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)


happy's mommy said...


just to let you know I hear ya...and I'm here.


devon said...

Miss you guys and praying you have a great Christmas! Praying for strength for you! You are an amazing woman Holli, I dont know how you do it! I say go for it, take a Christmas picture...with some help! 2011 may bring amazing things and it will be great to look back at 2010 as a benchmark of success!!! Plus seeing that handsome boy of yours is never a bad thing!

JSmith5780 said...

So sorry things are rouhg right now. I am praying for a better 2011 for Austin!

blogzilly said...

You pretty much know I won't sugar coat anything. I can't. I don't think I could even BEFORE all of this...this FREAKING BULLSHIT happened to all of us.

I was a no-nonsense, shoot from the hip type of person then. I'm the same now. Only I have a bit more of a jagged edge to me these days and I'm less sharp.

Your situation sucks. You know it and I know it and so do we all. You wouldn't be writing about it otherwise. I feel for you kiddo, and for your family and for your boy, I feel almost as deeply as I do for ANY of us whose kids lives have been devastated by IS, CP, Leukemia, Downs, and on, and on, and on...

So why do we bother, huh? We do we keep on fighting? Cause we have to. There really isn't any other choice, so we do everything we have to do and we do it again and again, day after day. So will you. So will I.

You'll make the most of this Christmas, somehow. So will I. Somehow. It won't be easy. There will be hurdles. Maybe if we are lucky, there MIGHT be some joy. Maybe. Hope so. I do.

I'll make you one promise though. If Santa actually DOES come to my house, I'll re-route him over to yours. Other than that, all I can say is hang tough, stay frosty and you're family is never far from my thoughts.

(My CAPTCHA word below is, I shit you not...FUSIONOG, which really should be the name of some kind of sports drink/egg nog combo product.)