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...

Wednesday, December 22, 2010

This will undoubtedly make you feel all warm and fuzzy..

And give you a reason to believe in the magic of the season. My last post touched on why I love Christmas so much. This is a very clear illustration.

Thanks to Jen for sharing this with me, so I can share it with you!

A truly amazing display of generosity. (It's a little lengthy, which is why I'm including the link rather than the post itself. I promise, though, you'll want to read this.)

Tuesday, December 21, 2010


Never in my life have I been so eager to get through December. If you've been reading, you know about me and Christmas. I usually want this month to last forever. Wishing there was a pause button to keep December 26th from coming. Always a sad day for me. Seeing everyone resume their lives and get back to the grind. The joy and generosity slowly fading. Just another day.

Sure, most people love this time of year too. And a lot of people are sad to see it end. I'm probably not alone on that one. Despite the chaos, the shrinking finances, and the stress of figuring out how to divide our time between families, it's still always been my favorite month of the year. And I've always always always hated to hear people say they'll be glad when it's over. I've always despised hearing people say they hate Christmas. Made me so sad. Yeah, it's stressful. Yeah, it can be a financial burden. But, why does that have to be the focus? People have always said my attitude would change when I had a kid. They were right. And wrong.

My single greatest joy of the holiday season is seeing people happy. Honestly. When I was a kid, I'm sure it was the gifts. Now, I'd much rather give a great one than get one. I'd be lying if I said it didn't stress me out sometimes trying to find the perfect gift. And I rarely do find it. But, when I do, and I see their reaction...priceless. And, no, it's not always about the gifts. I love to see people get inspired to make someone happy. I love to celebrate the birth of my Savior. I love to believe there is something magical about the season. Love, kindness, generosity, and...miracles.

And don't get me wrong, I'm not hinting that I don't like Christmas or that I'm dreading it this year. But, I'm completely distracted from the festivities. All I can think about is Austin and January. Austin and January. Austin and January. Where is my fast forward?

A couple weeks ago, Chad asked me what I wanted for Christmas. It took me a week to give him any ideas at all. By the way, he completely spoils me. But, there's a catch. I HAVE to tell him what to get me! He will not go shopping without a detailed list. Drives me nuts because I adore surprises. Anyway, I was absolutely stuck. I so didn't care. I wanted to tell him no one could buy me what I want this year.

I want the miracle.

I want no seizures. I want a happy, safe, energetic, laughing, running all over the house, excited, talking Austin. I want to hear him tell me what he wants for Christmas. I want to leave out cookies for Santa with him. I want to see his face light up when he opens his gifts. I want him to open his gifts. I want him to tell him about the Baby Jesus. I want him to oohh and aahh at the Christmas lights.

That isn't something I'll find under the tree.

So, where's my fast forward?

This month is dragging by. I mean dragging.

I still love this month, I truly do. But, dangit, it's going by way too slowly. You woulda never heard me complain about that one before.

We're nearly there, patience, Holli. I've waited two years to find out if he was a surgical candidate. What's a few more weeks? Hard to explain how this feels, some of you know exactly what I'm talking about. Patience is hard to come by when your child's future is possibly at stake. And the potentially life altering moment is penciled in on next month's calendar page.

Does it make any sense when I say I'm ready, but nowhere near ready? Probably not.

This month's slow motion feeling is excruciating, but I'm thankful it's this month and not April or July or something like that. At least it's the one month I truly adore, otherwise I'd be in trouble. :)

Merry Christmas!!

Thursday, December 16, 2010

It's not official yet...

But, we have a tentative date set for the surgery.

January 13.

That is...if we can get everything all in alignment for that particular day. Our neurosurgeon's schedule coordinator lady is supposed to be letting me know fairly soon whether this is actually going to happen. He will be traveling the first week or so of January and won't be back until the 10th. She said she never schedules surgeries for him on his first day back (thank goodness), and we need another clinic visit to discuss the procedure and ask questions (yes, what we should have done at the appointment in November). So, that leaves the 13th. Pending O.R. and imaging availability of course.

I'm annoyed -as usual. We still don't know about the corpus callosotomy and I practically had to stalk her to get this info. Call me demanding, but I really sort of expected them to get this lined up in the very beginning. You know, see what's available and call me. Not, get yet another run around where I feel like I have to stay on top of them and make them do it. Yes, I know there's a lot involved in a procedure of this magnitude -staff, OR, imaging, etc. But, this is not my job. I shouldn't have to keep calling to check in to see if it's been done. I shouldn't be sitting here worrying that she's not getting everything in order and we may lose that slot. I am ready to get this behind us.

Anyway...that's all I know.

And as a side thought...

Why couldn't Austin have flashed just one of these cutsie smiles while we were getting portraits yesterday???

Tuesday, December 14, 2010

Because that's usually how it happens...

I'm short on Christmas cards yet once again. And because they're sold in sets of 20 rather than individually or 5 (or even 10 would be ok). I apologize early, but this year's budget is already maxed to our eyeballs and ordering 20 more plus more postage is would have it bursting wide open. I can't justify a final tally of nearly $100 on cards (being the crazy dog lady that I am, I ordered cards from an organization that I'm not even using -sorry, Chad if you're reading this, I may have forgotten to mention that).

So, the budget-friendly Christmas card (crooked and all from my lack of patience with my scanner) :

Monday, December 13, 2010

In photos

I gave a very long and ramble-y rundown of our past Christmases and traditions in my last post. Kind of depressing if you ask me! I was definitely feeling the heat of the holidays and stressed to the max over my super high expectations.

I've caught my breath now. And exhaled. ::smile::

And I'm ready to enjoy this to the fullest extent. It's far from what I imagined, and certainly not how I hoped it would be. But, it is what it is.

