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

 

 

 

Blog Index
This area does not yet contain any content.

 

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

 

Tuesday
Aug212012

Live, from the DR office, it's IVIG!

Scene: semi-tall, barefoot, 11 year old boy in warm Lazy-Man chair. NY Giants blanket on his knees. His dad's iPad on his lap. TV on; Disney channel playing what we refer to as the "stupid shows." Other chair in the room occupied by mom wearing a black and white "help destroy bad PANDAS" t-shirt. Powerbook on her lap. iPhone plugged in as well so she can text with husband.

No, this is not a commercial for Apple products! Haha!

Other props: bag of fun food (trailmix, blueberry muffin, protein bars, potato chips and...fruit, which goes untouched.) The yogurt that mom has not yet eaten. Books. Lab reports. Homework (also goes untouched.)

Welcome to the 2nd day of IVIG. The past two times, in January and again in April, we came away with new friends (for my son and for me.) This time, arriving in the afternoon, when others are leaving, the feeling is a little different. No kids walking around with Nintendo DSs (one time, my son had 4 other kids in our room, all with their DSs. Another time, he insisted I meet the family next door so that I could introduce him to the boy. He then stayed there for an hour, chatting. Easy peasy. IV will travel. Just plug it in to the next room.)

But today, it's quiet. My boy is kinda tired. My husband and daughter came in with us; after talking with the doctor, they left to go to the movies, and will return later. And tonight, we make this into a vacation (not) and stay in a hotel. With a pool. If my son feels well enough.

We will go out to eat. If he feels well enough. Last night, my dad, visiting from FL, took us out. "Oh, have you been to Chipotle?" he had asked. We took one step into the restaurant and my son was pummelled with the vision of metallic tables and fluorescent lights and the scents of healthy, spicy ingredients. Sensation issues swarmed. "I can't stay here."

"Welcome to my world," I whispered to my father, as we headed for a pasta place across the street. My dad didn't notice his grandson writing curse words on his frosted glass of water. He didn't realize that I pulled my son's chair over to me and held him. Maybe he thought I was just being affectionate. But I was pulling him away from my 9 year old daughter who was noting his every move and trying to avoid his stretching legs. When the sensations are overly-much, holding him close helps. Yelling or scolding doesn't. Not one iota.

I don't know if it was the IVIG yesterday that was responsible for his staggering around last night, or the Benedryl that made him loopy. (Today, they cut the dose.) One of his triggers is fatigue. It does something to his brain. Or maybe it does something to his self-control, because when he's feeling good, and doesn't have any outside triggers (homeowork, chores, an argumentative ittle sister,) my son is fantastic--and then, when he starts to fall off this perch, he's self-aware.

So, here we are today. They hand me the lastest blood test results. I note the report about the MTHFR gene, which says positive (but the medical staff assures me is really negative.) After "talking" with iFriends on my support group, I look it up on Dr. Jones' website. Whatever. I'm not worrying. Whether we should be concerned or not is out of my control. Dr. Jones will most likely know what to do with all this. We see him tomorrow and I'm nearly as excited as I was when we went to Disneyland. Well, you know what I mean. Finally, a doctor who knows what to do with everything my little boy has.

I'm diagnosing him with Bartonella, based on everything I've read. I know--we should never diagnosis ourselves or our own children, but if I hadn't figured out that he had PANDAS, he'd be hanging out with Lord Voldemort somewhere. Don't get me wrong--I won't medicate my child based on my own research. But I will sure as heck take him to the doctors. Prove me wrong or prove me right, but figure this out. 

Mom's gut (and research) seems to have made a difference in the life of most of the children who suffer from PANS. (Dads, too, in some cases, but I do notice that it's mostly moms who research.) Someday, all of this will be in the history books. Well, medical history books, at least. The generation of children who suffered from PANDAS but were hard to diagnose. The generation of folks with Lyme who were told it was all in their heads. The invisible diseases that were ignored by many in the medical community. It's hard to wrap my mind around the fact that some researchers are motivated by profit, that they have ties to pharmaceutical companies, and that their first goal is not to save today's children. (Note the article reposted on my FB site in which some of these researchers who said that PANDAS doesn't need to be treated right away are connected to companies selling medication for tics.)

Yet, I still believe that most people are good and that life will get better. I can't help it; it's 2nd nature for me to believe. Maybe it's because I teach 5th graders. There's potential everywhere.

