stayed near Cocoa beach so we could see the ocean, a new experience for the children. I didn't know how Jaycee would react. But, she loved it!

The water wasn't warm, so swimming was not a possibility. But, we enjoyed going in a few inches and playing in the sand. Elijah loved collecting sea shells. Jaycee liked laying on the beach. She was very content whenever we were at the beach. I like any place she's laying down instead of running off from me. We tried unsuccessfully to recreate a scene from my childhood.

 

 

This is a picture of me and my dad in '86 during our family vacation to Florida.

Here are some of the failed attempts...

 

 

 



It really wasn't a hard pose but we couldn't pull it off. Besides the beach and visiting our hotel's water park, we went for an air boat ride. The kids loved that as well. It was pretty neat seeing the animals and zooming around the water. We saw several gators. Other than that, we did some shopping, ate at some nice resturants, and went to a dinosaur store. The last few days of the trip were nice. But soon, it was time to fly back home. The magic was over, but we'll hold these moments forever. We loved this time together and cherish these positive memories we have.

Thank you to everyone who has taken the time to read about our trip. The bottom line is that Make-A-Wish and Give Kids the World are amazing organizations! Any family who chooses a Disney wish with the GKTW village will not be disappointed.

Enjoy some final pictures I like that didn't make it in anywhere else.

 

Jaycee hiding at the village.

Mayor tucking Jaycee in at the village.

All smiles on the tea cups at Magic Kingdom

Jaycee's doodle on her star for the Castle of Miracles

Wish Trip Part 6

Our wish trip continued on Friday with our favorite park: Magic Kingdom. This was the only day we skipped breakfast at the village to eat fast food to arrive at the park early. We wanted to be there when it opened and we were! Jaycee was in character heaven again meeting Cinderella, Elsa, Anna, and some other friends.

The new mine train ride was our family favorite. We rode it once and the attendant must have heard us talking about how we'd get back in line to ride it again because as soon as we got off, she showed us back to the front of the line immediately. Wow!

We decided to splurge on lunch. We reserved a character lunch at the Crystal Palace. Pooh and his friends made their way around to our table while we ate off the buffet. We had to wait quite awhile to see Tigger, which is Jaycee's favorite. It seemed like he was with his 30 seconds and then was off to the next table. Maybe it was longer than 30 seconds, but Jaycee felt ripped off. She cried when he walked away. I'll put a happy picture instead:

The Magic Kingdom is my favorite Disney park. There are so many fun rides and ways to see characters. Jaycee loves it too! We ended up staying there until 7 pm.

 

We arrived home too late to eat dinner at the village but their pizza delivery was available. So we ordered some pizzas to eat in the village as we ran through some of Jaycee's medicines. This was our last night at the village, so I had to take Jaycee swimming one more time even if it was a cool night. We were the only 2 people in the heated pool that night. We swam for about 45 minutes when the pool closed then we shivered all the way to the villa. While we swam, the boys went to the ice cream parlor.

The next morning (Saturday) was our final few hours at the village. We awoke early to pack up and check out. We were sad to be leaving such a wonderful, happy place but grateful for the time that we did have. The horses were back at the village, so of course we had to do the horse rides again. Jaycee still loved them.

Then it was time for us to go to the Castle of Miracles and find Jaycee's star. Every child that has been to the village has a star in the Castle. So yes, there are thousands of stars. Earlier in the week, Jaycee was given a gold star that she doodled on and then sent to the "star fairy" The fairy took the star and placed it in the castle and then gave us the location of our star. The volunteer showed us where Jaycee's star was located.

It was too high above to see, but the workers had pictures of her star and pointed it out for us. It was an incredible thing to know that Jaycee has left her mark on the village forever. We said our good-byes to the village and headed off to Sea World.

 

At Sea World, we were given front of the line access again at rides, special seating at the shows, and a free wheelchair rental. Jaycee loved the dolphin and killer whale shows. We were excited to attend Jack Hannah's animal show but Jaycee was not. This was a dark theater, so she immediately sunk to the floor until she felt safe enough to sit in her seat.The Sea World staff were kind and accommodating to us. The other people though.... Ugh!

