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| Tommy makes a wish |
Where do I even begin, and how can I tell this story properly? After seeing all the touching kindness, amazing gifts and gracious people that make a Make-A-Wish trip happen, I worry my words will not do this experience justice. I have agonized over this very thing for a month already. And now, as I sit here staring at a blank screen, I realize that I need to start by describing what this trip looked like through my eyes, and how I came to be on this trip in the first place: I was asked to photograph a family’s Make-A-Wish trip to Florida. The planning stages of this trip began almost a year before the actual trip happened. The decision to go along was a difficult one, as I have four busy kids ranging in age from 15 to 1 and a husband that has never really been ‘left in charge’ for very long. Leaving my family over Thanksgiving would be both a challenge for my husband and extremely hard on the kids and me. I had never left my kids for more than a few days here and there, so eight days away was a huge commitment. Breaking the news to my children that I was considering not only be leaving them for 8 days, but that I would be going to Disney, Sea World and Universal Studios (HOGWARTS specifically) with another family’s children was hard for them to understand at first. My husband was so very supportive and together, we decided that I should go. My heart was tugging at me, telling me that I needed to capture these memories for this family that I already knew and loved. I did meet some criticism about my final decision to go, and it made me falter in my decision. Some wondered what I was teaching my kids about my priorities- after all, I was putting other people’s children before my own and abandoning them during a holiday. This cut my soul deep, since I pride myself in being a mommy who is always there for her babies. I talked these things through with my kids and husband many times, and my seven-year-old said it best. She said “Mommy, we have been to florida before, and Tommy is sick and his family needs you more than we do” she told me to make sure Tommy has a happy trip and not to worry about them, they would be fine. It turns out, my kids learned a very valuable lesson about my priorities as I left on that trip in November. My kids learned that its the right thing to do to put people and their needs before your own when it’s for a good cause. I’m pleased to say I taught them compassion and love by leaving and helping. I am proud to say, I stopped our life for 8 short days to witness amazing things. They were proud of me for going, and I do NOT regret that decision for one second. I went! I went as a care-giver, friend, photographer, baby snuggler, stroller pusher and really anything else that the family needed. I made it my mission to do whatever was necessary in order to make the trip as calm, seamless and pleasant as possible. I have known and loved this family for years, so it only made sense for me to accompany them and be there in any way I could. It was the least I could do, and I was happy and proud to do so. I don’t know what it feels like to have a child like Tommy in my home and in my heart like this family does. I don’t even begin to know the struggles and sacrifices that go along with words like ‘disability’ and ‘medically fragile’. I learned a lot during those 8 days, though. I learned so much about what Tommy CAN do, things he DOES know, I spent time observing, and I saw him so differently so quickly. It’s easy to see what Tommy cannot do and what he isn't or will never do, but If you really take a moment, you will see all that he is. He is so much. I witnessed so much tenderness and compassion from family members and even complete strangers. A trip like this truly restores your belief that people are good, and it was so refreshing. I needed to feel that outpouring of good, it’s just what my soul needed. But enough about me. I think, in order to hear about the trip, you need to learn a little about Make-A-Wish as an organization. The ‘wish granters’ and people that put this trip together really think of everything. We visited Sea World, Universal for two days, and Disney for three says. We managed to make it to SEVEN parks in SIX days!! Tens of thousands of volunteers, donors and supporters advance the Make-A-Wish vision to grant the wish of every child diagnosed with a life-threatening medical condition. In the United States and its territories, on average, a wish is granted every 37 minutes. The people at the MAW foundation believe a wish experience can be a game-changer. This one belief guides and inspires them to grant wishes that change the lives of the kids that they serve. Disney alone has been partnering with MAW since 1981, and in 2015, Disney and Make-A-Wish will grant their 100,000th global wish together. Isn’t that incredible?
