Stay

Over the past 4 weeks, while I've been recovering from major surgery, I've been doing really well. Of course, like everyone else I would still occasionally have my down days, but I started doing a whole bunch of things again. I started heavily on therapies, getting myself prepared to go back to school again, and was doing some amazing things. I decided to invite everyone who has been influential in my life to a gathering at my house where I will start one of the things that I can easily see myself doing for the rest of my life. 

That's irrelevant however. Today I am writing about the challenges I am just beginning to realize. This explains the title of the post. I learned that it seems that any time I leave home things start to get really rough. Even when I am visiting my family - even my entire 22 member family - I still feel lonely. I really don't know how to explain it though because I recognize how wonderful my family is. I just need some connection to home. That or a distraction by some other kids my own age while I'm away. I just cannot handle it when someone blocks me on facebook, someone won't answer my calls, or when I'm going through a meltdown and no one picks up their phone, all while I'm away from home. I just can't handle it. So the reason for the title is that I decided that I just need to stay at home. But then again, really, what is home anymore? I am such a mess.

Surgery one last time!!!!

This is Shannon's dad.  Shannon asked me to make a quick post to let you know what has transpired in the past few days.  In preparation for what we hope and anticipate will be her final surgery, Bishop Wellman and Bishop Wood came over on Wednesday and gave her a blessing.  This really helped reduce her anxieties associated with the surgery and had her ready to go.  I got back in town from a business trip to California Thursday night, and yesterday, May 3, 2013, Pheobe, Shannon and I woke up early and travelled once again to Primary Children's Medical Center for an early morning surgical appointment with Dr. Siddiqi and Dr. Riva-Cambrin, who were doing Shannon's cranial reconstructive surgery.  The surgery involved removing the plates and screws from the last time, and also removing the tissue expanders that had been inserted about 5 weeks ago, and then inserting three synthetic plates over her existing bone to fill in where the bone had resorbed following the earlier surgeries.  Dr. Siddiqi also cut out the scar tissue from the previous surgeries so that he had fresh tissue to stitch together at the end of the procedure.   This was a bit of a pioneering effort for the doctors.  They had done these implants before but never over such a large area.  A 3D rendering had been made of her skull via a CT Scan which allowed the plate manufacturer to follow the irregular contours of her skull on the underside of the plates so that they would fit perfectly.  Dr. Siddiqi gave us a model of the skull and the plates that was really fascinating to see.

The 6-hour surgery went really well.  Shannon's vital signs remained strong throughout and the surgical team did an outstanding job.  Following the surgery she was sent to the Pediatric Intensive Care Unit (PICU) for the night.  Doctors just made their rounds this morning and are really pleased with her progress.  So we are in the process of moving to the "floor" (probably in the Neuro Trauma Unit) for the duration of her hospital stay.  She has a big turban wrapped around her head to help reduce the swelling and she has a drain in the back of her head to suction off excess fluid from the surgery.  Those will likely be removed tomorrow.  For now the name of the game is pain management and swelling control.  And she is doing well with both.

Thanks for your continued support and prayers.

ALONE

Suffering unbearable pain which torments my burdened heartache. As if I wasn't already in enough physical and emotional pain, why did you, my last friend (not family) have to tell me that I'm not good enough? How am I suddenly not important enough to even talk to? What changed from a week ago when you were telling me that you would do anything for me, where as now, you won't even pick up the phone? I am SO alone. I don't just "feel" this way. I AM this way. I AM SO ALONE.

I want comments. I need comments. I know that I have said not to leave comments before. But that's not exactly true. What I have actually said is that I don't like those fake comments that people naturally leave after reading a blog post as emotional as mine tend to be. I hate fraudulent people, particularly right after you have poured your heart and soul to them. But that does not mean that I don't need responses. That actually means I need responses more! I have next to no outlet to express my feelings. So I turn to my blog. Then after I make a post I check constantly to see if anyone has commented. But of course, no one does, because I asked fake people not to.

So, just to reiterate the questions I am asking. They are simple. There are only two of them. Why am I not good enough to be a part in your life anymore? What happened that suddenly made it okay for you to kick me in the butt?

