Thursday, September 29, 2011

I'm in one of those do nothing slumps: when there is so much I need to get done that I do nothing.  Anyone know what that is?  I play too much "scrabble" and "words with friends" while I sit and look at the heap on my computer desk.

My laptop is running like a sloth and is in the floor of my office waiting to "target mode" it to do a disk check and repair.
I want to take all the photos off and have an external drive for my iphoto library.

I have yet to upgrade to Snow Leopard and now even that is a step behind.
I have a ton of household paperwork to get caught up on.
I have a ton of Dominic paperwork, too.
I have a couple house keeping chores that need doing, a tin kick plate to attach to the screen door to keep the cats in and to keep the door square, too.
Dominic's bathroom is getting a remod to give him a roll in shower and make it semi wheelchair accessible.  Not totally ADA but a lot closer than it is now.  I'm glad the state is doing that and not me.  I have had a plan to do it for a while, but now he really needs it and the state agrees, so I get to watch it get done!  One thing off my long term goal list!
I have been trying to get at least one thing done each day to keep some sense of momentum going.
Tomorrow is labs for me and time sheets so I can get paid for 150 hours/month of the 24/7 care Dominic requires.  Glad for that pay, though, because I could never work a regular job around his schedule.

Saturday is Home Depot Day.  Dom goes and does a project in the kids clinic.  He gets to hammer a hammer while we keep our fingers clear of the strike zone.
October will be another busy month for me.  Dom has two appointments and my mom has one.

Dom has another trip to Phoenix to adjust his VNS.  His seizures have diminished quite a bit.  Not sure if this next adjustment will bring the device up to full amperage or not.  The computer controls how much it can be turned up each time.

The next week we fly out to Memphis for his long-term survivor study appointments at St Jude.  We fly out on a Thursday and Friday we begin with  early morning labs and run run til the last appointment at 4:30pm.  Then fly home Saturday. The manager at our local Chili's restaurant wants us to come in next September and talk to the staff before their annual fundraising for St. Jude and give them our story so they have a better motivation.  Taking the big story of all that St. Jude's Children's Research Hospital does and making it local and personal.  I will take photos and video and make a disc for them to see what Dom does on his trips.
Then, just to keep things busy, in between these two trips we have Dominic's 28th birthday and Emily's 14th.
Guess I should head off to bed so I can get a full day's head start on October.

Thursday, September 01, 2011

Apple Tech

Well, I've been playing apple tech again.  I tried to replace a shattered touch screen on my 3gs.  I mangled some of the plastic along the side with the heat gun and somehow caused the home button to stop working.  I took it apart a couple more times as the double stick 3m adhesive that came with the "kit" didn't stick.  And even resorted to super glue. (it didn't hold the front glass to the plastic either.)  So it sits in pieces waiting for another "kit".  This one pre-assembled.  I just have to slide the LCD in and manipulate those specks of metal they call screws.  We hope to pass this phone on to my hubby when the iphone 5 comes out.  Looks like another month to wait.
I have a tab open in Firefox from World Mag, that talks about iPhone idolatry.  Now is a good time to read it while my iphone sits unavailable on the hassock and the $$ for the upgrade is gathering a miniscule amount of interest in the savings account.

Frank leaves in the morning on a motorcycle trip with Matthew and Emily to CA to help with a "sell this condo" project for Matthew's mom.  I will not have to cook real meals til Monday!  I do have a couple of projects to get started on and not having cooking to interrupt me will help.

Wednesday, August 24, 2011

  Dancing With Max
I just finished listening to "Dancing with Max" by Emily Colson with prologue and epilogue by Charles Colson. Having this book narrated by the author and her father made this story so personal. It made me an intimate audience to Emily's day to day struggle between Max's needs and the "system's" demands. Each person created by God is unique.  When you add to the situation,  that person's ability to have and enjoy all that life has to offer being laid upon the shoulders of another, it creates a divine tension. I love this person and will fight to the death for their well-being and at the same time, when and by whom will that same thing apply to me?  Listening to Emily tell the story really drew me into this struggle as well as giving voice to my own narrative. I am also a mother to a son with profound disabilities and through the outpouring of grace on his life I get to watch him touch and change lives by just being who he is.