While training to be a counselor, a friend once said he learned never to assume you know what emotion someone has about an event. “Maybe a woman just lost her long time husband and you think, ‘Gosh, I’m sorry, that must have been tough.’ But you never know. Maybe he was a violent alcoholic and so her reaction was actually, ‘Thank God he’s gone. I’m finally free!'”
So when you watch this video of Eloise, do you feel pity? Excitement? Or maybe even anger and frustration?
Last week, when I was with Eloise all day, I watched this scene happen in real time. The day it happened wasn’t particularly good nor bad, although her months of refusing to eat and struggle was still weighing on me.
Just the day before, I’d been talking with one of Eloise’s PTs (physiotherapist). This PT asked if Brian and I had any hopes or goals for Eloise’s development. I mentioned weight bearing on her arms, which hasn’t improved much over time. So, at that physiotherapy session, they tried together to make that happen. But every time Eloise’s PT would try something, even very small, to help her use her hands or put weight on her arms, Eloise would break down into hysterical crying. To be honest, as I watched I felt helpless to do anything. And hopeless that her arm weight bearing would be getting better any time soon. I mean, after all, if Eloise’s PT can’t get her to use her arms, what hope did we have in helping her?
So, the next day when this scene happened, I cried.
- I saw her little arms, so weak — her arms unable to do what she wanted them to do.
- I saw her little mind wanting to crawl — but her body unable to make it happen because the neurons just aren’t firing.
- I saw her little self so helpless — dependent upon Brian and I to do anything she wants to do.
- I saw her struggling for years and years — because if she can’t bear weight on her arms, she won’t crawl, she won’t sit independently, she won’t stand on her own, and she won’t walk.
Thinking of all of these sad things, I pitied her. And so I cried.
This was unusual for me.
Later, I showed it to Brian without commentary.
His face lit up as he broke out into a smile. His heart started racing as he got visibly excited. He quickly grabbed Eloise from the floor, hugged her tight, and started exclaiming, “WOW!!! Baby girl! Look at you!! You were trying to crawl!!!! Good job!!!!”
I paused, stared at him, and blinked.
“I’ve never ever ever seen her do something like that. This is really super encouraging. She’s developing!”
I showed the same video to Eloise’s PT who was here yesterday. Her reaction was similar to Brian’s.
Neither had any pity, just excitement that Eloise, despite obstacle after obstacle, is moving forward.
Eloise is missing 19 million lines of DNA, has almost no brain white matter, is carrying way more fluid in her brain than many doctors have ever seen in their lifetimes, is missing the gene associated with one of the most severe epilepsies known to modern man, is partially blind, has some sort of neuro muscular disorder, and has been in pain for months and months as she grows teeth very very slowly.
The fact that she’s giggling, laughing, “talking”, moving, wiggling, grabbing for things, seeing things, exploring the world and still developing?
That’s incredible.
She has overcome so many obstacles. This kid is resilient.
Eloise knows what she wants and, even if she doesn’t have a way to get there, she keeps trying. Over and over and over again every day, she tries to stand when she can’t even sit. She tries to grab for things when she can’t even move to go touch them. And, now, she tries to crawl when she can’t even use her arms.
That’s something to celebrate, not pity.
Eloise IS a fighter.
That’s when it hit me again.
Often, our current circumstances color our interpretation of an event.
Should I pity Eloise because she will never have the ability to do the stuff her neurotypical peers will do?Or maybe I should be frustrated with her because she’s lazy and not trying hard enough — because she’s manipulating me so she can get her own way? Or, instead, should I celebrate her because, despite setback after setback, she keeps fighting these uphill battles to enjoy life on her terms?
I think, as often as I am able, I’m gonna try to celebrate this kid and not pity her. She’s enjoying life, working hard, and, gosh darn it, I don’t want to lose another day to pity — whether it’s for her, for myself, or for our family.
Maybe you can join us.
Because, really, especially if you look at what she’s up against, she really is amazing.
Still learning how to live life.
All our love,
Mallory, Brian, and Eloise
Eloise The Tiny Fighter 
You’re an incredible writer, really! Thank you so much for sharing your life and how your beautiful baby daughter is doing.
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