Imagine that, Jack!

In high school, friends are everything to you. They are truly the most important thing in your life at the time. Try to picture your life back in high school, now try to picture it without all of your friends. That life is what I went through. Imagine that, Jack.
My life was once surrounded by friends and people who adored me. Not so much anymore. Now don't get me wrong, I'm not discrediting those who have stuck by me, I'll name those in a second. I used to have people (MY OWN AGE!) on my mind 100% of the time that I had no time to think about myself. (So don't give me the crap that I need to stop focusing on myself [person's name who I will not insert here]!)  Now I'll address the response of everyone who is reading this. The few of you that are still there, thank you. I love you to death for that. But fact of the matter is, there's too large of an age difference to make up for the pain that has been caused by EVERYONE my own age. Yes, even 5 years makes too much of an age gap. As far as Shireen, Bryson, and Michelle, fact of the matter is that none of you are available enough of the time to make up for all of the pain in my heart.  And to the rest of the people who are my own age who are reading this (if there be any) who say "I'm still here!" BULL CRAP. You haven't been here for me for the past 3 years and you're sure as heck not here for me now. Don't try to pretend that you are. Yes, I know that life gets busy, particularly at this stage in people's lives. I know that people move away, so often times, distance themselves from old friends. I get that, I do. But see the hardest thing, is something that I was discussing with my dear middle-aged friend the other day. When you have overlooked all of their flaws and discrepancies for YEARS and they don't even BOTHER to try to overlook a tiny little mistake that you made, or say an affliction caused upon you. (AKA spending 7 weeks in a hospital) You still love them no matter what. They will always hold a HUGE piece of your heart. While in the meantime, they may have completely forgotten about you. Imagine that, Jack!
Also you are never too busy to send a message, pick up the phone and give a quick 5 minute call. You are never too busy just to find out how an old friend is doing. When you were the kind of person who went out of their way to do that for EVERYONE, and then all of a sudden, no one does that for you. Imagine that, Jack!
 I used to be everyone's best friend, confidant, the center of attention. Then, by the time my senior year rolled around, after I had worked my little brain-injured butt off, do you want to know what I had to show for it? Nothing. Not even a page to show people who had endured medical trials. While everyone else had a special page featuring them, their hobby, their job, their latest trend, whatever! Then at graduation, they recognized someone else, claiming that they had been through the hardest, most difficult trial of anyone. Don't get me wrong, I am not downplaying her physical difficulties at all. But what they didn't do, is they didn't take into consideration anyone who was dealing with the pain of the death of a parent, or a sibling, a divorce, a major heartbreak, or any other emotional loss. They didn't look at anyone who was dealing with any sort of mental/cognitive loss, they didn't look at anyone with any sort of social loss. But worst of all, they didn't look at someone with ALL of those losses. Imagine that, Jack!
Then, going from someone who got oodles of recognition especially while I was in a coma to getting next to none. For example my ex-best-friend took around my yearbook and had "all" of my friends sign it at the end of my junior year and there are probably 30 times more signatures in that yearbook than there are in my senior yearbook. In fact, my ex-best-friend didn't even sign my senior yearbook. Imagine that, Jack!
Oh and that was after I had defied all odds by going back to school at least 3 years before doctors told me I should, taking AP classes which doctors told me I never should, and getting a 4.0 every single term which doctors couldn't even believe. Imagine that, Jack!
Then going in for the 8th surgery on my head alone and still not having anyone who I can call to hang out. Ha, let alone anyone who loves me. Now, I know, I know that you guys, my family and my friends who are totally not may age love me but that's not what I'm talking about!! Now, imagine that, Jack!
Then try to imagine finally learning to come to grips with all of these terrible surroundings, when it all gets worse. Your dear bishop who you have developed such a close bond to, not only gets released but gets called to another calling in a completely different city, so won't even be at your ward anymore! Imagine that, Jack!

P.S. I have to apologize if I am sounding especially rude, cruel, or harsh. It has been a very hard couple of weeks. And no one has been around to support me through any of it.

Ouch.