 

Having a child in a wheelchair requires patience. The animal exhibits were next to impossible to get Jaycee up close to the front for her to see due to the crowds. I think everyone is focused on their view of the animals and getting their money's worth, that they didn't see that Jaycee in her wheelchair was blocked and couldn't get to the front. Either that, or the people didn't care. After being in parks all week and everyone wearing down, we didn't have the energy to fight the crowds for a glimpse of an animal. Maybe some other time....But she did love the shows!

 

We gave up on Sea World without seeing half of it. Leaving Sea World, we drove to Cape Canaveral and checked into the hotel we'd be staying at for the next few nights. We took the advice of other people on-line and added 3 nights on to our trip at our expense to decompress and relax before flying home.

 

Stay tuned....... only 1 more post to go & this wish trip series is over!!!!

 

Wish Trip Part 5

The wish story continues picking up on Thursday. The Disney characters were back at the village. Today, Belle was the one Jaycee wanted to see. She loves Belle!


Rain, wind, and cool temperatures dampened our original plans today. So we looked for an indoor activity. We decided to go to the Kennedy Space Center at Cape Canaveral. It was at least an hour drive from the village with several tolls along the way. The kids loved the outdoor rockets and exhibits, which we did first before the rain hit. The kids did not appreciate the IMAX movie. Jaycee didn't even wear her 3D glasses, so I'm sure it was all a blur for her. The bus tour was neat. There were many movies here that didn't capture the kids attention at all. We left without seeing much of the center because the weather was just awful and the kids were done. We were glad to have gone, but it was more of an adult place.



 

We arrived home in time for dinner and to see what gifts were in the villa for the kids. Thursday night was Christmas at the village. There were Santa hats for the kids, Christmas trees to decorate, hot chocolate, and of course...Santa! As you can see, Jaycee debuted her new princess dress tonight.

After meeting Santa, we were escorted in a room with several shelves of really nice toys. Each child was allowed to choose one toy that they wanted. Elijah picked a transformers toy. Jaycee kept picking up toys she already has at home, as usual. But I finally got her talked into a Doc McStuffins play-doh set. Apparently, Hasbro, Inc. donates the toys used for Santa as well as other gifts we received. These were nice gifts too, not just toys that don't sell. There's so many companies that donate their goods to make this place special.

We went to bed with Christmas songs in our head or at least I did.
To be continued.....

Wish Trip Part 4

Continuing our story of Jaycee's wish trip....

It is now Wednesday and our plan for today was to end up at Epcot for fireworks. So we spent the morning at the village to try to take it easy. First up, the horses at the village! Jaycee had a few pony rides when she was younger, but none recently. So it was exciting to see her so interested in the horse rides. She loved them! When Jaycee's turn was over, she got off the horse and signed "my turn, horse." She even tried to say horse for the first time ever. It sounded like "ss" but it was something. Needless to say, she got a few extra horse rides.

Then we decided to try the village putt-putt golf. The kids have never done this before so we knew this would end up being a little wild! And it was! The mini golf course was first class with neat surprises. Jaycee hit any ball she found whether it was hers or not. Elijah kept using his club backwards. Jaycee got tired of hitting her ball and ended up throwing it in the hole. I laughed and laughed at the kids but my husband and I aren't planning any putt-putt golf adventures any time soon.

It's was 10:30 in the morning by then, so of course it was ice cream time!! Why not? Rules don't apply at the village. With full bellies (again), we headed to Downtown Disney. After we finally figured out the parking due to the construction, Elijah hit the Lego store with dad. Jaycee and I went in search of a princess dress nearby. Success!

Epcot was next! We did a few rides before getting in line for all the princesses. Belle, Sleeping Beauty, Jasmine, and Snow White were all there. Elijah was bored, the poor kid! But, Jaycee was happy.

 

Later that day, we visited with Mickey, Goofy, and Minnie. I decided to get in a picture with Jaycee and Minnie. Jaycee cried and got so mad. She didn't want me in the picture. Here's that magical moment:

 

 

We loved several rides at Epcot. We successfully stayed around for the Illuminations fireworks show. Staying out late is not my idea of fun, but Jason wanted to see it. It was neat. I'm glad we stayed. I'm always thinking about the medicine we have to do when we get back, but I tried to not let the medicine and vest treatments dictate the schedule. It was a late night, but it was good.

