Naomi

I'm always at a loss when it comes to trying to use words to talk about Naomi. Using words to talk about her feels like I'm filing her somewhere and trying to file her turns out to be too slippery for me. And that is a good thing.

Today she was eating (yes, that's what we'll call it) her lunch out on the front step along with Eliot and I.

We had two picnics out there today - the second of which included Gramma and Grampa Kramer and me walking away with more apple sauce on my pants than I think I've ever eaten in one sitting - and on a day when my clothes were clean and matching and cute.

Anyway... she was eating her lunch with a 'big person' fork out of the kitchen drawer rather than a plastic kids fork. The fork was easily longer than her forearm. Still she was giving it her best try. I noticed that most of her food wasn't making it to her mouth so I picked some up and put it near her mouth. She took it out of my hand with hers and looked at it and threw it (not tossed, THREW) it on her plate and then proceeded to attempt to spear her little, tiny, baby Naomi pieces of food with her big, gigantic, adult-sized fork.

That's Naomi. At least thats a little corner of Naomi.

She is wearing clothes that say 'nine months' on the tag even tho she is 14 months old. She is doing things that the child development books have classified under 18 months and 2 years. She wants to sit on the adult furniture, she wants to walk (oh horror of horrors) down the steps (like an adult), she wants to cook, she wants to do dishes, she can put her own lid on her own glass thank you very much.

I love her complete and utter lack of common sense, her disregard for rules, her slobbiness, her extreme self-discipline when it comes to learning things she really 'can't' do. There are times when I wonder if I'm too easy on her, times when I imagine I'll be too hard on her, times I hope I'm finding the balance between bossy and kind.

I have no interest in having a bratty child - or 'one of THOSE' children. I'm also not interested in breaking her little spirit. Somewhere. Somewhere. Somewhere under this mountain of apple sauce is a nice balanced place.

About Fran

oops - I forgot the link the first time I posted this - Hello! Sara! Anybody home!

Franny's mommy Sarah (gosh she has such a beautiful name) wrote this wonderful, and graphic, and healing post about caring for Fran when she died. I thought those of you who knew Frannie might like to know these details (warning: its a hard read - Sarah is not shy of life-details). Sarah's blog is a fun read. She also just got a new camera and there is a picture on there of some chalk and a chalk drawing that is absolutely one of the most amazing photographs EVER.

God Love...

It seems like Eliot is really trying to figure out this God character lately. Sometimes when we're saying our 'bless yous' at night he'll pull God into the whole thing. Crazy. I know.

Tonight I said, "I love you Eliot." He said, "God love Eliot." Then he said, "God love Naomi." Then he said, "God love babies." Then he said, "God love cookies." Then he said, "God eat cookies. Cookies go in tummy."

I found myself starting to say that God loves cookies and they go in HIS stomach and I stopped. I'm super aware that Eliot is in an insanely impressionable place. Why limit God to a man. Hell. Why limit God to being a woman.

In the end I think maybe I shouldn't have said yes to the idea that God has a tummy. I mean why limit God to something that has to actually chew a cookie and digest it. Why not let God be something that experiences a cookie in its fully essence in unimaginably fabulous ways.

I'm convinced that when kids are really little they just get God. God is everywhere and everything and they just get it. Completely. I've heard when kids get to be Eliot's age things change a bit and I think I'm watching that.

God is still all over in a lot of ways. When I said cookies do go in God's tummy Eliot started naming off other things that have tummies. As if he was asking. Interestingly he included the dark.

The dark has a tummy. I suppose when you learn that some all encompassing entity that adults call God has a tummy the dark might as well too.

After we talked about what has a tummy Eliot said, "God love baby Eliot." I couldn't tell if it was a question or a statement. I said something like God loves baby Eliot and big kid Eliot and little kid Eliot. God loves Eliot no matter who Eliot is. God loves Eliot no matter what Eliot does.

