Goodness Gracious

The waitress where I took the boys to breakfast is usually pretty fussy, but today she was transformed.

“I’ve been reading about you in the paper.” She beamed.

“I hope your dinner went well.”

I smiled.

She looked at Errol, nodded her head and smiled.

“It’s good to know there are people out there doing good.”

Indeed!

One day I noticed a woman in the supermarket who had lost her hair. After that, everywhere I went I kept sighting bald women, one after another. Of course, there weren’t any more bald women around than before, they had just gotten onto my radar.

When Errol was first diagnosed as being developmentally delayed, I began to think that every other kid I saw had one syndrome or another. “Honey!” I would whisper excitedly to Cary, “I think that kid on the bench has Down syndrome.”

“No, sweetheart, that’s Jimmy, he doesn’t have Down syndrome.” But I thought so much about Errol’s (still mysterious) syndrome, that I couldn’t get it out of my head.

True story: my brother-in-law’s band was playing a concert, wrapping up a long tour with another band. As a departing gift, the other band paid a midget stripper (yes there are midget strippers) one hundred US dollars to creep up on stage, and as my brother-in-law sang an especially heartfelt ballad, strip.

OK, so that stripper story doesn't really support my theory, but still, you've got to admit, it's a good story. Now back to the theory about seeing what you look for.

Like the nice waitress said, there are lots of good people, and thanks to Seeds of Love, I see them everywhere.

Errol and Mama Smiling

Errol is getting more and more oxygen into his growing body and is really showing great progress! He loves his mama.

Funny Errol

Everything is funny to Errol! He brings such light into our life!

Gratitude

At birth, unable to breath, Errol clung to the thin edge of life. As our infant boy was rushed to the Neo-natal ICU at Baptist Hospital, we were bundled into a small conference room to meet his cardiologist. Errol was nine hours old. The cardiologist explained Errol’s heart problems: no right ventricle, bad valves, little oxygen getting to the lungs. It seemed hopeless. I imagined that Errol just had minutes to live. I asked the doctor if there was anything we could do.

“Oh, of course” he nonchalantly replied, “We can fix him.”

When we got home from the hospital we were overwhelmed by the level of care we had to provide Errol just to keep him alive: medicines, oxygen, therapies. After an exhausting week, we got a call from The Children’s Center for the Physically Disabled where we went to explain Errol’s problems to the school intake team.

“No problem” The principal said, “he can start next week.”

A year ago we were on the porch talking to our neighbor, Eddie. He asked what prompted Cary to start a business, which led to a story about how Errol’s medical bills had put us in a deep, dark hole.

In that conversation, Seeds of Love for Errol was planted.

When you have everything to lose, you have the most to gain. We are so grateful for the overwhelming love we have received. Our hearts are filled with gratitude every morning, every day, every night.

Thank You!

Thank You!

Thank You All!

We are the luckiest family in the world!

The big day draws near

The party starts at 6:30.

We are so excited! It's going to be great fun!

Errol hits the airwaves

You can hear the story about Errol that the amazing Mr. David Ford put together for today's Triad Arts Up Close on 88.5 FM WFDD. It brought tears to my eyes. I think I must be the luckiest person in the world.

Genes

Errol’s geneticist called today to let us know that the latest tests he had run did not reveal the cause of Errol’s condition.

Errol remains undiagnosed.

Here’s what the geneticist could tell us about our boy.

His atypical condition likely is the result of the change of a single gene. There are no deletions or extra pieces in his chromosomes. His entire condition hinges upon the mutation of one single solitary gene out of the 25,000 or so that we have.

Here's a little primer on genetics for people like me who had other things to do in science class back in school.

Cells

Cells are the basic building blocks of all living things. Our bodies are made up of trillions of cells. They contain the body’s hereditary material and can make copies of themselves. They are a kind of phone.

Genes

A gene is the basic physical and functional unit of heredity. They are instruction for how the body should be built. There are between 20,000 and 25,000 genes in a human body (and in California). Every person has two copies of each gene, one inherited from each parent. Genes are little.

