My friend was moving from a house down the street from me to a house down the street from me in the other direction a few weekends ago. I had company from out of town and wasn't able to be there all day. But when I got a chance, I stopped by to lend a hand and see how everyone was holding up. The day was winding down and nearly everything was done. I walked upstairs to meet my friend who was in her room with her five-year-old daughter (my Goddaughter). She looked sort of funny, my Goddaughter, and I said, “What’s going on, kid?” She didn't answer me, that’s to be expected, she has a genetic disorder and speech like we’re used to isn't her thing just yet. But she communicates, and something didn't seem right. Her mom saw it too said, “She’s going to have a seizure, and I’m going to need help, and a phone.”
Straight up. I can do that. Seizures are part of the package of her disorder, and this was her third, but my first to witness. That is some horribly scary stuff. She couldn't breath or focus, she didn't respond to talking and then she turned very blue. I thought she was dying. I wanted to cry and panic, but I’m unfortunately old enough to know how unhelpful that is in a situation like this. The ambulance came, checked her out, she woke up, all was well. I was very shaken by the experience, really. It was the most terrifying thing I've seen. When I said how scary it was to witness, she told me that one wasn't even scary compared to the others.
There was a moment when she was blue that I saw something in this little girl I hadn’t seen fully before. At the precise moment when she went from impossibly blue to slightly less blue, the moment I knew she was not dying, I looked at her little face, eyes closed, face slackened, arms curled over herself, and saw her struggle. I saw the path she is on and the surrender she meets it with. My love for her expanded, and it made an opening wide enough for me to dive through.
Now, I’ve loved this kid for five years, and her struggle in life is not new to me. I have watched her try harder than anyone I know to do things that come easily to others, and I have seen her change and grow alongside my own daughters. I haven’t been skimping on my love for her. It was seeing her, truly, in her moment of vulnerability and not flinching from the sight that deepened my love.
It seems pretty straightforward, especially with a kid. Someone is struggling, someone is suffering, someone is in pain, you help. But so often we don’t know how to hold the struggle of others without it getting tangled up in our own. We look away from the old and dying, we draw our hands back from the sick and unstable, and we ignore, uncomfortably, those who are intellectually disabled because it’s scary and uncertain. It reminds us of the uncertain and vulnerable things in us. It reminds us we're not in control.
Sometimes there is a part of me that refuses to see the pain in someone else because it is so close to mine. There are times I am unable to find the compassion needed for someone because I haven’t been giving myself the same needed compassion. Sometimes I look away from people that make me uncomfortable, because they make me uncomfortable and I don’t know why, and apparently don’t want to find out. We’re scaredy-humans and it is a natural reaction.
But this time, with this girl I already know and love, I wasn't afraid or uncomfortable. I wasn't distracted by panic and fear for what would happen to her, or my friend, or what would happen to me or my kids, or what I would do if this were happening to my kids (well, because it sort-of was). Basically I wasn't afraid of my own vulnerabilities, so I had the room to see this girl, my girl. My nearly-daughter. I had the ability to see her without the frosted lens of my own fears. She was crystal clear and so beautiful and vulnerable in her life story. I don’t mean in her helplessness either. Because that’s not what was happening. By all accounts she seemed helpless: in the midst of a seizure, a little girl, with limited ability to communicate her needs or fears. But I think what I saw in her small face when I saw her was a surrender to what is, that this kid already accepts and on some level understands in a way I may never experience. I felt an incredible admiration for the path she walks, and she will most likely never be fully cognizant of that path, or the lives she’s impacted. She is just living with determination, and joy. And I am glad to be here with her.