Friday, May 30, 2014

Snuggly bear wants to snuggle...

Greetings All!

I took the day off work today to help Shelley, because she looked like she was starting to develop cracks.  She's got all the burden of this most days, while I venture off to educate the masses, or do my darndest to try.  Shel's had a few massage gift certificates for quite a while, so I pressured her to allow me to take the day off work, let her get a massage, and have some time alone.  She relented.

I've had some people asking me about the fundraiser that the glorious Ms. Overholt has arranged next Wednesday.  Here's the details:

  • From 11a - 11p on Wednesday June 4th, if you go to Buffalo Wild Wings in Ypsilanti (B-Dubs, not BW3's as us old folks call it, as they dropped the 3rd W about 15 years ago...) and PRESENT THE PICTURE BELOW to your server, 20-30% of your bill will go towards helping us out with things.
  • For those of you less tech savvy, from your phone, click on the picture below, and then when it loads, hold your finger down.  It should give you the option of saving the picture to your phone.
  • From what I understand, we'll get 20% if the total diners presenting the flyer/picture are less than $2000.  If it's between $2000 - $3000, it will be 25%.  If it tops $3000, then it's 30%.  
  • The B-Dubs in Ypsi is located immediately off I-94 and exit 183 (Huron St.).  It's just south of the exit, right next to McDonalds.
  • I don't know if Shelley will make it to the event, and I'm nearly positive Anya wont.  However, I'll come by and hang out after work (3p arrival) for a while.
  • I've heard rumor that there are going to be gift baskets that people are bidding on as well.  Check out this facebook group for more information on the baskets. 
  • Need more information? Send me an email directly.

Amie spends a lot of time cuddled up with us these days.  This is a massive change from the way she's always been.  She's been a terribly snuggler, as she just wants to go go go go go.  With her being more tired/fatigued, we get a whole lot more snuggling.  It's a negative/positive development for sure.  I took this picture while she was snuggled up to me in bed the other morning.  Not sure why I like it so much, but I do.

I went and saw the new X-Men movie the other day, and really enjoyed it.  I've been a comic book kid for a long time, but generally only read them these days when a friend (DIRK!) loans them to me, as I know how addictive of a personality I can have, and I can only have a few addictive habits at a time. 

One of the characters in the movie is Professor X, a telepath...that is a person who can read and control other people's minds.  As you can imagine, the ability for this power to be abused is immense.  Good thing that the character is played by no other than Jean Luc Picard himself, Sir Patrick Steward.  <I recognize I'm on a massive geek-out here, stay with me please>.

Anyway, there's a part of the movie where the Professor opts out of his power, purposely giving up the ability to read other people's minds because it's become too painful for him.  Bearing witness to all the pain and suffering of all the people he can sense is just too much, and he'd rather not have the power at all.  At this point in the movie I'm totally crying, btw.

Anyway, he has an imaginary* conversation with himself from the future (I love geek movies), and tells himself the following message:  The greatest thing we can offer to those who are in pain is the ability to fully bear witness to their pain and not be broken by it.  I'm full blown weeping by this point in the movie.

Shelley and I do everything we can to ensure that Amie has no idea whatsoever how dire her circumstances are, and probably never will.  She has no concept of mortality, no fear of her treatments.  Hell, she actually likes the "spider man mask treatments" because she gets to listen to Dr. Seuss audiobooks.  <Note to self:  Record yourself reading all her books in case she's really sick.>

The above picture is from one of the aforementioned cuddle sessions.  
I'm getting better at taking upside down shots with my phone!

We are in the grind right now.  Amie got her 6th radiation treatment today, and it's still going as well as can be expected.  Amie has been crashing on the couch a LOT lately.  Before this week, she's never fallen asleep on the couch.  Ever.

This week?  3x already.  

Anya sat and sketched Amie laying on the couch for over 30 minutes.

I know some of you are looking at this and not thinking it's that hot.  But I look at it and think of all the details that she is observing.  She's noting the loops on the couch.  She's noting the placement of Baby Jumping (pardon her evolving spelling skills), the curtains, and even the folds in the blanket.  She's such a patient artist, and I'm so proud of her focus.

A few final things, if you're still reading...

We've decided to move forward with Amie's Make-A-Wish.  We've been approached several times, and always found a reason to delay.  We asked about its timeliness to Dr. Robertson, and she agreed that taking the Make-A-Wish the week after the radiation finishes is a great idea.  So we're moving forward with that, if we can get it all scheduled by then. (the week after 4th of July)

We need ideas of where to go, though.  Here are the things we know:

  • Disney is an option, but our girls have no connection to Disney whatsoever,  other than Frozen.  
  • Amie really only wants to spend time with us, and doesn't know much else.
  • Amie LOVES to spend time in the water. LOVES LOVES LOVES.
  • We'd all rather be somewhere warm.
  • Only Shelley has a valid passport right now.
For those of you who have ideas on where we should go, reply in the comments on the blog, or on FB once I post this.  We'd love to hear where you think we'd enjoy.  

As a final reminder, please click through on the ads below and to the right side of the post once you are done.  It's actually generating a decent amount of income for us right now, and we're totally surprised by that.

However, I did some research and learned that it does go back and dramatically decrease the amount it pays for multiple click throughs from the same IP address.  So for those of my friends/8th graders who are just clicking through endlessly, it realizes you're doing that and doesn't count those clicks.  Thanks though!

Ok....time to post this behemoth!  I'm headed down to infusion tomorrow, and then going to have an adventure with the girls before Shelley is scheduled to come home.  Time for bed!