Out of sight - Out of mind

I'm having some conflicting feelings.

On one hand we are surrounded by incredibly generous people - some of whom we don't even know and may never meet - who have seen our hope in the MagicWater Project (and the Sam & Penelope Fund before that) and have made a donation in an effort to help us give Max and kids like him time to be a kid. They leave notes on our blogs, they're interested and openly caring - and so many of them have made donations to MWP that it would boggle your mind. Even their kids bring change to school for the Magic Coins bottle in their classrooms. They offer help, caring thoughts and concern, prayers - and it comes from the heart. It makes me cry.

On the other hand, we've got very close friends who have never seem to ask what keeps us going. And I love these friends, but I feel a bit disappointed and (today) mad a them because I feel they don't care that we have a child with a deadly disease - how would i know if they care? I never hear from them in any medium. In writing this I see that it can appear that $$ = caring... but that's not what I mean; that's not what I'm getting at.

How many times do we have to say that neuroblastoma has no cure? How many times do we have to say that even though Max is doing well today, things could change overnight? Sure we keep a positive attitude, but that doesn't keep the constant nagging in the back of our minds from reminding us that life really is precious.

We have a little boy who carries a deadly cancer in his little body that could erupt like a volcano. How frightened would you be every day if you had that thought in your head about your child?

I guess it's easy for the people in our immediate community to feel more affected by Max because they see him all the time and their kids may talk about him, or they've signed up for a blood drive in his honor. Out of sight - out of mind doesn't play a part here. Max and neuroblastoma are in the forefront.

Thank you so much to all of you who have played a positive part in Max's journey. And I'm sorry for striking out at those of you who I'm mad at tonight (whoever you are!) - I get to do that... it's my blog and an outlet is required to keep my mind from completely fogging over. good night.

watching the grass grow

where to start... we had a friend die this week - suddenly. doesn't matter why or what happened. it matters that it happened. here was a man, the dad of a friend of Max's, a father to three young kids and husband to a wonderful woman. he was taken suddenly from this life. in talking to many other mom's over the past few days i keep coming back to this series of posts on acor about NB statistics and all the parents worrying about the 40% survival with treatment A vs. 60% survival on treatment B... and an NB parent finally stopped all the comparisons by pointing out that life is 100%. you're alive or your not. it doesn't matter if you have cancer or you're perfectly healthy. living for today and being happy with what you have right now is essential. i'm not saying to live as if you're going to die tomorrow. but do live in such a way that you are happy. don't let the goofball driving too slow in front of you make you uptight (are you in that big a hurry anyway?). instead of getting mad at the guy who just flipped you off, feel sorry for him and wonder what you could do to make them smile. the kids have been watching VeggieTales again and this weeks lesson was love thy enemy. i'm not a bible reader (not that there's anything wrong with you if you are!) but i got the 5 year olds lesson of what it means to be nice to people and how it can effect you to be mean back. revenge and anger only linger within you making each moment less pleasant. smile. be peaceful. you can infect people easily with happiness. pass it along. my sadness for this family is deep. life can end at anytime for any of us. make the most of it. andy & i promised that we would make the most of our time with our families when max was diagnosed three years ago and this is a reminder to us all. life is sweet. there is so much around to see and enjoy... like watching the grass grow.

My whole family is sick!

Yikes! Everyone in this house is sick! Max had a fever yesterday and is throwing up today. Nicky is running a fever, coughing and just plain miserable unless you can somehow get Motrin into him without him spitting it right back at you. My husband has had a miserable cough for over a week now and sounds like a heavy smoker having a hack-attack. And now my healthy girl, Hannah, is upstairs coughing her head off and the Vicks rub is not doing its job!

Calgon, take me away!

Mine! Mine! Mine!

Ever have a fit of parking lot lunacy? Well I'm here to tell you that you just feel better standing up for yourself when something like this happens:

The kids are off school one day and we decide it would be fun to meet daddy for lunch at Souplantation. Apparently everybody thought Souplant was the best choice that day because there were simply no parking spots to be found. Usually we have a great amount of parking-karma and find a spot quickly no matter where we are. This day, however, I think our karma went the way of the bars on my cell phone... going, going, gone. We (me and the kids) literally drove through the stupid lot for over 10 MINUTES! My eyes were practically rolling into the back of my head at this point.