Eliot got a huge smile on his face when I said that. A huge smile. I cried.

Eliot said, "God love Eliot eat Cheerios." I laughed.

The Queen of Destruction

She Tamed the Giant

Tats Baby. Tats

Laurie's girlfriend Amelia sent Eliot a whole booklet of bug tattoos. Eliot orchestrated me getting a wasp tattoo and Naomi getting a little tiny lady bug tattoo and him getting a gigantic butterfly tattoo on his belly which I didn't get a picture of. The next day he got 7 tattoos. 7 tattoos. Look at our boy. I'm not sure if he looks more like a Buddha praying or a bad ass tattooed macho macho man.

Health Update

We're all either recovering from or in the throes of a cold. We're the house of runny noses and snot flying and lovely snot smears on sleeves and crankiness and unimaginably high energy.

Eliot has been asking for cream to put on his chapped lips and today asked for cream for his ear. He is amazing. That's how he told us that his ear was hurting. We took him to the clinic and sure enough his ear is bright red inside. Luckily so far he is doing fine in every other way. His labs showed a healthy cancer patient. He is energetic and basically in a good mood. His temperature has been perfectly normal.

He got to take 5 syringe-fulls of medicine tonight a total of 12.5 mL of medicine.

Please keep the prayers coming. We'd like to stay home. We'd like to keep his temperature normal. They said its entirely possible that his immune system, minimal as it is, could fight this cold and he could get through it. Fingers and toes and eyes and ears and hair legs crossed.

The Fort

Aron and our neighbors Jesse and Keith made this amazing fort on March 2nd. We had an amazing snow storm that weekend and Keith didn't have to go to school and Jesse didn't have to go to work and it was Aron's day off and they spent the entire day making this thing. The snow man had a carrot nose and two prune eyes and Eliot and Aron made it the day before the fort went up. That snow man was lifted gently from the side of the street and placed on high.

The Architectural Door

The guys actually built a serious door for the fort. A serious door. This is serious stuff.

The Innards

This is the inside of the fort. It only sort of shows you the sheer amazingness of this. I'm starting to feel that my posts about this fort are starting to sound sarcastic. I'm not sarcastic. This was the coolest fort ever.

One Happy Fort Family

Okay. There is a lot to say about this photo. Not the least of which is the bizarre look on Eliot's face. Or the fact that I'm wearing a pair of filthy sweat pants that my mom so nicely managed to crop out of the picture. I'm going to choose to point out that the fort is as tall as I am. Do you see that?!?!?! That was a stinking amazing fort. This photo was taken 5 days after the fort was made. So it had 5 days of melting under its belt before this was taken. People actually drove by our house slowly to check it out.

Inside the Fort

Classic. Classic. Aron and I and both kids could fit comfortably inside the fort. Yes three grown men spent a total of well over 15 hours making a fort that one of our children screamed about and other looked, well, just like himself about. Eliot did enjoy the fort. He wanted to check it out and watch the neighbor dogs play in it. It was amazing. A few guys even stopped by and took their pictures in front of it.

If It Were Possible

If it were possible to wrap Naomi up in one picture this would be about as close as it could get. She wants - no insists - on doing everything the big kids are doing. When Aron and Eliot started cooking 18 days ago when I took this picture she walked up the dining room table and started hitting the hair. I will be part of this. I will be part of this.

Tonight when she wanted to sit on a dining room chair she got her little just barely bigger than a 9 month old self up on the chair by herself.

Okay. And the face. Cute. Determined. A loud noise coming out of it long enough for me to catch it on film.

I'm so toast.

Someday when Eliot tells me I've tortured him for his whole life this will be part of his evidence. Eliot its just too good not to share.

God Likes...

The other night during Eliot's 'bless you's' - his prayers before bed time - he asked me who I wanted to say bless you to. That turned into me saying bless you to a lot of people and then thanking him for taking his medicine so easily, and playing gently with Naomi and being so fun and eventually lead to me saying that I like him. Then I said God likes him too.