Or you can donate to Make-A-Wish Illinois (giving to a more local charity) here:
I also want to introduce the beautiful child and his family that deserved the trip. So, let’s meet the this amazing child and family, shall we? Tommy’s story, as told by his mother, Alyssa:
This is my story. My husband's might be a tad different. While we walk this journey together, we also experience it alone. Thomas Robert Gibbel is named after his great uncle Tommy, who passed away at age 7 of cystic fibrosis. Thomas is a slew of medical diagnoses, all stemming from a tiny tiny deletion on his 20th chromosome, a deletion only a recorded 60 people worldwide have. Whatever is missing is responsible for proper brain function. 7 years later he is represented by a thick medical chart. He has undergone 15 surgeries... Before I stopped keeping track. He survived cancer which included the removal of a grapefruit size tumor and his right kidney. He has a digestive system that cannot support his body resulting in nutrition through a central line in his chest. He has a bowel that doesn't move nutrition through, resulting in multiple blood infections and stomach pain. There are seizures, a cleft lip and palate which was repaired in three separate surgeries within his first year of life. We deal with cerebral palsy and muscle issues daily. Just to name a few. That is him on paper to countless doctors. But to me, he is a miracle. Tommy does not speak. But he smiles with the soul of an angel. He does not walk. But he will find a way to be the center of your attention. He does not hug me or kiss me but he has the love of the most innocent child on the face of this planet. He can't call me mom but he knows me and in his own way, he understands. And is happy. My friends call me strong. But it is not strength. It is just courage. Because I've been weak and sometimes I don't understand. And I've been angry and lost and alone. But God is good. He ALWAYS provides.
Until you have watched your child fight for breath and life, whether they win that fight or not, you never truly grasp how fleeting every single moment is. Seeing a trip like Disney through the eyes of a child is amazing. But seeing Disney through the eyes of a medically fragile child who, under normal circumstances, would never be able to experience such colors and sounds and smells and lights and laughter is extraordinary. It's life changing. Through Make-A-Wish Illinois and by the graciousness of two special friends, my family was able to just breath. For seven days we left our cares at home and just simply breathed.”
This trip wasn't just for Tommy. A Make-A-Wish trip is for everyone in the family. I didn’t quite know that at first, but it’s true. Think of all the things this family doesn’t get to do....they rarely go many places as a family. Traveling is so hard because of all the medical devices and items needed to ensure Tommy stays healthy. This family doesn’t go to fairs, or weekend trips, or even travel to the zoo; it’s just not an easy way of life. This trip was for Eric and Alyssa, Tommy’s parent’s. They love him so surely. They accept him and look at him with more love than I’ve ever seen. It’s achingly beautiful. They simply adore their child. They love him with all that they have for as long as he is here. Isn’t that what we all do as parents? Alyssa is so strong. She holds everyone together, and I still don’t know how she does it. She manages her home and family with ease. She realizes life isn’t easy, and she asks for no sympathy. She beautifully navigates through life and does it in a way that anyone would admire. Her family is her home, and she loves everyone just as they need to be loved. I’m proud to call her my friend.
Eric is a hardworking man, and it shows in everything he does. He has a sweet teasing laughter with Ryleigh, he is rough and tumble with Andrew, and the tenderness with which he holds Tommy is a sight I cannot begin to explain. Both Eric and Alyssa rarely get a ‘break’ from life to be a couple, and they deserved to cut loose and enjoy their family. They deserve to relax. This trip was for Ryleigh, Tommy’s big sister. She puts herself last, and never minds. I witnessed it over and over. No one even asks her to do so, she is just that innately good. Ryleigh SEES Tommy. She knows him in a way that you can only see to understand. She truly loves Tommy, and he loves her right back, and it’s so COOL to see. He reacts to her voice in a way that radiates admiration. The images I captured of these two will make anyone cry, they are just perfectly comfortable together. I had a few deep conversations with Ryleigh, and she’s a wise old soul. She knows life isn’t all shiny and perfect, but that she can make it that way just by being herself. She’s a beautiful person, inside and out. I’m happy that I get to know her and watch her grow up into this amazing person I know she will be. Witnessing her see Hogwarts for the first time was a hi light of my trip (and everyone else’s) She was so happy just to stand there and see it, it brought a tear to my eye for sure!
