I lay there beside him in his hospital bed surrounded by the four corners of our little ICU room and tried my hardest to make it our home. Because what is home, really? The definition of home for us became, "Wherever I'm with you." It didn't ring more true than the last three months I spent with my husband as he struggled to live.
Cystic fibrosis (CF) had ravaged Spencer's body and tore at every inch of my heart. It threatened relationships, promises, hope, and time. Bound by oxygen tubes and a bi-pap machine, his freedoms were taken away one by one. The ability to run. Bike. Sing. Walk. Laugh.
When I first met Spencer, he had all but given up on living. When he realized he wanted to spend his life with me, Spencer began to see a reason to fight. He was finally able to see a glimmer of hope in a future with a wife and possibly a family, things Spencer never thought he would have.
That's one of the many things about love. It gives us something not only to live for, but to thrive on. It builds a new foundation for hope. And when you have hope, you have everything.
As our love grew, cystic fibrosis continued to test our patience and our vows. But CF couldn't take away our bond, our commitment to each other, and the deep, passionate love that radiated between us.
At first glance, Spencer and I were an unlikely couple. We lived two states apart, he was in Utah and I in Kansas. Spencer was from the city, played World of Warcraft, loved "They Might Be Giants", and stayed inside most days. I am from a small town, was active in sports, loved a good country song, and was always out and about with my friends.
Spencer had CF, I have Ulcerative Colitis. We met on the Starbright World social network for chronically ill teens. What bound and connected us from the beginning was sharing and understanding living with a chronic, and in Spencer's case, terminal illness. As the things we didn't have in common faded and became the things that we did have in common, a friendship quickly grew. What started out as a giddy teenage crush turned into a deep desire to see each other at every opportunity and to get to know one another deep down to our core. Love blossomed over 700 miles.
Describing the moment I knew I was in love with Spencer is like describing the color yellow to someone who has never before been able to see. But I remember the moment well. We were talking on the phone, contemplating our lives and discussing our views, as we often did. He had such an easy-going yet sophisticated way of thinking about life. For the first time, right in that moment, I realized I loved him and was almost bursting at the seams to tell him, but wanted to hear him say it first. Our conversation died down and we both lay there in silence thinking the very same thing. Spencer took the plunge and interjected into the silence, "Nikki, I'm in love with you. I ... I love you." Imagine the smile on my face as I replied a quiet and tearful, "I love you, too."
I never believed in a soul mate before. Spencer made me a believer. We were made for each other. We were the kind of couple who could communicate by sharing a glance. We would finish one another's sentences. We were connected on a level that I will never quite understand. I am often told that we shared the kind of love that people look at and think, "I want that." It was the kind of love that makes up fairytales and Lifetime movies.
But the strength of our love did not exempt us from hardships that were thrown our way. Spencer was admitted into the ICU in critical condition three months after we said our vows. For the next three months he lay in the hospital fighting to become strong enough for a double lung and possible liver transplant.
A very small sliver of hope kept me going during those months in the ICU. Hope for children together dwindled to hope for a future for us. Hope for a transplant turned into hope for the next year. Hope for the next year became hope to celebrate our first Christmas together. Hope of Christmas diminished to hope for the next day, hour, and minute.
But no matter how far that hope slipped out of grasp, it was always there. It was the one thing that was always constant in our chaotic life. It was bound to me because of my love for him.
We shared six months together as husband and wife before Spencer died at 23 years old. I always knew that my time with Spencer would be short. We fell in love as teenagers and married as young adults. We felt a sense of urgency to take the next step with our relationship despite friends and family telling us to wait. There was a reason for that, but at the time neither of us knew exactly why. At that time I never imagined I would become a widow only six months after our wedding and at 20 years old.
Spencer passed away in my arms surrounded by love on December 11th, 2011. We celebrated his life across the globe with a balloon release and laid him to rest a few days later on December 17. Our love couldn't stop death, but death couldn't stop our love. To take a line from Mitch Albom's book, The Five People You Meet In Heaven. "Life has to end. Love doesn't."
I could share my story all day long about how being with someone who shared a chronic illness helped me cope and get through the bumps in my own chronic disease, but I think sharing Spencer's experience is such a greater testament to us and our love. What we had was real and tangible. It wasn't about cystic fibrosis. It was never about cystic fibrosis. Instead it was about a sweet girl and a quirky boy who fell deeply in love and just wanted one more day to show the world how unstoppable their love could be.