Monday musings...

This blog has been on my mind a lot lately.  I love blogging, but sometimes I don't have time (or make time) for it like I should and want to.  I've been thinking about things I'd like to change and different things I want to write about. 

As a mom of four, a set of twins, a chronically ill child and crazy schedule who also likes to workout, cook,  read and take photos, I feel like I have enough to write about to keep me busy.

Then I think, would people be actually be interested in that kind of thing?  My book recommendations.  A recipe I found and tried.  Things of that nature.  I just don't know.  Would you?  Yes, you.  I'm asking you!  So, please let me know.  Or, maybe I just keep the blog as is and keep on keepin' on.  Thoughts, ideas and opinions welcome! :)

Blake and his clot

Yesterday we had a late appointment in Iowa City.  I hate late afternoon appointments because they are never on time, but at the same time, I don't want Blake to have to miss preschool, so for the time being, late afternoon it is!

I'm not sure if I've ever blogged about the blood clot they discovered in Blake's leg following him going septic?  If so, just skip this part.  Anyway, they discovered the clot one of the million times we were in last year and it was due to one of the lines they had in his leg.  I had to give him blood thinner shots every day for awhile and then after some bloodwork hematology said we could stop the shots and then just do vascular u/s checks every few months. 

  

Well, yesterday was a vascular ultrasound to check his right leg.  Normally Blake cries when we start and then settles down.  Yesterday, no big deal.  He held my hand and kept an eye on the guy doing the ultrasound.  He even told the guy a couple of times that the gel was too hot!  

Following that, we had time to burn between that 3:30 PM check and our 4:40 PM consult with the hematology doc.  So, we did what we always do - visit our friends in peds dialysis!  That bunch is truly the best.  We love them like family and always say hi every chance we get!

 Waiting for the doctor is crazy town with two ornery four year olds.  They: wrote on the chalkboard, gave each other rides up and down on the bed, looked at each other's tonsils, in each other's ears, pretended to scan each other at the computer, turned the sink on and off a million times...  Well, you get the point.  I was willing the doctor to hurry up. 

When she got there she had great news:  Blake's been off his blood thinner shots for a year and his clot hasn't changed and appears stable SO WE NO LONGER NEED TO COME BACK FOR ANY MORE FOLLOW-UP APPOINTMENTS!!!  Are you sensing my excitement?  The doctor said and I quote: Cross this doctor off the list.  Um, happily!  :)

 The new children's hospital is coming along nicely.  It's set to open in 2016 and we can't wait.  It was a source of distraction when we were inpatient and still is pretty neat for the boys to look at every appointment.

Here's the thing about having a chronically ill child I decided on the way home.  You learn quickly that you have to celebrate the big stuff, but also the small stuff.  You don't take things for granted. Ever.  Ever, ever!!  Blake's labs have been good for over a year, but I still get sick to my stomach when I call for results.  When I hear the news, I still to this day get so happy.  I don't think that will ever change.

So, today, we are celebrating getting to cross the hematology department off the list.  Yay for that!

Give Kids the World

This is my last Disney post, I promise!  I just wanted to be sure to write about the place we stayed because it was top notch. :)

 

We stayed at a place called Give Kids the World, which is exclusively for Make-A-Wish kids and their families.  It was such a great, great place!  They assign you little villas with a couple of bedrooms, bathrooms, kitchen, living room, washer and dryer.  You get three meals a day if you want them, unlimited ice cream, a pool, arcade, a couple of rides and a different theme every night (Christmas, pool party, etc.).  They really go above and beyond to accommodate all families and give you as much of a vacation as they can.

There are a ton of volunteers that make the place go.  I don’t think I saw the same volunteer twice.  The very first morning we were there a gentlemen from Owatonna, MN stopped by our table and said this, “I know you parents tell your kids that they are special, but when is the last time somebody told you adults that you’re special?  For everything you do and everything you sacrifice.”

That was all it took and I was blinking back tears.  That meant so much to me; I just can’t even say and started our trip out on the right foot.

 

 The Give Kids the World Village (GKTW) just got to me.  It was kind of, I don’t know what the word it, comforting maybe, to be able to draw up your kid’s meds at a meal and nobody looks at you funny or wonders what you are doing.  Everybody else has to do it too.

