Back in the Hospital

Errol is back in the hospital, this time at Duke Medical Center.
He's been diagnosed with endocarditis.
He's in pretty bad shape but he should come out of this just fine.
We'll be in the hospital at Duke for a week. We just got the diagnosis and don't even have a room assignment yet.
We'll try to keep you updated on Errol's progress.
Poor Errol. Life is not fair.

Health Reform Video Challenge Finalist!!!!

Citizens,

Wonderful news!! Seeds of Love for America, an ad featuring Errol, is a finalist in the Organizing For America Health Reform Video Challenge. Go to Organizing For America to vote for Errol's ad by November 3rd. And please spread the word to friends and enemies.

Here's a video of Errol getting the good news

Something's Got to Change

Citizens,

Check out this beautiful story that our wonderful friend David Ford has put together with friends Josh and Eric from the UNCSA film school.

Cary and I have been incredibly fortunate to have our wonderful community supporting us in our time of need. Not everyone is as lucky as us, and our country needs health reform now.

If you live in the United States let your U.S. Senator or U.S. House Rep know what you think about health care reform. And if you like this video please share it with others.

Thanks David, and thanks to all of you!

Errol as Errol

After a week of respiratory therapy and medicine, Errol is acting more and more like Errol. He's just been to the pediatrician for a check up and his blood saturation rate is 86!!!!!!!! Go Errol! What a relief!

It's hard having a child.

It's really, really, really hard having a disabled child.

Errol is like an Easter egg that hasn't been boiled.

Beautiful but fragile.

Pass the Penguin

The day after our long date at the emergency room, Errol and I headed back to his pediatrician who, by then, had gotten the results of his labs and slides. Errol has pneumonia.

So the doctor has prescribed antibiotics, fluids, sleep, and twenty minutes a day with the penguin nebulizer.

We had been terrified that Errol’s lethargy, vomiting, low sats, and general ennui was a product of a structural problem with his heart, and we are celebrating that it’s just pneumonia!

This is something like pneumonia #7 for Errol, and we are just far enough out of this latest crisis to see the big pattern emerging: a boy with chronic sickness. This is more like a marathon than a sprint, and there is no finish line.

So we won’t hurry. And tonight we are happy where we are. The penguin is firing on all four cylinders, the meds are kicking in, and Errol is feeling (and looking) a hundred times better! Penguin anyone?

A long day

It was a long and miserable Wednesday.

It started out well enough.

Errol's class went on a field trip to the Dixie Classic Fair where we saw his friend Abrion.

Then we went and looked at some big watermelons,

some rather large veggies,

and one titanic pumpkin!

We met a sheep who wasn't thrilled about her new hair cut

which led Errol to wonder if he might be next.

We left the zoo and headed home where Errol turned more and more blue and everyone was getting anxious.

The next thing we knew we were in the emergency room getting an x-ray

and a nasty IV to the arm and a nasal canula in the nose

it was a horrible and long day.

But Errol is resilient, and two days later, he's getting his color back and feeling much better.

Welcome back Errol. We missed you!

Home again, home again, jiggidy jig.

Errol is home! Hooray. He just has the flu (not that flu, just the seasonal flu). Still, the docs wanted to keep him overnight in the hospital, but I badgered them until they relented and set us free. Errol is on Tamiflu, which should make him feel a lot better, really fast. It was a crazy day, and we are glad to have it behind us, and mostly, to be home.

Walking Pneumonia

Errol has walking pneumonia and is headed back to the hospital. At least it's not his heart, but we are not happy that poor Errol is sick.

We'll keep you updated.

Standing Up!

Errol is really making great progress standing.

Now if we could just do a better job of learning from Errol how to enjoy life!

Brothers In Arms

Owen loves Errol, and Errol loves Owen more than anything in the world. Errol woke us up at 5:30 this morning. I put Errol on my bed to change him and Owen ran in and curled up next to Errol to comfort him. Errol cried and cried, and Owen said, "It's ok, Manny." as he smothered him with kisses on the forehead and check.

Errol isn't exactly a typical brother, and in many ways, Owen is an honorary only child. On a recent rainy and lonely Sunday afternoon I told Owen, "I'm sorry we didn't give you a brother you could play with." But optimistic Owen, thinking about some of his friends and their siblings said, "That's ok. Errol and I don't really fight. He can't talk!"

We'll hope Errol proves him wrong, and that Owen loves him for it.

Space

The space between life and death is usually wide.

At times, with Errol, the space between life and death has become a razor’s edge we’ve had to tiptoe across.

The thinner the line the more balance and concentration it takes to stay on it.

Although Errol’s blood oxygen level is lower than we’d like, today Errol shone and the space opened up wide.

We danced through the sun-dappled living room and spun into oblivion.

It was a beautiful day.

Between Tears and Laughter

I’ve been tugged back and forth between tears and laughter today.

As I drove the boys to school this morning we saw an ambulance’s flashing lights ahead. We slowed and craned our necks to see paramedics on the side of the road crouched over a fifty-something man, compressing his chest, pumping oxygen into his lungs.

“That’s bad.” I said to the boys.
“Why do they have a mask on his face?” Owen asked
“He can’t breathe. He’s in big trouble. The mask will help him.”

As the man’s life slipped away, Owen, Roman, Errol and I drove on to school. By the time we hit the parking lot the boys were smiling and cracking jokes. “They were making his stomach fat!” “They were trying to blow him up!” They howled. I tried not to listen to their merry voices.

