Reading Franklin Rides a Bike

Naomi has been wanting to read "Franklin Rides a Bike" a book whose title makes me crazy. Since the book is about Franklin learning to read HIS bike I wish that was the title....but I digress.

Tonight I read it to her and she interrupted me over and over again telling me what has happening.

When she asked me to read it again I suggested that she should read it to me.

Her version of the book was fantastic. Details from the book that she has heard me read over and over again were sprinkled with her general questions and observations about the book.

Is Franklin's swing a piece of wood?

This is Franklin's bike.

Why don't animals wear shoes (Franklin's friends are such characters as Beaver, Porcupine and bear)?

Who will swing next to him?

When she asked the question about swingining I suggested that maybe Naomi could.

"I can't swing with him. I'm not an animal,"Naomi said with a crinkle between her eyes and a very matter of fact tone in her voice.

"I'm a unicorn."

dreams

I've been putting off writing this one for a while.

It is so sad and encouraging to me that I've wanted to write it. Somehow writing it makes it really real too...so I haven't done it. Until now.

I really wanted to do it right away so I'd have the exact date that it happened. But I didn't do that. So now I have lost the date. Such is life.

On many mornings we ask the kids if they had dreams the night before. They often say yes and when we ask them what they were about they look around the room and clearly make up dreams based on what they see.

For example we might ask Naomi what she drempt and she'll look at the floor and see a toy truck and one ballerina slipper and say, "I had a dream about a truck and a ballerina slipper." Super creative like that.

Recently. Maybe 2 weeks ago Eliot offered up his dream from the night before. He wasn't provoked. No one asked him. I was even writing something on the computer I think when he casually said he'd had a dream that night before.

Here is how he explained it:

Mama. I had a dream last night that I was trying to take my medicine and the pills were falling all over the floor and I couldn't get all of them. Then you came in with a glass of water and I could get all of them and take them.

That is all. That was it. He shared it. No strong emotion one way or another. He seemed glad or maybe relieved that I showed up with the water and he could take the pills.

It broke my heart a little bit though. He is having dreams about pills. Anxiety dreams (at least that is how I hear it).

Lately he is taking an antibiotic for a cough he had for several weeks.

Every Thursday he has had to take 19 pills.

On every other day it is somewhere between 11 and 13. Every day for 3 weeks.

On other days he takes either 3 or 4 or 11 pills.

And he dreams about it.

My 4 year old dreams about taking chemotherapy.

Sigh.

Blueberries

The kids love blueberries. Naomi particularly loves blueberries. On several occassions she has eaten so many blueberries that her poo smells like blueberries and is such a deep shade of purple that it looks black. Until we wipe her bottom and realize she has literally pooped a gigantic blueberry. But I digress...

The other day they were eating blueberries and Naomi asked if they ate 'so many' blueberries if they would turn into blueberries.

I said I thought they might do that.

Then she asked if they ate 'so many' babies if they would turn into babies.

Before I could answer she pretended to grab babies out of thin air and eat them up. Each baby in 1 gulp.

Then she said, "I'm a baby" and make the most fakey baby cries ever.

Then she enrolled Eliot into her game. They ate babies, turned into babies and cried like babies.

As some writer I once heard interviewed once said....kids are insane...if you really listen to them...they are insane.

1 2

Last night in the car on the way home from a Memorial Day party I witnessed the following conversation:

Eliot: Mama. How many legs does an inch worm have (Eliot was holding an inch worm that he found at the party).

Me: I'm not sure Eliot, will you count and find out. I'd really like to know (and I did really want to know).

Aron: Eliot, how many legs do you have?

Eliot: (at the top of his lungs) 2!!!!

Naomi: (counting her legs) 1. 2. Legs. 1.2. Arms. 1.2. Eyes. 1.2. Ears. 1. 2. Ginas.

Huh?

Relationships

I got to pick the kids up from day care today and when I got there a girl named Johnetta told me Eliot isn't always her friend and he is always Isadora's friend. She was clearly mad about the whole deal.

When Eliot came over to hug me and say hi (so rewarding!) she talked to him about it. Again, clearly upset.

"I'm not your friend Eliot!"

I tried to engage him in the conversation.

Which is ridiculous because I'm horrible at refereeing, particularly when I wasn't there and especially when I don't know how they do these things at school.

A teacher came over and she talked with Johnetta and told her to be nice and I told the teacher that it sounded like maybe Eliot wasn't very nice earlier.

That was it.

At dinner thought I decided to ask Eliot about it.

It turns out that Johnetta wants to talk to Eliot all the time, even when he wants to be alone. Today is day 4 of sterroids so I'm not surprised that Eliot wanted to be left alone (and oh how it breaks my heart that we send him to school on day 4 of sterroids and oh how it makes me glad we're not sending him to kindergarten when he is on sterroids....but I digress).

Eliot said Johnetta won't leave him alone until he says he isn't her friend.

So we discussed it.

