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

Thursday
Aug162012

Mapping It Out

"You're pretty," my son says to my daughter.
"You're handsome," she grins back.
"You're smart," he says with a snicker.
"You smell...wonderful!" she giggles.

Aw, aren't they just so sweet? Well...not really. It's OPPOSITE WORLD at our house. Short means tall and north means south. 

And talking about north.... A few days ago, I took my son to Jones Beach. We met another family there; we had gotten to know them while our sons received IVIGs. My son and his friend, who also struggles with Lyme Disease, had a blast in the waves.

On the ride to Long Island, my son asked me which direction we were traveling in. Used to be, in times of old (umm, before he was born,) that I kept paper maps in the car. AAA was great for that. Now we have Edna, our dog-faced guide, I mean, our always-correcting GPS ("recalculating" is her favorite word.") My son wanted to know how I knew which direction we were going. Yes, the sun helps in calculating east and west, but I also have a map in my head. Not in specific detail--no way. I couldn't sketch it (like the amazing Stephen Wiltshire who could detail the entire panarama of NYC after a 20 minute helicopter ride.) More like a sense of where we are going as if we are passing through rooms of a house.

I have a sense of where we are going with my son's treatment also. It's reassuring to me to know that we have good doctors in our corner. To our southwest is Dr. Trifiletti. To our east is Dr. Bouboulis. To the north is a Lyme Literate doctor I recently heard about. And in New Haven is Dr. Jones, the pediatric Lyme doctor whom we will see next week.

There's no future-telling going on in my house (though, on the paranormal spectrum, my husband did take the kids and some of their friends "ghost-hunting" and two of the kids saw a blue figure...go figure!) We make our own futures. I can't get my son better. But I can darn well find the best doctors for him. 

6 months ago, I made this appointment with Dr. Jones. That was before we knew my son had Lyme Disease. I had met parents while going for the IVIG who said that my son's symptoms sounded like Bartonella. I figured I'd better go to the best and get this checked out. Or, I could cancel the appointment. I nearly did; when we discovered the Lyme, we went to someone local and it cost a lot--how could I possibly go to both doctors? Then we went to the homeopathic doctor. But the local guy couldn't help enough. The homeopathy? Oh, this is a struggle for me.

What to do, what to do? Homeopathy is not a quick fix. It's what I believe in, more and more, each day. Let the body heal itself. It works. For other people. I've heard wonderful success stories.

We have seen some change in our son--we think it's because of the homeopathy (and acupuncture.) But he's still on a few medications from before which can interfere. And he's had this disease for so long--perhaps we use antibiotics again and just pummel it out of him?

Yikes. I've already seen the results of "pummelling." I don't know what's best for my son and neither do the doctors. We will see what Dr. Jones says and then weigh all our options.

We now have something else going for us. A Lyme team of experts. We found a social worker who specializes in Lyme Disease who has put us in touch with all the other players--some, hours away. But these people are the best. I heard about them from my friend at the beach as well.

The map in my head does not share with me where we are getting the money to pay for all these professionals who do not take insurance. That's when I start to get panicky feelings in the pit of my stomach. 

I must suspend disbelief. And make things happen, once again. Re-finance. Borrow. Finish the novel I've been working on sporadically for years--I'm giving the main character PANDAS! Sadly, I know that most books don't make tons of money. Make a movie of it? Sure! Change the plot? Sure! I'm fine with people saying the book is better. However, this map is of one of my dreams. Not sitting in the reality carseat.

The immediate map has me already taking off days from teaching (in September!) for these new appointments. The immediate map has us trekking through Connecticut as we see doctors. And my very immediate map has me waking up my daughter for camp and then getting ready for a bicycle ride with my husband!

"Faith is taking the first step even when you don't see the whole staircase."--Martin Luther King

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