wakingupslowly's Open Salon Blog

Update on Braden: He Left the NICU and Is HOME

Thu, 18 Nov 2010 12:11:15 -0500

I promised to keep folks updated on this beautiful baby, so here is the wonderful news:

Braden went home yesterday! After nine and a half months in the hospital, he went HOME! He slept in his own bed in his own room in his family's house last night. This morning he woke up to see the smiling faces of his parents, his twin bother and two year old big brother. Happiness abounds up there in that sweet home.

The private insurer never did allow him to go home under their plan. In fact, it was their denial to pay for in-home care that kept him in the hospital for seven and a half extra months. He went home with the nursing care he needed under a special Medicaid program we have for kids with special health needs. We are only one of a few states who passed and implemented this federal option under Medicaid. Actually, it was the very first bill I ever testifed about and lobbied for at the state capitol. Very cool to see it working.

So, he's finally home. For that we are all thankful.

Thank you for caring.

Original Post about Braden

Your Hand Resting on my Thigh, Now

Fri, 16 Jul 2010 08:07:56 -0400

After, in the fertile darkness of the room,

a sheet slathered over our lower

legs, your hand, its weight measuring out

our intimate dreams, rests on my thigh, now.

Your palm arcs slightly where

my thigh curves inward. My hand

reaches down to yours, quietly

patting your wrist, then a soft tangle

of fingers. Your sated sigh, full in its breadth

and width, sounds like a hum. Your breath moves

through your hand to my thigh, before you exhale

into the night. Your heart and breath, harbor there

in your hand, resting on my thigh, now.

Upon Waking

Wed, 14 Jul 2010 05:07:40 -0400

The first

waking moment trembles, like

the tree leaves in the velvet wind

outside my bedroom window. My eyes

consent to the light or darkness and seek

a recognized bit of truth - the floor, a well-

studied ceiling, or the regular, sturdy view out

the window.

Right before

I can feel that precious sting, that hopeful

pierce of joy because I am awake yet

again, I hear or feel or somehow

sense the rest, the other as it looms. I know

to give it a second. Let it shape itself

and approach. Sometimes it feels like I am beneath

a just fluffed sheet, stretched out over

the bed as it begins its fall. Scarcely

but methodically I feel it drape me, swathing

my naked body. My resolute companion, it

will be there at every waking now, like

floor, the ceiling, the window’s tired view.

I half

sigh and half moan aloud, then close my eyes

while I accept what is not and what will ever

be. Waking to this tires me more

than the miles I walk in the evening dearth, more

than the sleepless nights and weary

mornings, more than believing in a past

that no one else can see. (Hard truths sink

in slowly, like rain pounding against a drought-

wrought field in late July.)

Bracing

myself, I slide my feet

on the floor, not firmly, not grounded, but leaving

footprints anyway.

I Don't Do FACEBOOK, But If You Do, Will You Please...

Sat, 10 Jul 2010 08:07:47 -0400

I Don't Do FACEBOOK, but if You Do, Will You Please...

join this particular one? Bring Braden Home Facebook Page

Braden with his twin brother, Jacob.

That is the site for a little boy, Braden, who is just five months old, who needs to be able to go home from the hospital. He needs to live with his family. He needs to meet the two year old brother he has never seen. He needs to sleep in his own room, in the same house where his parents and his brothers live. He will always need medical care in his life, but he could have it provided at home, at a much lower cost, and live with his family instead of alone at the hospital. Right now the insurance company is refusing to pay for the in-home nursing care he needs with his ventilator. They will pay for hospital care "forever", however.

Braden's story is best told by his Mom, Amanda.

A few weeks ago I contacted some folks in DC on Braden's behalf, and they asked me more questions than I could answer, so I asked Mom to write the response herself. She wrote it beautifully here: Mom's Letter to Sec. Vilsack and Senator Grassley

As a child health advocate, I have to say, that letter is the best I have ever read from a parent.

I am trying, along with many other people, to bring Braden home. His family is using many tools to get the word out, and Facebook is just one of them. Please add to their number of supporters; it will help the cause. For Braden and many others like him, this insurance rule has to change to allow them to go home to their families.

On the weekends, if Jacob doesn't have a cold or something else, he goes to the hospital to visit Braden in the NICU. Their two year old brother, Evan, is not allowed in the NICU until he is three. Thus, he has never met Braden.

Thank you, kind OSers. I know joining the Facebook page doesn't seem like much, but we really can use it in our work to promote this issue and to get this policy changed for Braden and all the other children who are stuck.

Braden really deserves to live his life at home with his family.

What Your Son Did This Weekend at My House

Tue, 6 Jul 2010 10:07:24 -0400

He's your boy, and my daughter seems to

care for him, as much as one 21 year old cares

for another, both slack and profound,

all at once, like a bungee cord wrapped tightly

around the body. After the jump from the bridge,

the limp cord appears, ready to pull and dangle.

My house is not an easy place to visit lately, with

an old senile dog who guards shadows and his

hallucinations, making a full night’s sleep a

has-been dream. (Your boy didn’t complain.) Not

peaceful, I wander about at night, too, and sit

on the back porch or in the dark living room.

The dog's yelps provide good cover for such

early morning restiveness.

He told me about your long lost pets, a neighborhood

feud, and funny stories of your family vacations. I

learned things I bet you wouldn’t want me to know

just yet, if ever. (It’s okay. I understood what you

meant when you once told his teenage brother

you could “happily leave him at Disney Land.”)

On Friday afternoon a young man I didn’t know

died in a freak car accident up the street from me.

Your son held the water-filled vase in my front

yard as I cut stems of purple coneflowers, black-eyed

Susans, and white and purple Bee Balm.

He was the one to place the vase there against

the fence where the young man crashed and instantly

died two days before. Our flowers joined another

bouquet to sit in reverence while the rain washed

away the stains in the flattened grass.

One day in to his visit, I asked him to help

me. “Please,” I said. “I need to trim that shrub,

the one that thinks it’s a tree. Will you help?”

I ignored my daughter’s rolling eyes and smiled

when he leaped up. He sliced the too high

branches, the ones I struggle with every year. When

he was done, my daughter said, “Mom, thanks

for asking him. He likes to help out.” I know,

dear girl, I know. (His parents raised him that way.)