Sunday, August 24, 2014

Mallory's Challenge


So... in light of the awesome Ice Bucket Challenge for ALS, I've decided to start up a new challenge to shed some light on my daughter, Mallory's disorder and spread some awareness.


Mallory was born with a craniofacial disorder.  Her rare disorder is characterized by premature fusion of certain bones of the skull and fusion of the hands and feet.  When she was born she spent 77 days in the NICU/PICU.  She had numerous procedures done and two surgeries.  One was to place a gastrostomy tube and the other a tracheostomy.  She had genetic testing done.  The results led the geneticists to believe that she had Pfeiffer Syndrome.  Only 1 in 100,000 babies are born with this.  Talk about being an individual!


Since she was born we've done nothing but try to make her life as normal as our other kids.  She's number six of my children.  She has five big brothers.  Yes.  Five Big Brothers.  And they all love her like crazy.


So what do I want?  I want to spread some awareness folks.  I didn't think my life would be turned upside down the way it has been... but it was.  At 20 weeks along I was told I had a perfect, healthy baby girl on the way.  I didn't find out until about 30 weeks that this wasn't quite the story.  You can read all about it here: Mallory's Way.


We call Mallory our lady bug.  Most all of our kids have had some kind of bug name.  Jeremiah was 'Little Bug', Andrew was 'Drew Bug', Nicholas was 'Nick-a-bug' and Quentin was 'Buggy'.  So it was only natural for Mallory to become our 'Lady Bug'.


We want to spread awareness of craniofacial disorders but we also want to spread the Choose Kind message.  We should be teaching our children that different is awesome.  We should be teaching our children to lend a hand to those who need it.  We should be teaching our children about acceptance and love.  Have your kids sign the Choose Kind pledge!


For this challenge this is what we are asking:

1:  Donate or dedicate something lady bug related to Mallory.  I can be a sticker, a temporary tattoo, a real lady bug, a drawing... etc.  Take a video or photo of it and post it to Mallory's FB page (Mallory's Way) and hash tag #mallorysway.

2:  Take the Children's Craniofacial Association's #choosekind challenge at CCA Kids Challenge.  You can sign the Choose Kind petition and/or make a donation the Children's Craniofacial Association.

3.  If you want to help Mallory directly, you can donate to her medical expenses at Love for Our Lady Bug.

I hope everyone can love this little lady enough to spread the word!!  To tell her story and to help other little ones just like her!!



Monday, August 18, 2014

I Didn't Make My Bed

I've been making a really good effort lately to try and make my bed every day.  I want to set a good example for my kids.  They are kinda messy humans, who barely keep their bedrooms clean let alone make their beds.  One day I was "instructing" them to clean their messy, messy room.  Then I walked into the bedroom I share with my husband.  Mess.  Crud all of the floor.  Things strewn about.  Bed not made.  Time to practice what I preach if I want the kids to follow suit.  So far, I'm pretty proud of my effort to keep it tidied in there.  There's clutter in there.  But it's organized.  Our organized clutter as I call it.

Today I did not make my bed.  I've walked past it 20 times at least telling myself I need to get it done.  I did tidy a few things in there that were irritating the ever loving crap out of me.  Didn't touch the bed though.  It's 4pm right now but it doesn't feel like it.  I can't decide if I should feel like I've only been up for an hour or if I should feel like I've been up for days.  It's a toss up.

What have I done since I arose at 8:15am this morning?  (And yes, I got up at 8:15.  It's summer break, people.  My kids know to be quiet or suffer the wrath and Mallory plays with her toes.)  I did Mallory's trach cares, fed her, changed and clothed Quentin, yelled at the other kids to change out of their dirty night clothes, drank a coke, changed a poopy diaper, talked to my husband about his doctor's appointment and some other photography related things, went through Quentin's registration paperwork to make sure I had it all filled out, put Mallory down for nap one, balanced my check book, wrote two back to school checks, panicked about money, put Quentin's dragon costume on him, changed another poopy diaper, got dressed (no shower), brushed my teeth, put my hair up, gathered my things and drove to Quentin's school (20 minutes one way), registered the beast, drove back home, dealt with a photography website problem, filled out a questionnaire for an upcoming family party... 20 questions times 8 peoples' answers, fed Mallory lunch, spent time printing out forms for Tyler's registration, filled out said paperwork, microwaved old nasty Hamburger Helper for my lunch which only had meat left in it because I only like the noodles, had another coke, changed another poopy diaper, started a load of laundry, put Mallory down for nap 2, dug a DVD out from under the couch, dispersed additional items into the kids back packs for the ever anticipated back to school day... in two weeks... AND now I'm here... writing this blog.

I could make my bed now I guess.  But what for?  In three hours I'll probably be in it.  To all the productive Momma's out there... hang in there!


Sunday, August 17, 2014

Where'd the Summer Go?

My kids start school in about two weeks, right after Labor Day weekend.  I am trying to be proactive this year and not wait until midnight the night before the kids' first days to separate supplies and get their bags ready.  Not to mention, we'll be heading up to the cabin Labor Day weekend, so I really don't want anything left on my to do list that's school related before we go.


As I'm sorting through supplies and figuring out what paperwork I need to fill out, I start to think about the summer.  What the hell did we do?  Where did the time go?  Seriously?  It feels like I blinked and it was August.  I know I blogged about some of the things we did, but I did miss a few!

