I was talking to Ben, about when he was born and how I named him and he said SO seriously.
"thanks mom".
Me: "for what?"
Ben: "for naming me Ben an not som'fin stupid".


Ok I am all better now.

This is entitled Hell

Detail of mosaic in the vault of the baptistery of

Florence Cathedral.  - no really. I promise. That is REALLY in the baptistery. I could. not. make that part up.

Ok so my week hasn't been QUITE that bad... but close.  Some wonderful person has stolen our checking account number and apparently Western Union doesn't care if the account is stolen, as  long as they get a routing number... good to know if I ever want to turn to a life of crime.

Sigh ... and to make matters even better, the bank keeps messing up and allowing charges to be posted to the account even though we placed a restriction on it last week. Then they won't let us close the account because there are still items pending. 

Wait  I'm not done...

The bank is also holding on to Cary's paycheck until the negative balance (caused by all the stolen funds) is resolved....Can it GET any better? Oh yes it sure can! 

Remember last spring when we had to move because our dear landlord lost his primary residence and needed the rental we were living in? Well Cary did the absolute best he could to find a new house on such short notice, and with me in LA doing the Chemo and radiation thing, but it fell 1/2 mile outside the district. He applied for transfers and that was that.

Well, we just got a registered letter saying that this year, my 3 special needs kids were denied and the week they chose to dis-enroll my kids was - yup you guessed it - this one!  Looks like we have another immediate move ahead of us, or I get to home school the 3 younger kids until we can move back. Daniel was approved because he is not in a special needs program. I won't send them to the other school district because #1 it is too far , #2 my  kids would loose many of their current services, and #3 the change would be terrible for them mid stream like this. They have JUST settled down from the roller coaster ride that was last year.

Well, I am done belly aching now, I am just praying no kid breaks an arm or my feeding tube doesn't pop its last stitch ~ cause baby we aint got no money take our broke a$$ home!

I need to take time to go fly a kite or two....if we had the money to buy a kite...

I found some stuff I wrote LONG before I had cancer.
I wrote this one soon after Sept 11th 2001.

In moments of crisis,

we don’t call up

our nice furniture

to make sure it's OK

Or rush to hug our cars

a little tighter,

Or wish to spend

just one more

last
precious moment

with our pretty clothes.

May history remember me

not by the clothes I wore

the houses I lived in

or the money I had

but by

the hugs I gave,

the hurts I mended

and the kites I flew.
By Stacey Clark 

long time no blog...
I really have just been living my life, enjoying my boys and getting out and about as much as I can! My birthday itself kinda sucked because I had to go see my primary care doctor. He checked out my feeding tube and ordered an ultrasound to just take a peek inside to see what might be going on. No needles though, so it wasn't too bad. Just a lot of travel time.

The Friday after my birthday was the fun part. I posted the whole video on face book, but here are a few image grabs from it...

looking SO innocent and sweet....

can you tell what they are doing?...

that's right~ they are covering their momma in silly string!!!

It was really fun...

I got my wedding ring fixed for my main present,
and I couldn't be happier...

...and the boys sprayed on...

I really did have a great birthday.

42 years old and proud of it! I earned EARNED every wrinkle!!!

OK, I think we have this not getting enough calories thing licked. Since the flu, I have been having a really hard time going back up to the full amount I was supposed to be receiving via feeding tube. Bloating, distention, all that nice stuff.The answer was simple! 2 cans at night and 2 cans during the day! TADA!!! fixed. Jo Marie is brilliant. I should have all my energy levels back to full capacity in no time.

I am having a bit more of a problem because I think my feeding tube site is infected. I have a doctor appointment to check it out next Wednesday. I get blood tests done tomorrow. oh joy.... more needles... hope I'm better hydrated this time...*sigh...

OK, I was doing SO well.... Then I got the flu. Just a quick note to all those who have redone plumbing inside. NOT a good idea to get the flu. I am not feeling sick anymore, but I am pretty wiped out.

I went to Back to School Night for the boys, only saw 2 of the 6 teachers I needed to see and was just too pooped to do more ( for those wondering - yes I still only have 4 boys but 3 of those boys have special ed teachers or resource teachers as well as general ed teachers). I sent Daniel to see 2 more teachers to take notes, and did a phone visit with one more. I missed Jonahs general education teacher completely. (sigh)

This morning I went to see Daniel deliver his campaign speech (he is running for school treasurer) and now, if you will excuse me, I think I will go take a nap now....

hmmm, remember way back when I said about half of the patients with EC develop lactose intolerance? Well Hooray!  I am in that half. ( oh joy...) I switched to lactose free milk in moderation and it makes the world of difference to my tummy.

