Category Archives: Parenting

Where is my mind?

I’m not feeling well today. I want to write an entire blog using only Emoji’s: a raincloud, a cough machine, a devilish dog, a child sneaking candy, a burgundy nurse with arm muscles like Popeye.

It’s just a cold, but another cold is not what I needed right now. Yesterday was the last day of the official #WhatWouldYouGive challenges, but it looks like the campaign will continue as more team members give up abilities into August. We might extend the whole thing even longer, because why not? We haven’t cured ALS yet, despite all the talk you hear about breakthroughs.

Breakthrough is a funny word. And every time I read an article using that word it reminds me of when I worked in book publishing and we called every book groundbreaking. They weren’t. But you can say whatever you want when you’re trying to get people’s money and attention. Read More>

|Categories: Cure, Drugs, Life, Parenting, Relationships, Research, Venting | Tags: , , , , | Permalink

Summertime

Scarlett is staying home from camp today. When I asked her to get dressed, she ran to her bedroom and got back under the covers. She was wearing my nephew’s underpants, and two of his T-shirts, and seemed far too comfy to get moving. I mostly understood. It’s been a busy summer, and not at all the kind I used to have when I was a kid growing up in Oak Park, Illinois.

In those days, we didn’t do camp. We played outside, often right in the middle of the street or the alley, we went to the pool or danced in the sprinkler. Basically we entertained ourselves along with the other neighborhood children for three months, and sometimes we went on vacation to a Holiday Inn in Indiana or Ohio, or to my uncle’s cabin in Wisconsin where we swam in the lake and hooked wiggling minnows and leeches onto fishing rods that we cast out into the shining water over and over.

Scarlett’s summers are different. Read More>

|Categories: Cure, Drugs, Life, Parenting, Relationships, Research | Tags: , , | Permalink

Not My Finest Moment

It’s been a frustrating few days. My wheelchair footrest has been broken, and I’ve been trying to get the company, California Home Medical Equipment, to fix it since May. I won’t even go into all of the mishaps between then and now, except to say that they finally picked up my chair on Wednesday, and left me with a loaner that makes the electric chair seem like a lounge seat on Air Force One.

The loaner chair was rock hard, and too big for me, and I couldn’t reach the button I needed to push in order to switch the chair from driving mode to seat adjusting mode. It was a very uncomfortable two days, and I called the company right away to tell them I needed my chair back. They were supposed to make many changes to it, switch out the battery, revamp the armrests and the controls which are becoming harder for me to use, and do a general maintenance check since the chair is now two years old. But I couldn’t stand one more day in the loaner from hell, so all they fixed was the foot rest, and now I’m getting my still-flawed-but-sorely-missed wheelchair back. Read More>

|Categories: Life, Parenting, Relationships | Tags: | Permalink