This blog is going to be a barrage of photos.  A BARRAGE.  Not because we did a whole ton of stuff, but because I took lots of photos of just about everything.  So, you may want to make some popcorn or grab a margarita because this is going to be a long one!

We played with Legos a lot this summer.  I think a lot of it had to do with the project from my previous blog, Channeling the Inner Nerd..., but they are a fun and creative way to spend time.  And we have a ton of them.  My husband inherited every Lego from his childhood and they now live in our bedroom closet (who needs room for shoes... or clothes?) until they are ready to be passed on, be it to his niece and nephew or to our kids someday.  My husband and I have acquired a lot during our years together too.  Makes for some fun... not that I'm posting a lot of photos of this fun, but Woody looks like he's having a blast.  Doesn't he?


Let's see, what else happened this summer.  My daughter had her first finger separation surgery.  It went really well.  She's loving those fingers of hers and soon enough (before Christmas) we'll be able to say that she has 10 fingers!!


Quentin went location hunting with me.  I'm always looking for new outdoor spots for my photo sessions.  He makes an awesome model too!


We've had a few power outages this summer due to storms.  One in particular stands out.  It was soon after dinner that the lights went out and the kids spent quite a bit of time freaking out.  Tyler rallied the troops for some games in the living room trying to make them feel better and then realized he had some battery power on his lap top and fired it up for a movie by candlelight.



Then there was the 4th of July.  This day was kind of a big deal for us.  In fact a lot of the things we did this summer were big deals.  Last summer was mostly spent driving back and forth to Children's Hospital in Milwaukee, spending time with Mallory and praying daily for her release.  We didn't see fireworks last year, other than what we could catch off of our back porch.  So this year, spending it with family... and Mallory... was a great feeling.  It was bittersweet though as we were still grieving the loss of my Mother-In-Law, Hedy.  I still can't believe she isn't with us anymore.  Almost every memory I have with the Broz family has her in it.  I wish she could have been with us.  She would have loved seeing us all together.


For those who don't know, the above photo was of Hedy a couple of years back from a 4th of July party.  She's holding Quentin, when he was just a little guy!  The below photos are all this year's celebration.








In July, we celebrated my nephew's 2nd birthday.  Anthony is such an awesome little guy.  Funny, smart and has the greatest teacher in the world... his Mommy!


We had some water fun too, all invented by my boys.  I had a great afternoon of photo taking and they had a great afternoon of soaking each other!


A few weeks ago, we went to the Renaissance Faire.  


It's been a yearly tradition for I think maybe the last 3-4 years.  We always have such a great time!  There are always tons of shops to look around in, the food is... oh my gosh.. INCREDIBLE.. and there are lots of great shows.  People watching is at an all time high because there are so many awesome costumes.


Like Quentin, for example.  World's best dragon... that looks like he has to pee.  For such a simple costume, he sure got a lot of attention.  And my Father-In-Law, Rick, who came as Randolf the Bleu, Chief Wizard of the North Midwestern Realm, also got quite a bit of attention and requests for photo ops.  The girls (Mallory and Riley) got their photos taken with three Disney Princesses; Cinderella, Belle and Anna.





We saw a few shows.  We went to the joust, saw the Fire Whip guy and a mud show.. which really wasn't all that kid friendly.


The one thing the kids really wanted to do that they remembered from last year was the giant trampolines.  These kids have guts!  Flying so high into the air!!



It was another great year at the Ren Faire!  I think next year we really need to try to get a group photo!




Next up, one of my favorite days of the summer so far... Beach Day.


I had been wanting to go up to this beach in Kenosha for a while, Simmons Island.  I had no clue how to access it and no clue what to expect.  We found a parking lot and walked around the lakefront for a little bit, but there was no beach access.  So we loaded everything back in the car and drove around a bit more.  We finally found the beach and it was well worth it.  I'm not going to narrate these photos because they speak for themselves.  It was a great time... a great day.















Finally, we arrive at today.  We've had to wait a little bit to renew our yearly zoo pass, but were finally able to.  On a last minute whim this morning, we made the decision to head up to the Milwaukee Zoo.  I swear, I got up at quarter to nine this morning and we were out the door at around eleven.  Nothing short of impressive.

It was so packed today.  "Feasts with the Beasts" was going on and everyone seemed to pick today to go.  There was live music, lots of food tents and they brought in the sting ray and shark exhibit.  We visited the sting rays after a potty break, penguin break, train exhibit break and lunch break!




We were able to buy tickets to get food from the different tents too.  While we were walking around trying to decide what to spend our tickets on, we just loved the live bands transitioning from one area to the next.  There was this little pond area with a great band, some shade, a nice breeze and ducks.  So we stopped.



The kids decided to spend their tickets on ice cream cones.  We should have thought a little more about Quentin's but he still enjoyed it.  Half of it was leaking out the bottom and he was licking it like a giraffe, but no biggie, right!?





We visited a few more animals, including the rare sitting giraffe and then we called it a day.




I'd say our summer hasn't been half bad.  I hope the boys will have lots to talk about when the start school again!  We do have one more stop before they go back and that's the Labor Day trip to the cabin that I mentioned before.  It's my birthday weekend too... so I think it'll be a great way to wrap up the summer!