Year One

If you would have told me a year ago that I would be here today, I wouldn't have believed you.
Because a year ago today my world was shaken and I found it just a little bit harder to breathe. I was just a little bit broken.
Because there's no hiding from the truth when it looms before you on a prescription pad, glaring evidence of everything that went wrong.
I fought to get here. I was broken and, at one time or another, during those very dark first few months, I thought my situation was hopeless. I got angry, I cried and screamed and lost it and some days I didn't want to get out of bed.
There was overwhelming guilt, and the frustration and agony that comes with not understanding what is going on inside of your own body and being responsible for your own downfall. Those first few months were agonizing. I spent days and weeks and months trying to define for myself what this new life would look like, because I didn't know how to live anymore. I had to find, and speak, my truth, and I had to learn how to be authentic in a world where everyone was telling me who to be and how to act and what I needed to do.
A year ago today I got the news that changed my life and my world caved in and I fell into the depths of it for a while. Some days I didn't want to live in the dark abyss my life had become.
5 long, trying, exhausting months later, in a church pew, I finally broke. I was buried in an avalanche of guilt and fear and exhaustion and sickness and pain and grief and I basically told God that if He wanted me to live, He better do something because I wasn't going to live like this.
And, obviously, not too long after that, my life began to change.
So I'm sitting here today, in a place I never thought I would be. I'm rising up from the ashes, like a phoenix.
And while some days are still unspeakably hard and my heart is still scarred, I made it through my first year.
On this anniversary day, I do think back to what could have been. It's hard not to think about what your life could have been like or should be like or...
But the what it's don't matter. All they do is make it impossible for me to heal.
So I'm looking back on the past year with gratitude, and maybe a bit of sadness for the girl who took so long to figure out that you get to choose what defines you, and that sometimes terrible things don't break you, but save you.

The Offering of Love

This morning I was surrounded by love.
It started early this morning, before the rest of the world was awake, my room still dark. I got a nudge, and I'm learning that when God nudges you listen, even if it's 6am and you'd much rather be curled up in bed enjoying those last few hours of sleep before your morning class.
Pray
And so I did. As each name came to me, I prayed. As I prayed, I felt such gratitude for the people I was praying for. I remembered moments, moments that would seem small to anyone else, and I saw in them beauty, remembering vulnerability and strength. And I felt blessed.
I heard sounds I usually am not awake to hear. The coffee pot starting to brew upstairs. the morning songs of the birds, greeting a new day. I saw the sun creep into my bedroom window, lighting the room bit by bit.
And I was surrounded by love.
Later this morning, I was checking my emails and one message continued to come up: love.
"Love. Say it. Say it now. Don't worry about what happens next, just say it."
"What are you willing to do for those you love?"
"Offering yourself up for love. Allowing yourself to be used. You are the offering."

Breakfast prepared lovingly, set out on the table - an offering of love.
Conversations before work and classes began, sharing time and stories - an offering of love
Bird's songs bringing my mind to the beautiful early in the morning - an offering of love.
These offerings, so beautifully prepared, and I feel inadequate to receive such gifts. How am I deserving of these offerings?
And so I add my humble offerings, offering myself to love.
Text messages sent out to friends, whispering the words "I love you. I am grateful for you" - an offering of love.
The soft 'thank you' said to teachers as we finish out this year - an offering of love.
Taking a moment to write down these tiny blessings, and expressing my gratitude - an offering of love

On this Monday morning, in the last week of school, on the 9 month anniversary of when I got diagnosed, I am learning about love.
Each tiny blessing is a soft love song and on this day I have been given ears to hear it.
May, each day, we offer up and receive love. Love isn't meant to be kept, hidden away safe. Yes, there it is safe from harm, safe from being damaged and tarnished and ruined. But if love is kept sheltered, locked up, it can never grow. If not noticed, appreciated, offered and received, the heart cannot flourish and thrive, becoming beautiful.
Take a deep breath in and receive this love that has been given to you.
And exhale, offering up your own love, your life, who you are, and let yourself be the beautiful in the world.