 It was kind of like being in a hospital sort of environment in that you got to see kids with all sorts of different stuff going on out and about.  But, this was so much better because it was a fun place that kids and their families actually wanted to be.

 

 It was also a good reality check as these things tend to be.  I saw numerous kiddos in wheelchairs.  I saw a couple of kids that had to be kept flat on their back and were unable to move around that were hooked-up to what looked like a breathing machine of some kind.  It broke my heart.  Now don’t get me wrong, GKTW accommodates these kids the best they can with options for the water and making things handicap accessible, but I don’t know, it was just hard, especially for those kids hooked-up to the machines laying flat. 

 I looked at them and then I looked at my child; my amazing little Blake who has been through so much in his few short years.  Who beat the odds at birth, who did well on dialysis, who received an awesome kidney, who kept fighting even when that blood infection almost took his life, who has done and continues to do the things that doctors said he couldn’t do or wouldn’t be able to do.  But, there he was.  Running, jumping, laughing and doing everything his siblings were doing. 

Yeah, this situation isn’t ideal and it never has been.  But you know what?  We are pretty lucky and I was reminded just how much on this trip.

(These character pics were three of my favorites taken at Hollywood Studios, so I wanted to include them.  Hollywood Studios was awesome!!) 

 

 

Blake got one wish and it was full-filled.  We can’t say enough thanks to Make-A-Wish Iowa for coordinating everything for us.  It was a week of quality time together, long fun-filled days, laughter and a whole lot of memories made for our family and for that I will always be grateful!!

FRIDAY!

It's Friday!  Woo-Hoo!  I'm not sure why I'm overly excited about that.  Maybe it's the sun.  It's probably that and the warmth and the fact I busted out a tank top today!  Ahhh...it's the little things in life isn't it?!  Ready for consistently warm weather.

Look at that print below.  Doesn't it just make you happy?  All that color!  And it's such a good message.

 

I have a lot going on in this brain of mine right now, but I refuse to get stressed out.  So much of life is stuff we can't control and it does nothing but send our blood pressure skyrocketing when we stress out about it.  You know me, I am a big believer in things working out the way they are supposed and at the time they are supposed to. 

 Life is about positivity!  The belief that good things happen!  I've been thinking about new ideas lately.  Swirling them around in my mind and wondering if I can make things happen and be successful at it.  I'm pretty sure I can do anything I set my mind to. 

In the meantime, we have a pretty low-key weekend around these parts.  Aaron has a boat load of homework for his Master's classes.  It's prom so I need to snap a couple of photos for next week's paper.  We have a dance marathon picnic.  Good stuff like that. 

Oh...and I may also see if I can sneak in time to make a pan of these bad boys.  Oreos AND m&m's?!  Be still my heart.  (Link for recipe below)

 

lhttp://www.averiecooks.com/2013/09/loaded-mm-oreo-cookie-bars.html

HAPPY WEEKEND FRIENDS!

The way I see it....

Choose wisely

I feel overwhelmed with the need to share something with you all.  This is something that has happened to me not once, but twice.  Once?  I can shake it off, even though it’s hard.  Two times? Not so much.

Here’s what happened:  I was sitting somewhere and someone made a comment about being able to pay for something and finished that statement with, “Even if somebody has to sell a kidney.”

Now, you all have been here in this little corner of the paper long enough that you know what we’ve been through with Blake.  Actually, every person that was in this room when this comment was made also knew what we had been through.  You can imagine how well that went over with me. I just sat there and absorbed it.  I didn’t say anything, but I am telling you that my heart was palpitating out of my chest.

I know people say things as expressions that they don’t mean.  I’m not going to tell you I’ve never done it because I have and I have felt awful about it.  I realize that people joke about selling a kidney, I get it.  But is that really the appropriate thing to say?  Is it even less appropriate when you have somebody sitting there whose small child was born with kidney disease and it was so incredibly hard for them to find a donor?  No.  Not even a little bit appropriate.

I vented about this on social media and the response I got was eye-opening.  Things people say about fertility, alcoholism, suicide and the list goes on.

I am in no way saying that these words were said in an intentional way to purposely be rude or to upset me.  I do not feel like this was the case at all.  Was it an awfully poor choice of words?  Absolutely!

