Saturday, November 16, 2013

Photoshoot and a trip to the Science Center

Today we took Finley to an event for kids with rare diseases.  There is a photographer that takes pictures of kids who have rare diseases and they hold these events.  Mat was told about it at Pfizer, and asked to bring Finley.  So off we went.

We don't have the pictures the photographer took - not yet - I think they will be putting them online soon.  But I took a few pictures while were there playing around.

They had face painting, and arts and crafts, and dress up, and music - it was fun.  The kids had a great time.

After that, we went to the Boston Science Center for the rest of the afternoon.  It was the first time I was there and that place is HUGE.  You definitely need a full day.  But the kids had fun and went to bed easily tonight after a long day.

Enjoy the pictures!!  Oh - we accidentally forgot Finley's glasses, so she doesn't have them on below.  We never do that - but Mat and both thought the other grabbed know....old age.

The photographer took shots of all the kids together, too.  And he took pictures of Arlington and Cainan alone to make them feel special as well:
 They had a dress up section, which the kids really liked:

 Cainan liked banging on some musica instruments:

 Goofy girls

 My favorite picture of the day:

At the Science Center.  Finley was looking for where she lived:
Cainan was trying to see how far it was from Mass. to China:

Thursday, November 14, 2013

The Goings On

Eek.  A whole week and no blog post.  I am really slipping.   I have thought about it, but there wasn't much to really say.

But - then I thought - I am Italian!  There is ALWAYS something to say, right?  So - how about a catch up post? 

Finley has been having some trouble with school.  She had a full blown meltdown last Thursday about not wanting to be there.  She told me it is too hard, and she can't see it, and everyone is doing better than she is, that she doesn't understand it, it moves too fast.....  on and on.  She just was so upset, and I felt so bad.

Most of what she says is not true.  Yes she has trouble seeing and yes it moves fast for her because it takes her awhile to process information.  But her teacher and I met this past Tuesday and she said she is doing just fine.  She didn't have over concerns about her - she is doing much better in reading with some support.  She is doing well in Math.  Will she ever be the top of her class?  No.  But she is holding her own.

She was also sick last week, so that didn't help.  This week has been much better.  She has gone to school willingly.  We have been talking more to her about ability, and we are going to put her back into counseling.  I feel that helped a lot last year with getting her to BELIEVE she can do it.  Because all the ability in the world isn't going to me anything if she doesn't have the will power.

We are working on having three fundraisers for our foundation in 2014.  The first one will be April 27th, 2014 in North Park, Allison Park, Pennsylvania.  This one will be a true running event - no picnic attached to it.  It is the weekend before the Pittsburgh Marathon, so we are hoping to draw some runners who just want to practice for the big marathon.  We are doing a 1 mile, 5 mile, 10 mile, and 15 mile runs.  We are anxious to see if we can pull this off, and then it will just be an annual thing for us.  I am excited to try a "Race only" event.

Our second event will be in Massachusetts on June 8th, 2014.  This is the same event we had in Massachusetts last year - just a different date.  We have to have it on a Sunday this year because of when soccer falls for the town kids.  Yes - I am working around soccer.  The reason for that is (even though none of my kids play) is that soccer is HUGE in this town, and over 600 kids play.  That takes away just about everyone I know.  And they will choose soccer-  as much as they love us - because it is around the last game of the season.

So I wasn't even about the fight that battle.  We are going to start the event at 1pm, and have a "desset and fruit bar" instead of lunch this time.  We will still have the bounce house, hair feathers, face painting, music, and all the fun.  This one will be a 5K run/walk and a 1 mile fun run on a trial, just like last year.

Our THIRD and FINAL event is our annual Connellsville race.  We are having that event on August 16th this year - a week earlier than normal. Last year we got a lot of feedback that being the weekend before school wasn't the greatest, so we are going a week earlier.  So we will see if that improves turnout or we just need to think about moving it out of August all together.  We will be offering a 5K, 10K for sure, but not sure about the 1 mile.  I would LOVE to do a 10 mile, but I don't know if we will get the runners.  The 10K was much more popular this past year than before, so we will see.  We are having this event first thing in the morning because of the heat.  WE are making it MUCH shorter this year - it will be over by 12:30 or so, so that will help as well.  We will still have lunch, bounce house, face painting, hair feathers, basket raffle, etc.  Going to be a fun time.

So we are keeping busy.  If you live near any of these areas, we hope you will come and join us.  We have a lot (a lot) of money to raise this next year, so we are going to be pushing as hard as we can.  It is going to be crazy, but fun!

As for everything else - we are just hanging in there.  Arlington and Cainan are doing well.  Having great years at school.  Cainan is loving Karate - he goes twice a week.  He is still in his reading and math program outside of school and that has given him such a great base for school.  Arlington just finished a basketball clinic and is about to start Rec. basketball for the winter.  She has also joined the yearbook club at school and the news club.

