There he sat, in all his imperfect glory! His lips were blue and his fingers were clubbed. He had thick-rimmed eyeglasses that often fought to stay on the bridge of his delicate nose. He would use his frail fingers to gently nudge these glasses back into place. He was thin, with ribs visibly poking out of his skin. He had a nasal cannula in his nostrils. Despite the oxygen supplementation, the pulse oximeter reading did not budge over the high-70% range. Though this was a grossly abnormal oxygen range for most humans, his body was content at this level.
The reason for many of these visible “imperfections” was that his heart was (literally) broken. He was diagnosed with hypoplastic left heart syndrome (HLHS) shortly after his birth. He spent most of his life being in-and-out of the hospital. His condition had progressed, and he was now teetering between more surgeries and an eventual need for a heart transplant. Despite all of this, he was spunky and a daredevil. He had dreams and aspirations that surpassed his chronological age and medical condition.
I had the privilege of taking care of him for two weeks. The one part of his personality that I admired the most was his boldness. One particular incidence illustrated this quality of his the best. He may have been sick and physically weak, but this did not stop him from being the biggest flirt. I once caught him facetiming with a young girl. He had a big smile on his face, and his eyes were lit up with excitement and joy while he talked to her. After he hung up, I asked him who this was, to which he responded, “she’s sort of my girlfriend as of a few weeks ago.” Their love story was one that should be in the movies. He had known her since the “second grade, which is a long time” according to him. He was now in the third grade and had finally festered up the courage to ask her to be his girlfriend. He made this bold move by kicking the back of her seat multiple times, until she finally turned towards him. Once she did, he popped the question, and naturally, she said yes. A week into his hospital admission, she made him a handmade card with a “love letter” in it. The letter ended with, “You have the best heart. It’s broken, but it’s the best!” Then, she drew a picture of a broken heart that was patched up with stitches and bandages. He may have had a broken heart, but to her it was flawless. In fact, he was perfectly imperfect to her!
I learned an important lesson from this child. A lot of us often struggle with accepting and showing our flaws. We constantly strive for perfection. We study and work hard to achieve this often unrealistic status. Though actively striving for perfection can be beneficial in achieving tangible success, it can often hinder us from being bold enough to exhibit the quirky flaws (after all, it’s a culmination of these flaws that makes us who we are). This child reminded me how beautiful it is to appreciate, show, and admire our imperfections and to not apologize for them.
“‘You don’t love someone because they’re perfect,’ she says. ‘You love them in spite of the fact that they’re not.’ I don’t know how to respond to that; it’s like being told after thirty-five years that the sky, which I’ve seen as a brilliant blue, is in fact rather green.”
–My Sister’s Keeper by Jodi Picoult
Quick Facts about Hypoplastic Left Heart Syndrome:
- Congenital (present at birth) heart defect
- the heart does not develop properly and the left side of the heart is underdeveloped
- 1000-2000 kids are born with this defect per year
- Treatment includes medications, surgeries, and sometimes heart transplantation
Check out the CDC website for more information.