Hope4Peyton header image

Why I talk about my sick child

I’ve been seeing more and more “medical-world” parents who are blogging about their children…not just with cancer but all over the special needs spectrum…and its fascinating to watch and read.  When we were first diagnosed, the sites I saw were all from the awesome CaringBridge, a tool that offered parents a free site to use in updating about whatever was going on in their lives…it’s easy, simple and for a parent in crisis, it is perfect.  We opted not to go that route, but I have a list a mile long of CaringBridge sites that I visit daily to check on “my kids”.  I love CaringBridge for offering that opportunity to know what’s going on and to leave messages of support.  I know the comments on our site have often brought on tears because they were filled with encouragement and love and just what I needed to hear WHEN I needed to hear it.

Over the past two years of writing about Peyton, our family, our friends, all the ins and outs of our lives, I’ve heard so many comments….“I could never write like that”…“I only tell the facts about chemo”….“I don’t want everyone to know all the emotional parts”. That’s what works for them.  We’ve done what works for us.  I feel so blessed that we have readers, that we have people who come back day after day (or week after week, whatever!) to be a part of our journey.  I’ve made friends through this site, I’ve offended people, but I’ve always told the raw, painful truth about what cancer does.

I guess I never thought of what I was doing as “blogging” or that I was a “blogger.  They were just my updates, no title to it, no big scheme.  Then I started reading the blogs out there, especially the “mommybloggers” (yes, that’s a real word in the blogging world, they have their own conferences and everything).  It was a WOW moment, these are my people too!!  I read post after post, seeing that there was this whole community of people who freely talk about their lives, who openly share all the good and bad that happen, even people who work to find the humor in their moments and share those too.  They’re witty, they’re endearing, they’re creative, and they’re WRITERS who just happen to have a different medium. It was awesome. It was like my mothership had landed.

Self-conscience: I don’t fit in with the cancer-update world, I’m too wordy and I go on and on about the dishwasher, which has nothing to do about Peyton.

Me: It’s ok, people still read it because it’s real life. What about that mom that said no one had ever said it the way she felt until that one post? What about the new cancer moms out there that don’t understand we’re all a little crazy?  Remember when that one person said you made her laugh while sitting in the hospital? Isn’t it ok to just put it all out there?

Self-conscience: No one else is talking about this other STUFF, stick with the facts and just the facts.

Me:  But I NEED to write it this way.

Blogworld: HEY! We’re over here!  We all do it. You don’t have to do it ANY one way. Just find your voice and use it.

(If you ask my friends, they’ll verify that often those inner monologues do sometimes spill out into my outside voice.  I guess they find it alarming.)

Something that fascinates me is that I’m meeting mommybloggers and they are able to maintain the balance between blog-about-family and platform-for-powerful-advocacy.  One that I have become addicted to is To Think Is To Create, a blog of a mom that has 3 boys who are all autistic.  I see her connecting with her readers through her sincerity and her humor and in the meantime teaching them what life is like in her shoes, raising awareness of what those boys go through and what she goes through as their mom.  You can’t leave her site without knowing more about autism than you did before.  Not in a force-fed way, but in a gently administered spoonful of knowledge that lets you digest slowly on your own.

I’m all “I want to be her when I grow up”.  THAT is what I wanted when we started this blog, I didn’t know it at the time, but I did. I wanted to be able to open eyes to this life, to be an advocate for MY child, to get past the idea that it’s not ok to say “I’m afraid my child’s going to die”.  I’ve had those emails and comments made that I shouldn’t change things, I am exploiting my child’s suffering for the entertainment of others.  I don’t think that when Peyton suffers ANYONE is enjoying it….and if I thought for a moment they were, I’d be the first to hunt down their IP, trace it to their home address and beat the ever loving snot out of them….because that’s how WE roll.

What’s the whole point of this?  I don’t know.  Just things I wanted to say.  I’m excited to see the moms that are branching beyond what used to be the lines they felt shouldn’t be crossed and letting the world in.  Because they are going to be so vital in making the cancermommyblogger HEARD and UNDERSTOOD.  

Vote for my blog on Mom Blog Network

Digg!

Add to Technorati Favorites

 

More pictures!

Because our room at the resort had no reliable internet connection, I have finally been able to post some pictures to our Flickr site. Just click on “Our Flickr Photo Album” to bask in the glory that is our kids….forced to stand next to a fence….mumbling “Is this the last one, mom?”