I think that we as adults sometimes worry so much about things that kids say to each other that we forget that we, as adults, can hurt each other a lot (whether intentional or not) with our words. We, the adults, need to set an example for kids.

I  think if we all took a couple of extra seconds to really think about what we’re going to say before we say it we would be a lot better off.  Remember that scars heal.  Cuts heal.  Broken bones heal.  Words?  Words are something that you can’t take back and it sometimes takes a lot longer to heal from the damage words can do.  So, just be kind and choose your words wisely, but that’s just the way I see it.

The Ocean...!

On Wednesday we drove about an hour to the Kennedy Space Center (Aaron's choice), which was seriously amazing.  My mind couldn't get over the brainiacs that have worked and do work there.  If they didn't have something they invented it.  I was just blown away.  

We could have spent more time there, but we had to get to this girl's choice/wish/special request - THE OCEAN!!  Yes, I am 34 years old and had never seen the ocean.  I told the kids they should feel lucky they get to see it at such a young age compared to their mom!

We drove to Cocoa Beach, which was a public beach.  I was very nervous of what would be there waiting for us since Spring Break was in full swing, but it was just fine.  Some people there, but it wasn't overcrowded. 

 

I loved it.  Aaron asked when we were leaving if it was everything I thought it would be and I replied with a very enthusiastic, "Yes!"  I wanted to stay longer.  I could have stayed there for days and been just fine. 

 

I love the water.  Lakes.  Rivers.  And now I can add the ocean to that list.  Being by the water is so calming, don't you think? I do.  It is one of my happy places for sure.  

These two, Brody and Bowen, were my little fish!  They wanted to get away from shore and let the waves hit them or try to jump over the waves.

Blake and Jenna....not so much.  They were perfectly content just hanging out right up by the shore. 

Jumping over the waves of course.

We wrote different messages in the sand. 

One thing in Florida I learned?  People are way less modest than this conservative Midwestern girl, that's for sure!  You got to see all types at the beach.  A few sun goddesses I wanted to hand a bottle of sunscreen.  Yikes.

Cartwheels on the beach!

We realized very quickly that we kept tending to underestimate the length of time for just about everything.  Oh, we can hit that and that in one day.  And then we'd stay too long at the first place and didn't have enough time at the second. 

The ocean.  I wish we would have had more time there.  Next time!  I love this picture of Blakers.

 

My favorite picture of the day.  Four of my favorites. 

Happy, happy heart.  

Disney - Days 1 & 2

No way around it, we had an AMAZING, once-in-a-lifetime trip to Disney for Blake's wish!  So many memories made, it's hard for me to wrap my mind around how to even blog about it all.  I did do some journaling to help me remember everything I want to remember.

We went to Des Moines the night before and stayed at the Holiday Inn across from the airport Sunday night.  We hit the shuttle at 4:20 a.m. and checked-in at 4:30 a.m. for our 6 A.M. flight to Chicago.  

I have to say that Southwest was awesome to us.  Like, a sign up for Blake, a goody bag, getting to sit in the cockpit before take-off awesome.  Can't say enough about them!

My highlight going through security was Aaron having to be patted down by the TSA.  Our pediasure did look a bit suspicious - LOL! It was the kids' first flights and only our second.  I must admit that the flight to Chicago was rough - for Aaron and me!  Not the kids, they acted like it was no big deal.  Aaron was overheating and I was so nauseous.  Clearly the altitude changes aren't kind on my old self!

We landed in Orlando about noon and everything went smoothly from there.  A volunteer met us, helped us get our bags and got us to the rental place to pick-up our van. 

Since we only had a half day and Aaron hadn't gone to our required orientation at Give Kids the World, we just kind of hung out around GKTW and enjoyed what they had to do there. 

Day two was all Magic Kingdom.  It was as magical as I had hoped!  And it really IS the happiest place on earth!!  Here's what we learned:  our kids are little ride junkies!  Every last one of them.  Luckily, the boys were at the 40" requirement for a lot of rides and were able to ride with an adult, which meant the 'fraidy cat mom had to ride with one of the twins.  This pic below is the 7D (Seven dwarfs) Mine train.  One of our FAVES!

We had to wear our Make-A-Wish buttons every day at the parks and it worked so slick.  The workers saw our buttons and we got to go to the fast pass line at Magic Kingdom. I honestly couldn't imagine waiting in line for over an hour for a two minute ride!