I told Eliot that I wondered t if next time he might tell Johnetta that he wants to be her friend and wants to have some time alone. That way she would know that he still likes her and be able to leave him alone.

For the first time ever he seemed open to my wondering (read: barely disguised motherly advice).

He said he thought it would work.

He is rarely open to chatting about his day at school so this was an awesome moment.

They he opened up. He said she always wants to talk to him and be around him.

I asked him if there was anyone he always wanted to talk to and be around.

He said no. I said I thought Johnetta probably really likes him and that I know he really likes Sawyer and always wants to be around him and talk to him.

Eliot got a surprised look on his face and then said he didn't want to talk about this anymore.

Then he laid on the floor.

After a few moments of quiet he asked, "Mama, do you have anyone you always like to talk to and be around?"

The conversation went on. I told him there were people I like to be around and work and the kids asked a million questions about them, including what they wear.

It was a big moment.

Talking about how to navigate the world.

Honestly.

Goodness. I hope it was helpful to Eliot.

He did say he might try my idea with Johnetta.

I want so badly for the kids to learn things to help them take care of themselves and be honest.

Those conversations...and seeing me do things like that for myself seem like the ways they learn.

This post is getting boring.

I don't care.

This was a big thing for me. I wish I had the conversation and how it felt on video.

I think I'll engrave it in my heart.

This and so many other moments. One time when Eliot laid his head on my shoulder when he was about 18 months old. And so many others...

I'm Doing Magic

Naomi found a pink toothbrush (in its originally packaging) in a drawer the other day and HAD to have it.

I took it out of its container and she carried it around for the rest of the day. Oh so happy she was to have a brand new PINK toothbrush.

At some point in the day she was waving it around and she said, "I'm doing spells."

"Ooooh you're doing magic, Naomi?" I said.

"I'm doing magic on the sky," she said.

"What are you turning it into?" I asked.

"Pink."

Freakazoid Freak Out

So this whole Swine flu thing is freaking me out.

Like pretty close to really freaking me out.

Eliot's compromised immune system coupled with a possible world pandemic of a flu that just sort of gestates for a few days while people travel the globe at will freaks me out.

Probably unnecessarily.

But still freaks me out.

I know it doesn't help to put my energy here. I know opening that door is not fruitful. I know just being honest is good too.

So there it is. Despite my best efforts it freaks me out.

And while I freak out I'll visualize two healthy children in my house. I'll visualize safe children. I'll visualize a full and active childhood and adulthood. I'll visualize my children growing up together for years. I'll visualize Eliot's 90th birthday party - where he blows out his own candles on his own fire-work-like cake.

And then I'll pray as I often do. God keep Eliot safe. Keep Naomi safe. Keep them here and growing and happy and healthy. Let them grow to adults. Give both of them full, healthy lives. Please, please, please God.

Quote of the Day

Naomi to Aron who was changing out of his work clothes and into his soccer playing clothes.

"Daddy, I can see your big, huge butt."

Ha!

The conversation that lead up to the quote of the day.

Naomi to me who was changing fro work clothes to hanging out getting snot wiped on me mommy clothes. "Mommy I like your underwear."

Naomi to me while she used her own hand to put my underwear back on my butt from where it had slipped a bit when I took my pants off. "Mommy I can see your butt."

Shampoo'd

During their bath tonight Eliot decided he wanted to wash Naomi's hair. He was very careful and sweet to thoroughly lather up her noggin and then carefully got the shampoo out. Asking me several times if he got all of it.

Then Naomi said she wanted to wash Eliot's hair and with a little less care and a little less gentleness she too washed his hair.

Eliot also said he'd give Naomi her bath. He washed her arm pits for her and then said he would wash her bottom. He stuck the bar of soap between Naomi's butt cheeks and they both cracked up (ha ha no pun originally intended - but now thoroughly enjoyed).

Unsolicited Hug

I washed the kids' sheets today and made their beds.

When I made Eliot's I put sheets on the bed and nicely (as nicely as I ever do this) put his Transformers blanket on the top and folded over the top.

It was one of 60 kajillion household chores I did today and it just sort of blended in with the rest. Not long after I did it Eliot came into his room and jumped on the bed. And rolled around. And exclaimed how happy he was that I made his bed like that.

Then he jumped off the bed and ran over to me and gave me a hug.

Unsolicited.

Unexpected.

Real.

A real live hug.

Thank you for making my bed like that Mama.

He jumped back on the bed. Said he felt so comfortable in his bed. Stood on the edges and wanted me to see how he was on his bed.

He was all bright eyes and wild about his bed.

Meanwhile I kept sorting laundry.

At the time it was just a moment in the day. Just another time I was being asked to spread my attention across 2 kids and whatever I was trying to do.

Later tho I realized, Eliot gave me an unprovoked, appreciative hug.

It was freaking great.

When Am I Going to Get Sick Mama?

Tonight Naomi asked me when she is going to get sick.

I clarified.

Me: Sick like Eliot?

Naomi: Yes.

Me: Sick like a runny nose and a cough like Eliot or cancer like Eliot?

