Girl with a Stroller

Last weekend we went to the DeYoung Museum to see Girl with a Pear Earring and other works from Dutch artists.  The museum has a no-stroller policy.  I suppose it’s to protect the ankles of unsuspecting gazers in tight spaces.  They were trying to protect people from potential offenders like me as I arrived armed with an umbrella stroller. 

When I approached the entrance they informed me about their policy. They directed to me to the coat check to stow my stroller.  I didn’t want to carry Niko the entire time in the museum so I asked if it’s absolutely necessary to check my stroller.  The coat check woman suggested that I talk to the security guard to obtain an approval on my stroller.  I walked to the security guard and asked her if it would be all right to keep my stroller since it wasn’t very large and I was quite proud of my maneuvering skills. 

She looked my at stroller and asked, “Is your child disabled?” 

I froze.  I think this might have been the first time someone asked me this question point blank.  I mean we get looks all the time but, really, what baby doesn’t get stares (good or bad). 

“Yes,” I managed.

“Ok, let me check for you.  We can maybe make exceptions for the disabled.”  The security guard then called into her dispatch radio, “I need a stroller approval for a disabled child.”  I heard it echo across every radio in the entire museum.  I know it was in my head but that’s the way it played out for me.  She then repeated over the radio, “I need a stroller approval for a disabled child.” 

The radio replied in a crackling voice, “Go ahead.  It’s fine.”

I got the green light and wheeled Niko towards the ticket collector.  I hid my stinging face as I handed my ticket.  I don’t like the idea of playing the special needs card.  And I’m ashamed to admit that I quietly cried through the whole Rembrandt collection.  Why am I still so damn sensitive?  By the time I made it to Vermeer, I collected myself.  And this luminous face took my breath away.  It’s as if she was looking straight at me with a little bit of hurt and understanding in her eyes.  The rest of the day was sunny and beautiful.  

RIP Nikoly

Another I-Cell child passed away today.  She was 6 years old and lived in Sao Paulo.  She spent her life being an active little girl - tube-free and curious.  The photographs that I saw of her were oozing with personality… climbing around on her couch, scooting on a tricycle, playing with animals…  

Rest in peace dear Nikoly.  

RSV is an asshole.

I was just starting to feel relieved at the end of this RSV season.  Niko got her last RSV shot of the year last week.  I love the kind and gentle nurse who administers the shots but I really don’t want to see her again until next year.  Upon leaving the office she did mention that they usually see the rush of RSV patients at the very end of the season.

RSV can cause a bad cold for healthy kids but is extremely dangerous for I-Cell kids.

A couple weeks ago, two I-Cell kids, Dori and Wynnie (three year old twins), were sick with coughing, fever and congestion.  After a week of this, their oxygen levels dropped to the low 50s and did not pick up.  So they were rushed to the ER.  Wynnie arrived gray in colour and his lips were blue.  They were both given oxygen but poor little Wynnie needed more than just the O2 mask.  His body was getting weaker and weaker.  So the doctors intubated him.  Intubation is one of the biggest fears among the I-Cell families.  It’s highly risky for I-Cell kids and can often cause more harm than good due to their very narrow air passageways. 

It turned out that both kids had RSV.  Dori slowly improved although his heart was enlarged substantially from the virus.  Wynnie remained in critical condition.  Aside from having RSV, he had pneumonia, anemia, pulmonary edema (fluid in his lungs), excessive thick congestion, constipation, and bacterial infection in his lungs.  The following day, his lungs collapsed.  The doctors paralyzed him for 24 hours to give his body a rest and to allow the machines to fully breathe for him. 

This morning an X-Ray of his chest showed that he is doing a little better and he may let be able breathe with the vent soon. 

The reason why I’m including such painful details is because these I-Cell kids go through so much without losing their fighting spirit.  They remind those of us who are lucky enough to be healthy that we ought to be grateful.  

Perhaps I've again become unreasonably affected by the critical condition of another I-Cell child.  My heart is pounding, my hands are shaking.  But they have taught me that life is fleeting.  Everyone says, "They have so much to teach you."  I used to be resentful of that patronizing statement.  I couldn't simply sum up Niko's terrible life sentence as a lesson to be learned.  However as much it pains me to admit, I am slowly accepting this.  These tiny souls in these tiny compressed bodies are teaching me things.  I look at them with such respect.  "Wisdom comes alone through suffering" says Aeschylus, founder of Greek tragedy.  If that is true then our little I-Cell babies are volumes wiser than us and undoubtably teachers to those around them.   

