Have you ever wanted to make a wish and have it come true? What would you wish for, a bedroom makeover, a get-away vacation, or meeting a famous person? For children managing to brave a smile in the face of medical challenges, a wish is an opportunity have a dream come true and put aside the term “patient,”
even if for a little while.
Imagine a boy who is only familiar with hospital rooms, doctor’s visits and home. At 3-years-old, my “little” boy had not been to a restaurant or even visited a park. As his mom, I was concerned with what could happen outside a familiar environment. I wanted to protect my son from unforeseen circumstances. The safe confines of our home provided me comfort. I thought, “If I just keep him home, everything will be okay.”
My concern wasn’t unrealistic. My son, Samuel, spent the first six months of his life in the hospital fighting a diagnosis which means “death bringing” in Greek. A ventilator offered constant assistance to his restrictive lungs. A feeding tube kept him hydrated. Even seconds without oxygen would be cause for alarm. A team of nurses helped us manage care for our son living with a lethal form of dwarfism.
There are over 200 types of dwarfism. Most are familiar with Achondroplasia which is the same type of dwarfism seen on the Learning Channel’s show, Little People, Big World. My son’s form of dwarfism is called Thanatophoric Dysplasia. Surviving birth is a miracle. Samuel is the only survivor in Florida and only 1 of 12 survivors worldwide. The primary challenge for TD children is not their dwarfism but their restricted lung capacity.
Despite this huge medical hurdle, my son defied the odds to not only survive, but we put his ventilator in the closet four years ago. I could not have believed Samuel would be ventilator free when a nurse nominated him for a wish from the Make-A-Wish Foundation.
My son loved the dolphin mural in his room. So, when the wonderful volunteers from the Make-A-Wish Foundation designed a wish for Samuel, the idea to have him go to SeaWorld was a natural fit.
On a chilly day in January, our adventure began. A limo pulled in front of our home to transport us to Orlando. Such a big limo for a little guy with dwarfism. We filled half of the limo with our luggage and Samuel’s medical equipment which included his ventilator, suction equipment, oxygen tanks, AMBU bag and back up batteries.
Soon, we arrived at Give Kids The World Village, a resort for wish families staffed by loving volunteers. We enjoyed a private villa as well as tickets to SeaWorld and to the Disney theme parks as well.
Several times each day, my husband and I would venture out with Samuel. At home, we were overwhelmed to visit Samuel’s doctor once a week. In Orlando, we left the villa up to three times a day. We learned a check list was vital to remember all of Samuel’s life-saving equipment.
We visited SeaWorld where Samuel loved the Sea Life Aquarium tunnel. He looked up at the fish swimming by as his mouth hung open in awe. We had to go through twice. Such a sweet moment for us to enjoy as a family.
On one day trip to Disney World, I pushed Samuel’s stroller near a pond. I stopped, listened to the hum of Samuel’s ventilator and looked out over the water. A thought of panic overtook me. Are we crazy doing this? What if something happens? How is an ambulance going to find to us here? I turned to look at Samuel and found him sleeping. Everything was fine. I breathed a sigh of relief.
This wish pushed me out of my comfort zone. I learned to exhale and enjoy precious moments. Samuel discovered a whole new world he never knew existed. He visited dolphins one on one, had pictures taken with Mickey Mouse & Goofy, and enjoyed his first merry-go-round ride.
Yes, it was a vacation, but this trip held more meaning for us. It taught us how to live a more normal life with a medically needy child.
My son is now 11-years-old.
Since the Make-A-Wish trip, we have traveled to Niagara Falls, Washington, D.C. and even Prince Edward Island in Canada. The genesis for these trips began when we received this amazing wish.
As is proof with our family, the power of a wish has lasting impact. You can be a vital part of a wish granted right here in the Tampa Bay Area. World Wish Day is on April 29th, 2017.
You can partner with Make-A-Wish by walking in the family event, Walk for Wishes. By participating, you can bring the life-changing impact of a wish to local children who battle life-threatening medical conditions.
Event Date: World Wish Day, April 29th, 2017 – 8:00am – Walk 9:30am
Event Location: Water Works Park
Event Address: 1710 North Highland Ave., Tampa, FL 33602
Registration Fees: $20.00
Register Here: www.site.wish.org
Find out about new wish stories here: www.cnfl.wish.org