Saturday, March 14, 2015

You gotta have Faith...

So it's pretty obvious that I haven't written a post in a while. Whenever I think about it, I just go blank. I guess you could call it "writer's block" but what I think it really is, is fear.

I have always tried to be honest here when telling about my travels with Tessie, but I also never really put myself totally out there. I tend to try to soften up the harder stories with a small joke or some other way to prove that everything was okay even when I was not necessarily feeling okay. I'm not sure who I was protecting by doing that? Blake and Ellie, maybe, since I know they read this blog. My family perhaps. Or maybe, just maybe, myself. And since I am of the belief that, to paraphrase from the Bible, Where Faith exists, Fear cannot,  I am going to take a leap of faith and put my fear out there for all to see in the hopes that the grip it is holding on me will lessen, even just a little bit. I think in order for me to write any more Tessie stories, I need to get past this one. To basically drag it up from the dark where I have been trying to shove it and shine a great big light on it.

Fair warning, this is a bummer of a post. Nary a funny in site. With that said, here goes nothing.

About a month or so ago, the hubby and I met with the Palliative Care nurse at Maine Medical Center. We had a very good talk with her and agreed that the best thing we could do for ourselves and for Tess was to fill out an Advanced Directive for Tess. This would basically be a written document that we would carry with us whenever Tess was in the hospital to remind us of the decisions we would want to make in regards to her care should things get very scary like they did this past October.  It is recommended that parents do this so they are not forced to make some of the hardest decisions of their lives in the middle of a crisis when they aren't thinking with their rationale brain, they are operating in a state of fear and panic and, let's face it, that's no time to make life and death decisions if it can be avoided.

At any rate, we left that meeting feeling pretty good about making that decision. I thought it would be a very emotional meeting and turns out, it was almost comforting to know we had that support system in place.

Then the Advanced Directive paperwork arrived in the mail.

This is what was staring at me:




It looks so deceivingly happy, doesn't it? And in pediatrics, the Advanced Directive is called My Wishes. It is designed to help kids who are mentally able and know that they are dying, to have some sort of control over it all. And while Tess is mentally one smart cookie, she obviously cannot answer any of these questions which leaves it up to Charlie and me to do. To answer, for our daughter, how she would like to die. Where would she like to die? What comforts her? What are her favorite things to have with her when she is dying?

My hands are sweaty, my heart is pounding and my eyes are watery just typing that sentence.

 But where Faith exists, Fear cannot.

HOW are we supposed to answer that?! HOW does a parent answer how their child should die? This seems like cruel and unusual punishment. This is NOT what I ever in a million years thought I would be doing for one of my kids and this sure as hell is not what I signed up for when I wanted to be a mom.

 But where Faith exists, Fear cannot.

So I put it right back in the big manila envelope that it came in and haven't looked at it again until tonight.

 But where Faith exists, Fear cannot.

It is just too overwhelming. By writing those answers in it feels so much more REAL. Like I am acknowledging that I know Tess is going to die. That I know she will never get better, only sicker and more fragile, as she gets older and in reality, we have no idea what "older" even means. One more bad pneumonia could be the thing that kills her. One bad seizure.

But where Faith exists, Fear cannot.

To top that scary pile of crap with even more scary crap, she will be getting spinal surgery and will have a tough recovery with a post-op pneumonia that is nearly a guarantee. But to not get her the surgery will also mean putting her life at risk because her lungs are so compromised from her scoliosis. There is no win-win here. Just scary and scarier.  And I live in a nearly constant state of fear over her health. Was that a sneeze? Did she just cough? Why is the dog acting so bizarre around Tess? Is she having a seizure now? Did she just get bath water into her mouth and aspirate into her lungs? The Fear is ever present. Almost omnipresent. And that is NOT how I want to spend my time with Tess or my hubby, or my two other girls, or anyone else for that matter. I'm sure I sound totally neurotic and I will admit, I'm a little nervous to put all of this out for everyone to know about me but, I think, if I don't get it out then I don't stand a chance of beating it.

But where Faith exists, Fear cannot.

Then there are times when I just look over at Tess as she has her little hands clasped together and a big smile on her face while watching her favorite movie and all I can think is, "Time! I need more time!", which I know is very dramatic because it's not like I even know how much time she does have. So I try to think like a rational human being and tell myself to stop borrowing trouble that isn't even here. Then I try very, very hard not to think about how I'll be if/when she dies. But I'll think it anyway because it's always there, lurking like a dark cloud that is hanging over my head that I can't ever seem to run away from. When I mention it to family members, I'm all stoic and brave because I fear, if I let even a small chink in the armor show, it is all going to go crumbling down around me and I will just fall apart. I often wonder, can someone's heart literally break? I'm starting to believe that it can.

But where Faith exists, Fear cannot.

And that F***ing Advanced Directive. I hate it. I hate it, I hate it, I hate it, yet I know we have to get up the courage to fill it out. Because I know I have to face this. WE have to find the strength and courage to fill this out for Tess. She deserves it.

And where Faith exists, Fear cannot.

I don't know how long we have Tess, and I am not expecting a miracle as far as her health goes. I understand what is happening to her little body each time she gets sick and even if I didn't, the term neuromuscular respiratory failure would be enough to give me a pretty good idea. But here's the thing, I am not expecting a miracle, not because I don't believe in them, but because I know we've already gotten our miracle... in Tess.

Tess is a miracle. There's no doubt in my mind about that.

And where Faith exists, fear cannot.

So screw you, Fear.