This weekend I will bicycle (only) 50 miles with my husband alongside farms and the Long Island Sound. I rode 30 miles Sunday with a friend from high school and for the first time in a long time, I rode at a relaxed pace. Biking felt like butter--so smooth, so accommodating. I had forgotten how to ride for pleasure. This Sunday, since we are not bicycling 100 miles, we can ride for fun.

I'm getting off the Powerbook now. A friend I met in this office months ago is here with her son, who also is struggling to overcome Lyme and PANDAS. Like my son, he is a football player. Like my son, he will go on to do great things someday. Simple joys: connecting with another parent of a PANDAS child. But joy it is.

"Simple joys have a simple voice:
It says time's a living prize."  --Pippin

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

Thursday
Aug092012

That Thing with Feathers

"Hope is a garden
Of seeds sown with tears,
Planted with love
Amidst present fears."

--Mattie J.T. Stepanek

My son is back in his bed tonight. We finally rolled up the sleeping bag that greedily stretched all over the floor of my room. Phew.

Phew? My 11 year old has claimed to have walked out of the house at night when he can't sleep. For real? Just in case, my husband places tape on the doors. So far, the tape has not been broken. Just in case, I've been leaning the plastic child/dog gates across the stairs. So far, the gates have not been moved. 

Our little guy was in such a great mood this afternoon and evening that I found myself tensing up, expecting the "break" to come any moment. And then, I thought, I wonder if this is how abused people feel--waiting for their partner or parent to suddenly snap.

Snap he did, when I was on a [rare] phone call with a dear friend while folding laundry (always multi-tasking. Guilt decreaser and Time increaser.) Thump, POUND, thump, POUND on my door. I opened it to find him making faces. Tic-ing mouth, stretching wide. Eyes jerking with anger and out-of-controlness.

Still on the phone, I pushed him away from my room and extricated my arm from his grabbing hands. I closed my daughter's bedroom door, then shut my door again. And continued talking with my friend while he threw the plastic gate down the stairs, terrifying the poor dog. 

Now sometimes this has not worked out so well. There was the time he climbed out of his 2nd floor window. Now his dresser stands in front of that window. Kinda weird to walk into a room and see a dresser in front of a window--one visitor actually moved it away--but our entire situation is out of the norm. So, what the hey.

Tonight, somehow, he calmed himself back down--a first--and 40 minutes later, after reading with my daughter, I found myself cuddling my son and reading to him as well. I introduced Mattie J.T. Stepanek's Hope Through Heartsongs to a very sick 11 year old in dire need of hope. Who better to give hope than another child who understood suffering and was able to turn it into poetry? 

I read aloud the introduction, which talks about listening for your Heartsong, your meaning in life. And I asked my little guy what his Heartsong is. He said that it is to persevere, to get better. My boy is fighting. My precious fighter.

Mattie writes that sometimes we lose sight of our Heartsong and need to "borrow" from someone else. I reminded my son that when he was four years old, he had a Heartsong. He wanted to be an animal scientist. I wondered aloud what he might do when he is recovered. How he will happily live his life.

I also think about the kind of person Mattie J.T. Stepanek must have been--kind-hearted, wordly in a close-knit family type of way and word-wise. And he was a boy himself. He died right before reaching his 14th birthday.

Yesterday, after a dreadful, lowest-of-the-low mornings, I spoke with two amazing moms who have been battling the Lyme monster that threatens their children. They are seeing results--recoveries. Slow. Painful. And now their daughters have come far. Both women have used many different methods, from traditional Western Medicine to homeopathic and/or integrative. Both women shared hope and strength. I think I caught some of their Heartsongs. I know I caught some of their hope.

When we're in the midst of the madness, it's sometimes difficult to remember that some children do recover from PANS, PANDAS, Lyme. My son may never again be "perfect." But perhaps his imperfections will help him create something even more special within himself. And I pray that my daughter gains more strength than hurt from this as well. As for me, I've had so many Heartsongs that it's hard to follow them all. But I am learning how to hold onto my hope, my trust in something as invisible as these diseases.

