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

Monday
Jul302012

"Tick tock, on the clock, But the party don't stop, no...."

"Oops," I say to my husband. "Gotta take the tick outa the fridge. And stick a paper towel in the bag with it."

"It's not a &%$ pet!" he answers.

And I thought I was going to sleep early tonight. Surprise, surprise. 

I am not sleeping enough. And it's catching up to me. Between my son who's got PANDAS and Lyme and my daughter, who doesn't, but who thinks that people are trying to break into her bedroom through her window every night, there's always someone to wake me in the midst of my happiest REM moments. And it's caught up to me. I feel like I've come down with a virus. I even skipped my Sunday bike ride. My happy time. It's bad, bad, bad when one doesn't reach REM-land for nights on end. In fact, I've even begun waking myself up. Beat you to it, kids! See, I'm up, I'm up! Last night, I plotted out the revised first chapter to my book. My brain was in high-gear.

So, smart adults that we are, my husband and I devise a plan. A positively perfect Mary-Poppinish plan that will reward said children if they can (A) go to sleep on time without complaint and (B) stay in their beds without waking us all night. Something that is hard for a child with PANDAS to do. Something that has been hard for his sister to do as well. And while it's sweet to have a child curled up against you in bed, it gets a little old, you know. My husband has joked that our daughter will be in our bed with her boyfriends if this doesn't stop. (And then, in the next breath, he says that she's not allowed to date until she's 65.)

Darling daughter blew it the second night. 2 AM and she was crying for attention. But my son's doing great! I'm so proud of him! He really wants Yogalicious and ultimately, a trip to the Renaissance Fair. Or so I thought.

"I have to tell you something," he told me, tearfully, tonight. "I don't really want to tell you because now I'm not going to get Yogulicious. I've been getting up in the middle of the night and I can't go back to sleep. I didn't want to wake you so I'm going outside."

Out the front door, mother and father...out the front door, in the middle of the night. OMG. The back door locks with a key which I can hide, if necessary. The front door has a confusing lock, but it's no longer confusing to a very confused 11 year old. And I thought the sustained-release melatonin was working. 

Back to square one. "Sweetie, you can wake me. You can even sleep on the floor of my room. But you cannot go outside. It's not safe. Someone might kidnap you."

"Did I lose Yogalicious and the Renaissance Fair?" Ah. The important things in life. Perchance, to be a kid again.

But wait--there's more: "And Mommy? I think I have some gum in my hair."

I part his very dark, curly head of hair to see one very engorged deer tick. My husband comes upstairs with his phone and we google the best way to remove this deadly tick (the method seems to change from year to year.) We get out the tweezers and...


So we get it in the bag, dripping blood. My son's blood. Gross, but what's grosser is what this tick might have left behind. We have to know. We put it in a ziplock bag and I figure I better put it somewhere cold. I open the refrigerator door. No, I don't want to place it with the butter. And not with the bottles of probiotics either. Let's just hide it behind the mustard and soy sauce.

When I post it on FB in the Lyme and PANDAS sites, I hear from my support group friends that putting it on ice isn't the thing to do. These friends generously give of their time to look up labs for me and to show they care. I learn that it's gonna run me a couple hundred dollars just to get this tiny tick tested. And what do we do if the tick has Lyme Disease? After all, my son already has it. Arrgh, the stress, the stress. I will worry about this tomorrow. As I bicycle a gentle 20 miles, perhaps.

My sweet boy is lying in my bed, fast asleep. Maybe we just leave him here tonight. And maybe we don't, considering he takes up most of the space. My husband wonders if maybe these nighttime excursions of his are in his imagination. After all, wouldn't our noisy dog get excited? Something to consider.

I must remember to breathe. And believe. All will be OK.

But tick tock, this party sure don't stop. 

 

Thursday
Jul262012

Feeling "Othered" but Wanting "Much More"

"Please, God, please, don't let me be normal." --My favorite quote from the off-Broadway show The Fantasticks.

