Ronan Christopher Louis: 2010 - 2013

"I began to understand that the act of remembering is actually a kind of retroactive hope. None of us will usher our children into bright futures, but we can imagine them as they were; we can decorate Christmas trees for them, get out the photo albums and cry for them, let ourselves be broken on behalf of another person. And survive it. In this land of dying children, to allow heartbreak is to allow life." ~Emily Rapp~

Ronan Louis, just shy of three years old, passed away on February 15, 2013, at around 3:30 in the morning in Santa Fe, New Mexico.  He went peacefully, his mother, Emily Rapp, said in her Facebook announcement, surrounded by family and friends, and undoubtedly by his many beloved stuffed animals, the unrelenting guardians and protectors of his brief life.

It was not an unexpected passing.  Shortly before his first birthday, Ronan was diagnosed with Tay-Sachs Disease.  The news was crushing.  For those of us who have met Emily Rapp, it has always seemed incomprehensible that there was something in the world that Emily could not overcome through sheer force of will (see her autobiography on growing up physically challenged, Poster Child, for a closer look at Emily's sheer force of will).  But this was too big for even Emily, with her husband, Rick, and little Ronan, to conquer. Tay-Sachs is a pretty insidious genetic illness, and it has taken its toll.  For all parents, this is a solitary, brutal process that those of us who have never faced it could never begin to imagine.  

But Emily is a writer, so she did what most writers do when things start to implode, and some sparse version of sanity is required.  She wrote.  She started with the blog, created shortly after Ronan's diagnosis, Little Seal (which is what Ronan means in Irish Gaelic). In the end, her grief was too big to fit on a blog, and Emily wrote an entire book, The Still Point of A Turning World, due out on March 7, 2013.  

In a real sense, for those of us who never met Ronan in person, but who experienced him through Emily's words alone, he continues to live.  But for Emily now, I'm sure that no words will ever replace the smell of his hair, or the flush of his skin after a bath. The Ronan... the real one...the one she birthed and bathed and held in her arms... has gone now. He came, he stayed for a bit, and then he left. 

But, oh, the lives he touched his brief time here.  Ronan was the pebble who broke the surface of our calm little pool, and those who most loved him -- his parents, his grandparents, aunts, uncles, cousins, the closest of their friends who were like family -- moved out from him, in concentric circles, touching the next row of us, and the next and the next, and we all moved outward, in our rings, each touching the next circle outward, on our way to the shore. 

But Ronan will always be at the center of it -- the pebble that broke our calm for a bit, until he had to go. 

Peace, little seal. Peace and light, wherever you may need it.

Ronan
(photographer: Catherine Davis)

  
EDITOR'S NOTE: For those who know Emily, she has asked that, in lieu of flowers, contributions may be made to the National Tay-Sachs and Allied Diseases Association.

Reflections on Love and Hostage-Taking. (But Mostly Love)

It’s February.  And where February is, can Valentine’s Day be far behind?  I should say not. 

Maybe it’s because it’s February, or maybe it’s just the beginning of a new year.  I’ve been thinking much lately of love and partnering and loneliness and aloneness.  The latter two are not necessarily the same thing.  It is possible to fly solo without feeling lonely.  I know, because I’ve done it a fair amount of my life. 

I’ve been single more than I’ve been partnered, and it has become an easy place for me to live.  When I was young, I used to dream of having “someone”… someone who loved me, who told me daily how special I was, how needed I was, how vital I was to their happiness and joy.  And when I was young, I found any number of “someones” who were more than willing to tell me those things – not necessarily because they were true, but because I needed to hear them.  In time, though, you find that not only do most “someones” not need you to be special or to provide them with their happiness and joy, you’d prefer they were complete enough on their own to not require this of you. 

It’s a terrible burden, completing someone else. Especially if you’re not quite complete your own damn self. Solitude offers a relief from the heavy lifting of a relationship. 

The biggest relief of being on one’s own is that you’re not constantly disappointing someone. My relationships start as most people's do -- full of hope and promise and titillating excitement and anticipation.  My quirky humor is appreciated and deemed "unique" and "bold" and "intelligent".  My strengths are overemphasized (as are his), my weaknesses overlooked (as are his).

I suppose reality becomes an interloper in every idealized relationship.  But reality seems to hit mine harder, with more intense results.  I have reported in the past that I ended my longest relationship with someone because I was being actively “unloved”.  The unloving wasn’t accidental, or a by-product of interest or love lost.  It was calculated, and a way of trying to control my behavior.  This is, I believe, where my intense resistance to being controlled and manipulated comes from.  Of all the weapons a person can use in their emotional arsenal against a partner, I find the threat to withdraw love the most insidious and least forgiveable.

“Do it my way, or I will treat you every day as if I do not love you until you do it my way.”

This is the most frightening thing about agreeing to love someone again.  It’s that they can use your own heart as a hostage against you, holding it at knifepoint until you agree to their terms.  I think there should be a law.  Hell, there probably is one somewhere.  In Canada, or Scandanavia, where such goings-on are probably frowned upon.  But here, where I live, it’s an every day occurrence, so commonplace, most people don’t even see it when it’s happening to them.

It makes me shy of love, of intimacy.  Love used to be something I looked at as a safe haven.  If you loved someone, you were their soft place, their sanctuary.  You were the place they could come to feel tended and cared for and looked after.  Not in a mothering sense, but in the sense that you became someone they could go to and be themselves, without fear of judgement or reprisal. 

Now I see love as some place sharp and dark and a little scary.  I used to close my eyes and imagine love to be a place of light and hope. Now I close my eyes and see it as a place of risk of devastation.  I’ve been devastated. And I’ve come back from it. The question is, can I be devastated again and still recover?  How many more devastations do I have it in me to survive?

I have no idea. 

I do believe I am a difficult person to love.  I think my own family – the birth one – struggles regularly with loving me. I mean, if people you grew up with and/or gave birth to can't love you easily, then you have to be that difficult to love. I’m not sure why this is.  Maybe it’s because I’m guarded and withdrawn.  Maybe it’s just because I’m kind of a selfish bitch.  It’s not intentional. And these unlovable qualities about me I’m not sure I can change. 

So maybe, in the end, alone is better, if for no other reason than I can limit my exposure to the disappointment of others and limit their exposure to the qualities in me that make me so hard to love.  At least until I find out how to fix what remains so deeply broken inside of me.

Maybe the trick to love is finding someone who finds my unlovable qualities just the very thing he’s been looking for in a woman.  I estimate there are probably 47 men ever born in the entire history of the planet who find my innately annoying characteristics attractive.  With any luck, one of them… just one… is alive on the planet right now. Preferably somewhere in this hemisphere.

Hope springs eternal.