This trip was also for Andrew, Tommy’s almost 2 year old baby brother. When his mom goes places, many times she needs to get a sitter for Tommy in order to get groceries or run errands easily, therefore Andrew usually stays home with the sitter. This means that Andrew isn’t out and about very often, so you can imagine how overwhelming a place like Disney was to his little self! Considering his age and his situation, I’d say Andrew did very well. He eventually warmed up to both Tara (Tommy’s nurse- more on her later) and myself. We heard many sweet giggles from him during the vacation. Andrew is so smart, he truly takes in everything he's looking at. You can watch him learning, it’s incredible.
Lastly, but certainly not least, we meet Nurse Tara. I met her for the very first time the morning we left for Florida. We became immediate and forever friends, as we experienced something together that few get to see. We watch parents with sick children at Give Kids The World Village, we cried together in the evenings thinking about how fortunate we are in our own lives, we fell asleep mid-sentence after exhausting 10 hour days at the parks, we missed our kids together, we got lost driving in a foreign area together, ate late night meals together, laughed SO MUCH, and we helped this beautiful family experience this vacation together. Tara met the Gibbel family in a much more serious situation, unfortunately. She was/is a nurse at the PICU (Pediatric Intensive Care Unit) at St. John’s Mercy in St. Louis, Mo. During Tommy’s frequent stays there, Tara would occasionally cross the Gibbel’s path. Two specific times, however, Tara was Tommy’s main nurse. In order to live, Tommy needed major intervention, and without Tara and Mercy’s impeccably quick acting doctors, Tommy would not be alive today. Alyssa said of Tara “when a nurse has that profound of an involvement in your life, you form a bond.” When the opportunity of this trip arose, Tommy’s family knew immediately which nurse they wanted to be Tommy’s caregiver, and Tara was honored to have been asked.
Eric is a hardworking man, and it shows in everything he does. He has a sweet teasing laughter with Ryleigh, he is rough and tumble with Andrew, and the tenderness with which he holds Tommy is a sight I cannot begin to explain. Both Eric and Alyssa rarely get a ‘break’ from life to be a couple, and they deserved to cut loose and enjoy their family. They deserve to relax. This trip was for Ryleigh, Tommy’s big sister. She puts herself last, and never minds. I witnessed it over and over. No one even asks her to do so, she is just that innately good. Ryleigh SEES Tommy. She knows him in a way that you can only see to understand. She truly loves Tommy, and he loves her right back, and it’s so COOL to see. He reacts to her voice in a way that radiates admiration. The images I captured of these two will make anyone cry, they are just perfectly comfortable together. I had a few deep conversations with Ryleigh, and she’s a wise old soul. She knows life isn’t all shiny and perfect, but that she can make it that way just by being herself. She’s a beautiful person, inside and out. I’m happy that I get to know her and watch her grow up into this amazing person I know she will be. Witnessing her see Hogwarts for the first time was a hi light of my trip (and everyone else’s) She was so happy just to stand there and see it, it brought a tear to my eye for sure!
This trip was also for Andrew, Tommy’s almost 2 year old baby brother. When his mom goes places, many times she needs to get a sitter for Tommy in order to get groceries or run errands easily, therefore Andrew usually stays home with the sitter. This means that Andrew isn’t out and about very often, so you can imagine how overwhelming a place like Disney was to his little self! Considering his age and his situation, I’d say Andrew did very well. He eventually warmed up to both Tara (Tommy’s nurse- more on her later) and myself. We heard many sweet giggles from him during the vacation. Andrew is so smart, he truly takes in everything he's looking at. You can watch him learning, it’s incredible.
Lastly, but certainly not least, we meet Nurse Tara. I met her for the very first time the morning we left for Florida. We became immediate and forever friends, as we experienced something together that few get to see. We watch parents with sick children at Give Kids The World Village, we cried together in the evenings thinking about how fortunate we are in our own lives, we fell asleep mid-sentence after exhausting 10 hour days at the parks, we missed our kids together, we got lost driving in a foreign area together, ate late night meals together, laughed SO MUCH, and we helped this beautiful family experience this vacation together. Tara met the Gibbel family in a much more serious situation, unfortunately. She was/is a nurse at the PICU (Pediatric Intensive Care Unit) at St. John’s Mercy in St. Louis, Mo. During Tommy’s frequent stays there, Tara would occasionally cross the Gibbel’s path. Two specific times, however, Tara was Tommy’s main nurse. In order to live, Tommy needed major intervention, and without Tara and Mercy’s impeccably quick acting doctors, Tommy would not be alive today. Alyssa said of Tara “when a nurse has that profound of an involvement in your life, you form a bond.” When the opportunity of this trip arose, Tommy’s family knew immediately which nurse they wanted to be Tommy’s caregiver, and Tara was honored to have been asked. 