Naomi: Cancer like Eliot.

That was what I was afraid she was asking. How long, I wondered, has she been anticipating getting sick like Eliot. After all she does everything else he does and usually a lot sooner than this cancer thing has panned out. How long has she been waiting for this?

Me: You're not going to get cancer Naomi.

Naomi: Why?

Her why was confused. Goodness. Why not?

And Eliot added his own question.

Eliot: What is my cancer Mama.

Then I realized. I don't think we usually say cancer. We don't usually say much. But we usually say leukemia.

Me: I guess I should have said leukemia Eliot. Naomi isn't going to get leukemia.

Eliot: What is leukemia?

Me: Well you take medicine every night and have a port and have procedures because you used to have leukemia and now you're in treatment for it Eliot. Not all kids do that.

Eliot: Why not Mama?

Me: Not all kids get leukemia.

Naomi: Will I get leukemia Mama?

Me: No Naomi, you won't get leukemia.

As I answered that I hoped that my statement was true. 100% true. I have thought about this. The horror. What if Naomi gets leukemia. Not every time. But many times when Naomi gets over tired I get a little horrified feeling...what if this is leukemia and we have to start all over again.

Eliot: Why don't all kids get leukemia?

Me: Not all kids do Eliot. Most kids don't.

I could feel his brain churning on that one. Huh? Not all kids have leukemia? Not all kids will? I'm not just having my turn at this...like I had my turn at learning to poop in the potty...like I have my turn of learning to ride a bike? Huh?

Eliot: Will Dora get leukemia?

Me: No.

In my head: I really hope not. It isn't genetic. She won't. Right. She won't.

Me: Eliot, Dora won't get leukemia.

They both were quiet. Thinking.

This whole thing is entering their consciousnesses. When Eliot was diagnosed I instantly did the math. Will the kids remember this I wondered? I hoped not.

I think they will.

I think they're old enough.

They'll both remember some of this experience.

I wonder what they will remember.

I wonder how much space leukemia will take up in their futures.

I've heard from so many people that this will mold the kids. Will give Eliot a deep maturity. A depth. A calm. A wise understanding. Naomi, compassion. Perhaps a feeling put out at being 3rd fiddle to Eliot's 1st and 2nd fiddle.

Who knows.

For now.

Naomi knows she won't be participating in what she thought was a regular part of childhood.

And Eliot is now seeing that he isn't either.

My feet don't cough

Eliot has had a cough now for over a week.

At one point at the beginning of his cough I went up to his bedroom at night to put some Mentholatum on him.

Aron heard that putting it on kid's feet really helps the cough die down and we're up for trying anything so I was smearing the smelly stuff all over his feet.

Eliot looked at me with scrunched up eyebrows...My feet don't cough Mama.

Nope. They don't cough do they, Eliot.

Was all I could say.

Well that. And a belly laugh.

I wonder exactly how insane he thinks we are on a daily basis.

Sit On My Lap Mama

Lately Naomi is very snuggly, lovie kid. So snuggly and lovie that it is both wonderful (sometimes she gives me a huge bear hug and says we're stuck together...other times she hugs me and says, 'my Mama' - very sweet).

She is also sometimes infuriating. There are times that she wants to be held constantly. No matter what I'm doing or how tired I am or how much my back hurts or what else I'm doing.

Not so sweet.

She also wants to sit on my lap at the dinner table. Always.

That is sometimes wonderful.

Sometimes not.

What is always wonderful is that when she asks she always says, "Mama come sit on my lap."

Yup.

Mama. Come sit on my lap.

She means she wants to sit on mine.

And she has it backwards. And there is no way I'm going to point that out to her.

It is too wonderful.

Kisses

Well before Eliot was born I was spending some time with his God Mommy Kesha and her son Will. Will was an infant and Kesha was kissing him like crazy. She said she was so happy to have a son of her own so she could kiss him whenever she wanted to.

At the time I was still not terribly interested in having kids of my own and couldn't comprehend wanting to kiss a baby that much.

When Eliot came along I gave him lots of smooches. Naomi too.

It was just at thing. Not something terribly special. Special. Not terribly special.

Then when Eliot was diagnosed and particularly when he was on sterroids and now when he is on sterroids (which he isn't today) he makes it very clear that he doesn't want hugs and kisses. He even sometimes wipes them off of himself.

Tonight I leaned over and smooched him and he told me very matter of factly that he didn't feel like getting a kiss right then.

Needing to ration my smooches is a bummer.

And something I'm willing to respect.

Tonight though I realized there will be a time in his life when I can't give him smooches at all. A time when he won't want hugs or kisses. Then he'll move away and I won't see him and then when I do...who knows....he might not want hugs or smooches then either.

So today he is here. Smoochable. Sometimes.

And someday he won't be here. And won't be smoochable.

Now I get Kesha. Thrilled to be able to smooch that kid whenever she wanted to.

When Eliot started rejecting smooches and hugs I realized it was my preview to the teenaged years and beyod.

