Finding Strength and Joy in the City of Dreams

Wish Dad, Joe, reflects on his daughter Zander’s New York City wish come true and their families’ journey since her diagnosis.

Life is good. It definitely has its twists and turns, and ups and downs. It’s been a bit of a rough go for my daughter Zander and our family. Don’t get me wrong, there are lots of great things in life. But, there are also those things that kind of leave a sour taste in your mouth, an ache your stomach, those things that keep you awake at night, those things that you’re helpless to do anything about.

My daughter Zander, who we affectionately refer to as Z, was diagnosed with cystic fibrosis at age 2. The diagnosis was scary (still is) and we had no idea what it really meant for Zander or our family. There have been day-to-day struggles with Zander’s health, struggles and arguments over her treatments, and trying to stay positive when things feel dark. We have seen that these struggles have been even harder for Zander than they have been for us. Depression is all too eager to get involved when you’re dealing with day-to-day monotonous treatments, constant doctor visits, and the hope, or lack thereof, that things will get better.

Jackie, our social worker at Children’s Hospital, identified this sadness in Z and recommended the Rainbow Connection. At our first meeting with our Wish Coordinator, Kristen, she came bearing gifts for our whole family. I remember worrying about how Kristen would word certain things about life-threatening medical conditions, as we get kind of sensitive about that stuff, but I did not need to worry. I can only imagine that she deals with other families who are in similar or worse circumstances with the same grace she showed to us, each interaction leaving them feeling better than before she came. We feel very lucky and fortunate to have met her; she brought a lot of joy and good feelings into our lives.

Although several exciting options were offered for Zander’s wish, she wasn’t going for any of them. Zander isn’t your typical kid. She wanted a unique wish and a wish that was totally her initiative and decision. She and Kristen eventually agreed on a New York City trip. Zander, myself, and my two daughters, Aleisha and Adeline, all went together.

New York City was sort of what we expected, and yet totally different at the same time. The girls were totally blown away and loved it instantly. My guard was up for a little bit due to the unknown, but we had an absolute blast.

The sights were amazing with all of the mammoth skyscrapers everywhere. The people were abundant and diverse. We were able to enjoy the city with a double decker bus tour, a ferry ride around the Statue of Liberty, and more! The first night we got to New York City we saw the Phantom of the Opera in a breathtaking theater on Broadway. Chinatown was really fun and the place where we got all of our gifts and souvenirs. On the flight home, between showering us with snacks and cookies, the flight attendants gave an announcement to the whole plane about Zander and told her to keep fighting for her health, causing my eyes and heart to well up.

We will take so many memories with us from New York and cherish them forever. Memories like our regular ritual of going to the Walmart on the corner near our hotel to get snacks every night before heading to bed. We’ll never forget the crazy movie theater where we saw the new version of the movie “It”, with its crazy staircases and escalators zigzagging up multiple floors. We will remember crying together at the Phantom of the Opera at the end of the play. And I know, I’ll always remember taking pictures of each other and hugging as we walked through Central Park together.

This trip was an outpouring of love from a huge number of individuals that included the Rainbow Connection Team, Kristen, everyone involved with Rock the Rainbow & the School of Rock of Rochester, and to the individual and corporate donors who contribute to this cause. We cannot say thank you enough. My three daughters and I have all determined that we will all be returning to New York City someday. We’re all going back and to relive this awesome experience.