I've always felt different.

Different's not bad, you say. My husband and I tell our kids the same thing. It's the child who is creative and quirky, interesting and NICE who is going to grow up to be somebody you want to know.

But I don't like to feel different in a you-are-not-in-the-group kinda way.

I've a friend who has spoken about feeling "othered" when people make remarks that push her out of the group/norm. She attributes this to race and skin color. She has suffered through people assuming that she does not need suntan lotion. She has heard inane jokes about slavery. All of this makes her feel like an outsider.

When I was a child, religion (menorahs, not trees,) hair (curly, not straight,) and shyness set me apart. In my town, we dealt with the religious difference by sharing ("come to my house tonight to light candles with us!") But I did drop out of my school's chorus when they sang religious Christmas songs and only one round of "Dreidl, Dreidl." Later, I would attempt to iron the curls (in my view: frizz) out of my hair. My parents sent me away to sleep-over camp to overcome my shyness and to meet other people of the same religion. (Note: this can be fun. This can be expensive. But as for overcoming shyness, it doesn't work.)

In 'other' words, being different was not really OK. And it still isn't, especially when the illness my child has separates us from the rest of life. We can't go on vacations. Heck, we can't even go to a party for a few hours because he fatigues or gets upset if someone speaks to him in an angry voice. I have trouble leaving the house at night because nighttime/bedtime is the hardest time of all, a time when both children need their mommy.

If my son had cancer, people would understand a little bit more. They might even bring over dinners once in a while. There are plenty of times when we just can't get a solid dinner on the table because we have too much illness going on. But we don't tell people that.

My child's disease cannot be seen on the outside. My son has beautiful, curly brown hair and the face of a baby Greek god. He has a killer smile and relates well with people. He's not shy. Unless you spend a few hours in his company, you would never know he has something wrong with him. He hides it all so well in front of non-family members. He hides most of his OCD from us. I just recently found out that he was counting stairs.

As a parent of a child with an invisible disease, I feel OTHERED. First of all, my son's friends' parents can feel proud of their children's achievements, or gripe about having to get a tutor to dig their child out of a math hole. My son doesn't want to do anything except football. And when football season rolls around, half the time, he doesn't feel well enough to practice or play. He feels dizzy. His legs hurt. This is Lyme Disease, which went undiagnosed for a long time.

I should be able to tell you what a smart boy my son is. But the Lyme Disease and PANDAS have affected his thought processing. He will tell you that he thinks he is the stupidest boy in his class. This from the kid who as a 4-year old, threw around words like, "nocturnal." When I read to him at night and he's relaxed, I can hear him making connections and predictions. His brilliance bursts forth in tiny stars and I'm lucky to catch them.

I should be able to tell you how creative my son is, but he writes 1 and 1/2 raps ("don't call them poetry, Mom,") and then leaves his notebook in the same place that he left a $20 bill, a bathing suit and towel, his phone.

People smile at me and ask how my summer vacation is going; they're envious because I'm a teacher and have two months "off." Nobody wants to hear, "Not great."

I'm up nearly every night dealing with a miserable child or his very sad sister who can't sleep in her bed for one reason or another. I'm followed around by my son who would not, could not go to camp and will throw an outright temper tantrum, even going so far as to yank the kitchen faucet away from its base or pick up a metal baseball bat--provided, of course, that no one else is around. And I know that he would never hurt me. But still. It's stressful. The moment his sister comes home from camp, he's picking on her. Pick pick, jab jab.

I don't go around telling my neighbor this. I can't even squeeze out the words, "Well, isn't it lucky I have two months off so that I can go to all these doctor appointments for my son, who is so incredibly sick...only you don't see that he's sick do you, and...can your child come over to play with him?"

Aaaarrrghhhhhh.

Othered.

And just like in the song, I want Much More. In another life, I sang this song on stage. Feels like a lifetime ago. It was a time of innocence, of not knowing that a world of PANDAS and Lyme exists. Now, it's these lines that speak to me:

"Perhaps I'm bad, or wild, or mad,
With lots of grief in store...."

