I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Wednesday
Aug222012

FIXABLE: The most beautiful sound in all the world

Today, after waiting 6 months for the appointment, we finally saw the famous Lyme pediatrician, Dr. Charles Jones, in New Haven, CT. What an amazing man! 83 years old with 18,000 patients from all over the world, including Northern China and Pakistan. Yet he made us feel that he had all the time in the day for us.

Dr. Jones examined our boy, questioned him and us, pored over new lab reports. He had already reviewed pages of information, chronologies and lab reports that I had mailed to his office. He gently asked dozens of questions, then listened to the answers and to the spaces (delays) before the answers. And to my son's asking him to repeat the questions. He examined my son's eye-tracking, his balance, questioned him about fatigue and mood.

And boy, he sure understands kids! Dr. Jones asked our son, "Is you sister cute or funny-looking?"

"Ummm...a little of both," our son said, a smile dancing on his face.

"And what about you--are you cute or funny-looking?" Dr. Jones asked.

My son hesitated. I figured he was trying to figure out something funny to say. He grinned. "Cute."

Extremely thorough, Dr. Jones tested every joint in our son, which resulted in the discovery that nearly every finger, elbow, knee and foot joint pains our little boy. And has, for quite some time. Our son rarely complains. Like his dad, he has a high tolerance for pain and just pushes himself through. He has bicycled 42 miles with us. He has gone out for punishing football practices because that is his passion.

Since when is an 11 year old so stoic?

Upon hearing that my husband used to bicycle race, Dr. Jones tried to talk him into getting a Harley motorcycle. Dr. Jones used to ride one when he was younger. He lives in the same building as his office--upstairs. He spoke highly of a grand-nephew who lives either with him or next-door. And all the while, we were settling in, remembering things we'd meant to share. We were learning to trust this doctor who cares so much that he has bucked the system, treating patients with long-term antibiotics when the current CDC guidelines call for about 30 days. People who know him adore him.

If we stayed within the "system," our son would be back on psychiatric medication that would simply supress the symptoms he has from Neuroborreliosis and possibly Bartonella. If we stayed within the CDC guidelines, our son would again be diagnosed with something else altogether, and mis-treated for years until it was too late. It is NOT too late. 

Before we left, Dr. Jones looked our son in the eye and declared, "Coby, you're FIXABLE. You're bright, you're cute and you're FIXABLE."

Beautiful words.

But not something my son is thinking about at this moment. The little guy is claiming that today is one of his worst days ever. He just wants the day to end already. The IVIGs have taken their toll; he has a migraine and nausea. After praying for two hours not to vomit, he finally prayed TO get it over with, and ultimately, he did. Then, the headache set in.

On top of that, there are the needles. It took three pokes before the nurses could draw blood today. Our boy was hooked up to an IV yesterday and the day before. He's had more needles in his short life than most adults. He's been through allergy shots and blood tests. He doesn't want to see another needle for a year, he said. If we decide to go the antibiotic route, there might even be IV antibiotics. Dr. Jones will let us know once the blood tests come back. Whatever. I trust him.

My son may feel like crap right now, but really, today is one of the best days ever, at least for my husband and me.

Because Dr. Jones believes our boy is FIXABLE.

The little guy is miserable. He's sure compaining now. But it's OK! I can wipe his punim, his face. I can cradle his curly head until he falls asleep. I can care for my boy and it's easy right now, knowing that this, too, shall pass, and that someday he will be better. That we have found a doctor who understands our fears about the Herxheimer's Reaction. One who understands how the Lyme has affected our little guy's ability to think. A doctor who has saved thousands of children like our little boy.

Just like the old quote says, "Today is the first day of the rest of your life."

Dr. Jones is giving us the rest of our son's life.

Today is a wonderful day. 

For more on Dr. Jones, click here. Go to page 5. His website is here.

Fixable. The most beautiful sound in all the world.

"All the beautiful sounds of the world in a single word...
Say it loud and there's music playing, 
Say it soft and it's almost like praying."

(West Side Story) Lyrics by Stephen Sondheim; Music by Leonard Bernstein

 

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