Now, for our Christmases past and present...the fun way! In photos!

Bailey's first Christmas 2006
When Chad was the only brown eyed boy in my life and my only 'child' had four legs. Yes, I was even the crazy dog lady back then!

Austin's first Christmas 2007
He was two months old. I was still sporting the baby weight, and never in my life was I more sleep deprived!

Austin's 2nd Christmas 2008
I had to learn to get creative with the photos since telling him to smile and him actually doing it were out of the question. Lots of fun, but definitely hard work.

Austin's 3rd Christmas 2009
This one was rough. He didn't want to do anything but get up and walk. That Bailey, though, she'll sit as long as you have a treat nearby.

Austin's 4th Christmas 2010
Yep, I decided to go ahead and do photos this year! We haven't done the portraits yet, but we're planning on it anyway. These aren't what I'm using for cards...More of a glimpse of the process of getting a wiggly toddler to stay put, smile, and look at the camera -all at the same time no less! It didn't go over that well, but I was able to find a few that will work.

Thursday, December 9, 2010

Christmases past...

I've always loved Christmas. LOVE it. Even during the stress of the commercialism, lack of time (and usually finances too), and chaos (did you know I used to be a postal worker? lol). I still loved it, and one month of being exhausted was always worth the joy of season. I've even loved it during...Infantile Spasms.

I'm extremely traditional. Really, ex-treme-ly. It kills me to break tradition -especially Christmas traditions. Sadly, getting married (not sadly that I'm married) added even more traditions to the mix and all those long hours keying thousands of Christmas cards at work complicated my previously quiet and calm life. It got to the point where it was physically impossible to keep up with the flow. When I was growing up, we had a traditional Christmas Eve watching of A Christmas Carol (absolutely the George C. Scott -no other would do). It was always right before bed, there was just something magical about it. It didn't matter how many times I would watch it (but I only watched it on Christmas Eve -like I said, extremely traditional), it always evoked sense of love and gratitude within us all. Like watching it the very first time. It's been several years since I got to watch it with my family. I completely missed it year before last, and I think last year I made Chad watch it with me, but not on Christmas Eve. Those are busy busy for us now. His family also has a Christmas Eve tradition. A family gathering in the evening and then gift exchange that night. Gosh, it was so incredibly hard letting that one go. I tried to make it work for about six years. Working on Christmas Eve, heading to the in laws, quick gift exchange, then off to my parents for the movie. Then back to our home (which has never been less than 30-45 minutes away). Then back up to our parents' town the next day for dinner and gifts with my family. A very long day almost always followed by work the day after.

My point? Just a glimpse of how hard I try to keep tradition going. When Austin was born, I just had to get Christmas portraits. He was just over a month old when we got them done. His birthday falls exactly two months before Christmas, so I thought that instead of getting annual age AND Christmas portraits, that we could just get them done at one time. The first year was just how I imagined it. The next year...well, he'd been seizing for almost eight months by then. It was his portraits that made me see what the meds and seizures were doing to him. Just two months before his seizures started I had some five month portraits done. I had some of the most engaging, alert, and vibrant smiles you'd ever seen. By Christmas, we didn't get a single smile on camera. Not one. His face was drooping from the loss of tone and drool was in nearly every photo. But, I still went the next year (last year) and we did get a couple smiles. I booked for early November this year. He was doing SO well. His giggles and smiles. Seizures were still a problem, but manageable (since we have to keep his helmet off). We've had to reschedule twice and it appears that the smiley, giggly boy I was so excited to capture on camera is fading. Now I'm debating postponing again indefinitely.

It seems like he always slips about this time of year. The first year (after seizures started), we'd just started Vigabatrin that November. We'd increased his Zonegran so much that he was like an empty shell of a boy. No sparkle, no interaction. Last year, we'd been tweaking his meds again. He had such a wonderful summer full of new developmental gain and laughter. By November, drops were back and life was barely tolerable. Same goes for this year. We weaned the diet and all seemed to be okay in the beginning. Now...he's had four bloody lips in less than a week. And I watch the kid like a hawk. I'd probably be pushing to get him back on the diet if it weren't for surgery. He can't be on it if we go that route. And the jury is still out on that one. I'm waiting on a call as I type. I'll get into that in another post.

Again, my point. As much as I want to just enjoy this time and keep it going as if he were okay, I just don't know if I have it in me. Oh, and the Christmas cards! His first Christmas was simple, sit him in his bouncy seat by the tree and have Bailey sit beside him (she's a posing pro by the way). The next, a little more challenging, but we made it happen in his Radio Flyer wagon with him as Santa and Bailey a reindeer lol. Last year? A nightmare. He was miserable and just wanted to get up. Of course, me trying to take that task on completely by myself was a really bad idea. How in the world will I pull it off this year? And do I even want to attempt it? The Christmas tree is just a few little Austin steps from a brick fireplace, a ceramic tile entry, and a sofa table. Red flags galore! But, how will I feel next year when I'm putting out my Christmas decorations and there's no photos from this year to display? How will I feel when I don't have any cutsie Christmas tree photos to scrapbook? Defeated.

I've always always always gotten on to my mom for letting trivial things get to her during the holidays. Now look at me. It feels like total defeat. Every Christmas I've tried to make the best of it and say next year it will be different. Next year. Three down and it's not different. It's worse. That's not to say I don't have faith that we will get through this. I'm just disappointed that it hasn't happened yet.

Maybe there's something better in store for us in 2011. I can only pray that there is. Until then, I guess I will just have to suck it up and get through one more? Hopefully?

(I'd planned on sharing the Christmas card photos from the past three years, but I forgot that only last years are on my computer! Maybe I'll dig them out and post them soon along with this years when we get it done. Yes, I'll probably do it. Breaking tradition does not come easily for me! lol)