I dropped the big boys, and then Errol at his school and headed on to mine. By now the man was either dead or in the hospital. The boys had long forgotten him. I noticed an odd car behind me, a Nissan Cube. The more I looked at the aptly named car, the more I realized that the couple in the front seat bore a strong resemblance to their car. (Did they feel an anthropomorphic attachment to this car? Did the dealer laugh as the cubes drove their cube off the lot?) The driver and passenger were, in fact, human cubes: short, squat, thick-necked, boxy, cubic, with flat heads. They were, in short, in the right car. Which made me worry. I drive a Honda CRV.

And then I started thinking about the man on the cold hard sidewalk, among strangers gasping for breath. I drove on. I had a class to teach.

Errol is sating at about 70 (90 is normal-ish). He’s not getting the oxygen we hoped his surgery would provide. He’s too blue, too groggy, too unchanged. We hoped for more oxygen, more Errol. We worry about him.

I got to work and walked past a memorial that sits out in front of my school. It reads “Former site of the James Gray High School” and looks like a grave marker, as if someone is buried below (James Gray? A misbehaving student? Hope?) It is not a happy thing to see on the way into a performing-arts school, but the kids sure do work hard.

We worry about sweet little, fragile Errol. Seeds of Love took away our medical debts (THANK YOU ALL! WE WILL ALWAYS BE GRATEFUL!) but it can’t take away our worry for Errol. And I don’t think anything ever will.

Thanks from our family

I've been flying high since two Saturdays ago when we gathered together at the Vintage Theater to celbrate Seeds of Love for Errol. At first, I was too overwhelmed by the outpouring of love to put my feelings into words. Cary didn't share my problem and she put her thanks into these beautiful words.

*******************************************
CARY WRITES...

Hi Everyone. The words flying around from all of you in the last
couple of days have captured the spirit of Seeds of Love more
eloquently than I can say. So let me just thank you all
electronically, until I get a chance to lay some real person-to-person
love on each of you, for some very particular gifts you have given my
small family during these months. (And yes, Patrick, I do most
certainly feel a part of a larger family.)

Thank you for teaching the neighborhood how to be with someone like
Errol. Maybe my favorite part of this whole process has been seeing
lots of neighbors, young and old, move past that natural awkwardness
into knowing how to talk to and kiss and high-five the Little Man.

Thank you for the new wheelchair which we are now working on choosing.
How would we have gotten a $5,000 wheelchair without you guys? I mean,
really. And now we can get the snazziest one on the market-- see photo
below.

Thank you for teaching me many organizational lessons: Eddie's overall
vision, calmness, good humour and perseverance; Katy's incredible
marketing skills; Clare's way of asking for favors so charmingly that
people end up feeling grateful to her for being asked; Bobbie Wrenn's
generosity with her fundraising methods; Suze and Patrick's use of
technology--and I'm leaving lots of you out, but these were some of my
fabulous tutorials in how to build an organization for the greater good.

Thank you for teaching the neighborhood children about where food
comes from and how much better it tastes when we eat it all together,
especially when the kids are running around like a pack of wild hyenas
while the adults are drinking too much wine.

Thank you for making me feel, the last couple of times that I read my
beloved food magazines, that those people have nothing on us. Sure,
they may be eating homemade pasta in a piazza in Tuscany, but there's
no way their neighbors are as fantastic as mine, there's no way
they're gathering berries to preserve from their local park or eating
goat cheese tamales while listening to a hot punk bluegrass band, and
it's not possible that there could be as much love in their hearts as
in mine right now. For the first time in my life, you couldn't pay me
a million bucks to move to the South of France.

Thank you for putting many of my very favorite people in one room.
What a pleasure, to see cousins from Georgia and Asheville next to old
friends from far away and work mates from long ago, all together, all
being served wine by the Chancellor himself!

Thank you for being the only reason I didn't cry all day when we were
finally denied disability for Errol last week.

Thank you for making this a political issue, because that is certainly
what it is, and many of you sent our story (which is unfortunately all
too common in the US) to our representatives. If we keep working
together, surely it will get better.

Thank you, finally, that many of you went out of your way to relieve
our guilt and awkwardness about receiving so much. I'll never forget
Bill Watkins reassuring me, "No, thank YOU!" and I could tell by the
radiant smile on his face (a smile we are all overjoyed to see on
Bill's face) that he really did feel that we gave him something. Well,
back at ya, Bill!

Cary

Hand in Hand

There is a house on my block with a yard full of weeds, and windows covered with sheets. (No, it's not my house.) In ten years, I’ve seen the owner darting in or out of his run-down house only once or twice a year. I walk my three dogs (I know) past this dilapidated house almost every night, and recently, I’ve heard strange noises behind the sheets: “Yaaaaahhhhhhhhh! Baaaaaaaaaaaaah!”

A few nights ago, I saw the owner of the unkempt house, walking slowly down the block with a twenty-ish-year old man shuffling a few steps behind him. I had never seen either of them walking around the neighborhood before. On my nightly rounds, the noises continued.

Last night I went on a late night goats’ milk run to the grocery store. As I returned home with my five gallons of milk (that must have been one big goat), I saw the unkempt neighbor and the twenty-year old walking hand in hand, under the cover of night. It all made sense to me. The man had let his house and yard go because he had a disabled kid. The disabled kid was now eighteen and had come to spend time? live? walk around the block? with his father. The pair walked at night so no one would see them. The kid liked to make animal noises (who doesn’t?)

If Errol lives to be eighteen, we will tour the neighborhood hand in hand. And we will walk (or roll), in the morning, at noon, and at night, all over this land. And we are very fortunate to live in a time and place where we don’t have to shut ourselves away from the world.