November 30, 2010

White Out Conditions

White Out Conditions
Originally uploaded by ted @ndes
As a reward for getting good marks at school, I have been giving Matthew the Lego Series 2 Mini-Figures. (Special characters like a Lion Tamer, Surfer, Roman Legion, Vampire, etc.) Of this series, people don't like the Mime character, but some have started Flickr Photo Pool for creative uses of the figure. I think this one is my favorite.

November 26, 2010

Getting to Thankful

I wish I could say that things were going well this week, but they're really crappy right now. Melissa's Grandmother is near the end, and her parents had to go up to visit her and help out Gordon, her husband. They took Matthew with them, since I couldn't watch him and Melissa while I worked this week. So it's just Melissa and I in a very quiet, empty house.

We had a Pre-Thanksgiving Dinner on Sunday, but I royally screwed that up by mis-reading something Melissa was trying to say and reacting badly to what I THOUGHT she was saying. No matter how much I apologize I can't forgive myself, because by the time we settled down and got things straightened out, dinner was pretty much over. Matthew wanted to go watch TV and her Dad had to go take care of a neighbor's dog. I asked Matthew to stay and tell Mommy what they talked about, and he was happy to relay that to Mel while I fed her. It just was food on a plate for me at that point, no special feelings attached to it. I had ruined the holiday for Melissa by getting stressed out and causing a scene.

Melissa's Mom takes care of most of Mel's needs while I'm at work, but it's all me this week. And to boot, She's having a rough time this week with painful leg spasms and a lot of drainage. I'd hoped to take her out to see Deathly Hallows during the week, when the crowds were lighter, but she hasn't felt well at all.

On top of all that, I get the news that MY grandma, who has been living alone in a cottage on the outskirts of a senior community, has had increasingly bad dementia episodes and just had to be admitted to their rehab facility. She won't be able to live by herself anymore, and she's asking when her husband and sisters (all dead) are coming to see her.

Life is kicking us in the head at this point. How do I deal with all of it?

This is where my Training kicks in.

[ Things are bad now, which means they were better before. ]
[ WHAT was better before? Type it out. Find the Thankfulness. ]

Her Parents and Matthew are usually here. Her parents are wonderful and supportive of us. They let us live here, help take care of Melissa and tutor Matthew in his homework. They love us Kern folks and take great care of us. We never would be able to function as a family without their continuing help. And they will be back Tomorrow. I am thankful for them.

My Grandmother is 95 years old, and was able to live independently, even work in her prize-winning garden, until just now. She has remained healthy and active a dozen years after others her age have had to move into nursing homes. And even in her dementia, she seems content and happy, because she thinks loved ones long gone are still with her. I am thankful for her longevity and spirit.

I mis-read Melissa and caused a scene, making her cry. But 98% of the time I can read her head-nods, blinks and expressions properly and get her what she wants. Sometimes I am the only one who CAN read her. It's more art than science, and I can usually read a simple request with just a look from her, and predict what she is spelling out in just a few letters. I am thankful to be able to communicate with the woman I love.

Melissa has a terrible disease that can take a person in 3 years. But while ALS has taken away her speech and movement, she is still able to use a computer. With that, she can communicate with her friends, watch movies online, even do some of our Christmas shopping. And the progression of her disease has pretty much stopped since last fall. So 3 years into the disease, and she is still able to retain some independence and do some things she loves. I am thankful for the abilities she still has, which give her joy, and the fact that she is still here, which brings ME joy.

And we are both thankful for the Internet Army of supportive friends who help us alternatively deal with life, and forget about it for a while. Happy Thanksgiving, everyone.

November 14, 2010

A Much-Belated List of Thank-Yous

Here we are in Mid-November, at the end of "Flamingo Season" as it were, and I am woefully behind on my posting and thanking. I apologize, but Melissa is cramming for her dual PhD's in Forensics and Criminal Justice from an Online University. That must be it, because she watches these training DVDs that come in the mail. And I have to say, I really admire her diligence--she is studying them probably about 5 hours a day now.

