Kara Lynn .NET Blog

Aiden and I really enjoy Sophie Ellis Bextor. This song speaks for me.

Silk Nog with rum and a sprinkling of nutmeg. Now I can say “let him decorate, let him decorate, let him decorate.” Yes, Lew is trimming the tree that I had always trimmed. I know just how I want it… but that’s just a memory now. Oh dear… the beads look thrown, not swagged… why did I look? Turn around… sip more Nog. Dull the sense, the awareness, the reality of my locked-in energy… my torturous inability. Some more Nog for me, please.

None. No decorations on my tree. They wait in the box. No Christmas. No ability. No family. No friends. None.

I can not stand all the twisting, side-stepping, dangerous reaching anymore. I want a dumpster and a crew of sturdy men with muscle to take all this shit out of here! I want a barrier-free life. I want I home I can move through.

Looked out the window this morning. I have my path.

I asked Lew to use my snow blower to clear a path for me from side kitchen door to street. My only way out… no stairs. Still waiting. Hope he will pull himself away from his iPhone games long enough to clear a path tonight. I’m so very tired of asking. I bought the snow blower, complete with electric start, to make his life easier. Not easy enough, it seems. Nothing I do will ever be good enough.

Snow, snow, snow, and now more leaks. It’s raining in my kitchen. I don’t even want to look in Aiden’s closet… The door is stuck anyway. Just as well. The ice on the walls and floor would only make me cry. I always took care of these kinds of things. Now I am forced to remain passive while my home is destroyed.

It rained all day yesterday, all night last night, and continues this morning. Several schools are on delay. We kept Aiden home. Don’t know if it’s icy yet. The basement is flooding again. I can’t do a thing about it. Lew left at 8. Rosa won’t be here until 12:15. Aiden will need to use the potty, have his diaper changed before then. I can’t do a thing about it.

Facebook For Good Entry from on Vimeo.

This PSA by The ALS Society of Canada so accurately captures the reality of life with ALS.

ALS Matters

I know it’s difficult, heartbreaking to watch. I see myself and Aiden so clearly in this PSA. The reality of this disease is that it can destroy families. People just have no idea, and many/most don’t want to know. I am determined to heighten awareness about ALS. People living with ALS are basically written off, left for dead by the medical community, and sadly… by society. That just is not acceptable. People need to understand what we are up against, what we, and our families have to deal with. People need to be moved. People need to stop looking the other way. This disease needs to be stared in the face, and battled. ALS can strike anyone, any family. It IS your worst enemy. Fight it!

-kara