George Mark Children’s House

I’m at the George Mark Children’s House today.  Niko and I will spend the night here tonight.  This is a nonprofit facility that specializes in caring for children with complex medical conditions that may result in a shortened life expectancy.  They provide Transitional Care, Respite Care, Pain and Symptom Management and End-of-life Care.  I’m very happy to have discovered this place.  I’m quite surprised that a place like this exists in America because I’ve only read about this type of facility existing in Europe.  This makes me think of the old days in Russia when the sick would go to retreats or spas to heal. Scenes from the book, Anna Karenina, come to mind. This is such a compassionate organization designed to help people (like us).  It's still hard to believe we are a part of that "people like us".

We are here for respite care.  I’m going to spend the night here tonight. And Niko will spend one additional night without me.  I was actually nervous and riddled with guilt about leaving Niko here.  I thought that maybe she would be terrified about all the strange new faces, and would frantically… desperately search for me.  But she’s so happy here.  The object of this visit is so that I can see how Niko will respond to staying at a place like this for a short period of time.  This is our first trial run.  I'll most likely do another stay within the next month or so.  The goal is to actually take Mila on a short little vacation while leaving Niko under their care (and hopefully without too much guilt).    

The place is designed to look as “non hospital” as possible.  It looks a little bit more like what I expect a retirement home would look like.  It’s super clean and calm.  Every room has its own theme:  trains, beach, pirates, jungle, midnight moon, etc.  The nurses are extremely warm and loving and wear normal clothes, not scrubs.  In addition, they have volunteers who come everyday from 9am to 9pm.  The place is huge with lots of outdoor space.  Right now while I'm here, there are four patients including Niko, and about 30 on staff from what I can see.  

Niko is getting so much attention here I’m afraid she’ll be bored with me when we get home.  She’s constantly being held by someone or being walked around through their manicured gardens.  In fact, while one volunteer is holding her, another is pacing back and forth waiting for her turn to hold Niko.  Everyone here is baby crazy.        

This house is perched atop a hill in San Leandro.  When we pulled up the driveway we saw a family of deers running along the house.  

Niko's Room

Niko's Room's theme is Midnight Moon.  They hide the oxygen hookups behind a sliding panel to help you forget about the medical / clinical functions of this house.

Here is a visual identifier of Niko placed above her crib.

They are kind enough to give me my own room so that I can get some down time and hopefully sleep through the night for the first time in over 10 months.  I’m instructed to relax and rest while they tend to Niko all day and night.  But I have to admit; every time I hear her cry I jump up and go to her. It’s the primal maternal reaction that I can’t turn off.

My room.  There is a full size bed by the window that I'll be using.  The hospital bed is not enticing me.  

I get the "Treasure Trove" theme.

View from my room.  I can actually see Niko's room from my window.  

The "living room"

Kitchen.  They make three hot meals here everyday.  The kitchen is so spotlessly clean, I can literally eat off the floors here.

Art room

They also have a textile, sound and light room.  But I didn’t get a photo.  It's got all sorts of textured fixtures, rugs, dangling lights that look like jellyfish and moving images of art projected on walls.  It's like a trippy psychedelic techno rave party set to the music of Mozart in there.   

 This sweet playground gets little use.  Most of their patients are immobile.

Nice little sunny spot in the hall way (with St. Patty's decoration).  I've noticed that nurses love to decorate.  Is that a generalization or is it just me?

Sweet little elephant statue on their grounds

Another wonderful element of this Children’s House is the Aqua Therapy specialists.  This woman was ever so gentle and graceful, gliding Niko back, forth, sideways.  Niko was kicking and flopping like a fish.  And then I realized that this was Niko’s first time ever floating in water.  She loves her baths at home, but she’s never floated like this. 

I got to go into hot tub for Niko's aqua therapy.  I was stoked.

The therapist was showing me ways to move Niko around to "elongate her spine".  

With all this pressure to get my sleep on tonight, I have little confidence that I'll succeed.  Another thing that I didn't consider before hand is that special needs children are loud.  They make lots of grunting and whooping noises.  I now see the sweetness in that.  What I once thought was strange or even ominous about the behaviors of disabled people is now precious to me.  It's their meager way of communicating and there's beauty in that.  

Coocidentally a film crew is currently filming a movie on the grounds here called "Ever after ever" (I think).  It's about a man who lost his wife due to cancer and eventually discovered that his daughter was diagnosed with the same cancer, an all around cheerful feel good movie.