The next night he said bless you to lots of people including the cars outside and inside and the light and Sally the car. Then he said 'God like' and I thought he was searching for the good old, "God likes you Eliot." Instead he said -- and I"m not sure if this was a question or a statement -- "God like boogers."

Indeed I suppose that is true.

Marbles

Naomi put her hand between the chair cushion and the chair this morning and pulled out a marble. She looked at it as if she'd just pulled a rabbit out of a hat. She was amazed and surprised. She put her hand back in the crevice looking for more goodies and came up empty. Then she decided to put her marble in her mouth and i took it away. She then walked over to the chair and magically pulled another one out. She was equally surprised again.

I couldn't help but to think about my ranty post from a few days ago. Naomi sucked my marbles right out of my head and found them stuck in a crevice.

We Love You Frannie

Our doggie Fran who hasn't been technically our dog now for almost 2 years died last night. She went to live with a wonderful, heavenly family that had a huge yard and woods and a lake across the street and 4 active and fun kids when we realized we were moving to the city and didn't know if we'd be able to keep her.

She was a sweet and wonderful friend. She was odd in many ways. She was silly and walked funny because she miraculously survived breaking her neck in 2001. We got her when she was 6 months old. She came from the Humane Society in Duluth - all they could tell us was the street they found her on and that they named her after a can of Libby baked beans.

We re-named her Fran - after San Francisco - because that was the name that she perked her ears up about. I don't remember all of the other names we considered - just that Berkeley was also on the list and I was sort of partial to that one.

I hope little Frannie that they have an unending supply of doggie beds and blankets you can hump in heaven. I hope you can run like before you got hurt. I hope there is an endless supply of balls to catch and ropes to tug and flies to chase around. I hope your knees feel great.

I love you.

What Does God Look Like

I asked Eliot what God looks like the other day and he said, 'cake'.

Sounds about right to me.

Warning: Lest you should have the urge to ask Eliot this question the next time you see him - please avoid it. This has only worked once and I think if he gets asked this question many more times his response is going to be - in the immortal words of Red Forman from That 70's show - 'God looks just like my foot up your ass.'

Why So Little Posting?

So a few months ago I decided I needed a little more stuff in my life that I found interesting. I'd had it up to my eyeballs with meal prep, cleaning and the basic shit work called momhood. I started looking for some little jobs I could do so I could afford to pay for some child care so I could have some hours in my life during which I could do what I want to do.

Some jobs came my way and then BLAMMO so did leukemia.

I'm just now getting my feet back under me and started two small jobs a few weeks ago. Silly. Silly. Naive. Desperate me didn't think it all the way through. I have these little jobs that are making me some money. Which our family really needs. I thought I'd do these jobs during nap-time and at night. Ha ha ha heee hee hee ho ho ho.

Duh.

Um Sara. When you are burnt out and decide to fill ALL of your 'free time' with work you become a very dull person (didn't you hear about that little boy named Jack?)

Hello.

So blogging has fallen to the side. Along with the little tiny bit of sanity I had.

I'm digging out tho. My mom is going to come help out around here a lot for a while. I hired a cleaning lady. My big volunteering project will be mostly done in a month and I'll be over the hump of figuring out my jobs pretty soon.

Hopefully. Hopefully. Hopefully I can get back to some sort of life that doesn't feel completely and utterly burnt out. Which means hopefully. Hopefully. Hopefully. I can start blogging some more. Hopefully.

In the mean time I'm going to keep fantacizing about winning the lottery, buying a house in Duluth and hiring a part time nanny for the kids so I can work on the Millennium Development Goals.

I Used to Be (Warning - creative pity party coming)

I used to be a mom who loved being a mom. I loved cooking real baby food. I loved watching my kid grow. I loved the (albeit sometimes difficult) experience of having the rough edges worn off of me by the slowness of my life. I loved not feeling frazzled. I loved getting to do some volunteer work. I loved never having to travel. I loved watching the baby weight melt off of me like so much sweet cream butter running right out of my perky boobs into my infant's happy and content mouth.