Dori keeps asking for Wynnie at home, calling out “Ninee”.  Please get well soon Wynnie.

         

Happy 5th Birthday Claire!

This Saturday, we celebrated the 5th birthday of another I-Cell kid, Claire.  Using the math from my unsubstantiated I-Cell age converter, Claire is 56 years old.  

It felt so good to see her and hold her.  We've met her before, back in September of last year. I was still so stunned with the diagnosis at that time that I couldn't really appreciate the magic that Claire exudes.  This time, I just sucked up all the tender specialness that I've come to appreciate in I-Cell kids. When Claire smiles, I melt. I can't adequately describe the feeling of holding another I-Cell child.  To borrow a hood term, she's a "sista from anotha motha." And this time Niko is six months older so she was able to interact a little more with Claire.

Here are some shots.  It was hard to keep them still for photos.  This was the best we could do.

 

George Mark Children’s House part deux

We made it through the weekend. 

I spent Friday night at the George Mark house, in my own room.  I had my (super heavy) door closed and didn’t hear a peep from anyone.  I did wake up a few times, not because of any external disturbance, but because Niko has programmed me this way.  The next morning, the night nurse told me that Niko was fussy on and off through the night but not too bad.  She then gave me a bear hug.  The night nurse was a hugger.  She was so sweet.  She genuinely seemed like she cares about the children and their families.  In fact all the staff seemed that way.     

When I left Niko at the Children’s House on Saturday morning I bawled like a baby.  I couldn’t even look at her.  I slowly walked out with my head hanging low.  I was pathetic.  I felt like I was punishing her for being born with an incurable condition.  The act of leaving her behind felt as if I was somehow rejecting her.  I knew it was just guilt tricking me into self-assassination.  But I couldn’t shake it. I knew that this stay was going to be harder for me than for Niko. 

Saturday night I thought about her all night.  I only called to check on her twice (I’m proud that I contained my anxiety and didn’t embarrass myself).  The first time I called, they said that Niko ate well and was being walked around by a volunteer.  They also told me that she was scheduled for aqua therapy within the hour.  The second time I called they told me that Niko had her last feeding and was already asleep.  She was pooped after being in the spa.  Her night was more glamorous than mine for sure.  For my night away from Niko, I had a Mexican dinner with Kiril and Mila and went to a bookstore.

But oh that Saturday night! I had a delicious full night sleep.  I felt like a zombie the next morning.  I believe my body was in shock. 

We went back the next morning to George Mark.  I found Niko surrounded by three volunteers.  She was the center of attention.  She was asleep on volunteer #1’s lap.  She had just received her own private puppet show from volunteer #2.  And was being gently stroked by volunteer #3.  I couldn’t wipe the smile from my face.  One of the nurses told me that Niko slept very well Saturday night, I think almost through the night.  This place is magic. 

This entire experience at George Mark Children’s House was very humbling.  I feel like we are all stripped of our external layers when we walk through their doors.  There’s no pretense, no judgments, no shame.  They run this organization in such a humane manner.  Everyone I met is warm, caring and genuine.  They know what my life is like without my saying a word.  Everyone from the nurses to the nursing assistants, the intake coordinator, the therapist, the volunteers, the cook, the housekeeper, the security guards, all the way to the ladies who do laundry…. it’s like they have somehow figured out what matters in this world.  I know I may be reaching, but when you’re overwhelmed with the pain, stress and exhaustion of caring for your lovely little broken baby, and suddenly you have people who pull you up from the well and tell you to sit back and relax while they do the work for you, you would think that you’ve met some angels too.  The word “humane” just keeps coming to mind.  They are human beings who help.  And I didn’t realize until now that I’m a human being who needs help.

Of everyone I met, I’m most impressed by the volunteers.  This place has a steady flow of regular volunteers who are dedicated to helping children in need.  Many of the children have conditions that are terminal.  That very thought lodges a lump in my throat.  And yet these volunteers come and walk with the children, they talk gently to them, they hold them for hours, they entertain them.  They do this in their own time without anything in return.  I suppose what they get in return is an occasional smile, maybe a laugh, maybe just sustained eye contact.  These people are better than me.   

I’m so happy that this worked out.  I look forward to coming back. 

Sometimes people ask me how they can help.  They offer to cook dinner for us, or grab groceries.  They offer to hold Niko while I cook.  But what I would love is support for George Mark Children's House by means of donation. That would mean the most to me.  

A certified nursing assistant, the wonderful volunteers and Niko's crazy hair

All wrapped up and ready to return home

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.