 

More wish trip coming next time............

 



Wish Trip Part 3

We woke up on Tuesday morning extremely excited as this was Jaycee's day to meet Barney the dinosaur. First, we had to meet the Nickelodeon characters at the village. It was a treat for Jaycee to meet Dora.

Then on to Universal Studios for the day! We tried to cram all of Universal in to 1 day. (We aren't Harry Potter fans so that did cut some things out.) We loved Universal! Jaycee loved the Transformers ride and the Spiderman ride. Elijah.....he liked shopping. Those rides were a little much for him.

Then Jaycee's moment came...Jaycee watched Barney's show in his theatre. She lit up when she saw Barney on stage.

Jaycee loves Barney. She watches him EVERYDAY! This was such a special time for her!! After the show when all the children were gone, Jaycee had her special time with Barney. She hugged him, danced with him, and took many pictures. Barney spent more time than I expected with Jaycee. This is when I wish she could talk. I wonder what she was thinking when she saw him.

 

 

After the Barney visit, we spent the next several hours taking in Universal. The characters here went out of their way to greet us and find Jaycee. They were amazing! They spent time talking to the kids. The people were nice too. One fellow park-goer handed Jaycee a stuffed animal that he was holding since he knew she was a wish child. That was neat! We met lots of characters at Universal but I'll just post one picture of that. How about the Grinch?

 

 



We arrived back at the village for a busy night. After dinner and a few spins on the carousal, we went to Mayor Clayton's birthday party. The Mayor of the village is a rabbit and he has a wife too! Jaycee loved the dancing at the party as well as all the games. The kids made birthday cards for the Mayor. At the party, he opened each card and got a photo with every child. Here he is opening Jaycee's card.

During the party, we split up to do some other things going on. The boys went fishing at the pond. It was too cold to catch anything though. The girls hit the salon. Jaycee was able to get her fingernails painted. She chose green, her favorite color. Jaycee loved getting her nails painted! It's funny because it's a struggle when I do it at home.

We headed to our villa to get the kids ready for bed. But, there was one more surprise in store for the kids! The Mayor came to tuck the kids into bed. You can schedule 1 tuck in while you are staying at the village. The kids loved it. Jaycee started jumping on her bed like a rabbit. Then Elijah started imitating her. The Mayor had to calm them down. It was so sweet! A great end to a great day!

 

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More about Give Kids the World: When we were in the decision mode, I debated on whether or not GKTW would be a good place for us. I have never really been at a place surrounded by other children with major health conditions other than the hospital. I read great reviews about the place, but I was still wondering if it was really going to be a happy place. Yes, it was! It was beyond happy. The volunteers are happy, the staff are happy, and the other families are all happy. It was kind of amazing to see so many happy people in one place.

The other thing that was good about GKTW is that Jaycee didn't stick out. She used a wheelchair because long walks are hard on her. People here instinctly knew to open doors for us if they saw us coming. Everything was accessible (even the pool). Jaycee wasn't the only child there using a wheelchair. If I gave her a syringe of medicine, no one stared. We fit in here!

I asked Elijah, "Isn't the village nice? And there are other children there in wheelchairs just like your sister uses."  I said this to acknowledge that other children were like his sister.

His response: "There were? I didn't notice." He's one of a kind!

Wish Trip Part 2

Our first full day in Florida for our Make-A-Wish trip was busy. We knew this was a once in a lifetime experience so we were determined to do as much as possible since Jaycee was in good health at the time. We visited the characters from Disney at the village first thing. That day it was Mickey, Goofy, and Pluto. Jaycee was in heaven already. After breakfast, we drove to the Animal Kingdom. We have been to the Disney parks before, so we had a good idea of what we wanted to do and not do again. There is no way you could ever see all the Disney parks in just 3 days, so we were glad this was our second Disney experience.