So, we were off. We were picked up By Windy City Limousine in two vehicles, one was obviously wheelchair accessible. The drivers were kind and helpful, and they were also our drivers for the ride home 8 days later. Make-a-Wish graciously covered the transportation to and from the airport and the driver’s tips. We were driven to the Springfield Airport as were were catching a direct flight to Orlando via Allegiant Air. I don’t even know how to explain the amazing service we received from the employees at Allegiant. The Gibbel’s had never flown with all their children before, so this could have been a disaster of an experience, but the employees of Allegiant made it wonderful and easy. We were met with smiles, helpful service and given our own VIP waiting room while waiting for our flight leaving Springfield, and for the return. The employees carried bags for us, and just made everything a pleasant experience. Tommy’s important medical equipment was well cared for and they allowed us to go on the plane first to get him all set up before the rush of the other passengers came on the plane. This in itself was a very kind and helpful gesture. I will certainly be returning to use Springfield airport and the Allegiant airline again as soon as possible. I couldn’t have been more impressed. I wasn’t aware at the time, but after doing a little research once I returned home, I found out that since May 2012, Allegiant has been a proud supporter of Make-A-Wish, and by establishing Make-A-Wish as its primary charity, Allegiant provides wish travel to families in the communities it serves. They are VERY committed to provide air travel for wish families. Since beginning its support of Make-A-Wish, Allegiant has donated over 400 wish flights to wish families and almost $300,000 in cash sponsorships. They really made our group feel special, and we were so grateful!! We arrived in Orlando very late at night, and were greeted by a husband and wife greeting team, they volunteer for the Give Kids the World Village. This couple assisted in getting all of our bags and getting our rental cars (again, provided in full by the MAW foundation). The Gibbel’s had a wheelchair accessible van, and Nurse Tara and I were given a great rental car as well. All insurance fees and gas for both vehicles were also included in what was given to us at no charge. Once we made the drive from the airport to Give Kids the World, we seemed to just grow more and more amazed at what Make-A-Wish had given to this and so many other ‘wish’ families. We checked in to the GKTW Village late and we were starving. The kindness started right then, it seemed. The ladies at the front desk had a full meal prepared and ready to hand us as we went to the villa! I wish I could describe Give Kids the World in a way that it deserves, but there is no way to do so. The back story alone is incredible. 
To DONATE to this deserving place, please go here: https://secure2.convio.net/gktw/site/SPageServer/;jsessionid=65F768F418E8B151100B32D06604A3E8.app260a?s_subsrc=%2Fabout%2Findex.php&pagename=donation_api&s_src=gktw_menu
The Give Kids the World Village alone would have made the trip magical. When a family stays at Give Kids the World, they are treated like royalty. Upon arrival, all medical equipment/medications are waiting inside the villa. Here are just a few of the things that make the GKTW village incredible: A special volunteer ‘angel’ delivers gifts each day for each wish child (and each of their siblings) staying in the villa. There is a cookie cart that drives around and delivers warm cookies and milk on site. All meals at the Village are cost free for each family member. The most important part, and I think any family that has ever stayed at GKTW Village would agree with this, is the Ice Cream Palace! Families can get ice cream morning, noon and night, starting at 7am!
