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Thursday, October 30, 2014

Dear Brittany

Dear Brittany,

I, like most of us who make up the cyber world, have never met you but have nonetheless been invited into a very sacred part of your life journey.  I've read parts of your story several times.  I sometimes watch your videos on repeat, just to catch a glimpse of the haunting wisdom in your eyes.  Most of us have seen the countless articles from supporters and critics alike.  Everyone seems to have their own ideas about which decisions would be the best ones for you and your life.

I've read that some believe you to be selfish in choosing to end your life prematurely, and others applaud your ability to do so.  I'm not here to champion either side.  I'm simply writing to say...Thank You.  Thank you for sharing such an intimate moment in your life.  Thank you for giving a voice to the idea that "life at all costs" isn't as simple as it seems.  And I thank you for unknowingly giving me permission to let go of the guilt I carry for choosing a similar path for my 2 year old son.

Although we didn't know what we were fighting for most of his life, eighteen hours before he died we were given a name for his debilitating disease.  Once that positive result passed through the lips of the neurologist who sat next to me on my makeshift "parent bed" in my son's ICU room, I knew what it meant.  It meant only one thing.  He was terminal.  In fact, he'd technically been terminal since birth.  The gravity of that moment will always weigh heavily on my broken heart.  The deafening silence that surrounded me as realization began to form will forever haunt my thoughts. I'd had a decision to make, and I made it.  Yes, he was going to die, but I chose it.  I had to say the words, "Do Not Resuscitate."  Me.  His mother.  I had to.  How does a mother choose this?  How do you choose the time that your baby dies?  You just do.  And I did.

In one of your videos, you mentioned that if you got to choose what happened after your death you would choose for your mother to be ok.  She won't be, of course, but I can tell you that by choosing this yourself, you're giving her the only gift you've got left.  My son couldn't tell me that he was done fighting.  I fear closing my eyes at night because I'm immediately transported back to that moment, to that awful day that I gave the go ahead to disconnect his life support.  Was it too soon?  Did he have more fight left?  What if I'd made a mistake?  So you see, hearing you say that you would choose to leave on your own terms, before life became unbearable is salve on a wound that I never thought would heal.  Your mother will be spared those last few days of seeing her child suffer as a shell of her former self.  She'll be spared that question of whether or not the time has come.  Some claim that you are selfish for your choice to pass away on your own terms, but I can't think of a more selfless act.  You are leaving them with happy memories of you, of choices that you made yourself, and with the peace of mind that you've fulfilled your wishes.

The loss of my son was soul-shredding.  I spend every breath trying to find reasons to pick up the pieces and put them back together.  Some pieces, I'd assumed, would be gone forever.  You've proven me wrong by sharing your story and lifting a giant burden from my shoulders.  The ache in my chest is lighter because of your honesty.  I thank you for that immeasurable gift.  My wish for you is for peace in every decision you make, and enough love to carry you through the process.

Monday, October 6, 2014

"Fall"

It used to mean warm sweaters and bonfires.  It used to mean watching leaves change and smiling at the inevitable giddiness of your kids as holidays approach.  It used be "complaining" about the end of summer, while being blissfully oblivious to the fact that you're doing that while curling on the couch with hot chocolate and watching football with your family on a lazy Sunday. It doesn't mean any of that anymore.  All of that was stolen.

It used to be discussing holiday traditions with other school parents.  What does your family do for Halloween?  That answer used to be so simple.  "Oh, not much I guess.  We go to my sister's house and my mom makes every kind of soup imaginable.  The kids trick or treat around my old hometown.  Of course, there is always that huge gamble of whether or not the 4 costumes I picked out will be warm enough!  Fingers crossed!"  I didn't think it was much at the time, because I didn't know it was everything.  And not just the act, or the gathering, but the desire to DO those things was ever-present yet always unnoticed.

What does the season of fall mean now?  It means haunting nightmares.  It means children talking about costumes, but only 3 of them have decided what they'll be this year.  There used to be four.  I'm programmed for 4.  I don't know how to do three.  And Halloween means working particularly hard to put on a fake smile for my children as they run from door to door.  No part of me wants anything to do with Halloween.  But, even as I dread that day, I know that the burning pain I will experience then will be a papercut compared to the days to come.

Soon I'll have to listen to excited talk about Thanksgiving and Christmas.  I'll hear songs that used to bring immediate happiness and anticipation, and now only bring anger and hurt.  I used to love Christmas.  Who doesn't when they've never been burned?  It can be such a magical time of giving and love for others.  But it also has the power to bring with it, the pain of an entire year.  Now, Christmas means going through the motions of "family traditions" that mean nothing to me.  How could they?  My family isn't here. And while that statement inevitably brings up the "you have three children and a husband here" sentiment, it doesn't change the fact that what I say is true.

Having these feelings, and expressing them openly does not mean that I'm not grateful for the people in my life. I take less for granted than I ever would have, had I not met and loved my son.  But, I've heard enough of the stories of putting on a brave face and shining in the face of tragedy.  The truth is that sometimes "shining" means simply getting out of bed on these days.  It means sitting in a room of people who are smiling and laughing while you hide behind a face of stone.  For me, any expectation that I would "suck it up" to enjoy these days is ludicrous.  It's the same as walking through a graveyard and asking its occupants to get up and participate.  I am often confused by the idea that anyone could think that I'm able to function beyond basic movement.  The truth is, I cannot walk and yet, my legs take me from one side of the room to the other.  I cannot breathe, yet my chest rises and falls without fail.  None of these functions are voluntary at this point.  They just happen.  And that's how my "holidays" will pass.  They will just happen.

I assume that fall will take on new meanings for myself and my family as the years go on, but I also know for sure that they'll always bring with them a pain that I'll never adequately describe.  I won't see what silly costume he picks out, or work tirelessly to come up with a special candy for him to eat.  I won't have 6 full chairs around my Thanksgiving table, and I'll never see his eyes light up when it's time to open the presents.  He won't be here in the way that I want him to, and I know that.  I will likely never know the "fear" of having to work through the holidays.  I'll never worry that I could possibly miss out on all the festivities that this time of year inevitably brings.  No, that won't be me.  I won't be afraid to miss it.  My fear lies in showing up.