Chromosomes

Chromosomes are organized structures of DNA found in cells. The shape of the DNA double helix was modeled on cheese fries. Who'd a thunk it?

Sarah Jenkins

Sarah Jenkins sat across from me in biology. She was really pretty. The test never had any questions about Sarah.

Here's a picture to make sense of it all or make you really hungry...

Like I said, genes are little. And that cell there looks a little bit like a fried egg.

After the doctor told us what he didn't know, he said that he was sorry to bring us bad news. It didn't seem like bad news to me but I was getting hungry. Putting a name on a syndrome isn't going to change Errol, but to make the geneticists of the world feel better we'll call Errol's genetic mutation "peach syndrome." As in, Errol is as sweet as a peach.

Seeds of Love

I got another phone call today, this one from the Social Security Administration.

We found out that we hadn’t qualified for Medicaid or any other government assistance because last year we made $3000 too much. I’ve never made too much before!

Our little family inhabits a nether land of middle class existence where we have too much money for government health care support, and too little money to pay our health care bills without going broke. So…we’re having a party. Or, to be more exact, our amazing friends and neighbors are throwing a party to help cover our bills. The party is called Seeds of Love for Errol.

When the cardiologist first examined Errol he told us our son would be a million dollar baby. I laughed. He didn’t. I cried. In the first year of his life, Errol cost us over $24,000 in out of pocket expenses. And that’s not even counting diapers and normal baby stuff. Hubba hubba. That was our start down the dark tunnel of debt that Seeds of Love is helping to pull us out of.

If it weren’t for the spectacular generosity of our friends, family, neighbors, and community we would never be able to repay our staggering health care bills. And millions of Americans without our good fortune are busted by their bills. In fact, 700,000 Americans go bankrupt each year from health care expenses. 80% of them have insurance (I have insurance but it doesn’t insure against financial ruin.) And what about the rest of us who can’t afford health insurance? What about the 22,000 of our fellow Americans who die each year of treatable diseases because they lack insurance and can't afford a doctor. It’s a tragedy. It’s a huge moral failure. Something must be done. We are all in this together.

And here in this beautiful little corner of the country we are in it together. And Seeds of Love is turning our lives around. Every day we are grateful for our loving community! We pinch ourselves to see if Seeds of Love is really happening. If we really can hope again. Generosity, compassion, and kindness embrace us. We are the luckiest family in the world.

Resources

The journalist T.R. Reid has written a fascinating book entitled The Healing of America that compares health care systems around the world. You can read a wonderful excerpt from his book entitled, No Country For Sick Men. or, if you have time, watch his Frontline documentary, Sick Around the World. or hear him interviewed on NPR's Fresh Air.

Nicholas Kristof wrote a powerful editorial this week about a the tragic results when Americans don't have health insurance.

a bo de deeeeeeyeeeh

Owen is singing again. Just in the few weeks since school started back, Owen’s been singing the first verse of Puff the Magic Dragon like it’s nobody’s business.

When Owen was a little boy and just learning to talk, he used to happily repeat his favorite phrase over and over again, "a bo de deeeeeyeeeh." We couldn’t figure out what it meant, and although we asked Owen over and over again what he was saying he would just respond, “a bo de deeeeeyeeeh.” We couldn’t figure it out.

Errol is far stronger and healthier than he was before his surgery. He’s sitting up, using new sounds, “wuuuuuuhhh”, and running for city council.

He’s a champ.

In addition to his new sounds, he’s back to his favorite phrase, “uh oh!” The other night, after his five gallons of medicines, we got an earful of uh ohs. It was wonderful to hear the little man back in tip top verbal form, but just what in the world is this uh oh all about? Is uh oh, just uh oh, or is Errol making some incisive comment about heath care reform? Uh oh!

Who knows? Maybe not even Errol.