GKTW also has special activities every day, too. Every Monday is Halloween, so all kids get to dress up and trick or treat no matter what time of year it is. This is incredible for those that have life threatening illness that might make it hard to Trick or Treat later in the year. Every Thursday is Christmas, and is so special and meaningful for kids that may or may not be here by next Christmas. Many Disney characters give each child a wonderful wrapped Christmas gift, and Santa pays them all a visit, too. Horse rides are available, kids can enroll in a Mermaid Academy, they even have teen nights and tea parties! They feature movies at the pool, families can take part in Village Idol, they can play the World’s Largest CANDY LAND Game and there are special meet and greets with favorite characters. Give Kids The World has many magical Village venues for wish families to explore—Marc’s Dino Putt, Amberville Train Station, Julie’s Safari Theatre, the Village Chapel, Castle of Miracles, Enchanted Carousel, Matthew’s Boundless Playground and more! There were even a few rides on site that non-transfer wheelchair bound children could be put on, and strapped in safely. I witnessed a mother watching her daughter on a ride like this, she cried and said it was the first time both of her kids had ever ridden a ride together. Ever. At the pool, I noticed there were small waterproof ‘chairs’ for wheelchair bound children to (some for the first time ever) be taken into the water to enjoy the same fun as everyone else. Wish families receive a three-day park hopper pass for each family member that allows you to visit the Walt Disney World theme parks: Magic Kingdom, Epcot, Disney’s Animal Kingdom and Disney’s Hollywood Studios. Families also receive two-day park hopper passes for each family member to Universal Studios and Islands of Adventure theme parks as well as a single day pass to SeaWorld Orlando. Families are also offered additional attraction tickets to Busch Gardens Tampa, LEGOLAND Florida, Aquatica Water Park, Gatorland, the Kennedy Space Center and so much more.
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| Ice cream all day every day? |
I also saw this beauty in a family at one of the Village parties. This family had a child that was wheelchair bound. I don’t know their situation, not did I even catch their names. I watched as they stood behind their child and beamed at him as he danced and had the time of his life. This kid’s smile radiated across the entire party. He was adorable!! The father put his arm around the mother and they just took a deep breath. And they watched their beautiful son have fun. It spoke to me in such a way that I had to photograph them. I will include the picture in my final images from the trip, who knows, maybe they will see it someday. Experiences like these are what Make A Wish and Give Kids the World are made for. I feel so lucky to have been given the opportunity to see them first hand. As far as Tommy’s Wish, and his family’s experiences go, there were so many beautiful moments. Being a Make-A-Wish family gives you many ‘perks’ across the parks. Front of the line access to any and all characters and no waiting for any rides are some of the best perks. Tommy was smitten with all the gorgeous princesses, he smiled so wonderfully for each and every one of them. I loved it when they kissed his forehead and left lipstick kisses on him. I know the fireworks at Disney were something Tommy enjoyed with his family.
It’s designed to allow the child to have a safe place to be if things get too overwhelming, or loud, or if they need a change, medicine, or a little quiet time. We used the lounge a few times, and it sure made the days easier. Being with Make A Wish also covered all meals in any of the parks, and souvenirs purchased. We also got the Photo Pass given to us at Both Universal and Disney. This was wonderful. It included all images taken on the rides, and all photographs taken throughout the parks at no extra charge! The Make-A-Wish foundation really knows how to take great care of a family and take all the stresses of a vacation and make them a non-factor. All that's left for the family to do is have FUN and make memories. Memories of feeding and petting sting rays, eating ice dream for breakfast and warm cookies from a little cookie cart, placing Tommy’s star in the Castle of Miracles,
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| The Castle of Miracles |
drinking butter beer and casting spells on the streets of Hogsmead,meeting Captain America (Ryleigh liked him), meeting every Dr. Seuss character in one small space, Tommy’s huge smile on the carrousel, counting dad’s in crocs, Andrew’s special fake cry (haha), high fives from Tommy, the kindness, respect and care each character gave to Tommy when they met him, Ryleigh’s ‘good side’ selfies, Adele’s “hello” jokes, Cape May Mickey waffles, buying ALL OF THE BOOKS, Ryleigh's face when she saw Hogwarts, losing our rental car more than once, and simply the bond we all ended the trip with. It wasn’t all perfect roses all the time, but what we all took from those 8 days away will forever be with us.
Here area few more of my favorite images from our amazing adventure! :) Enjoy! And leave comments!
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| Princess Merida was so kind to all the children waiting to see her |
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| The electric parade |
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| Nurse Tara needed to fix Tommy up |
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| Sea World |
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| Tommy went on a safari |
