February 11, 2007

5 years ago today, God took Russell home.


Russell was, for those of you who don't know my life before this blog, one of Mister's and my closest friends when we were living in Alaska.  He was more than a friend, he was like our brother.  He is the man our son is named after.  He had his own room at our house, even though he rented an apartment within walking distance, and spent about every waking moment on our couch (and in my face).


See............Russell was truly, madly, deeply in love with me.  Yup, that's right.  (Didn't think I was wise to it, did you Russell?)  Didn't make any difference to Mister, he knew Russ didn't stand a chance - I wasn't going anywhere - and I never will.  In fact, I think Mister was amused by it.  He got to watch Russell make an arse out of himself on a daily basis either to me or at work.



 Russell was hilarious, but not on purpose.  He was very selfish, very moody, and very demanding.  He was like a woman with perpetual PMS.  In fact, we called him Negative Nancy (usually just Nancy), Pissy Patty, and Sally.  He sounds just awful, doesn't he?  Well he wasn't.  Those female qualities just made him more ridiculous.







































What a hot mess.

Never a dull moment when he was around.  Lots of arguing, but more laughing.  Any of you who knew Russell know exactly what I mean, but reading this back to myself - it really sounds terrible.

HAHAHAHA.  Once, he needed some furnishings for his apartment and didn't want to spend any money, didn't want to go by himself, and didn't want to change his clothes first.  So he dragged me down the street to Fred Meyer's (a northern version of Wal-Mart) wearing a long sleeved Steelers shirt, Michigan yellow sweat shorts, and green Army socks stretched up to his knees to see how cheaply he could score some plastic dishes.  It was mortifying.  But I went along bc as horrific as his outfit was, it was even more histerical to see the looks on everyone's faces as we passed by.  That's what I mean by his frusterating qualities also being what made him so great.  I am still haunted by those shorts.  In fact here they are, in a teeny tiny picture from when we went deep see halibut fishing:



Through Russell's passing, I gained a name for my son, a sister named Stephanie, and an extra set of grandparents for Little.  We are lucky to have had Russell for those 2 short years.  In that amount of time, he was able to weasel his way into our hearts ant cling on for dear life like a tick on the end of a sprinting dog's tail.

And now, seeing as how it's the 5 year anniversary of that fateful day, I feel the need to share your true spirit with the world.  So here it is, Pants Off Dance Off.



You're welcome.

Baby Steps

Little Bit was referred to early intervention services a year ago this month.  This was before we knew about his Duchenne, before we knew he had anything life long or life threatening.  In the past year of therapy, Little has just turned into an entirely different being.  He couldn't do anything by himself other than roll over.  There was no crawling, to pushing himself up to sitting, no cruising, no bearing weight AT ALL on his legs, and no voluntary reaching of his arms over his head.  Had our 1 year assessment with Kentucky 1st Steps this morning and all 4 of us were just so so so so proud of how far he's come.  He hit ALL of his 1st year goals!  I was skeptical that he'd hit the big ones, like walking and drinking from a straw (and I think the therapists were, too)  in just a year, but Little One worked his heiney off and blew us all away.  He's definitely deserving of the 3 week therapy break he'll get starting at the end of the month.  This tiny boy has been so brave, so determined.  He has had to work 10 times harder than a tot without muscular dystrophy to master even the slightest of motor skills.  Skills like holding his own bottle - most of you take that skill for granted with your child.  You might even be a little bothered by him or her grabbing and holding onto the things in your hands like his/her life depends on it, but Andrew couldn't do that until he was about 14 months old.  Do you know that Little Face can't kneel?  Can't jump?  He can't even pull his own socks off.  That's how weak he is.  In church Sunday, he saw his friend, who I will call "Nugget" clasping her hands together during prayers. I didn't even realize he couldn't do that - it was so adorable watching him try.  There are just so many things Andrew cannot and will not ever be able to do.  But he can walk.  




He walked and walked and walked and walked.  I think he was at it for 20 minutes last night.








I was so proud.  Those were the longest walks he's ever taken!  But just as we were getting relieved and excited that he seems like he'll be able to walk down the hall to his room by himself one day, he collapsed.  Just crmbled to the floor as the muscles in his legs gave out.  Mister held him for a minute and let him rest then set him back up on his feet.  He instantly dropped to the floor again.  It was like a punch in the gut from the Duchenne Goblin.  Well, more like a dead leg, really.  Like "Haha!  Don't get too excited, I'm still heeeeeeeeeeeeeeere.  Don't forget about meeeeeee!"  I could see it in Mister's face as he held him - that realization that all of this progress is just masking the DMD, not curing it.  I hate seeing that in his eyes.  Mister doesn't like to talk about what's going to happen to Andrew, it's just too difficult for him to face right now.  So seeing him having no choice but to acknowledge it last night while cradling Andrew on the floor of the hallway was rough.  I wanted to cry, but I didn't want Mister to feel any worse.  It was just so bittersweet to see Little take his best walk ever, but completely wear out his muscles doing it.  I just kissed them both and thanked God for the time I have them.

I hate Duchenne.

On your 30th birthday

were you in a commercial that aired during the Super Bowl?  My brother was on his!!!!!!!!!!!!!!  And it was unexpected - so there he was just enjoying a birthday/Super Bowl party when all of a sudden his mug popped up on the screen.  I guess they "forgot" to tell the actors that the Hulu commercial they were shooting was being aired during the most sought after commercial slot of the year.  Here it is, he's the head on the right that responds to the head on the left who just spouted off a Southpark quote.



Sweet.

So the Little's Logo tees should be here any day!  Thank you to the 68 of you who ordered one (or 6 in some cases)!  Of the 68, there are still 23 of you who have not paid, so send that my way when you get a chance.  You can mail me a check or cash, use the donate button to you right and Paypal me the money, or give it to my mom.

OT G4 was here yesterday and she had to do a little assessment of where he is now vs where he was when we started therapy almost a year ago - leaps ahead! - but she thought it would be fun to glance at the speech section of the book, too.  Now this is super unofficial and just a broad overview of his speech capabilities (bc obvi an actual speech assessment would be way more in depth) but we were able to answer "yes" to all of the speech questions stretching through the very last day a 3 yr old would be 3!  (Umm, so that means a 3 yr old who would turn 4 tomorrow).  So Little has the speech abilities of AT LEAST a one-day-shy-of-4 year old.  That's where the book stops, lol.  I'm curious to know what a real speech evaluation would tell us.  According to Parenting Magazine, he's a genius.  And if it's printed in a magazine, it must be true. HAHAHA!  Really, it's just nice to be ahead of the game somewhere with Little.  He's just so far behind physically (and will be his whole life) that sometimes it's nice to know that he's excelling somewhere else.  He's one smart little cookie, that's for sure.