She was vomiting and sleepy. The neurosurgeon suspected hydrocephalus and scheduled emergency surgery for the following day. My daughter, Reese, was 3 months old and had recently recovered from her first brain surgery shortly after birth. Another emergency surgery — my heart could barely stand it.
I remember being terrified that morning. The surgeon walked in with his convenience store breakfast in hand. I couldn’t help but think, “You mean you haven’t already been awake for hours eating blueberries and flax seeds, looking over her scans and preparing yourself for this surgery?” My fear increased.
Although the doctor said the surgery went perfectly, they allowed us back into the recovery room too soon. Reese’s eyes looked crazy, darting all over the room. She could not hold them in one spot for even a second. I frantically asked the nurse what was wrong. She assured me this was a normal part of the recovery process and that her eyes would normalize within hours.
Terrifying moments. Terrifying days. Every parent of a child with serious medical issues knows what I am talking about. The beginning is the hardest — so many unknowns. Every medical term is new. The smell of the hospital is new. The wondering what our lives will be like from this point forward — terrifying and new.
Reese had survived her second brain surgery in just three months. My husband, Mario, and I were still reeling. It was so much to digest in such a short time. In the middle of those three months, we had also received Reese’s diagnosis: Aicardi Syndrome, a rare genetic brain disorder. When I Googled it for the first time, all I remember seeing was “In Loving Memory” and “7 to 14 years.”
We settled into the Pediatric ICU for recovery. The attending physician came in to meet Reese and make his initial assessment. We chatted for a moment and realized that we had a friend in common. He closed the door for privacy and as a respite from the noise of beeping machines and alarms. I remember him saying something like this:
This child will change your life. She will change her siblings’ lives. They will grow up to be special people because they will learn early on that they are not the center of the universe. I see incredible siblings develop alongside children like Reese. She is a gift.
I lost it right there. Tears of the blubbering kind. His words were like a salve to my burdened soul. He was kind. His words were loving. His words were meaningful. It was unexpected. He didn’t have to do that.
Few moments in my life fall into this specific category. My perspective was changed. Because of this doctor’s words, my thinking shifted from how we could help our other children survive Reese’s illness to how Reese’s illness would actually shape them into the best versions of themselves. Because, after all — unselfish, authentic people are my favorite people.
Kind words. Encouragement. Taking time out of a busy schedule. These were all gifts this ICU doctor gave us that day. His kindness changed my perspective. It changed my life.
One of the greatest blessings of our journey with our medically fragile child has been experiencing the kindness of extraordinary people. I’ve become inspired to be more like them. Loving people just for the sake of loving — without receiving anything in return, without a sense of duty, just for the sake of loving — has the power to transform lives. It has transformed mine.
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