On the other hand, Robert Louis Stevenson spent his childhood sick, and in bed, and we celebrate him today through his writing. Who knows what benefit this experience will have on us all. I do know that I want to someday meet up with my fellow PANDAS and Lyme parents and take a vacation together.

Wednesday
Jul252012

On Dreams Deferred

I'm not a believer of the $50K, 5-hour Batman-themed Bar Mizvah for my children. 

Yet, once upon a time, I had planned for my children to be bar and bat Mitvahed in Israel, the birthland of their dad. So not gonna happen. Not with our medical spending sprees. I can live with that. I imagine my son will have his bar Mitzvah on the river, with a celebration at our house, maybe our backyard. Kinda hippy-ish. And then, we can invite you all.

Hey, at least he still wants a bar Mitvah. He may be mad as hell at this G-d who let him get so sick. He may google pictures of models and then pictures of shrimp (yeah, we monitor him.) But he's my nice Jewish boy. When he gets better, I hope he still wants to be a scientist someday. Back in pre-kindergarten, when all the other children dreamed of becoming Superman or a Princess, my son wanted to be an animal scientist. 

Maybe he'll become a scientist and find a cure for Lyme Disease and PANDAS. 

Maybe he'll just be healthy and happy.

Once upon a time, my husband and I used to go out on dates. Or to a party. We could leave the kids with a babysitter. Now, my son is at his worst at night. Now, if we want to socialize, we host. One thoughtful friend wanted to have a party and knew we couldn't leave our kids, so she hosted it at our house. We make do. Sometimes.

Friends and family post fabulous, sun-baked vacations on Facebook. Not I. Even my ten year old students travel to faraway ports over vacations. Not I.

OK. I'm jealous. We go to...the expensive Lyme Literate Doctor! Oh, how thrilling!

The book I began writing ten years ago remains on the computer and in my head. The Les Paul guitar my husband gave me for an anniversary gift (back in the days before the funds went to doctors) sits in its case. (Note: I am undeserving of this guitar; my husband's generosity far exceeds my skills. Like billions of miles far.)

But I will complete my book. And I'll play around with my guitar again, some summer when I don't have a sick child with me all day. And an anxious well-sibling crawling into my bed each night. 

All my hopes for my children are deferred. My son's childhood is being viciously ravaged by these diseases. I am helpless. I cannot cure him. All I can do is read, read, read and find the best doctors possible. There are nights when I go to bed feeling that my ribcage will crack from the pain in my heart.

This is not how I pictured my life to be. I have a loving husband, two wonderfully sweet and adorable kids, a crazy hyper dog, a picket fence, a career I love. A bicycle.

Yeah, MY bicycle.  See? I can't stay miserable. 

Somehow, everything slips away when I'm on that bicycle. I plot out my next blog. I even think out entire books. If only I had an intravenous feed from my head to my computer! I revel in the rich green of summer, the sun-streaked leaves, the splashes of heat, the chipmunks that dart dangerously close to my bicycle tire.

On those early, chilly mornings before the humidity hits, I race down the trail, searching for snakes to avoid in the area my son calls snake territory (aka snake terror-city.) Skimming the road at 37.5 mph and feeling guilty after (don't scold--there were no cars and I have a good helmet.) Dreaming about the day I have fewer responsibilities and can ride without a helmet, letting the wind do what it will with my hair. Dreaming about riding cross-country with my bicycling family.

All these life-long lessons I get on the road: Lesson 1: Caffeine, which normally makes me shaky, helps me kick ass. But save it for the end of the ride, because the crash (not literally) will come. Lesson 2: When tired, put both feet on the ground. Last time I bicycled about 20 something miles on about 5 hours of sleep, with just one more mile to go, I tumbled over at a complete stop because I didn't unclick my right cleat and leaned in that direction. Lesson 3: I need to always do something for myself. Right now, bicycling is it. 

