Skip to main content

Sleepy Weekend

Pictured are two of the younger members of the Adventure Fitness Camp Fire Club at a picnic at Loose Park, April 2006.

It’s Sunday afternoon, and I finally feel reasonably normal, after a LOT of sleep. I came home from work Friday feeling pretty frustrated with work, which is pretty much the norm these days. Cranky would be a good word to describe it. I turned on the TV, stretched out on the couch, and woke up about four hours later. By the end of the week I’m always so exhausted.

I was supposed to take care of my Godchildren this weekend, but for the fourth time their parents cancelled. Kaylen was sick, and Lord knows if he’s sick I’d just prefer he stay at home. Not that I mind caring for a whiny baby, but I just can’t get another bug. It was fine since I’m so behind. I thought not having the kids would give me a chance to catch up. Truth is short of getting a month off, I’ll never catch up.

I slept in way too late on Saturday, and then decided to join the camp fire group at Loose Park for a picnic. I really should have been working on the HPS Newsletter, cleaning house etc. – but a girl’s got to have a little fun now and then. And I did have a lot of fun!!!

Lady, one of the new camp fire moms, who it turns out is from Puerto Rico, brought the best potato salad ever. It had apples in it. Yum! And, my rather fat bottom was aided in its expansion effort by some Kentucky Fried Chicken, something I never treat myself to, but I love fried chicken!

Most of the kids took off after the running practice and didn’t hang around for the picnic, which was a disappointment because I really wanted to see some of them. But the smaller kids stayed around to play on the playground. I usually don’t get to work too much with the smaller kids. The other volunteers sort of flock to them, and some of the older kids actually have more need for one-on-one.

But yesterday I got to spend quite a bit of time with Isabella and Demetria.

Afterwards, Tina, Amir, Tina’s neighbor Margarita and I spent the evening at Tina’s complaining about our jobs, our crappy weeks and drinking wine.

I didn’t get home until about 1:00 a.m. I don’t think I fell asleep until the sun was coming up. I don’t drink much (haven’t since the Hermansky-Pudlak Syndrome family conference in February) and so a few glasses of wine really gave me a headache.

Now that my fridge is cleaned out, its time to get back on the diet wagon.


Comments

Lori said…
Heather that is an awesome story of the girls. My boys Josh and Danny are also in that same study. That is the study that I am looking for the older jewish woman that I posted on Albinism.org. I read the article to Danny, he's 15 and plays percussion. He thought they were cool too. Thanks for sharing that.

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

The blog is back, I hope

  What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again. Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin. I’m trying to start with small goals. Right now, I’m h