They Played with Dolls

It all started with a simple statement from her. Sort of like a command as most of hers are. One that, honestly I would have normally brushed off, right alongside 65 million other comments that pass through the spaces between her mouth and my ears.

I’ll let you in on a little secret. I can’t possibly hear all she says in a day. Oh, don’t get me wrong! At the decibel in which she speaks even I, a very hard of hearing individual, can hear it. Rather, I cannot possibly digest all that is being said.

And so it was this particular day when she simultaneously sing-songs her statement/command while playing with her bucket of mismatched dolls and shoes, “I want a friend with Cystinosis like me. I want her to be a girl, too! My age! That would be great!!”

I will admit that while I heard it, I was also trying to process why she would have even thought of this in the first place. She does, in fact have a sibling with the same condition so surely she doesn’t feel alone, right? Why would she need a girl her age to speak to on this matter? And what in the world does she even need to speak about in the first place?

I continued on with my day, most likely comprising of tidying up the plethora of bits and pieces that should accompany the many dolls whose homes are almost anywhere except on my floors and couch seats. Barbie shoes and purses hurt just as equally as Lego pieces, friends.

But if you know Hannah in the least, well then you know just how convincing and persistent she can be.  “Fancy honey” anyone??

She didn’t let the notion slide and she continued with her, very specific requests.

So, I indeed finally heard her with the kind of resolve that cries out for action.

Enter, Emma from sunny California.

These two girls couldn’t hardly be further apart in the States, yet more alike than peas and carrots.

Emma’s mother so graciously allowed Emma to video chat with Hannah for the first time this week.

There was none of the typical introductions that kids often need to begin a new friendship.

There was however, this silent, understood sense of unity, a sense of commonality, and what we, as parents affectionately call, “Cystahood.”

“Cysta” as defined by Dawn’s dictionary is n. female. 1-One who is a caretaker to an individual living with Cystinosis. 2- individual living with Cystinosis themselves. 3- instant lifelong friend who instantly understands

In about 3.9 seconds, they were chatting it up like you’d expect from two old friends who haven’t seen or heard from one another since forever and a day. Like a scene where the two main characters are sitting on an old whitewashed front porch in their well worn wooden rockers. Swaying back and forth without a care. Smiling and laughing easily. Reminiscing and telling new tales, too.

These two modern girls from opposite coasts, video chatted and played with dolls and probably had all the same stories their grand parents had…or something like that.

And when the conversation had ended, Hannah hugged me and thanked me entirely too many times especially considering how (regretfully) dismissive I was tempted to be.

She continually said, “Thank you for getting me a Cystinosis friend who is a girl like me.”

And it hit me. Probably after she had thanked me for the 10th time… she seemed far more grateful than a trip to Disney, more grateful than the lavish birthday parties we plan, more grateful than dare I say…. even more so than a trip to Stargetbucks??

She instantly felt understood without having to say a word.

She knew instinctively that sweet Emma “got it” and that getting meds round the clock can be cumbersome, that taking some meds make you nauseous, that sometimes your body and eyes hurt without warning or waning… that sometimes you feel different than the rest of your family and certainly different than all your friends.

There were no deep insightful conversations

to be had between the two. My first inclination was indeed correct. Kind of.

Although she had nothing in particular to “get off her chest” she intuitively longed to…

Not to have to say or explain anything at all.

And so, they played with dolls.