July 5, 1983. A little boy entered the world. His parents were excited with the highest hopes for his future. But something wasn’t right. Toys surrounded him, but he reached for nothing. 18 months came and went, and he still couldn’t walk. Then one day, his mother found him blue in his crib, and she proceeded to resuscitate her firstborn son.
I was born 4 years later. By this time, it was known that my older brother had a disability of some sort. Was it Down syndrome? This was the first {inaccurate} diagnosis. #1984medicine
For most of my life, we told people Nick had cerebral palsy, a.k.a. CP.
The real diagnosis? Periventricular leukomalacia.
....Yeah... you can see why we stuck with “CP.”
At his prime, Nick had around 200 words. Unfortunately, puberty brought on a new complication: epilepsy. Starting at age 12, Nick lived with daily seizures ranging from minor to grand mal. We tried every legal medication, imported drugs from other countries, surgeries, vagus nerve stimulation, diet changes, etc. etc. Nothing was sufficient.
Nick lived the next 16 years with seizures, and his brain was significantly damaged from the constant assault. This led to a further decline in his function, which had already maxed out somewhere around the level a 6 year old.
What’s the point of all this back story highlighting my brother’s limitations?
Nick’s funeral, almost 8 years ago, showed me something I already knew deep down:
My brother was one of the most beloved humans I’ve ever met.
Yet, Nick could not earn love. He didn’t have the physical ability to DO much for anyone. He needed help with the most basic tasks of eating and toileting.
People loved Nick for who he was. For his heart. For the inherent dignity he possessed simply by being a beloved son, made in the image and likeness of God.
I found my brother choking on a small ball when I was 10. I calmly walked upstairs, told my parents, and watched as the paramedics worked on opening his airway.
I left my sorority house on a moment’s notice when Nick’s vital signs became unstable, my mother was on a trip out of state, and his nurses needed assistance.
For many years, I resented the fact that I was a younger sister who had to take care of her older brother.
After 8 years of visiting his grave and celebrating his earthly birthday on July 5 with all of his favorite things, I now realize he taught me a lesson greater than all of the moments I physically cared for him. He cared for my soul and my heart in a way that only a saint-on-earth could. He showed me that I cannot earn love.
In the Bible, Elisha did twice as many miracles as Elijah. Yet, we mostly think of Elisha as the prophet’s name no one wants to pronounce outloud because it always feels awkward. And we revere Elijah as one of greatest prophets. Why? Because we get a glimpse of Elijah’s heart. We are given an opportunity to know who he is, not just what he does.
I am a self-proclaimed Type A recovering perfectionist. I am organized, motivated, and hospitality is my charism. I can do ALL. THE. THINGS.
It is good when I use these gifts and talents. However, they do not make me lovable. And more importantly, my worth as a beloved daughter does not decrease when I am unable to host, organize, and do things for others.
At Nick’s funeral, I finished his eulogy with this: “You’ll be with me, like a handprint on my heart. And like everyone else in this church right now, because I knew you...I have been changed for good.”
Nick changed those who knew him because his existence challenged a tragic cultural mindset: your worth is directly correlated to your productivity and tangible societal contribution.
Nick’s legacy is not one of a disabled man who ran a marathon or who overcame his limitations to earn a Ph.D. No, his disability only worsened with age as his minimal function declined. Yet his presence touched people to their core.
Because if he can be loved simply for existing in his unique, beautiful way, then so can the rest of us.
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