Julianna was the most stoic person I’ve known. When she cried, you knew that something really hurt, and you wanted to fix it immediately.
The tears, you see, came from a little girl who had endured a lifetime full of tear-worthy events but shed very few. She simply did not have the time, not when there were stories to tell and fashion advice to dispense and people to love.
One thing that upset her greatly was when she was not understood.
As her CMT got stronger, her physical voice got weaker. Her voice got softer, and it had to fight against the noise of the BiPAP – which kept getting louder because her chest muscles needed more and more help moving air.
Through all this, her need to be understood never changed. She wanted us to understand her stories, agree with her opinions, and appreciate the nuances of language. She cherished words and insisted on proper enunciation (in one of her stories, there was an Ella, an Ellie and an EEliza. Different people, different names – and they had to be pronounced correctly.)
We did our best to understand her words and intent. When we failed, tears would spring from her beautiful eyes and she would shake her head in frustration. This is how important it was for her to be understood.
I share Julianna’s love for words, and I communicate best through written word. I can’t paint, sing, dance or emote. But I can put my feelings into words, and I need to put them into words – just like Julianna.
And now, words fail me.
I don’t know how many more ways I can say I miss her, or that it hurts, and that nothing feels the same.
I’ve used all the words I know, and they’ve expressed just a tiny portion of what I feel — and only the smallest, most palatable bit.
These days, I have no words – so I knit.
I learned via YouTube and I make a lot of mistakes – but life is far from perfect, and my knitting can match.
I knit with bright colors and soft yarn. I want her to approve of everything I make.
I knit to fill the quietness that is our “new normal.”
I knit so that I don’t have to think, and I knit to help me think.
I knit because life didn’t stop when my world did, and I resent that sometimes. Knitting slows it down.
I knit because I’m starting to forget things she said and how she was. I’m getting used to this life without feeding tubes and syringes – and I don’t like it. I don’t like the fact that I seem to be tolerating it so well.
If I knit until my hands are on fire, I feel something – and sometimes that’s better than nothing, even if it hurts.
I knit because I miss her so much, but I seem to have used all my tears (they went away with my words, I think) and I can’t just go back to the person I was before she was here. Something has to be different — because she changed me fundamentally.
So in this new life, I knit.
(But I still need my words. I miss those too.)