The parade at Magic Kingdom was awesome!  The floats were beautiful.  Bowen loves to read "Beauty and the Beast,"  so he was stoked to see this float.

This was something super cool that happened.  This dwarf spotted Blake and came over to touch his nose and give him a high five.  Blake said, "He had big fingers!"  LOL  Anyway, after the dwarf left, he signaled to Snow White about Blake and she came over and blew kisses to Blake.  It was adorable!!

We had to take a break from Magic Kingdom to head back to GKTW.  We quickly learned that six hours was the magic number for being at any one place and the twins would be in meltdown city if we pushed our luck.  We headed back that night for the fireworks.

Aunt Jill told me she tears up a little when she sees them and I kind of laughed, but she was right!!  It was one of my favorite things.  I did tear-up a little because they are just amazing!  I think I could watch them every night and not get sick of them.  Seriously. 

Everybody told me to take a lot of photos and I'll be honest - it was kind of hard!  Most of the times you were on a ride or with a character, so I did my best, but I still struggled. ;)  The picture above is from the Toy Story ride at Hollywood Studios.  It was so fun!  We rode it a few times and put it as one of our faves.  Thankful for that recommendation from Aunt Mandy!

Our crew in front of the castle.  It was St. Patrick's Day which is why we are all in green.  Also, not a great idea to be staring into the sun! ;)  More posts to come...!

The way I see it...

FLAWS

I have so many flaws.  There probably isn’t enough space
to list them all.  One of those flaws is something I know I
do, but I just can’t get past.  It makes me crazy.

I have a problem letting things go.  Have you seen the
movie, “Frozen?”  That part where Elsa sings at the top
of her lungs, “Let it go, let it go...”  Yep, I need to
do that.

I don’t know if it’s because I’m a female or because
I’m Jamie, but it is just hard for me.  Subconsciously, I
tell myself that whatever it is is not a big deal and it was
out of my control and therefore shouldn’t get under 

my skin.

And then there’s the other side of my brain that says,
“But, but, but... wait a second that person/place/thing
did something that really upset you and you shouldn’t
forget that!”  So, my internal struggle continues.  What
my mind tells me to do versus what my heart feels.

You know that my motto for so many things is, “Is this a
big deal in the scheme of life?”  Ninety-nine percent of
the time the answer to that question is no.  Sometimes that
calms me and after a few deep breaths I’m good to go.
Sometimes that doesn’t work.

Another Jamie-ism?  I’m too emotional.  I’m not
calling it a flaw, but I am overly-emotional about pretty
much everything.  Whether it be losing my patience too
quickly or crying too easily.

I’m not going to apologize for being overly-emotional and
having a big heart though.  I care about people.  I
genuinely do.  My family.  My friends.  Kids I meet in
the hospital.  People I observe at the store, the library,
the playground.  I am a people watcher by nature and I
always wonder what people’s stories are.  When we were
stuck at the airport in Orland for a three hour layover?
That was kind of awesome because I just people-watched.

I see a commercial and I cry.  I read a book and I cry.
My kids say something that pulls on the heart strings and I
blink back tears. Is it so wrong to care about people?  Is
it wrong to be emotional?  Is it wrong to (flaws and all)
try to be the best person you can be to others?  To be kind
to others?  Even when it’s hard?  Especially when it’s
hard!

I grew-up with parents that were teachers and then a dad
that was a high school principal and it was HARD. I’ve
told you that before.  Kids were mean.  But it was always
ingrained in my head to do the “politically correct”
thing and put a smile on your face and be polite.  Even
when all of your emotions are telling you otherwise.

To this day, that lesson stays with me.  There are times
(especially lately) when I just want to say what’s really
on my mind and not grin and bear it.  But, I don’t.
Because I care about people even if they don’t in
return.

Ok, I just re-read that and it sounds like I am all-types of
an emotional rollercoaster lately and that would be the
truth.  I’m not always rainbows and unicorns.  Somedays
are just hard.  Some weeks are hard.  This too shall
pass.

Anyway, if you are still reading this (thank you!).  Let's 

remember that everything happens for a reason and some

things are just blessings in disguise, but that's just the way

I see it. 

P.S.  I'm starting to work on a my Disney posts, so happy pics and all that awesomeness coming soon!