Skip to main content

Move Update

Thank you so much for all of the folks who have helped fundraise for me to make this move possible. With your help, and my family chipping in as well, this is going to be possible. I don’t know what I would have done without all of you.

I am now medically cleared to move. We are through the HPS Conference. I have a moving company lined up (unless I decide to go with a plan B) and about half of my things are packed now. I’m scheduling the Salvation Army to come and get the last of the furniture I don’t plan to move including: a couch in very, very, very bad shape, two small bookshelves, a drafting table, a large (and very heavy) desk and probably two bags of other smaller things. The hold up right now is just finding the apartment. We have several leads so I’m really praying we can just line something up and get it done. If we don’t find something very soon, I may go ahead and leave for Virginia and have my mom finish the pack-out on this end.

Boy is moving expensive! There’s the increase in rent, the application fees, the security deposits, the cost of the movers (which pods or not is going to be in the $3,000 neighborhood) – and that’s just the beginning!

I feel stressed out all the time. I just want to get through this and come out on the other end and have my life level out a bit! It’s like pulling off a very large and very sticky band-aid one hair at a time! Let’s just rip that sucker off!!!! Grin!

Sometimes how I am doing changes even in the course of a day. I’ll have a really good day, and then suddenly, out of no where, break into tears. They aren’t specific tears – just sadness about the entire situation.

Even though all kinds of strides are being made so that Finley can come to Virginia, I can’t get rid of this horrible fear that something will happen at the last minute to keep that from becoming so. I love him so much! I’d rather chuck everything I own if it meant I could bring Finley. I worry about him a lot in this process.

I am trying very hard to focus on the things that will be great about moving. Access to public transit and being near Ryan’s family are top on the list. It turns out Finley can even ride the metro with me! WooHoo…how fun is that going to be? We can explore together!



Someday, after I’m settled, I want to have Ryan’s kids over for a slumber party (even if they go home to sleep as they are pretty young and might find a slumber party scary.) I haven’t seen the movie Frozen because I am saving it to watch it with them. I’m sure before long I will have seen this movie a thousand times! We can settle down to watch with everyone in their PJS – the kids, Finley and me! What a picture!

Comments

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.

Help for one of our newest HPS friends

As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her. Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday. Here's the post: Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis. With the family’s research and the recollect