Walking the dark path

I've been struggling with what to write and what to post and how to say it and all of that. This started out as a response to an email to a friend and I realized that THIS is actually going to be the post. So Steve... here is my response.

I would also like to add as a side note and something totally unrelated (other than if you make the connection of shitty bad luck) Julie got in an accident in the van on the way back to the hospital Wednesday after dropping off the kids... someone hit her. She's fine... the van is drivable to an extent, but is damaged and it's so old that I'm not sure what we're going to do. We NEED a second vehicle, so while trying to figure this all out here, we need to figure out what to do with that. Sorry, that was more of a vent than anything.

Okay so on to the letter.

Yes, I did in fact spend my birthday in the hospital. Things have been better.

While Julie and I have never been delusional as we've made the battle with Emmah, we've always clung to hope... hope and optimism. Those two motivators are running in very short supply... optimism has basically disappeared, and hope is running pretty close in its (optimism's) wake. We've had two, and I will call them "pre-talks"... we've had two "pre-talks" to the talk. The handwriting is on the wall. It seems we're going to lose her. I can't even begin to imagine my life without her in it. I have mixed feelings since when it finally comes to pass...

It's hard to type through the tears...

In my heart, I want her here, but I want MY Emmah, not some scaled down version. Now what it really comes down to is how do we want it to end? How far and what measures do we want to pursue and what is worth pursuing? They talked about figuring out how to get her home by perhaps sending her to a transitional hospice with the goal to get her home.

After some discussion with Julie, I said that I didn't want her home... it would be too painful of a reminder. I said that unless she gets up gets herself dressed, packs her bags and sez, "Let's go home Daddy" I don't want to bring her home. Seeing her in the family room in whatever condition that she would be in would haunt me. I said that if we stay here... that when THAT time comes, I can walk away from here and NEVER EVER look back. I don't come to this part of town, and I have no reason to ever come here again... I could walk away and close the door. Cue the sunset, fade to black, roll the credits and the end.

I don't suspect that I will be getting out of here any other way than alone. Unless some miracle happens, nothing's going to change that.

When THAT day comes... it will be such a relief of such a burden. For the first time in nearly 4 years we won't have to have that cancer cloud hanging over our heads. I said to Julie, how far do we take this? I mean it seems a foregone conclusion that she's not going to make it, and IF by some miracle any interventions should even help her to hang on a little longer, I feel like it's only prolonging the agony.

I said what if it buys her another two years... sounds good in theory, but in two years we will find ourselves right back at this place and I can't go through this again... there is no way in hell I will make it. I've already started the process of coming to terms with this. I hoped and prayed... I begged God to take me instead... I pleaded with him and we still end up here.

I told Emmah the other night that "she doesn't have to fight for us anymore, that if she want's to fight that it be for her... we will be here for you and whatever you want us to do, we will do, but you don't have to fight for me and mommy." She nodded. I asked her the following morning if she remembers what I said to her last night, she said yes. I asked her if she's scared... yes. I said we're scared too sweetie. I then asked her if she wanted to take her meds today... she weakly nodded her head yes.

That's my girl... daddy's little girl... a true warrior!

Damn it... tears again...

The Emmah that touched so many lives in her short time here seems to be leaving us (her brain wants to fight, but her body is betraying her) and depending on your beliefs of what awaits for us after leaving our physical existence here... she is off to a much better place. I struggle being in this situation, because it most certainly doesn't do anything to help me believe in the existence of God. I think how can THIS be his plan for Emmah and us? This is the most cruel punishment you could ever imagine... the physical and mental anguish that goes along with this is unimaginable. The atrocities of Hitler look pretty mild compared to this. Please understand that I in no way mean to diminish the severity of what Hitler did... it's just suffering in this way, the way that we are, takes torture to a new level.

She is not at death's door... not today anyway, but we seemingly are circling looking for a place to park. It's just a matter of time before we find a space. I don't want to give up, but there comes a time that you have to say we did all that we could but just got beat by a cancer that is voracious and unrelenting. I'm struggling...

The reality is that not one of us gets out of this (existence) alive... no one! We all will die someday. Another reality is that we start dying... and I used to say birth... but I've changed my mind... from the point of conception. That is when it all begins. From that moment on, we start growing into what we know as a person... a baby, toddler, child, pre-teen, teen, adult and then... well the end. I mean that's supposed to be the natural progression... that we make to adulthood and with any luck live to a ripe old age of 100 or so. Children are not supposed to predecease their parents... it's wrong on so many levels.

I want nothing more than for Emmah to be at peace, but if that can't be achieved here... on this planet with us, then she needs to go where ever that peace is. I really really really wish that was still here with us, but it's not looking that will be the case. Things could certainly improve... they could... I mean that's that shred of a shred of hope that I cling to... but it's just that... a shred of a shred. It's like trying to hold water in your hand... though you feel it wet and hot or cold and though try as you might, you just can't get a grip and hold on... it just runs through your fingers.

We don't rightly know when THAT day will come... we kind of hope that she makes it to her 14th birthday, but who can say. We've been chasing fires now and are juggling more and more with her. She's tired all the time and I know that they're saying that it's due to the Methadone... and it very well might be... but then what? She's in pain again?

I don't want to see her go... she's my baby... but if this has become her fate, I'd much rather see it happen quickly.

The hospital has put a butterfly on our door... I only know this because it's at my eye level. I have been witnessing something going on down the hall... a few rooms down. I see A LOT of people hanging around outside the door, I've seen the priest. I may not be the sharpest tool in the shed, but even I can see what's going on. I noticed that there was a butterfly on THAT door as well. Made me sad to see one on ours. Julie inquired about it asking if it means like someone dying... she was told that they put it on there to signal the staff to be aware of the situation and to not just barge in. It doesn't mean death/dying.

I guess it just means that we're looking for a spot to park.

KEIYTAP... KEIYH (Keep Emmah In Your Heart)