HOPE FOR MARIAN

A MOM'S JOURNEY TO FIGHT FOR HER DAUGHTER'S LIFE...AND SOME

EVERY DAY STUFF TOO

Sandy Beach

May 30, 2017

 "More More More More" is the theme of the last couple weeks for Marian, she signs more over and over and says, "moe" and then swipes her hand across her chest a few times signing please for good measure, all while maintaining intense eye contact. She is a bottomless p...

May 27, 2017

My daughter is dying. Maybe. She has a fatal and progressive genetic condition. She is one and a half years old. There is hope for her with experimental treatments helping to stall the progression, but still, it’s rough. Some of the most beautiful things I’ve seen in m...

May 24, 2017

Two of my best friends from law school traveled to Chicago with Marian and I this time. I didn't realize how much I was missing and needed time with them until we were all together. Kim, Diana and I have been a trio of friends for over ten years now. We used to all liv...

May 24, 2017

 These two have been friends since birth and are two of four members of our "baby play group" (comprised of four four year olds, four baby siblings, and four incredible, life saving, moms). Paul took Emily to the Santa Monica Pier and Aquarium Sunday for a birthday par...

May 24, 2017

This weekend Emily danced her heart out in two dance recitals. The first was at her nursery school, on stage her best friend at school started crying during the dance. Afterwards I asked Emily why her friend was crying, she said, "I don't know, I couldn't ask her, it's...

May 10, 2017

Marian is doing so well. Emotionally it's little unsettling in a bizarre way though. For all the small achievements or changes she is making is a realization that the gap of where she is and "should be" is larger than I recognized in some ways. It crept up slowly. I li...

May 2, 2017

I wrote an entire blog post about our second treatment and I did not save it. Oh well! Here are some pictures that tell the story of our trip, for the record Christine is 20 weeks pregnant and did 100% of the uber carseat installations. Bless her.

 Up and away! We had a...

May 2, 2017

Last night was a rare occurrence, I was the last one awake. Which is particularly surprising since two nights ago I fell asleep lying on the ground in the living room at 8:00 p.m.  So last night I was the last one up and was left with my thoughts, which kept centering...

Please reload

Recent Posts

March 15, 2019

October 23, 2018

April 16, 2018

Please reload

Please reload

Tags