Tonight I teared up about it a little bit.

Not a lot.

But did tear up.

Good tears.

Reminding myself to enjoy him while he is here.

Prayers

6 months before Eliot was born. 6 months. Exactly. To the day. A little baby was born in Duluth. His parents Michael and Cara (Kara?) are a couple that Aron married and they went to St. Paul's in Duluth.

I was pregnant at the time and knew Eliot was due in about 6 months.

But then magically 6 months later Eliot was born. To the day.

The other baby's name is Ethan and Eliot's name is, well, Eliot and at the time I thought it was so cool.

Two boys. 6 months apart. Both with names that start with E. Both 5 letters.

Yes. The Mayor of Nerd Town. Nice to meet you.

Naomi was born 18 months later. On January 18. Almost exactly on Ethan's 2nd birthday.

All very cool.

We've stayed in some contact with Michael and seen pictures of Ethan but haven't really seen him until this morning.

Michael and Ethan came over this morning.

The first thing Ethan said to me was that Eliot was sick but he got better because they prayed for him.

Ethan and Michael used to pray every night for Eliot.

Every night.

Even though Ethan didn't really know who in the world Eliot was. He prayed.

Eliot has now been replaced on their prayer list by a little girl named London. She is 4 weeks old and weighs 5 pounds and has already had open heart surgery.

Isn't that fantastic.

Eliot has been replaced on a prayer list.

Pause.

He has been replaced.

Deep breath.

He has been removed from a prayer list.

+++

Prayer lists have been on my mind this weekend.

It hit me at a meeting I was at on Thursday that churches, literally all over the world, prayed and might still be praying for Eliot.

Just months before his diagnosis I was at The General Convention of the Episcopal Church and met people from Italy and other countries around Europe. And I met people from all over the country.

There is a well read list serve associated with General Convention and when Eliot was diagnosed it was announced on that list serve.

So many of our friends on that list and from all parts of our lives prayed for Eliot.

He was prayed for at the National Cathedral in Washington DC and at the chapel at the Episcopal Church offices. And at large and small churches from all denominations and religions all around our city and state and country and world.

I have gone to some of those places and wish I'd kept better track of all of those places.

And now I'm aware he is off one of those lists.

Because they prayed for him. And he got better.

And so many of them don't know Eliot, might never know Eliot.

But they pray.

For our little boy. With pin prick holes in his chest and the base of his spine. Our little boy with a port in his chest.

For our little boy.

Who loves trains and claims to love the colors black and white more than the rest. But I think really loves pink more than the rest.

For our little boy.

Who runs faster than any kid I've ever seen run.

Who can throw a ball with crazy good accuracy.

Who is kind to his sister most of the time.

Who made a balsa wood airplane model yesterday and followed the directions with impeccable accuracy.

They prayed. Ethan prayed. Many still pray.

And pray.

And pray.

Saturday Afternoon

For about 15 (maybe 20) minutes I laid on my couch today.

Just laid there.

Laid there and listened to the sound of the traffic on Franklin Avenue. A steady flow. Just moving along.

And brittle, dry leaves blowing around in circles outside on the cement. That sound. The scratching, whooshing sound.

Every once in a while I could hear branches moving and a little breeze.

I just laid there.

After a few minutes my body started to relax.

I remembered the feeling of Saturday afternoons in San Francisco. Saturday afternoons after I'd run several miles that morning, showered, eaten and done homework. Saturday afternoons when I'd often lay down to read a book - usually for class - sometimes not.

Saturday afternoons when I'd often have plans for the evening.

When the afternoon was just another part of the day.

When a quiet Saturday afternoon was typical. A natural part of my week.

I missed those days.

Deeply.

I longed for that.

The quiet. The consistent nature of my old schedule. My schedule.

I reminded myself that someday I'll have that again. Someday the kids won't need me every moment. Someday they might not even be around. And after that they'll move away. They won't even be around on Saturday afternoons.

I told myself that I'm just on sabattical from those sweet every-Saturday Saturday afternoons. That I've just taken these years off from that life.

That I assume there will be years when Saturdays might even feel busier than they do now. We'll be at sports events or school events or who knows what else.

Then the quiet will come back.

The quiet. Predictable Saturday afternoons.

They will.

And until then I'll steal as many moments as I can.

Lying there.

Listening.

Feedback from Naomi

Tonight, after many weeks of Naomi begging to plant some flowers she picked out at the store, we finally opened the seed packet. Somehow-- in the way only Naomi can pull off --she manged to get her two aunties to plant the seeds while she literally supervised from inside the house.

She might as well have been sitting on a lounge chair drinking an icy cold Coca Cola.

As she watched she said - in her speed talk - the only way she talks lately.

AuntieLaurieyourbuttisstickingoutalittlebit.

Never miss a chance to give feedback to your minions Naomi.

Seeing this Now

Now that we're less than a year from the end of Eliot's treatment I have a different perspective on things.

Now I can let the terror of all of this sink in. Just a little bit more.