The University must have a few different campuses that produce these training videos, because they have names like "CSI: Miami", "CSI: New York", "Law and Order: Los Angeles". I've seen a couple of them, and the production values on these things are pretty incredible, but one of the Criminal Justice videos has Ice-T as one of the cops. MAN, talk about falling off the map, yeah this is the same guy who was in the Rap/Rock outfit called "Body Count", talking trash about police, and now he's PLAYING one on the educational video circuit. Talk about irony. Just like his half namesake, Ice CUBE, who used to be a gangsta rapper in N.W.A., and now I believe works exclusively for ABC Family:

Ice Cube NWA Sellout Macro LOL

I suppose that's what money will do to people. But I digress... Mel's cramming REALLY hard on these things, and my workload has been insane lately, so I've not had much time to type more than a 2-sentence Facebook update in months. But since I'm the Night-shift nurse on the weekends, I can get a couple of hours of computer time in while she sleeps ever-so fitfully. So here goes :

1. Thanks to everyone who donated to get us this nifty logo!

Thank you to Janine+Ron, Bonnie, Kathleen, Amber, Rebecca, Rachel, Maggie, Michelle and Flora (Olotie)! Thanks to your help, we now have one seriously cool logo:

Fiver Flamingo MEL ALS
"Fiver's Team" was cool and all, but now (thanks to Janine and her Marathon Flamingos) we have a very cool mascot and now, a logo that shows a lot of character. Thank you so much for helping me bring this to fruition! This is something we can use for years to come.

And for some reason I'm having a creative block on those Icons I promised, but here's something to tide you over for the time being...Fiver Flamingo MEL ALS Fiver Flamingo MEL ALS Fiver Flamingo MEL ALS

2. Thanks to those who donated to Fiver's Flamingos team for the Walk to Defeat ALS!

We raised an incredible $5,227 this year! You all were incredible, and really took Melissa's case out to the people. ALS doesn't have it's own telethon to raise money every year, so this walk is their one shot to help fund all the wonderful support that the ALS Association of Georgia does for people.

And as obscure a disease as ALS is, it's funny how so many people still know someone who was affected by it. Such was the case for Berg: When he asked permission to put up a poster at the private school where he works, the principal decided to make it a "Dollar-dress-down day" where kids could pay $1 to wear regular clothes to school (instead of the uniform), and the proceeds went to the ALS Walk! We even got a T-shirt signed by Berg's class with all sorts of encouraging messages on it. So a special Shout-out to Berg and his awesome school!

3. And a special Thanks to those who braved the frigid weather and came out for the Walk to Defeat ALS!

It was INSANELY cold that morning, but you, the faithful (and obviously warm-blooded), would not be daunted. Mel was sad that she couldn't do the actual walk, but the weather was just too much for her. We figured that it would be a bit counter-productive to catch pneumonia and go back into the hospital, just to do a walk to raise funds for ALS patients, so she had to stay in the van with the heat running until we were done and it had warmed up a bit. But she was so very happy to see you all out there for her, and we were glad to get the chance to hang out with you all for a while.
ALS Walk 2010 - Fiver's Flamingos

4. And lastly, thank you to our friend Shawn

Melissa didn't think she could handle another of our annual trips to Disneyworld, with her condition. I knew that I couldn't take care of her AND Matthew by myself, and I couldn't afford to hire a nurse to come with us (like we did for DragonCon). But I wanted to do this for Melissa, so I booked us a trip the last weekend in October and bought us into Mickey's Not-So-Scary Halloween Party, where Matthew would do his trick-or-treating through the Magic Kingdom. Shawn's birthday is actually on Halloween, so I asked him if he would come along as a companion and we'd cover most of it his birthday gift. He graciously agreed, and he was not just a great friend to have along, he is actually much better with kids than his reputation might lead you to believe. He showed great restraint (in not giving Matthew a beating he SO richly deserved at many points) and incredible patience with us, since it takes so much longer for us to do things. He also showed great endurance for pain by not complaining when Matthew made him watch the "Shaun the Sheep" DVD "Little Sheep of Horrors" in it's entirety. God bless him, he deserves a Medal. (Well, he DID get a little birthday dessert at every restaurant we went to, so that made up for it somewhat, I think.)
Matthew and Donald @ Chef Mickey's A Beer with Mickey Shawn's Birthday

So thank you to everyone, you have really made these past few months really wonderful for Melissa!