Why We Write Our Stories

Staring at a pile of washcloths I had just folded completely frustrated me.  I can’t seem to fold two washcloths the same way twice!  Every cloth is facing a different direction and slightly askew in the tower, like a two year olds’ stack of blocks.  How many years have I been folding these silly things?  Don’t ask…really.  I just don’t understand why it’s so hard for me to be “neat as a pin” like others I know. Is it a genetic disinclination towards neatness?  I think my parents might agree with that one!  Though the genes would be from somewhere DEEP in the gene pool, of course!

The vision of the washcloths borders on the domestic mundane, but for some reason that picture stayed with me all day and made me think…

All the washcloths are either light green or ivory.  And even though there are only two different colors and types, bought on two separate occasions, each washcloth is now unique: no two are exactly alike any more.  Repeated washings, oopsy bleachings and ground in kid dirt have rendered them somewhat tattered and uniquely different from one another.

You can see where I am going, can’t you?  In this journey with Noonans or RASopathies we all started at the same place: with a child and a diagnosis: words on paper that meant nothing to us at the beginning of our journeys.  But after a brief amount of time our vocabularies took on what might be akin to a new language and we can now look at each other’s diagnoses and mile-long terms and “know” and understand.  Some of us can roll, “thrombocytopenia” off the tip of our tongues like its last night’s dinner and today’s leftovers.  Others can talk about vents, buttons, and tubes like it’s our first graders art project.  But every day terms, they are not.  These terms are our lives and our kids’ lives.  And in turn our kids’ children’s lives.  These terms are here to stay.

But before we begin to think that each of us is the same, we are not.  Some of us are like that single washcloth in the stack that accidentally got bleached and is now an unidentifiable color on the color wheel.  Others are like the ivory colored washcloth that is now a pretty, but faint pink.  Our journeys, our ways we walk through the difficult days and our methods of rejoicing in the victories are all so different.  We look similar on paper, but when all lined up we can’t even stand in a straight line, or stack in a perfectly aligned tower.  We are all misaligned because we are different people, with different cultures, and different reactions and different battles. 

This is why we write our stories. We write because we do have a common foundation: RASopathies.  But the truth is our differences are actually a strength.   Our experiences cannot be exactly the same, nor do we want them to be.   The richness of friendship is community, and the ability to bounce that proverbial ball of conversation back and forth, back and forth.  To learn from each other and be able to take a deep breath and say, “I don’t know exactly what that’s like, but I do understand the emotions that we go through when our child is hospitalized…again.”  “I know how tiring it is to always be on the alert for this or that.”  We will not “fit in” perfectly with every other mom or dad or child affected by RASapothies, and we cannot expect to any more than we can expect to have every neighbor as a best friend…and that is Okay.  But we need to know that others have been on a similar journey and haven’t succumbed to hopelessness, but are learning, and finding joy in every day regardless of how hard their journey’s are. We need each other.