After a few seasons of “a bo de deeeeeyeeeh” we took young Owen to a birthday party. As we all joined in singing Happy Birthday, Owen joined right in with a perfectly sung “a bo de deeeeeyeeeh.” Happy Birthday to you!

After all those “a bo de deeeeeyeeeh," Cary and I could not figure out that Owen was saying one of the happiest things a child can say.

Maybe one day we’ll figure out uh oh. Maybe, if we sing enough with Errol, we’ll know the secret of uh oh. And maybe, if Errol keeps smiling while he says uh oh, it just won’t matter what it means.

Uh oh!

Adventures with Errol

The other night, Cary made Errol’s bottle - about a twenty minute task (no joke) and said,

That’s really not so bad!

Here’s what she made:

• 3 oz. goat milk (we should just get a goat)
  
• 3 oz. water (cheap)
  
• 6 squirts hydra-aid
  
• 1 ml Digoxin
  
• 1.4 ml Enalapril (yum)
  
• 6.5 ml Motrin
  
• 3 ml Ranitidine (yum, yum)
  
• 2 ml vinegar (yes, that’s right, vinegar)
  
• 81 mg children’s aspirin
  
• 1 ml Plavix
  
• 2 ml Enulose
  
• 1 multivitamin tablet (dinosaurs!!)
  
• 1 t probiotics
  
• 1 t Maalox (sorry, Errol)
  

stirred not shaken

The scary thing is that she was right about the bottle getting easier to make. Since his last trip to the hospital, we have stopped giving Errol

1.5 ml Furosemide

and

10 ml Cleocin

Happy days!

It’s a royal pain in the arse, but it’s all worth it. 

My cousin Benjamin (yes, there certainly are a lot of Benjamins in the family: one uncle, three cousins, one great uncle, one grandfather, and a boatload of second cousins) came to visit. This Benjamin’s a doctor so we showed off Errol’s scar to him. Anyone not in the medical profession runs screaming at the sight of Errol’s scar, Dr. Benjamin thought the scar looked great. He asked about Errol’s blood oxygen saturation and I told him it was about 80. He said

What about after the operation?

And I said

That is after the operation.

And he asked

What was it before?

And I told him it had been in the low 70s.

He figured I didn’t know what I was talking about, (who can blame him?) so he did what most people do after they ask me a question. He asked Cary what the real story was. And Cary said,

Yeah, he was in the low 70s.

And Benjamin (ever the adventurer) said,  

That’s like living at 30,000 feet

Everest, is at 29,035, so I’m going to call Errol, Sir Errol Hillary, to congratulate him on conquering such high altitude. 

And this is actually why we have a lot of hope for Errol walking, talking, and generally making merry developmental progress, because now that we’ve got him almost down to sea level, I think we’re going to see great things from our little Sherpa.

30,000 feet!

Open Dream

Errol went to see the amazing Open Dream Ensemble last night. Despite being tired and in a bit of pain (we’re slowly weaning him from his pain medicine) Errol thought the play was hilarious.

Luckily it was a comedy. We won’t be going to see Macbeth.

Macbeth So foul and fair a day I have not seen.

Errol Hee hee heeee heee

Later…

Macbeth There the grown serpent lies; the worm that's fled 
Hath nature that in time will venom breed, 
No teeth for the present. Get thee gone: to-morrow 
We'll hear, ourselves, again.

Errol Hee hee hee hee

As the Open Dream Ensemble sang, danced, and played music, Errol would look up to see if I agreed with his analysis of their performance

Wheeeeeeeeeee

Errol is a noisy concertgoer and it’s going to be many years of children’s theater and loud rock concerts. Worse things could happen!


After the show I told Owen’s friend Rafa about the eject button on Errol’s stroller. Errol thought it was a hilarious to have young Rafa running up to him laughing, hitting his wheelchair “eject button”, and initiating the launch sequence.

Brrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
The wheelchair screamed

Luckily the eject mechanism malfunctioned each time and there was no space launch.

Silent Art Auction for Mr. Errol