Thursday, December 30, 2010

Two weeks...

It looks like. I'm not certain that it's all officially coordinated, but as of yesterday, we were still on the schedule for January 13.

Of course, it's that time of year. Between holidays so no one seems to be in the office, so I didn't get to personally speak with the schedule coordinator. She's on vacay until the 4th. And the neurosurgeon...out of the country until the 10th. She was nice enough to answer emails yesterday from the clinic ::note sarcasm here::. Apparently we will have a busy week leading up to surgery with imaging and pre-op for the 7th or 10th, clinic visit to discuss procedure with neurosurgeon on the 11th, and the actual surgery to take place on the 13th.

How considerate of them to give me such advance notice! ::note more sarcasm here:: We won't know until the 4th whether it's all official and if we'll need to be there on the 7th for the imaging and pre-op. I don't even know what that consists of yet. The guy I spoke to was just a messenger with absolutely no clue who just reading an email to me.

For the life of me, I don't know how we will work this. I am a planner, people!! AAHHH!! I don't know any specifics and it's driving me nuts. If we have our appointments on the 10th, 11th, and 13th, should we just plan to stay the entire week? Or drive down each day (2 hrs each way). I can't even imagine how exhausting that will be for us. One day is enough to require a full days recovery. Why would we want to put ourselves through that when we will need all the energy and strength we can muster for the days after? Seems like a simple decision, right? Well, here's the catch. Although Chad has a wonderful paying job, he gets zero paid vacation or sick leave. So, there's not only expenses to think about if we stay, but a complete loss of wages for probably two weeks. I guess that's what our savings is for, right?

I'm rambling here. So much clutter in the head going on right now. I think I'd feel better if plans were concrete. I hate limbo. Hate it, hate it, hate it! And this is all just what's on the surface. The planning that I feel like I should be able to control. I haven't even touched on what I can't control.

It dawned on me just this morning while gazing into that sweet face of his and gently stroking that thick brown hair. He was having a cluster. Parents who have comforted their kids through these things may know what I'm talking about when I say it's the single most heartbreaking yet endearing experience. He always makes the most precious expressions that melt my heart at the core. A look that's half pure sweetness and half sheer confusion. I hug him. Kiss his forehead. Run my fingers through his hair. Admiring the perfection that is my son. Two weeks, I think. Two weeks and our lives will be forever changed. Whether seizure free or not, that's not certain. Reduced, hopefully. But, regardless, we will have embarked on yet another journey where there is no turning back. My head is spinning with uncertainties, hopes, fears, and gratitude. I'm grateful that this is even an option. But, I'm scared to death of it too.

And this is only a glimpse of what lies beneath the surface. It's what I'm holding back in an attempt to keep myself sane and why I seem so focused on planning. The planning is not the most important part. But, it's what I feel I can control the most. And I can't even do that right now.

To top it all off, this kid has almost completely refused to nap for nearly two months now. With the holidays, worrying about the surgery, and no clear headed thinking time of my own, my brain has really been on overload. He's also been waking between 4 and 5 am without fail every night since being off the diet (and occasionally before then too). It's like his little body has an internal alarm to get up and have seizures. Sometimes he's only up for a few minutes, sometimes it's two hours. And Bailey...oh my. What was I thinking? I got her a mini soccer ball for Christmas (which she absolutely loves) and I've been having to hide it at times for some peace and quiet. Seems like she's ready to play when Austin's ready to rest and vice versa. So when he does actually nap, it's sometimes short-lived because I forgot to hide the ball. Maybe once a week he'll go down for more than 20 minutes. Please, someone tell me this is just temporary! Surely he's not done napping yet. Don't three year olds normally still take naps???? The only time he seems to want to take a good, solid nap is when we need to be somewhere. Typical.

I will definitely post when I hear from neurosurgeon's office. Maybe Monday, but most likely Tues. or Wed.

Until then...

4 comments:

Sophie's Story by Elaine said...

Oh Holli, my heart goes out to you. It is SO HARD to be in limbo. To not know the details. To have to think and rethink and think again about what needs to be done in the next two weeks. I am here for you. Call me anytime.

Anonymous said...

Why not plan on being there the 7th and if it changes to the 10th, make adjustments. Its probably easier than just hanging in limbo.

For some decision making issues, like driving back and fourth, why don't you weigh the advice of people like Elaine and Danielle and Ken. I understand the financial issues. But maybe some people who have been there can assist in making some somewhat rational decisions during an unbelievably emotional time.

Four hours/day in a car seems like a lot during good times. Be thankful you have savings and that it is an option.

Lots of us will be thinking about you and your family. I don't think anyone can really understand unless they've stood in your shoes. Bless your heart.

happy's mommy said...

What Elaine said! I would be pyscho too. I'm SO sorry that on top of all the emotional drama that goes hand in hand with your child having radical (NOT run of the mill) surgery...you also have to deal with the unknown factors. I hate that for you.

This line got me right in the sappy sweet spot...

"Parents who have comforted their kids through these things may know what I'm talking about when I say it's the single most heartbreaking yet endearing experience. He always makes the most precious expressions that melt my heart at the core. A look that's half pure sweetness and half sheer confusion."

This may sound weird and terrible. But sometimes I miss that. Not the clusters of seizures. And not miss...as in I wish we'd chosen differently. But I miss that beautiful soulful innocence he used to have... Trevy is still beautiful. But he's lost that innocence. It's been replaced with cheeky. Which is endearing in its own way too...

Anyway...

Love you, hon. Please...please...please...know that you can always call me. Or email me. Or not. Whatever you need. I want to support you...

...danielle

JSmith5780 said...

Savings?? What are those? ;)

Seriously though, I can't imagine being in limbo like that. I, too, am a planner, especially when it involves something stressful like this. I hope you get concrete answers tomorrow!