Oh how I used to pontificate about the wonders and glories of stay at home momhood. Why have children if you just pay someone else (poorly) to raise them? I'd say. Why sign up to be stressed at work only to come home and still have to clean the house? I'd say. I loved parenting. I loved being with my kid. I enjoyed, surprisingly, taking care of my home.

Then.

Then I got pregnant again. And all of that baby weight came right back and hmmm...its still here. Yup. I weighed in heavier at my yearly appointment this year for the first time ever. Granted it was 1 pound heavier. But a year ago I had a 6 week old baby!!!

Then we moved and I lost my house cleaner and every dirty toilet, dish, towel, sheet, shirt, floor, window, wall got cleaned by me. Oh and I paid every bill. And budgeted every dollar. And made every appointment. And took care of the cars.

Then I had a second kid who still doesn't sleep and who has been biting my nipples for months and who sucks my brains out rather than sucking the extra few pounds around my middle.

Then. Literally when I was counting down the days until kid number 2 started not napping in the morning and we'd have some freedom we welcomed leukemia into our lives.

So here is an open letter to the self who never thought this self would exist:

Dear skinny, happy self:

I'm happy for you. I really am. I really, really am. I hope you're enjoying yourself. Enjoy those size 6 jeans. Enjoy nap time. Enjoy your sanity and your ability to finish sentences.

Quit having opinions about moms who work. There is probably a good reason they do. Some necessity of some sort has them working. Quit wondering why moms aren't more organized, or don't insist on more free time. There is some reason those things don't exist in their lives.

I'm tempted to tell you to quit being so sure of yourself that's just wrong tho. Just give yourself a break someday when you haven't showered in days and can feel the fuzz growing on your teeth and fantasize about a high powered 80 hour-a-week job at Target Corp where other people clean up your messes and actually do what you say. Give yourself a break.

Signed, me

Eliot is a TNT Honoree

Our wonderful neighbor Summer (who introduced Eliot to The Lion King and the flat panel large screen tv Cars the movie experience) is training for a Triathlon with Team in Training and Eliot is her honoree. Team in Training offers people a chance to train with a group, have real coaches and they raise money for the Leukemia and Lymphoma Society. The fun news is Summer's event is happening in July so Eliot will actually be able to attend the event (he'll be done with lock-down and free to be out in public). You can watch Summer's progress, and donate to the Leukemia and Lymphoma Society from her web page. Your money goes toward a good cause and is given in honor of Eliot.

Dance Party USA

Naomi has been dancing her little heart out lately. She dances to the many movies she enjoys. Yes. I'm a 'movie mommie.' Yup thats me. Hmmm...instead of taking up exercising at 5am everyday for Lent I should have given up feeling bad for being a movie mama. As it stands I'm not exercising at 5am or any time nor am I exactly letting myself off the hook for the movie momeroo either. Anyway I digress...

Naomi is a little dancer. She wiggles her little boo-tay. She shakes her arms.

She really seems to want to do what we're all doing. She climbs up on the kiddie potty all the time and sits there and looks proud as can be. She wipes the table or counter whenever she gets a sponge or paper towel in her hand. She climbs up on the stool to get access to the counter top. She climbs into the refrigerator. She climbs into the dishwasher.

It seems illogical that I'm so blown away by her. I've been here before. I've seen a kid stop being a baby and start being a kid before. Still. Its mind boggling. I'm amazed by what she can do and wants to do. I'm amazed by her.

Thursday Update

Eliot and Aron went to Eliot's clinic appointment. He continues to do incredibly well. He is in tip-top shape. He didn't get any medication this morning. They just wanted to check his labs and take a peek at him. We're done with the steroids. We're just cruising along with 2 kinds of oral chemo and the anti-bacterial medicine we give Eliot at home.