Let's just give a quick update. Last surgery, about 10 days ago. They expected just to have me in, do a quick hour and a half surgery and send me right home. Didn't quite work out that way. When they brought me out of surgery they asked me what my pain level was, and putting Brian Regan jokes aside, I said 9.5/10. So they put me on different narcotics trying to ease the pain. It didn't get much better. By the time 7:30 or 8:00 rolled around my pain level was still at about 8.5, so they admitted me into the CSU (Children's Surgical Unit) for an overnight stay so that they could get my pain to a more manageable level. I stayed awake all night long. I felt terrible for the nurse because I kept calling her back in to ask her questions about medications, or what kinds of snacks I could have and stuff, but she was great. I think over the course of the night they got me down to pain level 7/10 on oxycodon, but I had also spiked back up to 9.5 throughout the course of the night as well. By about 7 in the morning we had finally started to see some real improvement with some of the pain meds. We had finally felt like maybe we could send me home. So I went home Thursday afternoon. Since The 21st of March I have constantly battled a roller coaster of pain management. It has been especially hard because we are trying to save the really heavy stuff for the times that we know I'm going to be in the most pain. For example, when I go into the hospital again this Tuesday to have the doctors inject more saline into my expanders. While worrying about that, I have also been concerned about not taking loritab too often because loritab has been my go-to medicine when my headaches are really, really bad and NOTHING seems to be able to knock them. And I don't want to have built up a tolerance to loritab as well. But I am still in so much flipping pain. That's about that.

More Brain Surgeries!

I write today to inform anyone who still reads my blog of the upcoming surgeries. I go back to Primary's on Wednesday, (March 20) where they will preform a lesser-degree surgery. This surgery is to place two "expanders" in the back of my head. The purpose for this surgery is to stretch the skin covering my skull. They need this added elasticity for a couple of reasons. One is so that they can stretch it over the synthetic plate which they will be adding to my current skull (I'll explain in a minute). Another reason is so that the surgeon can have extra skin to work with, reducing the risk of infection. And as an added bonus, my surgeon said that he would cut out my original scar, and stitch up where there would not already be scar tissue. (Unfortunately I can't have them give the scar to me.) I then get to put in more saline into these expanders until the next surgery.

The next surgery is scheduled for May 3. This surgery is where they will take care of all of the reconstructive work. First they will take out all of my current plates and screws (which I am getting, don't worry!). They have made a plate of synthetic bone-like-material via a 3D CT scan. So the next step is where they will go in and match that to my skull. This surgery will probably take approximately 6-8 hours. I will then stay at least a couple of nights at the hospital. 

I am hoping that these will be the last two cranial surgeries I ever have to have. Then I feel like I will finally be able to move on and put all of the accident in the past. Because of this, I have been starting to make all sorts of fun plans for after these surgeries. So, yeah, I think that's about it! :)

Where Are You Now?

To my favorite teacher
Told me never give up
To my eigth grade crush 
Who I thought I really loved
To the guys I miss
And the girls I list
Where are you now?
To my ex best friends
Don't know how we grew apart
To my favorite bands
And sing a longs in my car
To the face I see in my memories
Where are you now?

Where are you now?
Cause I'm thinking of you
You showed me how
How to live like I do
If it wasn't for you
I would never be who I am

To my family who prayed without end

To the ones who watched

For every time that I twitched

Where are you now?

To my first boyfriend
I thought for sure was the one
To my last boyfriend
Sorry that I screwed up
To the ones I loved
But didn't show it enough
Where are you now?

Where are you now?
Cause I'm thinking of you
You showed me how
How to live like I do
If it wasn't for you
I would never be who I am

I know we'll never see those days again
And things will never be that way again
But that's just how it goes
People change but I know I won't forget you

To the ones who cared
And who were there from the start
To the love that left
And took a piece of my heart
To the umpteen who'd swear
They'd never go anywhere
Where are you now?

Where are you now?
Cause I'm thinking of you
You showed me how
How to live like I do
If it wasn't for you
I would never be who I am

If it wasn't for you
I would never be who I am
If it wasn't for you I'd be nothing
Where are you now?