Turning My Pain Into Gratitude as I Parent My Son With Complex Needs


Having a son with complex medical needs can be an emotional rollercoaster. His tough times can bring with them depression andfeelings of helplessness, but with the successes comes a quick return to our usual happy selves. I have never cried so hard as I have since becoming a mother, and I have never felt such elation and love.

My son’s medical conditions have led me to experience positive moments of parenthood more deeply than I may have otherwise. When you experience the lowest of lows, then even the moderate highs seem, in comparison, really, incredibly high. A day filled with your child’s vomit, crying, tantrums, pain, and GI bleeding can leave you feeling like you were attacked — exhausted, worn, physically and emotionally beaten. But then, in that raw, vulnerable state, all it takes is a smile, a giggle, a split second of eye contact while reading a book, or a successful feed that doesn’t end in vomit to elicit true joy.

My 2.5-year-old son was in the bath last week, splashing around and singing songs. The experience brought me to tears. Here he was, happily playing in the bath with his g-tube accentuating his tummy rolls, with no awareness that three months ago he was diagnosed with failure to thrive, losing weight rapidly with a BMI percentile of 0.03 percent, and lacking any sign of a belly roll. His smiling eyes during this bath had no memory that after his g-tube surgery, he was so anxious about his new abdominal accessory he could not take off his clothes or take a bath. Last week’s bath was anything but standard or routine — it was a celebration. A milestone. One of my happiest moments in months.

It was this bath that made me wonder: are my happiest moments with my son and my family built upon a foundation of heartache? If I had not experienced the emotional trauma of the last three months after my son’s surgery, would I have been moved to tears over the simple act of splashing in the bath? I do not have other children, so I have no other parenting experiences from which to compare.

It seems possible, and probable, that many of my most pleasurable moments with my son are accentuated, and made more pleasurable, by the pain we have gone through, and continue to experience, together. This realization allows me to feel more grounded and more stable during his tougher times. It creates a genuine sense of gratitude for our challenges as a family. I can trust that even in our most difficult times, we will experience light, humor, laughter and happiness again. Not despite our challenges, but because of them.

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