Eliot started taking 'Uncle Luke medicine' on his own this week. He puts little pills on his tongue and drinks water just like a pro. He has been taking his medicine with Uncle Luke now for over a month and when he saw his steroids the other day in the bottle (instead of the liquid form of medicine he has taken through his treatment) he said he wanted to take them. Aron showed him how to take a pill by using a Cheerio as a demonstration.

He even got mad last night when he didn't need to take any and I wouldn't let him take any Uncle Luke medicine.

He is amazing.

Meet Our Cancer Patient

I cut Eliot's hair tonight. I cut his silly long random bangs and hair. It didn't bother him. He goofed around with the brush I used to wet his hair down most of the time. I didn't anticipate that it would bother me. It did bother me. This is a tangible thing. I know, as if giving him oral chemo-therapy isn't tangible in a major fucking way. Cutting his hair and taking away what bangs he did have makes him look like, well, a cancer patient. His head looks rounder. His face looks brighter. I think he actually looks a lot better. He also looks a lot like a cancer patient.

I went out with a friend right after I cut his hair and when I came home I'd forgotten about it and it was shocking. So here is fair warning to the people who see Eliot regularly. He looks different. He looks, really different.

Fucking Steroids are Back

I lost my little warning sign for the top of my post. And I'm feeling just crazy enough to put that big ol' f-bomb right in the subject header.

Steroids stink. Eliot has been on them since Friday night and he will be until Wednesday morning. He is really, basically doing just fine. He just gets annoyed easily. And tonight at Nan and Rob's house (well, lets be honest - at Dora and Arlo's house) he wanted to be held and held and held and held and held. He whined. He wanted to go home.

He woke up having a night mare last night. Or at least I think that's what was happening. He said there was a spider in his room. Interestingly he had a lot of spider dreams wake him up in the few weeks before he was diagnosed. He is tired. He practically dove into bed tonight.

I'm feeling stunned that we had 28 days of of steroids after 12 days of the hospital after the total mind fuck of finding out about leukemia. Goodness. How in the world did we do that month. No wonder I sat on the chair that last day and stared at the wall.

Eliot is going to have 5 day stints with steroids once a month for the entirety of the rest of the treatment. Except for the first 21 days of May when he'll have them for 21 days. Sigh. 21 days.
We can ask for anti-depressants for him which are supposed to make things a lot better. I'm thinking we'll be taking that option. Sigh. My baby boy on anti-depressants.

Sigh.

Thursday Update - on, well, Sunday

So March 1, 2010 is the day. March 1, 2010. Which might be March 4 or Feb 25th. Today is March 4. So it might be 3 years from today that we go to the clinic and get a bone marrow biopsy and whatever else we'll get that day. Probably no medicine. They'll (I imagine) do surgery and take out Eliot's port. 3 years. 3 years. 3 years from pretty much today. 3 years.

++++++

We had an odd clinic appointment this past week. Eliot woke up at 5:30am throwing up and then was in a completely great mood. We drove through a ton and a half of snow and made it to our appointment and got Eliot's medicine and it all took wayyy longer that I thought it should. We came home (through another ton and a half of snow) and had lunch and they called us and told us to go back to the clinic. Some of Eliot's labs pointed to him being dehydrated.

So we drove through another ton and a half of snow and went back. They took Eliot's labs. We waited around for well over an hour to find out that his labs looked basically okay. So we packed up our stuff and drove through a ton and a half of snow and went home.

We laughed and played the whole time and had a generally delightful time. Eliot even walked around the clinic on his own for a while with me. He didn't hold my hand. He didn't insist on being held. He walked around. He even let me leave him in the room briefly alone. He is getting comfortable there.

Odd. My son has been to a cancer clinic so many times that he feels comfortable there. My son who rarely feels comfortable in public feels comfortable at the cancer clinic. And I feel good about that. Its terribly odd. Terribly. Terribly odd.