Tonight while driving home I had this huge realization that I've believed it is my job as a mom to protect my kids.

Not hover over them and attend to every potential scrape and bug-bite.

Protect.

Keep safe.

Determine what kind of things they're exposed to and what not.

That kind of protect.

The horror of the fact that leukemia got past me. Got in. Got all of us on my watch hit me.

My powerlessness in the face of this.

My horror that it is here. Got Eliot and got Naomi.

Got us.

That hit me.

How could I let it in.

I couldn't keep it away.

Like the big strong hands of the rock guy in The Never Ending Story. I couldn't hold them. Couldn't keep it out.

Never could have.

Never. Ever. Could have.

++++

note: I realize there is more to this story. That I have protected them from so many things. The things I could protect them from. The things I could control. That of course I was powerless with that and have been powerful with so many other things.

I get that.

And I get that this got through. It did. And that is just a fact.

The Birds and The Bees

Last night Naomi asked me where I got her.

I told her I was confused...where did I get you?

Yes Mama. She said.

Where did you get me?

I told her I didn't understand her question.

Did you get me from Target Mama? She asked.

I smiled and giggled a little.

Nope. Naomi. Not Target.

I got you from God and from a miracle. You are magic.

She accepted that answer.

Later I realized I think she was asking about the birds and the bees and I missed it.

I usually say things about how she grew in my belly when she was a baby and all that jazz.

I'm sure we'll weather the birds and the bees conversations as well as any mom and daughter. I want to be honest with her and I'm sure I will.

What I want to tell her (and not because I want to avoid the details) is that I got her from dreams and dew on the grass in the morning, from the sounds of birds singing and warm afternoons with a good breeze, that she comes from moose prints and the night sky full of stars I can't chart, from the crunchy sound of snow, the oozy feeling of mud between my toes, from wild flowers and wild horses and from fairies and tears and jack rabbits that run all criss-crossed and stones rubbed smooth by water and wind and the smell of sheets that dried outside and strawberry jam and the relief of aloe on a sunburn.

From all of those things.

And from so many others.

quotes from Eliot today

Coming down stairs to watch tv (can't see it, can only hear it)

Walking as quickly as possible down the steps

"Oh Barak Obama tv is on. It's my favorite kind of tv"

+++++

Mama. (there always seems to be a period after Mama)

Do you think the plane could leave a little early so we could have our daddy back?

Extraordinary things about today - In no particular order

I turned the heat off for a few hours.

I had some of our windows open for a few hours.

I said the following sentence: "Naomi do not put the plumb in your vagina and then in your mouth."

Naomi then said: "But I just washed it."

And I said: "I know you washed your vagina Naomi but I still don't want you to put that plumb in your mouth after it has been in your vagina."

Note -vagina is sort of a general term that refers to the 'area' in our house - but STILL.

On a completely different note.

Eliot looked at a newpaper article today and said, wide eyed: "Look Mama, Barak Obama's feet."

He is so fond of Barak Obama that he called him Barak Obami the other day and now he recognizes his feet.

Will You Check on me When I Sleep

I was really strict about bed-time when Eliot was an infant.

I was medium strict about it when Naomi was an infant.

I believed that strict infancy bed-times led to strict toddler bed times and good sleepers in general.

Sleep is a big deal to me.

Many good nights of sleep are what I believe allowed me to get through college and grad-school with great grades and tons of hours of work and a very amateur athletic 'career' (I'll call it). I had a strict bed-time for myself when most of my friends were out partying. Yes. Major nerd.

Sleep. Glorious sleep.

I'm not a sleep-er-in-er. Just a person happiest on a good nights sleep that was preceded by about a life time of good nights of sleep.

Lately the kids ask me to sit in their rooms while they fall asleep.

This is not the model of strictness I once imagined or applied.

Tonight when I had sat in the chair long enough to go almost batty and Eliot still wasn't sleeping I told him I was going to go and that I'd check on him later.

He smiled. Will you come look at me when I'm sleeping?

Yes. I said.

Will daddy come too?

Yes. I said.

The other morning I shared with the kids what they looked like when they were sleeping.

Naomi, her arms out wide, soul open to the world, completely vulnerable.

Eliot, his arms curled close, belly down, head in the pillow.

They giggled when I told them this.

And tonight Eliot betrayed himself, a little boy, glad to be checked on. Glad to be watched.

And me, glad to be there. Glad to see.

Aron Made this Great Movie

Just a normal day less than a year before treatment ends.

March Fo(u)rth

One year from today the party begins.

Here is how I imagine it.

We'll all go to Eliot's clinic apointment. He will be port-free. He'll get a finger poke and a quick look over. We'll bring presents to everyone. We might even go visit 5B and the emergency room.

We'll all go our for breakfast or lunch or something and have a fun day.

It will be March Fourth - it will be Eliot's first chemo-free appointment. It will be day 1 of the March Fo(u)rth extravaganza.

