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Being December, we all know by this time of year we are in a marathon of holidays and festivities from Halloween straight through to the New year. Most likely, those such as myself with any type of illness have felt some type of “FOMO” at one time or another, and the holidays have the potential to increase that feeling because no one wants to miss out on all that fun, right?

Through the years, I’ve learned the monster of illness that makes us feel the FOMO also gives us a wonderful gift: The gift of appreciation. At the expense of our suffering, we are given the ability to see the blessings amongst the chaos, which is something not everyone can do. Someone who has never endured pain like our bodies often have could not begin to understand the amount of gratitude that comes with just a moment of relief from that pain. Someone who has never had to be NPO will never understand the happiness you feel when you finally get to quench your thirst through the swipe of a wet sponge on a stick, which of course doesn’t sound at all appealing, but if you have ever been NPO you know exactly what I refer to. Quarantine life means dealing with the frustrations of distancing & cabin fever, but those who’ve known what life is like chained to a hospital bed with tubes and wires all over you while being poked and prodded multiple times a day know how fantastic it is to GET to stay in the comfort of your home. Being a recipient of this “gift” myself has given me the ability to make the most of every good day or, as I now refer to them, days of “I can.” This refers to any day my illness takes the back seat and lets me “drive” for a change. If lucky, those moments of “I can” can be weeks-months, yet other times it can be as brief as mere hours-days. Knowing this, my strength of spirit prevails, and that gives me the ability to cease every moment that’s mine and make it count!

For most, holiday cheer stems from how fancy gifts or how to trim the tree. For me, just being home for the holidays instead of in a hospital is HUGE! I learned this lesson on Christmas of 2011. That Christmas eve, I was emergently admitted to the hospital via the ER due to excessive vomiting. That was the first year since having my then 7-year-old I was robbed of my rightful place with my young daughter on Christmas morning. Before leaving, with a Foley strapped to my leg and a 3-week incision, I found the strength to fill her stocking and set out the gifts for her under the tree. While doing that, I was running back and forth to vomit the entire time. I have no idea how I managed to do that other than that superhuman, lift a car off your baby level Mom strength they speak of.

I did not get to wake my child on Christmas morning to tell her Santa came. I instead had the pain of having to wake up my daughter in the middle of the night to say goodbye and to say to her I was leaving her to go back to the place that had kept me from her for several months. She was able to visit me on Christmas day for a brief time and brought her gifts to show me in my hospital room. When she came, she saw me with the first of many ng tubes down my nose. The pain of that year has been what has given us the appreciation of every Christmas we are home & together.

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New Year’s Eve 2017 is another tale of how this gift has helped me learn to be in the moment and appreciate the smallest of things like being able to walk without assistance and, more so, whenever I can dance! Every year my husband and I travel to my amazing in-laws for NYE. It’s an event in our family that we all await with anticipation. We celebrate together with food, music, and dancing till dawn. Then we do it all again on New Year’s Day before returning back to everyday life. Everyone clears the floor for us to get the party started, as we are known to be the first ones on and the last ones off. That year (to put it in Dirty dancing lingo), “ IBD put Baby in the corner,” and I, the dancer had to sit out and watch the festivities with not even one dance.

Earlier NYE day, I began to have severe pain so bad I could not even walk without help. I had hoped to fake it till I make it and at least dance/mingle some as all know that is who I am and what I do. The short version to all this is that new pain was the beginning of what became over two years of hell I am still going through. I have endured too many surgeries to keep count of and complications so great I would need another article to chronicle. We did not dance for an entire year. New Year’s Eve 2018 was when we returned to the floor. I had barely been mobile again and had lost all my skills and stamina. But just to get up and show up was the win. The “gift” this experience gave me? The ability to savor each dance life allows with the feeling that it is heaven on earth whenever we get to be in each other’s arms getting to do what we love! Because dance gets taken from us without warning and never knowing how long or if we will ever get it back is EXACTLY the reason each moment we get to dance is and will be our heaven here on earth! So for all you readers, as this difficult roller coaster of 2020 comes to an end as we prepare our hearts for Christmas, I encourage all of you, sick or not, to reflect on all you have overcome and find your own “gift” and blessings this holiday season!

Theodora and her husband Marcos have created 2 dance pieces in honor of IBD Awareness week on their vlog Pestana Life/La Vida Pestaña to send a message of hope and joy for the Christmas season. To watch, click the links below:

 

• About The Author
Theodora is a 35yr old wife and mother. She was diagnosed with both Crohn’s & colitis in 2007. She got a permanent ileostomy in 2011. She also suffers from: cyclic vomiting syndrome(CVS), a neurogenic bladder, gastroparesis and several other conditions and has had a chest port placed since 2018. She is momma bear to a large blended family with children ranging from kindergarten-high school. They are very much a modern-day Brady bunch or as they like to call themselves “The Pestaña Bunch”! She has a foreign language degree in Spanish and is a certified Spanish-English interpreter. Theodora and her husband met and fell in love as dance partners. Latin dance is their favorite particularly bachata! She has studied many genres of dance and has experience performing, teaching and choreographing. She and her husband run a YouTube channel and FB vlog entitled “Pestana Life/La Vida Pestaña”. They strive to give a real unfiltered look into the life of a dance couple dealing with illness and all its challenges. They share how they never lose their faith or positive attitude as a way to encourage others. They also provide patient awareness & education. They offer all content in both English and Spanish in hopes to widen the demographic of whom they can reach to help as many people as able!
To Disclose or Not? The Challenge of Invisible Illness IBD Awareness Week: Thoughts from GWGs

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  1. Robert Hale, Sr. says:

    You are incredibly brave and an example for all.
    Love,
    Grampa

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