Being with Make-A-Wish gave us a pass at all the parks to be given access to the front of almost any ride and character line. Depending on the ride or the park, sometimes we entered through the exit, the disability wheelchair entry, or the fast pass line. This saved time everywhere!! It was the best part of the trip, skipping all those long lines. We also wore our Make-A-Wish shirts or buttons and the pink Give Kids the World button so we were easily identified by park staff. Jaycee was supposed to be the one wearing her pink button to identify her as the wish child, but she hated having something pinned to her shirt. She kept taking it off, so I wore it. Elijah was given a special Lightning McQueen ribbon by the village. He called it his special ribbon, and he was pleased to wear it everyday.

We enjoyed the Animal Kingdom until lunch when the rain started. We darted into the Rainforest Café to stay dry. Jaycee's meal and drink were free since she was the wish child. That was a nice surprise!

After lunch, the rain stopped and we headed to Hollywood Studios. There are so many great rides and shows here that we had never done before. The wish pass allowed Jaycee to sit in the front row in most shows. After the Frozen show, Jaycee was asked to stay around and meet all the characters. It was amazing. She loved it! They were genuinely sweet and caring to Jaycee. It was an unbelievable moment!

When we were walking through Hollywood Studios, one the green army men (from Toy Story) spotted my shirt. He literally waved us down and gestured to follow him. I didn't know what we were doing but we followed. We were soon surrounded by 2 more army men who danced with Jaycee and acted silly. Again, didn't know what we were doing since the army men didn't talk.

 

Then we were taken to a room to meet Buzz and Woody. The picture we got was awesome!! Jaycee felt so special and so did we!

 

 

 

We finished up our day there and headed back to the village. It was Halloween that night, which we don't celebrate. Still, there was plenty to do with the rides and ice cream. There was a volunteer with his big telescope that the children were able to look through. There were neat surprises like that all over the village all week. And of course, there were gifts for the kids waiting for us in the room when we got home.

 

On this day, we started paying attention to the volunteers that serve in the village. They come from all over the country and some were outside the country. It was neat to see so many people joining together to make this place run. There are volunteers that help run the rides and volunteers that carry your meal trays for you. They make the place special. What can I say? -Give Kids the World is neat!

 

We went to bed that night completely exhausted from all the walking and activities but ready for the next day! 

 

To be continued.....

 

 

Wish Trip Part 1

The day finally arrived for our Make-A-Wish trip!!! The local Make-A-Wish Illinois volunteers provided us with shirts, a debit card for expenses, an informational packet, and other goodies. Because we live 2 hours from the airport and had to fly out early in the morning, we were put in a Drury Hotel closer to the airport to make things easier. We were all so excited about starting this special trip. Jaycee couldn't sleep. She was up past 11 pm, which never happens. So, 5 am came very early! We had to get Jaycee up that early because her nebulizer treatments, vest therapy, and medicines take 50 minutes to complete. At 6:30 the limo arrived to take us to the airport. It was dark and rainy so we didn't capture the limo pick up with a photo.

Off to the airport we went. I was the only one with flying experience and that was for one trip over 10 years ago. So, we had no idea what we were doing at the airport and it showed! Fortunately, it wasn't too crowded so the people were patient with us. Of course, Jaycee's vest therapy machine, nebulizer, and bi-pap machine were all flagged by security for an additional screening. Jaycee's liquid medication was also flagged, but we had anticipated this.

Like any new experience, we had spent time talking to the kids about what a plane ride would be like and how they should behave. They were prepared. We boarded the plane with two happy kids. The ride went smooth. They loved being on an airplane.

We arrived at the Orlando International airport and looked for the greeters from Give Kids the World. They were easy to spot and they guided us through picking up our bags, getting our rental car, and navigating to the village. We would have been lost without them!

 

We made our way to the Give Kids the World village, which was about a 40 minute drive. I had read up on the place, so I prepared. But, it was so much more amazing than words can describe. From the moment we arrived, we were greeted with happy, smiling people who seemed to love being there. We got checked in and introduced to our village. Wow! It was amazing! The kids had their own bedroom and bathroom. There was also WIFI, a kitchen, a living room, and a washer/dryer. Snacks were waiting for us as well as gifts for the kids.