He'll go all day without taking sterroids - that night for the 4th night in a row he'll go t be without taking chemo. If he wants to drink milk and eat 7 oranges before bed he can - because it won't mess with his meds. Maybe with his stomach - but not his meds.

Friday we'll have a special dinner with family and perhaps welcome out of down guests.

Saturday we'll woop it up with volunteering and something fun at a firestation or something. We'll invite everyone.

Sunday we'll celebrate with a blessing as we all March Forth.

Family, friends, fun, lots of thank you's by us to others.

Just the thought of this makes me feel light and hopeful.

March Fo(u)th!

The best name for a day of the year.

12 months left

1 year from yesterday (March 1, 2010) Eliot's treatment ends.

Yesterday marked that day and I broke down in tears multiple times during the day. 1 year. Just 1 year left.

Gosh darn it. Just writing about it makes me cry some more.

I'm not sure why it makes me cry. Maybe this is how I actually take in the horror of the past few years. Maybe it is because I'm jubilant about this. I'm pretty sure I've never used the word jubilant before...it is what I am. Jubilant.

Just 1 more year and then Eliot will be chemo-free. Dentist appointments won't be preceded by anti-biotics in the form of a horse pill. We can go places without lugging chemo, a thermometer, antibiotics, tagaderm and 'mayonnaise'.

He'll receive his final doses of chemo in his port next year on February 4th and they'll take his post out soon after that. He'll still have to take antibiotics for 3 months afterward. But big deal! No more chemo.

Just 1 more year of fever = emergency room.

1 more year of poisoning the hell out of my kid to make sure he lives.

Part of the joy of all of this is that yesterday passed without much fan fare. Other than the 17 gallons of tears I've shed. Eliot played with Naomi, refused to take a nap, ran around in his underwear for most of the day, played with legos and his transformers, did yoga with the babysitter and slept in Naomi's bed while she slept in the guest bedroom - for no big reason.

It was just a day in his 4 1/2 year old life.

This morning I told him he was tall and he wanted to know if he looked like he was 5.

Those are the things on his mind these days.

No marking of time, future events, past fears or suffering.

Just.

Today.

Right now.

Closed for now

For whatever reason I'm not drawn to this blog lately. So I'm closing shop for now. I imagine I'll return and if/when I do I'll send you a note.

Thanks for your loyal readership.

Oops I did it again

I signed up for another marathon.

This time in Dublin. Dublin, Ireland.

I'm insane.

Last year I tried this and was injured.

This year I need to raise more money (I'm raising money for The Leukemia and Lymphoma Society) and I'll be gone for a long time.

Aron is amazing and supportive and says I should go for it.

So I am. I'm going for it.

I ran 5 miles on Saturday and felt really good considering the fact that I didn't get much sleep last week (another trip to the hospital for Eliot - he is doing just fine).

Please support my fund raising efforts. I'd really appreciate it. All of the money you donate is tax deductible and $.75 of every dollar you give goes directly to research and supporting families like ours.

Here is where you can give.

The Many Faces of Eliot

This could probably be the title of my blog everyday. Well that or 'the many faces of Naomi'.

They both have such a variety of interests (Naomi told me today that if she got to ask Santa for a present she'd ask for 'pink' right after she told me she really wanted her red car to play with and wanted to play with the trains).

So in the vain of the many faces....here is what might be a first installment....

Some pictures from Gramma and Grampa

It's Not a Train!

Eliot, Naomi and I spent part of the morning at the clinic. Since I wrote that post about how great Mother's Day was I've been paying the price (a sleepless night and 2 sick kids who are clingy - I so don't have my body back). Naomi has yet another ear infection. Poor, sad kiddo. To top the lovely day off I spent 3+ hours in the emergency room with Eliot this afternoon. He had a 102.5 degree fever. Joy. Joy. Luckily his counts were high enough and they sent us home. He was perky and happy this evening.

God be praised!

That is not the point of this post though.

While we were at Naomi's clinic visit (where she was mostly inconsolably the entire time because she can't stand to be poked and prodded and I think she always thinks one of her barbaric parents are going to hold her down while she gets 4 shots in her legs) the doctor was listening to her chest.

In my lame-ass attempt to help the mood be light (not only was it horrible because she was a mess, Eliot didn't feel well and I was freaked out on superstition - the doctor was the guy who sent Eliot off to the hospital the day he was diagnosed) I asked if Naomi thought the doctor might hear a train when he listened to her chest.

Eliot got annoyed when I said that.

It's not a train! He said.

He had a grumpy, pissed off look on his face.

It's not a train!

It's God.

I'm confused.

Happy Mother's Day to Me

Wow. What a day. So many wonderful things happened today. It was heaven.

The kids slept until close to 6:30 am. They were in great moods this morning.

We had a wonderful morning before church.

Then we went to church and Naomi went off to children's church with Aunt Nancy and Uncle Rob and Isadora and Arlo and Eliot and I stayed in church with me and was very happy entertaining himself. I was able to listen to the entire sermon without interruption for the first time in who knows how long.

Neither kid hung on me.