We might not work our way up to bicycling 100 miles in a single day this summer. We might settle for the 72 mile ride. Or even the 50 mile ride.

But heck, I've got my goals, and if it's not this summer, it will be sometime this year. I am going for the century and I will do it! This is one dream that will definitely not be deferred indefinitely.

P.S. For those of you who want to join us...The North Fork Century is August 26. Look for us or ride with us. We'll be wearing those cool t-shirts designed by my husband. And having a great time!

 

Saturday
Jul212012

You know you want one!

These are the t-shirts that we will be wearing when we do the North Fork Century (however many miles we accomplish.)  Don't you want one? They will be available for a limited time.

You can buy one also and help spread the word! (In fact, you can sign up to bicycle with us--25, 50, 72 or 100 miles!)

Please BUY a t-shirt and wear it everywhere! Email me if you're interested. Our first goal is to spread the word. If we can get the price low enough, we would like to donate part of the proceeds to research for PANDAS and Lyme.

We need to know how many people are interested in purchasing one in order to calculate pricing. Right now, pricing with shipping will be in the $20-$25 range but if enough people are interested, the price can drop considerably.  

You can email me or reach me through Facebook.  Thank you in advance!

 

Thursday
Jul192012

Food, Glorious Food...One Grain More!

I'm mixing musicals here, but you get the idea. From Oliver to Les Miserables, the point is:  We are deprived. This video totally put a mile-long smile on my face. I know it will put one on yours as well. And we all need those smiling moments!

We avoid high-fructose corn syrup.  We also keep Kosher. Well, semi-Kosher. You see, I didn't grow up Kosher, and neither did my husband (he does it for me) and when we bought our first Thanksgiving Kosher turkey...well, it still had some feathers on it. I'm so not a farm girl. Do you know how hard it is to call a turkey company on Thanksgiving to ask how to pluck their turkey so that you can cook it? Oy. Eventually, we began buying organic meat. I know it's not really right, but compromises need to be made.

So now our goal is to also go gluten-free. This is a process and we are progressing. Udi's bread is OK. Glutino's crackers are good. Trader Joe's is a great resource. Israeli salads, Indian food with turmeric (anti-inflammatory) and sushi are all more than acceptable. My son, the one for whom we're doing this, is the least enthusiastic. What makes it even harder is that we recently discovered H-Mart, an Asian supermarket that sells the BEST dumplings (vegetarian!) outside of NYC (or, I guess, China.) And kimchi, green tea, freshest fish, RICE noodles...you get the idea.

But hey, some of my friends are gluten-free, sugar-free, yeast-free, dairy-free, nut-free, soy-free, yada yada yada. Why should we complain?

Healthy cooking:
I have learned NOT to use coconut oil when I make GF blueberry muffins because my son thinks the muffins taste like coconut. And he no longer likes coconut. Did I mention that food aversion is a PANDAS symptom? We have food aversions and then we have food aversions...lately, he doesn't like something IN THE MIDDLE OF EATING IT! Oh, PANDAS is very exhausting sometimes. My poor little starving boy.

The family is already suspicous of my baked goods. In the first place, I'm not a great cook. I could live on frozen (cooked) vegetables and chickpeas. Anything for a which a microwave is used.

In the second place, I try to sneak in veggies wherever and whenever I can.  When my son was 5 and not allowed to bring PB&J to school, I made him muffins that had carrots, zucchini, yogurt, apples, the kitchen sink and a few bicycle tires thrown in. A Vitamix makes magic. He loved it. Add with enough vanilla and cinnamon....

But I just can't fool these kids anymore.

Really-I swear I only did this once--I mixed ground, green spinach leaves in regular, sugary brownies. It was the rubbery texture that gave it away.  Nothing green about it.

Back to the video.  I LOVE Les Miserables. And those of us keeping everything-free? Not so miserable. Just ask my son. The one who says there's no food in the house.