When My Daughter Took a Make-A-Wish Trip to Meet Barney

About 16 months ago, I received a phone call that made me smile. Parenting my daughter, Jaycee, has led to many phone calls resulting in emotions. These calls have given me lab reports, surgery dates, x-ray findings or some issues with our medical insurance that often end with me sad, angry or frustrated. This phone call was different. I had happy tears. With Jaycee’s extensive medical history, this was the phone call telling me Jaycee was getting a wish granted from Make-A-Wish.

Our family traveled to Florida, visited the Orlando parks and saw Jaycee’s ultimate wish of meeting Barney the dinosaur come true. We were also able to stay at Give Kids the World Village, which is an amazing resort only for children and their families on wish trips.

It was almost one year ago when my husband and I were anxiously waiting for Jaycee to see Barney. Jaycee’s face lit up as she watched Barney and his friends dance and sing at his theater at Universal Studios in Orlando. After the show, Jaycee got to spend several minutes with her favorite friend.

Barney was “resting his voice” between shows so he could not talk to Jaycee. It worked well since Jaycee’s speech is extremely limited. It was neat to watch these two communicate and interact without words. They danced, held hands and took a little walk. Jaycee was thrilled to see Barney in real life. My husband and I kept watching Jaycee watch Barney. It was so nice to see her so happy.

Barney was Jaycee’s highlight of the trip. But she also experienced several firsts on this trip:

• first airplane ride
• first limousine ride
• first time eating ice cream before lunch
• first time playing putt-putt golf
• first time seeing the ocean
• first time enjoying sand on a beach

Our family had an incredible time on the wish trip. It’s been almost a year later, and the wish trip still gives our family joy. Pictures from that trip are scattered throughout our house. Heavy scrapbooks and a digital movie of all the pictures are available for Jaycee, too. With Jaycee being minimally verbal, these visuals are important to allow her a chance to communicate about the trip. We want this trip to be remembered by Jaycee forever.

There are days that are hard for Jaycee. Blood work terrifies her, but she will most likely have it done several times this year. She will have a yearly sleep study done, which will no doubt bring bad news again. She will more than likely miss school and social events due to illnesses. When she’s sick, the amount of medication she takes increases, and she is often stuck in the house for days until her breathing has improved substantially. If history repeats itself, she will find herself in a hospital bed at least a few times this year. As these bad days roll in, we are all at their mercy and unable to stop them.

What I can do is to help Jaycee remember the good days. I can bring out a picture of Elsa and Anna from the wish trip. I can respond to Jaycee when she signs, “Elsa, Anna, me.” When I show her a picture of Barney, Jaycee will sign, “Barney, me, dance.”  As she looks at the pictures of us on the ocean, she will sign and gesture, “Me push momma. Momma got mad.” (Yep, that happened.) Then she will smile waiting for me to jokingly comment on how mad I was.

That trip gave us an amazing week of happiness and unique experiences. But, it has given us a lifetime of memories. I hope Barney knows how much that day meant to Jaycee and our family.

Follow this journey on A Special Purposed Life.