Good thing these butterflies didn’t know what happened in my kitchen last week

Callaway Gardens, a resort/nature playland in GA that I have fallen in love with. Not because of the weather, mind you, but it has been fun out of our normal spectrum every step of the way.

If you’ve seen one butterfly you’ve seen them all, right? I mean, I killed two just last week! Oh so wrong. The butterfly conservatory was one big OOOHHHH moment after another. We got to be up close and personal with bigger, more beautiful butterflies than we’ve ever had the pleasure to see. While the girls were in danger of whiplash from the constant neck craning, Nathaniel tried to play it off cool….but I know he was pretty excited too. I was so awed by these creatures who seem to have no more purpose that to flitter around looking gorgeous and impressing people by their ability to do so…I wonder why no one asked me to apply for that job?

We spent the rest of the day swimming and looking for shampoo. The swimming was wonderful…the hunt for shampoo an exercise in futility. 20 miles to the nearest OPEN grocery store! Gas stations that only sell GAS! What is this country coming to? I suppose it is to be expected in especially small towns on a national holiday, but seriously, all I wanted was a bottle of Pantene!

Our dinner was a lovely affair, served in a country restaurant that could teach Cracker Barrel a few things about rustic…and by candlelight! How enchanting, you might think? Not when it means that the electricity has gone off due to a monster thunderstorm, pitching the entire place in darkness and rendering the waitress unable to refill our water glasses because she’s afraid of the fluorescent light bulbs taking her out. Yes, we found out that Waitress is deathly afraid of light bulbs. I wanted to wave my IPod at her and see if she flinched from my new-fangled laser gun.

Ok…I SWEAR I am done going on and on about IT. IT being not-Florida-Tampa-or-near-civilization. I’m done. In all seriousness, we’ve enjoyed every second of being here. Nathaniel got to catch his very first fireflies tonight, and we sat by the pool and watched the fireworks go off in 4th of July celebration. We are looking forward to finding lots of other cool stuff to do tomorrow.

And just to interject a little of our cancer reality into the story….there’s a wonderful big lake here…with a nice beach…open for all to enjoy. It TOTALLY stinks that we’re not allowed to enjoy it. Because of Peyton’s immune system being suppressed, we’re not allowed to take her in a non-moving body of water because of the bacteria threat. We can do the ocean, we can do the springs, we can do any well-managed pool…but NO lakes. Of course those instructions don’t hit me until I’ve already told the kids we’re going to the beach today. It was all good with the kids when they saw the color of the lake water…bless their hearts, the poor pampered little things.

 Vote for my blog on Mom Blog Network

Digg!

Add to Technorati Favorites

Please pray for Kate

My friend Jennifer Rivera, who blogs at It’s All About Them, has asked for prayer for her little girl Kate.  Kate has a neurological problem, a-typical seizure disorder, that is causing untold suffering for Kate and much worry (for lack of a better word) for her family and doctors.  They don’t know what’s causing these 6-12 hour seizures, they can’t identify a source and therefore they can’t get a solid treatment plan for this sweet little girl.  Please join me in prayer for answers and guidance, strengthened faith and trust in God’s plan for Kate.  

For those of you who participated, Jennifer is the one in Oklahoma who started up the Christmas ornament drive last year that donated to the Pediatric Cancer Foundation in honor of all our kids.

This milestone brought to you by the letter D

Milestones are important to me. How can I possibly judge the quality of work I am doing as a parent? Without them, I have no way to work myself into a frenzy because HIS kid walked 4 whole months before mine did…or SHE managed to potty train her child in one weekend…and let’s not forget THAT one over there that has a 2 year old that just finished reading every book on Oprah’s book club list….TWICE!

I’ve had to learn to let milestones roll by me in the past two years of treatment. When kids were potty-training, my 3 year old had regressed into diapers again. While kids were heading off to preschool, I had a child that I had to hold down and wrestle the pacifier out of her mouth to brush her sadly misaligned teeth. Little Einsteins was as close as my daughter was going to get to the preschools that so many of her peers were already attending.

But the past couple of days have been OUR turn to see some big milestones come to pass.

