Skip to main content

The UnMother’s Day

Today was a special day for moms across the world, but for me it was just another day.



I called my mom and wished her a happy day. I had found the perfect Mother’s Day card actually, one that is perfect for an inside joke between us, but I hadn’t sent it because she will soon be moving, and I fear with the slow mail service it would just get lost.


Otherwise, I spent the day making it a point to avoid Mother’s Day. It isn’t that I have any hostility to the day, or don’t wish mothers everywhere well; rather for me it’s a day that more than most reminds me that I don’t have children, and likely never will.


For years this idea was especially painful. With time, I’ve adjusted to it. God has his plans, and honestly, I don’t know how some of the moms with HPS, chronic health problems and small children do it. I marvel at them! They are truly amazing and much under appreciated by the rest of the world.


Yet, if I were one of them, I wouldn’t be able to do the things I do now for the HPS Network. I’m sure I wouldn’t have the energy, never mind the time.


Still, on days like this, I can’t help but feel a tinge of self pity as a little salt gets thrown into a long festering, and finally healing wound.


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