 

 

 

I went to orientation that day. Orientation is the only requirement this place has. There you learn about the week's activities, the village, and get your theme park tickets. You automatically get a 3 day hopper pass to Disney, 2 days at Universal Studios, and 1 day to Sea World. There were many other options of possible places to go if those weren't appealing. We were provided with a meal card that gave us access to have all 3 meals at the village for free. We could also eat ice cream free anytime the ice cream shop was open. Drinks were free. Everything was free. (While I'm giving some details, I'm not going to give too much away since I don't want to spoil all the magic for future families.)

 

We took the rest of the afternoon and evening to explore the village. There were a few rides to ride. The carousel was our favorite. We checked out the arcade, watched an amazing model train display, and drove some toy water boats. (Everything was free!) We made special pillows in the castle, got ice cream, and swam in their heated pool. Jaycee loves to swim, so this was her favorite!

 

We enjoyed lunch and dinner at the village. We never had a bad meal; it was all so yummy! We later learned that Perkins restaurant and Boston Market supplied the food we were eating. No wonder it was so good!

 

That night we planned out the week based on what was happening at the village and what we wanted to squeeze in. Tough decisions!  To be continued.....

 

 

Making a Wish

It started in the ICU. It was Jaycee's fifth time in the ICU for an illness. She was very sick, requiring a bi-pap machine to help her breathe continuously for days. Fortunately, it didn't get to the point of needing a ventilator, but she was close.

The social worker paid us a visit and recognized our family from previous admissions. She talked to us about seeing if Jaycee was eligible for Make-A-Wish. This wasn't the first time someone had mentioned this to our family, but this was the first time I actually gave it some thought. I guess after some major health crises within the span of a year it didn't seem right to wait to see if she was eligible. I decided I should pursue it for Jaycee while Jaycee could enjoy it.

I made the call to Make-A-Wish Illinois a few weeks after we got out of the hospital. There are some diagnoses that automatically make you eligible to receive a wish but Jaycee didn't have one of those. So instead, I had to give them a list of her conditions, medications, and doctors who had to be contacted to determine if she did have life threatening conditions. I hung up the phone and cried.

I wanted Jaycee to get a wish if she was eligible but her being eligible meant that her conditions are serious. It felt too real when I made this call. Sure, Jaycee has had two open heart surgeries, three heart caths, three other minor surgeries, and has been admitted to the hospital multiple times. She takes several daily medications, twice daily vest therapy for a lung cyst, and sleeps with a bi-pap for obstructive sleep apnea. In the past year, Jaycee has started to require special precautions for some type of staph infection on her skin, which has required weekly bleach baths to help control it. Her reflux disease has gotten so bad that we have taken additional steps like elevating her bed, limiting certain foods in her diet, and trying to eat the evening meal early. Still it seemed like I was admitting just how bad things have gotten over the past few years when I made this call.

I believe it took a few weeks to hear back that Jaycee was eligible for a wish. I was excited for her to have this opportunity. When the organization says you can wish for anything, they mean it. Nothing was off limits that they wouldn't at least look into. But, the child's doctor does have the final say if it is safe for the child or not. Staying in the continental United States was important to me for Jaycee's health and breathing.

I spent hours and hours googling and searching for things that Jaycee might be interested in. Her main interests are movies, tv, and the characters that go with them. So after much searching, it was decided to just do what many other wish families do: Disney. Disney Florida or Disney California became the decision. My husband and I just couldn't decide. So, we let our minimally verbal child decide.

 

I made these two pages and explained to Jaycee the differences in the trip in words she could understand. Then I asked, "Where do you want to go?"  We asked her about 10 times over a couple of days and she pointed to the page to respond. The winner was Florida by a landslide. So, our wish became to meet Barney the dinosaur (at Universal Studios) and stay at Give Kids the World, which is a special village for families specifically on wish trips. This also would give her the opportunity to go to the Disney parks and Sea World. Our doctor recommended that we go in the off season to avoid some germs, so February was our month to go!

 

I'll be sharing details about our wish over the next few posts, so come back if you want the rest of this story.