#ifyoudontknownowyouknow

I have tried to post our March  so many times. I have draft after draft. All incomplete thoughts- memories, accounts. Everything. All of it so I can’t forget or think it was just a nightmare. Or a dream. March was absolutely filled with stellar and amazing *amazing* firsts and dreams.

Lily milked and

named cows ( Charlie 1 and Charlie 2 twin calves)

She catwalked…. Little did I know this would be the last

time she could…. Or was it? 

    

and she got *fancy* 

Her forever wish to get slimed was *magnificent*

The

joy

On her face was priceless.

http://kcaslimed.com/uploads/edited/kca23344-0307__09_59_41.mp4

Lily had a *dream* American Girl expirience. I wouldn’t have been able to pull off  that kind of magic by myself *ever*…..

    

Lily went back to school to her favorite people in the world

  

She flew over her school and home in a helicopter… And her Ryerson family  blew US away with their love

         

     She made her Holy Communion and was confirmed Lily LaRue Peregrine Anderson. Named after the Patron Saint of children and those stricken with cancer. One of his feast days, ironically, is Lily’s diagnosis date….

https://www.youtube.com/watch?v=XMLAOkvDfG4&index=12&list=PLbN0kHM-zPcnA8rx9ZfQ26reBpavpp_DG

The gifts and outpouring of love have been life altering and beautiful.  The kind of beauty that stuns one silent; in reverence. Such beauty in the world…..

And didn’t it feel like, for a moment, we were going too fast? Manic? Greedy? Like maybe we should wait? And was is ” too much”? Right??? I felt it.. 

I was wrong.

And I sit here now and wonder why I didn’t do more…. How did I run out of time? 

Why did we run out of time?

How?

Why?

There was this:

  

Then this ….

    

Hospice happened…

  

I get a whirlwind of WTF is this ” comfort care” paraphernalia in my face: drugs, o2 tanks, aids and nurses and people telling me they are here to help with *this*~ and even though I was physically present in 2 very clear meetings, I assured myself it was a lie. and I can guarantee you, I don’t know what THIS *IS*……

I had only told family Lily was sent home to die…..This was why we were in a meeting with all of her doctors and team. There were words that needed to be said out loud and clearly to us. They needed to tell us that she was going to die…. 

 And that’s not even completely true- I just told my family  to “come now”… I don’t feel that was a lie . I’m sorry I couldn’t say the words to everyone. I insisted this be a happy home. No questions. No tears. Come with your best joke; game face ON. I avoided questions because I was looking for my own answers….. I needed to find  our next step. I wasn’t going to ” wait” for anything…

So then Lily gives a big f.u. To hospice….and walks. 

And then hydrocephalus happens…

and now we are here…..

And I’m not too sure where “here” is.

Lily can’t walk.  Today is 6 days I haven’t heard her voice. When I would ask her ” what’s my name? Say my name”!! She says “barbara” and laaaaaaugh …. In the sweetest, funniest voice *ever*. Every. Time.

No one will ever understand how much I missed that or what I would do to hear it again.

You. Don’t .KNOW….. you do not know what I would do to make this happen…. You will never know. I hope you will *never ever* know my desperation.

The shunt gave us time. It didn’t give the miraculous expectations I had in my minds eye. . But I am forever grateful we did this so I would never look back with regret.

And there’s the word that haunts me. Regret.

I’ve lived the last 11 months past diagnosis going into every ridiculous, incomprehencable decision knowing I had one shot and was not allowed to ever look back.

We have traveled thousands and thousands of miles.

Thousands.

And I feel like a failure….

On may 3rd, 2014, Lily was dead at the bottom of a pool. A “random” stranger – this angel who no one knows what he was doing there or why he was there- no video, barely a report…. wasn’t a guest….revived her. Brian watched him bring her back. I sat with her as she screamed at the ambulance peeps to get away from her in volume times 100… And she was SO mad! So stubborn. Not scared- she was pissed off that there were things on her and she couldn’t move bc they strapped her down. They thought broken bones, concussion? Did she slip and fall in? This a child who *swims*. But that yelling was *good*. It was STRONG. They thought she was going to be just fine. Her voice was crystal clear. ” Get OFF of me”!! She told them, “You are in SO much trouble”!!!!! 

We thought our biggest problem would be maybe junky lungs and a 24 hour observation and how are we going to explain to them they can’t go to Hershey Park tomorrow? Lily was REALLY going to be mad! 

Did this stranger come because I wasn’t there? I am prideful enough to believe so…. Do you know I don’t even know what he looks like? Some guy with wet brown longish hair….could have been bald. He is a blur. And so our journey began when they found the mass in her brainstem. On May 4, 2014 at 12:50 am.  No broken bones. Not even a bruise. A DIPG tumor the size of a lemon. Quiet. Dormant. No symptoms. 

Just. There. Waiting….

The question I asked Brian and then he reiterated to her team was” why bring her back to drown again? Why isn’t she the exception – this amazing once in a lifetime miracle? Why did she come back if this was going to happen again? “. And Brian did ask them when they came back into the room. They wanted to give us privacy. We were just told there is nothing else they could do. We had ” decisions” to make…  And Dr M said maybe it was to give US more time. That this a gift.

The gift of time.

This stupid  hourglass of sand. This absolute bullshit where we don’t get to say time out.

Don’t get me wrong- I never thought of it that way and I see the beauty in it.  But my timetable is totally different. 50/79 years would be just fine.

Days and hours is bullshit.

It unfathomable.

I watch her breathe. Every night. I stay up- so scared I will *miss* it.

Miss. It.

And now you see where I am.

I’m in a place where I cannot justify- where nothing makes sense. I try to be ” normal”. But I forget what that is.

I may or may not post our past. I don’t know what I will do tomorrow or later or an hour from now.

I just don’t.

I try to feed her. To entertain. To keep her happy. Comfortable. I need some of you to do that for me too. But it’s getting harder. Harder to feed her. Her jaw locks up. She chokes when she drinks . She sleeps more. Too much…..

She’s *there*. She *knows*.

I made her a promise I would fix this. I’m trying. So.hard. I’m looking and seeking- where who when? How!!

I cannot give up.

No fucking way.

I will baby bird feed her. I will do her excercises. I will do whatever I have to…. And that’s when I find our next step. We will live at the clinic in another country for about 5 weeks and see how the treatment goes. This 5 weeks will determine the next 5 months/ 5 years? We will leave after Easter…TBA

This was made for me. One if the best most precious things I’ve ever owned. It’s Lily’s fingerprint.

An individual,  one a kind gift. Very much like Miss Lily LaRue.

I don’t know a world without her in it. It would be a lesser one indeed. 

And so we fight.

“ it is a monstrous thing, to slay a unicorn. “… Harry Potter…JK Rowling