I am actually doing really great right now. Two days in a row I have done morning routine, gotten the kids off to school, picked them up, and did all their homework and therapy with them all by myself! 

But then comes the fun part. Nathan is LOVING the book The BFG  I am reading to him for books and stories. Jonah and Ben are just loving having the  mom bedtime routine back in place. Daniel is reading Holes and I get so tickled because he begs to read "just one more chapter Mom PLEEEEEASE....". I love to see that excitement for reading.

Wish me luck to keep up this good streak. By the end of the day I am pretty exhausted, but hey, even when I was 100% well, I was pretty tired by the time I crawled into bed each night.

Its all good. I just love finally seeing marked improvement  ~ well other than the not eating thing, but hey, that will come in time and I have the feeding tube to make sure I get nutrition, so how can I complain :).

What is that old saying, "true friends are like diamonds precious but rare"... I used to take that sort of thing for granted ~ SO busy with the hub bub of making sure this kid had that thing ready, or the oven had SOMETHING in it for dinner, or the dishes had to be put away or cards for every kid in the boys classes had to be finished, or heck even bread had to be baked (yes I baked my own bread and yes I was insane).

Friday I  had a lovely afternoon. We were able to go visit some very dear friends down south in beautiful Escondido. You know, they are only about 40 miles away yet we didn't get down there nearly often enough. It seems so much further than that and I don't really know why.  Both sets of boys (mine and hers) get along beautifully and I truly enjoy just visiting with everyone in the whole family. I have decided I need to make sure I take the time for the things that really count in this life. Friendships are one of those "counting" things.

There are lots of  things that "count". The great part is, your list might be different than mine. I challenge each of you to first imagine that you only have a short time to live ~ but then are granted a reprieve. Now grab a pen and write your "count list".

Here is just a tiny portion of mine.

*kissing owies that kids swear will make their arm fall off (or so it seems with all the dramatic screaming)  so they can go back to fighting with their brothers.
*watching the look on your kids face when you say you are so proud of them
*snuggling with your child until that bad dream gives way to peaceful sleep.
*watching Saturday morning cartoons with your kids even though you can not stand Dinosaur King, Yu Gi Oh, or the millionth episode of Sonic X and can't get that STUPID theme song out of your brain
*figuring out how to reassemble Legos for the 7 millionth time.
*letting your little one tenderly  "help" you up the stairs when it would be much easier to cling to the railing
*the wonderful things kids say that make grown ups sputter a lot, bite their lip, turn away,dip their face or cover their mouth really fast. Me~  I'm a combination mouth cover-er and face dipper.
*David and Goliath skits
*touching your sweethearts face to your forehead
*holding hands
*making sure your siblings know you love them- after all- WE were the ones who used to fight and get the owies...
*calling just to hear your parents voice
*calling just to hear your sweethearts voice ~ even though he only ran to the store a minute ago
*watching the kids wash the car - and themselves - and the driveway- and the  neighbors lawn- and the sidewalk- and the (imagine the print getting smaller and smaller , fading off into the distance)...

To me things that count ~ well, they have always centered around family, but lately have shifted a bit. No more homemade bread.

I'm OK with that.

Dates are not right on these pics, 

I had a possessed camera at the time and it put what ever date it wanted...

Ok, the other people that helped left on a certain date with a certain amount of surety when their stay ended. Poor little Haley didn't have that! She had been going home on some of the weekends, but came back.  The last time she went, that is what we thought was going to happen, but it didn't. It just kind of worked out that we are ok now. SO once again, I could not thank the person (face to face) who had helped our family so very much!!! Grrr.... She will be back when I get my dilation done, but until then,   ~~~

Haley, for all the dishes you did, the trips to the park with four little boys on bikes, the care, patience and love you showed your brothers and for all the stuff I can't even come close to covering in this little space,  Thank you,  (again , the words "thank you" just don't seem to cut it... ) and I love you.

boys first day of school. A bit wiped out, but all in all a good day. Very very happy with the kids' teachers this year.

P.S. Ben's teacher was pretty sure he introduced himself to the class as "Incredible Hulk"...

And I am serious guys, I need help with this pic!! What IS this???!!!