1. Peyton has clung tenaciously to her swim floaty. Completely convinced that she will drown the second she sniffs water if she tries to go without, I’ve done my best to bribe, cajole and manipulate her into even trying. No go. Then one day she just dropped the little jacket and jumped into the water….instead of sinking like the Titanic, her little legs and arms were churning in a furious doggy paddle! She was swimming….with no floation device! We’ve spent much of our Alabama trip swimming….yes, we drove 400+ miles away from Florida to SWIM….and she’s gotten completely comfortable in the water. She is swimming, she is jumping into the pool and making her way back to the side and just today she learned to swim under the water!! I’d take a picture of the cutest little tan booty bobbing up and down in the water, but I can’t pull my eyes away from it long enough to think about getting my camera. She is so fast! Summer Olympics 2020, HERE WE COME!

2. Peyton got her first Tabasco treatment. In our house we punish the part of your body that committed the offense. No chopping off of fingers or beheadings….but when it’s the mouth getting you in trouble, we go straight to the source. TABASCO! Peyton has developed this nasty habit of saying “I hate (insert person, place or thing here)”, usually to let us know IN NO UNCERTAIN terms that she wasn’t happy with our choices superceding hers.

Me: We’re having spaghetti for dinner.
Peyton: I want hot dogs.
Me: Maybe I stuttered…we’re having spaghetti for dinner.
Peyton: I hate spaghetti

She loves spaghetti, she adores spaghetti, she’d jump into a pool of it and bathe herself in the garlicky splendor of it all. But that’s not the point.

On and on it has gone.

“I hate chickens”
“I hate blue”
“I hate clouds”
“I hate TOMORROW!”

Well, they’re not too crazy about you either!

So I’d finally had enough and I told her that the next time she said THAT word I was going to be giving her the Tabasco treatment….I almost said “I HATE it when you say that!” But I managed to hold it back. She was appropriately horrified and threatened.

When the inevitable word came out in a fit of temper and the realization of impending doom hit, that phrase “her face fell” came into true meaning. Can I just say there was a level of morbid enthusiasm radiating off of Rachael? I mean, she was borderline giddy for anyone else to suffer through this torment.

The actual Tabasco placing was anti-climatic, she cried a little, she drank lots of milk and complained that her lips burned. But there were no theatrics, just a taking of her punishment and the acceptance that the little wall that stood between her and accountability for her actions was crumbling bit by bit.

3. Peyton had her first Anissa-moment, it’s hot-wired into her genes and I thought we had more time before they kicked in gear. Sadly, no. It’s a moment when I allow myself to get really irate with whoever I’m talking to because they don’t GET it, only to realize what I just said made NO SENSE…and then I get mad at them for making me acknowledge my own stupidity.

Peyton brought me a picture she drew. Her pictures are fantastic for a 4-year-old, full of detail and they are strangely mature. She could be artist when she grows up. An Olympian athlete/artist. And a brain surgeon….and astronaut. But no pressure.

Anyways, this picture was a little vague. It an oblong shape, with a happy face, 4 little round paws and nothing else to give me the slightest hint of what I was looking at.

Peyton: Do you know what this is?

Me: (I can’t possibly fathom) Is it a dog?

Peyton: Nope. Try again.

Me: Is it a horse?

Peyton: No, it starts with a D.

Me: Is it a dog?

Peyton: I think I already told you it wasn’t a dog. Try again.

I went momentarily blind from her scathing use of condescension.

Me: Ok, then. Is it a duck?

It looks nothing like a duck, but at this point it doesn’t look like anything, so any D word will do.

Peyton: No

Me: Donkey?

Peyton: No

Me: Dingo? Did a dingo eat your baby?

Peyton: YOU. ARE. REALLY. WEIRD. No

Me: Dinosaur?

Peyton: NO!! NO NO NO!

Me: I don’t know what it is, can you help me?

Peyton: It’s a truck!

Me: It is?

Peyton: YES, it’s a truck!

Me: What’s with the face?

Peyton: It’s a happy truck.

Me: Well, that makes sense. This is how you spell truck. T-R-U-C-K

Peyton: I TOLD you it started with a D!

She stomped off in a fury at my incompetence and later I heard her talking to Rachael.

Peyton: Mommy doesn’t even know that TRUCK starts with a D

Rachael: It doesn’t start with a D

Peyton: IT DOES!! It DOES!

Rachael: It starts with a T, Peyton

Peyton: I HATE T!

On with the milestones!

 Vote for my post I'm a little worried for my husband on Mom Blog Network

Digg!

Add to Technorati Favorites