The greatest thing you'll ever learn is just to love, and be loved in return.

Do You Believe in Magic?

I always was writing stories.
I remember writing this one story when I was younger inspired by my Grandma. It was about a wishing well.
There was this little girl who was staying at her Grandma's house for the summer and at night, her Grandma would sit beside her on the bed and they would name all the teddy bears lined up on the shelf for the tenth time that night and Grandma would sing.
Right behind the house there was this well, and one day the Grandma gave the little girl a special coin to throw into the well, something she'd gotten as a girl. And so the little girl threw this coin into the well and made a wish. She wished for her family to be together. And, ending as all good fairytales do, the story ended with the little girl's parents coming home and her family getting to be together.
I remember writing this story, with all my spelling mistakes and grammatical errors, and thinking about my Grandma. I thought about the nights I would sleep over at their house and fall asleep on her pale pink sheets after naming her teddy bears for the tenth time that night as she would sing softly to me.
This was back when life was magical, when fairytales came true and little girls could grow wings and fly. In fairytales, anything could happen. Ordinary girls could become princesses and mice could sew dresses and dancing around the living room with Grandma was like being at a ball.
There was this one day back when I was in fifth grade and I was doing my math and I was so frustrated and mad. And then Grandma would come and she would tell me that I needed to do my best and keep a positive attitude and maybe one day I wouldn't hate math so much. That didn't really happen, but she did tell me something else. She told me that even if there was this one thing I hated, there would be more things I loved, and I needed to hold onto those things. Love always wins.
My Grandma taught me about fairytales. She taught me about playing jokes and dancing around the living room and love.
And then somewhere along the way I lost that belief in fairytales. Stories didn't always have happy endings and life wasn't all magical mice and dancing in the living room at the ball.
There was no one there to remind me to believe in love and a little magic. And so I just forgot.
But before she died, my Grandma gave me this snow globe. Inside is 2 little birds and when you wind it up it plays His eye is on the Sparrow. I keep it on my bookshelf and on those days when I'm feeling less than magical, I shake it up and turn it on and let it play. Sometimes I'll twirl around my room, pretending I'm 6 again. Sometimes I'll just watch the snowflakes fall.
But by the time the song ends I'm reminded of a world where things are much more magical than they first seem. Where I'm never too old to believe in Once Upon A Time.
I never told her how the story ends. But here's a little hint:
Dear Grandma: Once upon a time your little girl learned to fly.

4 years

Today my body is too heavy for me.
It's been 4 years, 4 years since the night of the coma, when I went to sleep and didn't wake up the next morning.
This year feels different then every other year. Maybe it's because I got diagnosed this year, that this year we found out the diagnosis behind the condition that has been causing me pain for the past 3.5 years.
It feels like it wasn't that long ago, but it also feels like forever ago.
I feel too old for my body, like I've lived so many more years, seen so many more things than I should have.
I can't run away from the past. It follows me. I am physically tattooed, the reminder of what happened scarred into my skin - in my leg where they put the IV thing into my bone (still have no idea what that was!)
It's a weight I can't put down, these diseases that I pull along behind me like a ball and chain. It's more like they are weights packed in along side my bones. It is all inside of me. The battle I am fighting is one with my own self.

I don't know if many people know this but I am terrified of sleep. Some nights are worse then others. I used to have panic attacks. I thought they had gone away, mostly, until I had one when I was in the hospital for my glycosade trial.
Sleep terrifies me, which is kind of weird because I do a lot of it.
It's been that way ever since that day 4 years ago when I went to sleep for 4 days and almost didn't wake up.
I'm scared that I'll stop breathing, stop existing.

And so I make jokes and pretend everything is ok when really I'm sitting here at 11:30 at night afraid to go to sleep tonight.
I'm just tired of this sickness, tired of the memories of days I can only half remember, of what almost was.
It's scary, hard, makes me so grateful but also anxious. I lost myself since then, and am starting to find myself, maybe. I feel so far away from that girl and yet I am that girl.

4 years ago today...