I felt like I got my body back.

At the coffee hour Aron ran around and played with the kids. The 3 times the kids came to ask me for something I said, "go find Daddy. He'll help you."

I never do that.

But today was Mother's Day. And I did it.

Aron had my favorite Jelly Bellies for me. Juicy Pear. Mmmmm.

And a wonderful note.

And a gift card to Ann Taylor. My new favorite shopping center of decadence and wonderment.

The kids and I came home and had a great lunch. Then they fell asleep.

I watched a movie on tv and they slept so long I got a little tiny bit bored.

Then Nan and Rob and Laur and Amelia and the kids came over with take out Thai food. All of the adults sat around and talked for a long time while the kids played outside, happily by themselves.

It was sooooooooooo awesome.

I just took a hot bath.

Awesoooooooooooooome.

I feel like we made it through the hellish infancy, leukemia shit hole we were in.

The kids are getting independent and smart and fun and wonderful. I'm enjoying them. My body is mine again.

Sigh.

Yeah.

Mother's Day wonderfulness.

Why Did You Call Me Buddah Mama?

Rob's radio story aired around 1:30 pm today. You can hear it and read it here.

We didn't know exactly when it would air and we haven't had Internet at the house for the past few days and I didn't want to miss the show so I chose to let the kids stay awake at nap time so I could listen to the show. We were driving home from a fun morning at Nan and Rob's house and I just kept driving around.

Naomi was sleeping. Eliot was sitting in the back seat of the car singing the alphabet and other random songs. When the story started he got quiet.

Then he said, "why do you call me a Buddah Mama?"

"What's a Buddah."

I was desperate to listen to the show.

And really wanted to respond to him.

And then got nervous that there might be something in the show I didn't want his young ears to hear.

So I said, "The Buddah is very calm Eliot and you used to be really calm like the Buddah."

"Why was I calm Mama?, why were you calling me the Buddah Mama?"

From there I can't remember exactly what I said or what he said.

I know I told him that I wanted to tell him all about the Buddah after the radio show was done.

We both listened in silence.

At the point when we talk about him being 'put to sleep' at the hospital I looked back at him. He smiled, sheepishly. Proudly. He seemed to be enjoying hearing the story.

When it was over I said (and I'm really proud of this question) "Eliot you wanted to know about why I called you the Buddah, are there other things you want to ask me too?"

He said there weren't.

I told him that we talk about Jesus and God at our church and some people in other churches talk about Buddah.

We have a book that asks the question 'where is God' and at the end of the book when it says, "God is everywhere." I always say, "I see God in you Naomi and Eliot." And they always say they don't want me to.

So today I said to Eliot that just like I see God in him I also saw the Buddah in him.

Eliot told me that he didn't want me to see God in him. I asked him what he wanted me to see in him.

He said trains.

"I want you to see trains in me Mama."

And so on the day when he heard his mother and his uncle talk about him on the radio he took it all in. He smiled. I don't know what he thought or felt.

Except that I know he wants me to see trains in him.

Time

Today. I came home from work. Content. Happy. To find Eliot, Naomi and Aron playing in the front yard. Content. Happy. The house smelled of chocolate chip cookies. The kids were full of dust from the yard.

1 year ago

2 years ago

3 years ago I got pregnant with Naomi.

4 years ago I was 6 months pregnant.

5 years ago something in me went crazy and I starting thinking having kids would be a good idea. It surprised me. It surprised Aron more.

Home. Home on the Range

We're all home. All 4 of us. 2 very tired adults. 2 very not sleeping kids.

Home.

Bellies full of True Thai food to celebrate our return.

Eliot on antibiotics. Naomi on some others.

36 hours in the hospital is so much more bearable than 12 days. It was a big deal. And not a big deal.

We didn't have to swallow new life-shattering news. I wasn't already burned out. We had daycare for Naomi already lined up.

Sigh.

Home.

Update

Eliot is still in the hospital. All of his tests have come back negative (except the strep throat culture which just needs more time). Lots of negatives are a good thing.

He clearly feels fine. Except for the fact that he is tired and cooped up beyond belief.

He wants to wander into the hall and do something. He can't. He is in isolation.

I wonder why he can't run around in the hall when he is sharing the same stale air as everyone.

Oh the mysteries of the medical deal.

So its all good news today.

The earliest they imagine discharging him is Wednesday. I'm going to beg and plead for Tuesday evening.

Every day is expensive and boring and dumb and they still haven't given me a reason to believe that he is in better shape there, bored, being woken up and kept up, eating salty, crap food than he would be at home running around, having fun, sleeping and eating decent food.

The only reason I've been given is a reason I haven't really been given.

And this is it in all of its dumb ass glory:

"If we let him go home and the 1 in a million thing happens and he gets hurt you'll sue us."

Thats the only reason I can manage to find that makes sense to keep him there.

When we sit down with our usual doctors I'm going to make them give me a reason better than that.

All of these great people saved Eliot's life.

And for that I am grateful.

