Best friends and family are the greatest thing in the world, right?
Right… until you are no longer the fun one.
Before VHL, I was the supporter, the entertainer, the party girl, the loud laugh, the crazy stories, the spontaneous plans. An evening with me guaranteed laughter and fun. I had a large circle of friends and people loved being around me.
Then my son started having strange night sweats.
Days turned into weeks. Weeks turned into months. Nobody could figure out what was wrong.
And suddenly, I was no longer fun.
There were no parties, no laughter, no carefree version of me. I was consumed with fear, asking the same question over and over again: What is wrong with my son and why can nobody figure it out?
From the dozens of friends around me, only a handful stayed.
They listened to the same fears on repeat for months. “I am worried.” “Something is wrong.” “Why can’t doctors figure this out?” They did not always have answers, but they listened.
Others downplayed it. Some accused me of overreacting. Those were the first to disappear, because there was no fun anymore.
And then we found out Zane had a tumor.
He stayed in the hospital for an entire month. That was when I truly discovered who my real friends were.
Some so called “best friends” visited once.
Others I considered simple acquaintances showed up every other day without fail.
Friends came to play chess with Zane for hours just to distract him. Some brought him snacks. Some came simply to sit with him so he would not feel alone.
My brother spent his lunch break every single day at the hospital eating with him.
And our beloved house helper slept under his feet at night so that if he moved even slightly in pain, she would feel it instantly and wake up. We created shifts around him. I stayed with him through the nights. She would go home for a few hours, then come back in the morning carrying his favorite meal, rice, meat, and yogurt.
Meanwhile, many of the people I thought would always be there disappeared in silence.
That part hurts deeply.
Because on top of losing the life you knew before diagnosis, on top of watching your world turn upside down, you also lose people you thought were your forever friends.
But the handful who stayed, stayed fully.
And now I know those are the people who will show up in both joy and devastation.
Disease has a brutal way of revealing who truly cares and who only loved the easy version of you.
And to be fair, I know it is not always easy to be around someone carrying this kind of weight. It is heavy. Sometimes people do not know what to say.
But you do not always need words.
You can simply sit beside me.
You can listen.
You can hold me in my pain.