“Where there's hope, there's life. It fills us with fresh courage and makes us strong again.”--Anne Frank

Monday
Aug062012

Bicycling, Sweat, and Tears

I am pumping my bicycle pedals through the thick, exhausted air, feeling a line of sweat trickle down the side of my face. Lovely.I've pedaled hard down the hills, not letting myself fly at anything less than 20 mph. I've put on a good show for myself on the climbs. But the day is heading toward lunch hour, the heat rising around me.

There is a slight upgrade, ever so insidious. I know from experience that this upgrade will go on and on for a couple of miles or more.

"What goes up must come down," I hear in my mind. I always have a tune in my head. Not a playlist. Just one tune that keeps coming back like bad food. It could be Call Me Maybe (indigestion) or Penny Lane (there's a dance studio on one route with that name--too bad I don't recall all the words. Penny Lane doesn't make it far beyond my ears, eyes and those blue suburban skies.) Today, because of the hills, it's Spinning Wheel

If I look at the road just the right way, and make myself believe it, I can convince myself that I'm actually riding downhill instead of up. Less stress, to ride downhill. And if I'm going downhill, there's no reason to ride any slower than, let's say, 13 or 15 mph. So I give it everything I've got.

I finish the 24 miles at a good clip, my average speed higher than ever.  I'm strong and I know it.Twenty years ago, I rode to socialize. On Friday evenings, I'd do the quick Greenwich 20 mile ride, then drive to dinner with my fellow cyclists. I'd wake up early on a Saturday to do a longer, hillier ride with another group of friends, acquaintances and people I hadn't yet met. I'd ride once more on Sunday mornings. Sometimes I'd rollerblade in the afternoons as well. I had energy, youth and no children.

Cycling is like my life now. Not in a California-girl sense, but in a metaphorical sense. I'm strong. I can handle my son's illness. I can pedal uphills. I can handle the distress it gives my family. I don't like to sweat (cry,) in front of other people. I can make major medical decisions. I consult with the most knowledgeable doctors and warrior mothers. I can ride 50 miles. Yes, I'm tired, but I can do this. Even if it takes me pushing myself 20 mph up those hills, I will make sure that my son is better someday. I will keep him alive long enough to believe it. I will bicycle through Europe with my family someday. This is a commitment, not a daydream.

I don't have to look at the road, mapped in front of me, as one big uphill. Instead, I can play tricks in my mind and pretend some of it is downhill. Going to an appointment or a meeting, I get into character. All that theater in my 20s taught me how to divest myself of who I am, what I feel and how to become someone else. I'm not cheating. I'm not lying. I'm simply the person who writes this column, the warrior mom who is determined to spread awareness of these diseases for all the children suffering out there, the woman who can quickly hammer away a 24 mile bicycle ride or a slightly slower 42 miles ride. I'm not bragging, as my daughter is telling me to write. I'm telling you that if I can do this, so can anyone. 

Twenty years ago, this is how I became Tuptim: sitting backstage, each night, I'd imagine myself being carried into Siam on a litter, my lover/boyfriend secreted among the servants. I'd feel the warmth of the sun on the long journey, smell the scented oils, feel the soft silk robes. My 20th century persona lost, I'd shyly walk onto the stage wondering--would the King like me? Be fooled by me? Would I ever see Lun Tha again? Could I adapt to this new life? 

Now I practice, once again, getting into character. Cyclist. Teacher. Writer. Someone with a new meaning in life. I purposely forget that I cried behind my sunglasses this morning after my son raged, threw away his medicine and sobbed that he's just a little boy/he can't help himself/no one helps him. 

Don't ask me about myself and really mean it.

Don't ask me how my son is doing today.

Don't get specific on me. You don't want me "talkin' bout [my] troubles. (It's a cryin' sin.)"

Because I'll break character. And break into tears. But thank you for caring. I truly mean it.

I want the world to know that these diseases are out there. I want to spread the word and help somebody else; helping somebody gives our ordeal some much-needed meaning.  I want people to donate to research so that our scientists can finally discover a cure. I want you to care. 

But I also want to be able to live my day, to enjoy that bicycle ride, to savor feeling stronger than I've ever been, both physically and mentally. Maybe it took a horrible act of illness to discover this about myself, but I'm the person I once longed to be. 

And sometimes, I just want to race down those hills, feeling the soft air hug my knees, the sweat dry from my back. I just want to, "Drop all [my] troubles, by the river side, Ride a painted pony, Let the spinning wheel fly."