My youngest daughter energetically climbs all over me as I struggle to keep her curious little baby hands away from IV lines. My oldest daughter stares at me, wearing a hesitant expression. She worries she might hurt me if she comes any closer. Meanwhile, my middle daughter obliviously scans my side table for snacks.
The visit does not last long enough to ease the ache my heart feels from being separated from them for so many days. At the same time, their energetic presence in my tiny hospital room completely exhausts me. I let out a sigh of relief, guilt, and sadness as they follow my husband and mother-in-law out of my room. Relief they are gone, guilt because I feel relieved, and sadness because they are no longer with me.
Alone and feeling utterly defeated, I contemplate how Crohn’s disease has robbed me of my peace of mind, my health, and how it now robs me of time with my kids.
Recalling my very first hospital stay three years ago, before I was diagnosed with Crohn’s Disease, I remember feeling so scared that I might have had appendicitis. I was certain that an appendectomy would have been the worst thing that could have happened to me at that time. Little did I know.
Appendicitis would have been remedied by just one procedure. In contrast, autoimmune illness has made me feel as though my own body has betrayed me. It has taken more from me physically, mentally, and spiritually than I could say. I did not realize just how much I had to give, until I look back on the whole journey. I underwent three surgical procedures in 2017 (three years after my diagnosis) to remove damage done to my body, by my body. I hadn’t even turned 30 years old, and my appendix, though healthy, wound up being collateral damage in the process anyway.
I was still nursing my baby while having my veins continually pumped full of painkillers and antibiotics, until my treatment became so physically demanding, I was forced to stop earlier than I’d have liked to. I was supposed to be homeschooling my other two daughters, but my recoveries were far from quick, and we all became a little too familiar with Netflix. The rhythms of our home life abruptly shifted from stable to unpredictable as I vacillated between strong enough to make it through a day, and being so sick I was confined to my bed.
Before my third and final surgery, I had two intense procedures done (hence the hospitalizations) in an attempt to remedy an issue without needing a portion of my small intestine removed, which was a last resort. As part of the recovery from this procedure, I had to wear a surgical drain fixed to my abdomen that looked like a large, clear, rubber grenade hanging at my side. I was mortified by the contraption, and it was immensely painful. I hardly ever left my home because I was utterly embarrassed by it being semi-permanently fixed in my belly, held in place by thick black stitches. If I absolutely HAD to get out, I wore layers of clothing in an attempt to conceal this infection-collecting bulb that was supposed to help my body heal. At any cost, I did not want to be stared at by strangers, even if it meant that the kids and I stayed cooped up in our home. This procedure failed and I underwent the second one and was fitted with yet another surgical drain that was like a giant see-through plastic bag about six times the size of the rubber grenade. Great.
That was it for me. I couldn’t do it anymore. I had spent the past two months allowing these stupid complications from a disease I had no control over dictate how I lived my daily life and how I mothered my children. I allowed it to determine what we did or didn’t do when I had a choice because I was so embarrassed and angry. I knew a third and (hopefully) final surgery awaited me in the next month, and that recovery would take another six weeks of time away from me spending quality time with and taking care of my children.
I had four weeks to prepare for a big surgery. At this point I was stable, but emotionally depleted. It was the very end of spring, and I was not able to hide any large medical apparatus beneath layers of clothing. My first Sunday back in church after a number of missed weeks I released everything: my attempt to control the situation, my vanity and embarrassment, my disappointment and anger, and also my self-berating. I stood in the first row of the sanctuary during worship, sobbing with a giant, unconcealable, surgical drain hanging from my right hip. The words from my mouth were sincere: “So let go my soul, and trust in Him, the waves and wind still know His name. Through it all, my eyes are on you. Through it all it is well. It is well with me.”
From that morning on, I refused to let my unfavorable life circumstance get in the way of my life as a whole and my motherhood, if I could help it. We spent the following four weeks at the library, visiting parks, running errands, and visiting with friends. My kids and I even made new friends while out and about despite my unsightly, but necessary, medical accessory. I allowed people to come see me. I allowed them in to bring meals and surround me with prayer. I asked for help with babysitting. It was when I acknowledged that I couldn’t hold it all together that things suddenly came together. In a work of grace, this challenging situation worked out for our good right in the middle of the mess. I stopped hiding. I stopped keeping my health a secret. I stopped shutting myself and my girls inside in order to save face. I released my control over a situation where I had none to begin with.
Nearly one year later, I find myself living the same lessons I learned then. I once believed that resilience was only found in persisting against unfavorable circumstances. I’ve been humbled to learn that strength is also present when I relinquish my safety net of control.
Some days in life are like summertime: “the livin’ is easy”. Other days are a full-on downpour and you have two choices:
You either struggle to keep everyone beneath your little umbrella, and end up frustrated because your feet still get soaked.
You abandon your umbrella (whatever is your perceived protection) and embrace the rain. You might even dare to dance in it, as you discover grace that sustains and brings beauty from pain.
(photo by Hill Smiley Photography)
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Mary Kate Brown is a homeschooling stay-at-home mama living in the suburbs of Chicago. She is married to her high-school sweetheart Brian, and together they have three daughters. She decorates cakes, is a hobby gardener, and enjoys reading. She is the author and creator of the “Start Your Homeschool” Guided Workbook, and she writes about faith and motherhood at www.choosinggraceblog.com. Find her on Facebook and Instagram.