All of what we're going through right now seems dumb to me. And for that I am not grateful.

Speaking of a This Fucking Sucks Day

Eliot is back in the hospital. This time must for 48-72 hours. I'm tired and bummed that my son who basically feels fine (except for the fact that they kept him up until 2am) is stuck in isolation (which just means he can't leave his room and everyone who comes in to care for him has to wear a funny yellow paper outfit) in a tiny over populated by technology room today.

It could suck worse. We've been at worse before.

Naomi isn't nursing. She is at school today. I have a job that will probably save me from dwelling on this too much.

We've done this before and we're doing it again.

And I'm going on maybe 95 minutes of sleep right now.

And I've been brought back to reality. We've been insanely lucky not to have this happen yet.

The doctors and nurses kept saying last night how surprised they are that they haven't seen us. They laughed that they don't know us. They usually know the leukemia patients well on 5B. They don't know us well.

That is a wonderful thing.

And right now they're over there getting to know Aron and Eliot well.

And last night they got to know my insane amount of smelly gas and horribly nasty smelling feet well.

They heard me ask to send Eliot home so he could sleep. They argued with me about waking him to give him medicine at 4am (I won). They negotiated with me about how often his blood pressure would be taken.

We've been lucky up until now not to be back there.

And I realize what a huge deal it is that I escaped for 4 days last weekend.

And reality is back in my face.

And Eliot will be fine. He had a fever. His blood counts were low. They'll watch him for 2 days and send him home to run and climb and be fine.

All is well. We're just having a bump in the all is well road.

And this does fucking suck.

And it could suck a whole lot worse.

What the Bleep Did you Say?

I haven't been posting much. There are several reasons for that.

1) I'm feeling happier and it has always been true that the happier I feel the less I journal and since my blogs have become my journals I'm here less often.

2) My life has been rearranged time-wise and I'm just haven't gotten into the habit of sitting down to write.

3) This is probably the biggest reason. I've been censoring myself. Many months ago I got nervous about strangers reading my blog and started censoring myself a little. Then I decided to make it private and the censoring ended a little bit.

Then I just started getting self-conscious about blogging for some reason and censored myself a little bit. Then I got over that.

Then in October I had a hard conversation about my use of the word 'fuck' on my blog and since then it's been really hard for me to not censor myself.

I've been keeping up with this blog for the past month and crying my eyes out just about every time I go there. This guy's story is heart wrenching. Horrible. Terrible.

Every time I've been there in the past month I've cried about his story and the amazing way he is telling it.

Today I went there and cried my eyes out because he is using 'fuck' on his blog and I missed my old freedom. My old willingness to put it all out there. My old naiveté. My old whatever it was.

I cried because I remember the days of saying 'this fucking sucks' as he recently did - in a chapel - at a memorial service.

I cried because I recognized how much I've held back here on my blog about what I'm going through since we've passed the 1 year mark of Eliot's treatment. And how much I held back during that anniversary time.

I cried because I realized how wimpy I've been.

In the throes of 'this fucking sucks' days I heard from young people and old people how thrilled they were that I was just saying it like it is. I even had a silly joke with a wise woman at church about the word fuck and we'd use the word liberally in emails.

I've been thinking that censoring myself on my blog is a good policy. It's public. I'm a priest's wife. I'm a mom. The list goes on.

I guess I sort of think that might be true.

And when I read Matt's blog I miss putting it all on the line. Saying how I really feel and not apologizing for it.

I don't know what to do about the whole thing.

In the meantime I'll probably keep blogging a little here and a little there and put the rest of it somewhere else.

I was gone last weekend from lunch time on Thursday until 8pm on Sunday evening. I slept in while I was gone. I did whatever the hell I wanted to do while I was gone. I saw good friends while I was gone. I ate wonderful meals while I was gone.

When I came home I was happy to see the kids. Really happy. I've been patient - mostly - since I got home. I've felt relaxed and pleasant to be around.

I honestly don't know when the last time is that I felt this way. I think perhaps some time in 2003.

Shit.

That is an awfully long time ago.

Perhaps it isn't that long ago.

I think it might be.

Dreams

I remember my dreams almost every morning. I have vivid dreams that fascinate me.

In college I used to bore the hell out of my boyfriend by telling him what I dreamt the night before. He would literally zone out. Aron does the same thing.

It sucks.

I don't talk about my dreams very much anymore because no one else around here seems to care and I just don't have anyone in my life who I talk to enough who seems into the whole thing. I really need to change that.

Yesterday Eliot said something about all of us flying on an airplane the night before. He asked me where we went and I told him we didn't go anywhere. He got angry and raised his voice and said we DID go somewhere and he wanted to know where.

Apparently Daddy and Mommy and Eliot and Naomi all flew on an airplane together.

The whole conversation (although frustrating) gave my heart a little start. Maybe someone else in the family is remembering their dreams!

This morning Eliot said he was singing last night. He could tell me the song or where he was when he sang it and he seemed a little confused about where he was.

Was it another dream remembered?