IBD | Ostomy | Relationships
“Once in a while, right in the middle of an ordinary life, love gives us a fairytale.” Years ago, I never would have anticipated referencing this quote. Yet, somehow, that is exactly what my life has become. They often say true love comes when you are not seeking it. Neither my husband nor I were searching for love or romance when we met. Neither of us intended to re-enter the dating pool. We were both divorced, 30 something single parents who came from pasts that taught us what love and marriage are not supposed to be. Before we met, had anyone asked us if we would find that special, only in the movies type love, we would both have answered “no” without hesitation.
No one is perfect. Everyone has some sort of something that they bring to the table when entering a new relationship. The only difference is that each person comes with a different something unique to their own life’s journey. When we traded the “I” for the “us” we knew even more so the significance of joining lives and blending our families into one that it was all or nothing, and so we went all in!
Our life has never been ordinary. For example, my husband and I never conventionally dated. Neither of us asked the other out, and neither of us tried to officially proclaim our relationship status. The way we tell it to people is by explaining, “we danced and somehow ended up married.” I had been teaching dance to children in our community and was preparing for our biannual show at a local retirement community. As the choreographer, I always did a dance number. For that specific performance, I had choreographed a bachata dance for two couples. I had one couple already, and I was 50% of the other. I asked anyone and everyone I could network with or think of to be my partner and got no’s from everyone. The short ending to this is with only two weeks till showtime, I finally found a partner. One of my student’s dads in my group was willing to give it a go and offered to step in and dance with me. His name was Marcos, and he is now my husband!
Very similar to the iconic movie Dirty Dancing, we had a short window of time to learn and execute a 4-minute routine that included a lift. We had to practice every second to be able to memorize the choreography in time for the show. To complicate things even more, we both had kids and jobs, along with the fact that I was in the process of moving. We had instant chemistry and literally fell in love on the dance floor exactly as Baby and Johnny did in the movie. Our families blended naturally at the practices leading to group outings, play dates, and later a camping trip that allowed us to get to know each other and as they say, the rest is history!
I had been diagnosed with IBD for nine years and had my permanent ileostomy for five years when we met. My parents worked full time and they, along with some of my dear friends, stepped in to help care for my daughter, who was too young to even be allowed on my unit in the hospital most of the time. While I had support in that sense, other variables left me to face treatments, admits, and difficult surgeries alone. Being alone was all I knew, which is a feeling to which many patients can sadly relate. I had gone it alone, and it was not easy, but I learned how to support myself. When Marcos came into my life, I learned and lived patient life on the other side of the spectrum for the first time. I now know the feeling of having a true partner. Someone who loves ALL of you and accepts you exactly as you are. Someone that remains at your side through any and every up and down life hands you
He attends every appointment he can and has learned how to do things as a caregiver like administer TPN, change dressings, and do port & PICC care. He literally carries me when I cannot walk, empties drains and foleys as if it’s nothing, and stays with me at the hospital sleeping on a hard chair or bench half his size for days- months at a time never leaving my side.
When we got together, I knew my ostomy was irreversible and well understood all life with IBD brings. It was important to me he knew these things before the relationship got serious. There is certainly no “how-to” guide that tells you how to tell someone things like this. I was already in a place of acceptance of my diagnosis and bag. That part of the journey was checked off the list for me so, when it came time to tell Marcos, I only had to focus on his reaction and acceptance (or lack of) when I had to rip-off the band-aid and share that piece of my life with him. I made it a point to drop hints and was transparent with him from day one about my health issues but did not specifically say I had an ostomy. For me, it was a way to get it out there and leave a door open to build upon should things have progressed. Once we both knew this was it, I knew the conversation needed to happen. I explained that I had an ostomy, what it was and that it was permanent, and that my situation would likely require ER runs, hospitalizations, and surgery at any juncture. His response was, “can I see it?”, “can I try one on to see how it feels?” I already loved him, but his reaction, interest, and total acceptance without hesitation let me know that my ostomy would not change a thing. Perfection does not exist. An ostomy or illness is something a spouse endures and takes on, yes, but so is debt, children, job requirements, etc. When you truly love someone, you only see them. The rest is just there and what you have is not who you are.
So, you see us dance and enjoying life together or me sharing about how wonderful and amazing my husband is, it is not because I lucked out and have had it easy. It is exactly because of the life I had before he came into it that makes me know the true blessing; I have in him walking beside me every step of the way. We endure much adversity and suffering from my health, and all life hands us in many restraints, so we balance it out with things that bring us great joy and happiness, such as our dancing together every second life allows! Work hard, play hard, we suffer much, dance even more! Our union goes so beyond the dance floor. Yet like a dance, each piece of us comes beautifully together in the dance of life to make beautiful music together as one in what is now as we call it- #PestanaLife!
Marcos and Theodora created a special dance piece to the song Union Eterna (an undying union) that helps express the love and happiness they have found in one another and contrary to some of their pieces for ostomy awareness, this one is solely focused on them and their undying love as man and wife:
Union Eterna (An Undying Union)
I admire your spirit–you are living with faith and love. You are blessed to have Marcos and all of your children. I pray that you will get some help with your health.