Thursday, December 22, 2011

Minor Complications

I have to take Wash to the doctors' again; he's either having night seizures again/still or has

developed Sleepwalking (which may be seizures as well). To keep myself from freaking out


thoughts of him falling to his death on the stairs at night or just walking out the front door, I'll

tell the funny things he does in his sleep;

*Turn off all alarms on clocks and cellphones / re-set the digital clocks

*Tried to make the bed - with me still in it at 3am

*Tried to fold a blanket- again with me in it

*Took a jar of jelly out of the kitchen and placed it on a bookshelf in the living room

He will see his Internist today and hopefully his neuro will get him in in the next few days. The

last few times it has been "not a tumor". Every single time this happens that is what I wonder

and worry about; is it time now? Has it finally come back? This cancer has a 98-99% rate of

return. It's a "when" not "if". Neither of us is ready to fight another tumor. He's had two years

post surgery. That is both so short a time and so long all at once.

It does help to explain some of his behaviour this past week. His 4 hour afternoon naps make a

little more sense.

Right now every bit of good we can get means so much. I know but I'm not ready to admit

what is to come. I'm not ready to face the pain and grief that even denial will not save me from.

This story, our story, will not have a happy ending. Interludes perhaps, but little glioblastoma

multiforme does not make for "ending" that society loves to see. There is no cure coming

down the line. I HAVE to make the best of what we have, because there is no deus ex machina

for this.

So, we are going to try and go out to enjoy some lights tonight. Do some things with the

family. It is still my job to give him a Quality of Life high enough that he wants

to live. Sometimes that means holiday light displays, hot chocolate, and Tashi wearing closed

toed shoes. And snow.


  1. #1) In your wonderful posted video from this past Wednesday, 12/21/11, Tashi, Dr. Cara Wright of Children's Rehabilitative Services (CRS) at St. Joseph's Hospital in Phoenix, said this:

    "It was really amazing because----(with the robbery)----you're left with just shock and awe that there are people like that out there; then that's really minimized by............ All Of The Goodness That Came Out Of People."

    #2) I hope and pray *A.L.L.* the time............ (and I've also said this to my younger sister, too, whose teenage son has, *very sadly*, a more-severe type of Crohn's Disease)............ that, during the very difficult time ahead, you & Wash will continue to be the recipients *O.F.* some of that "goodness" that can come from caring, empathetic people............ i.e., in whatever/however/whenever/wherever FORM that might happen to take, you know.

    My sister and her husband have very understandable/legitimate Parental Fears about "what might happen again" medically, on *A.N.Y.* given day, to their teenage son............ as you do with Wash. During those really, REALLY hard times in my dear nephew's (now 4-year) Chronic Illness, my sister and her husband have often felt almost numb in having to FACE their son's (and their own personal) pain and grief AGAIN; but, as you've said, even Denial, however, won't save you from............ the very worst pain and grief.

    #3) As my dear sister and her husband are doing----(and as you've already been doing, Tashi)----and despite their own parental fears, pain, and grief; (and my sister's very strong, *F.I.E.R.C.E.L.Y.*~~independent personality!!)............ when any Gesture Of Help is *offered* now, (i.e., in whatever/however/whenever/wherever FORM that might happen to take), they're ACCEPTING............ that "goodness" coming out of people that Dr. Cara Wright eloquently talked about, Above............ and they're also simply enjoying their (comparable versions of) nighttime holiday light displays and hot chocolate, too............ with their ill son.

    In some ways, it's like your love for Wash is now............ i.e., giving, yet accepting of any/all Others' Goodness; and very *courageous*. As you, too, know well, Tashi, it's............ Love In the Time of Fear, Pain, And Grief.

  2. (((*h.u.g.s.*))) to you and Wash, Tashi............

  3. For Crohn's...check out Specific Carbohydrate Diet or GAPS diet. In conjunction with regular medical care they might be helpful.

    They are hard but did wonders for my daughter-in-law.