Let's Stay In Touch!

"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 pit for food and has given us her first temperamental days. She also has started whacking her hand to the ground when she's displeased. For example, Paul was eating a protein bar that she wanted, "more more more"

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 my life have happened since we’ve gotten the diagnosis. Acts of kindness and love that keep us standing. But also, we are deeply grieving while we are also living, hoping and fighting. And some people just don’t

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 live near each other in Los Angeles with our other close knit law school friend Vickie until a few years ago when everyone got married and Diana moved to Arizona, Vickie moved to Washington, and I moved to the dist

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 party while Marian and I traveled to Chicago. Loved getting these beautiful photos and seeing her happy face while away from home! #carousel #friends #birthdayparty

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 not the time for talking it's time for dancing." Not exactly winning points on the empathy scale. Luckily, Saturday, the day of her ballet recital, it was only 100 degrees. Yet, the show must go on, and the gir

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 like to think Marian has developed the same way, slow and steady progress the whole time. And I do think she was born with mild NPC impact from the start, which most kids are not. And she has made slow progress th

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 whole row to ourselves on Southwest - heaven! Our Uber driver when we landed was a former Marine current Army from Tennessee. Got us to our hotel swiftly where they ordered groceries for us so we could let Mari

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 around Marian dying. I was watching The Suffragette with Carey Mulligan about the movement for voting rights for women in England at the turn of the century - man that looked rough. I was hearing Marian cough a