Ahhh! Finally, someones leaving and I'm the car in line to take it. Blinker on. Waiting. Cars passing me while I wait. Okay, car is backing out finally. Another car passes me... HEY! That a#%hole just pulled into my spot! Throw the econoliner into park, emergency brake on, "You kids keep your belts on!" I'm outta the car and banging on the a#%hole's window before he can even get his car turned off. He rolls down his window with a look of surprise on his fat little face and I lay into him, "I have been waiting patiently with my blinker ON for this spot and if you think you can just zip around me and take it you've got another thing coming buddy because I've got three hungry kids in my car and we've driving around this lot for ten minutes. You are rude and inconsiderate and you'd better move this car right now!" Man in car is catching flies in his mouth the whole time I'm in rambling-mode. So I finally shut up and he comes back with this ever-so-witty remark, "All you had to do was ask nicely." He's lucky I'd already started walking away because I would've gone into my "ask for what nicely?" rant at that point.

He moved his stupid little car and I got my spot. HA! Oh yeah, he didn't eat at Souplant that day.

Why do things like this happen when only one parent is home?

Last night Andy had a dinner meeting with some guy (no offense!). While he's gone the proverbial shit hit the fan at home.

The kids are having a great evening. Dinner's done. All three of them are tearing around the house playing catch-me-if-you-can or some such nonsense. Time to give Max his supplements and night time meds. So I call him over to the table, we're chattin', putting all the syringes of meds into his mickey-button. We finish up and not 30 seconds later he gets a look on his face and says, "I'm gonna throw-up!" No throw-up bin within reach. Barf! All over the chair, down the leg and onto the rug! Touchdown! Yes, there is some on Max which is really grossing him out. Poor kid is hysterical. "Get me something to drink!"

About this time, Hannah & Nic come running into the kitchen - and right back out again. Hannah takes Nic upstairs for me. (Thank you, girl!) Max is calming down, we've got the paper towels out wiping him up, when I hear Hannah holler, "MOM! NICKY HAS DIARRHEA!" Oh, okay. Uh. My hands are full. "Hannah, read him a book, I'll be there as soon as I can," I call back. CRAP!

A few minutes later Max is feeling better, cleaned up, throw-up pants off (throw-up is still all over the chair and floor - I mean, I've got diarrhea to deal with!). We head upstairs and are welcomed by an incredible stench wafting through the hallway. Terror starts to strike me in the chest as I walk quickly toward Nicky's room. I can hear Hannah reading a book to him very calmly. I enter the room. I see Hannah in the rocker with a book and Nicky on his back on the changing table, frozen in terror himself, diaper opened up and poop exposed to the world - but still primarily in the diaper! Woo-hoo! (Funny how that could be a happy ending.)

Hannah was so please with her helpfulness, I couldn't help but smile at her. This, of course, is the first time she's ever touched one of his diapers - AND she had to take his jammie pants off, too.

Parenthood... good times.

hrumph...

What is wrong with me? I've been in such a funk this month - possibly longer than that. I feel like I'm chasing a car that I just can't keep up with - it's just out of reach, but the faster I run the further ahead the car moves. And why is this happening? Max is getting better and he goes to clinic way less often. Shouldn't I be feeling great? Getting more done and having more time since we're not at the hospital all the time? Well, nothing's getting done. The piles just get bigger and bigger and more appear. The faster I move the faster they grow. The weight of it all is pushing down on my chest somedays and I just want to curl up in a ball in a corner and sleep for 12 hours. I'm forgetting things; forgetting to do things - that are actually written in my agenda! I'll look at that book several times everyday and still forget to do something. The kids are sleeping well at night, so I should be too. But I'm wondering if I am - I wake up every morning tired and I'm tired all day. I could sleep hours more - if I knew there wasn't a list of things to do that was growing by the minute waiting for me. Good thing I'm wating my precious time writing in my blog...

Craptacular Morning

Andy's off in Vermont and NYC for a few days. Monday morning was complete mayhem here. I sent Andy an email detailing the happenings so he wouldn't feel so far from home. (I can read this now with a smile on my face.) Here's the email:

Oh my gosh... worst morning ever with Max taking his pills. We had a great talk last night (Hannah, Max & I) about cooperating and getting things done that have to get done before school, including taking Max's pills - which were an issue Sunday AM, too.

Everything's great this morning. Kids all slept in until 6:30. Got dressed, made their beds, brushed their teeth (without me asking, by the way). Hannah gets her own breakfast. They're all getting along! Wow! This is awesome.

Then I hand Max his pills (it's only 7:30) and he immediately starts up [tantrum]. We had the biggest power struggle... it was just ridiculous. He got so worked up that I put the other two in the car (8:10 now) to wait. Then I come back in the house to see that he is throwing up all over the carpet under the table and continues throwing up in his bin until I'm sure he tossed all the food from his AM feeding (so much for those 350 calories). S#%T!!!! I have never felt so frustrated in all my life. I just wanted to scream scream scream!! So I said a few profanities under my breath over by the sink while emptying his barf bin, took several deep breathes, got him straightened up and in the car (he's perfectly fine by this time) and drove the kids to school (8:25) where Max proceeded to
take all his pills outside his classroom door in less than a minute. What the hell?