Busy, busy.  We are looking forward to the holidays and visiting with family.  Time is moving along fast!

Wednesday, November 6, 2013

Making it through the hard times

Lately I have been in a funk about Finley's school stuff.  She had a great team, but it is SO big, and SO many differing opinions, I don't feel that meetings we have really go anywhere.  We just go round and round and I just leave feeling frustrated.

The day of our last meeting, two weeks ago, I came home and needed to blow off some steam.  I went to my exercise class, but still felt wound up.  So....I came home and did some reading.  I had been working on the book "Allegiant" - by Veronica Roth.

The chapter I was on was talking about a sculpture.  The sculpture was a slab of stone with a large crack the ran through the middle of it.  Above the slab of stone was a glass tank full of water.  From the tank, water drips one drop at a time and disappears down into the stone below.

It turns out that this sculpture is a symbol.  The slab of stone is the problem they are facing.  The tank of water is their potential for changing that problem.  And the drop of water is what they are actually able to do at any given time.

The way they look at it is that if you are persistent enough, even tiny drops of water, over time, can change the rock forever.  And it will never change it back.

One of the characters thought it would be better to just unleash the whole tank of water at once.  She felt that doing a little at once can fix something, eventually, but she believed that if something was truly a problem, you throw everything you have at it because you can't help yourself.

The other character explained that this would only help momentarily.  But that then they wouldn't have any water left to do anything else, and some things cannot be solved with one big charge.


This is something I was glad to read on this particular day.  I tend to jump in with two feet and want to go full charge ahead, when the reality is - slow and steady wins the race.  I get so frustrated because I want everything to be perfect RIGHT NOW, and I want everything to we resolved RIGHT NOW.  But the truth is....that is not realistic. 

We must bend and flow.  We must be patient.  We must work with Finley's team, and respect the knowledge they bring to the table, and hope that they will respect us in return.

This passage from the book also applies to our foundation and our efforts for a cure.  We would love to sprint to the end.  But we know that research doesn't work like that.  We have to have a measure of patience so that when our kids are given the cure, everything is perfect.  That the researchers have had the time they need to obtain everything they need to make a clinical trial happen. 

We all know what we have to do on any given day at any given time.  We know the right approach.  It isn't always easy.  My husband is fluent in being patient and seeing the light at the end of the tunnel.  I am more of the person who throws her hands up and wants to jump up and scream when things are not going how I would hope they would.

One step at a time.  That step will change our path forever.  Just like the water over the rock.  And we will never be the same.

Tuesday, November 5, 2013

Arlington's room make over

I know I have dropped the ball on Making Meals Mondays.  Problem is - Mat is in a funky travel schedule right now and hasn't been home for dinner in over 2 weeks.  It is driving us all crazy, but I have not made fancy meals without him here to eat them.  (they make too much food for just me and the kids).  So - .......moving on.

For Arlington's 10th birthday, she got her ears pierced, but she also wanted to redo her room.  IT took her 9 LOOOOOOOONG months to come up with the right paint color and pick her bedding so that we could get started on the transformation.  She is 99% Mat.  She can never.ever.make.decisions.

So - a few weeks ago I told her that soon she will be 11, and if she doesn't decide soon, we were either going to forget it, or I was going to choose.  So - within a matter of days, she chose her wall color (purple) and her bedding (purple dots).  We got things in order, and I went forward with transforming the room completely.

It is now a completely different space.  Besides the carpet (which, until she stops spilling stuff is going to remain) everything is different.  We didn't spend a lot - we just refurbished a lot of what we had.  We added some new touches, and just changed the arrangement of her furniture, and wala!  A new space.

It took me a week of every day, all day being up on the third floor.  I watched more documentaries during that week than I have all year.  But now it is done, and Arlington is in her new space.

So - here are the pictures of her new room.  The room before - the walls were yellow and the space dull.  Now it is a pre-teen room all the way.

 The finished product.  This picture makes her room look small, but it isn't.  i was trying to get everything in the picture!  That is the new bedding is courtesy of her Grammy and Papa:
The art on the wall is new, and the jewelry box was her great grandmothers:
 The picture on the right is an Etsy find.  IT is famous women scientist.  We had the frame and the matting, and so we got it all set.  The Owl I downloaded from the internet, printed and framed:
 This is the top of the dresser.  I added some inexpensive fun duct tape to it because it was scratched from age. 
 The pictures on the wall are prints that Mat framed and matted.  Two super heroes, and her favorite Disney ride - Splash mountain.  The lamp SHADE is new (the old one cracked) and I added some washi tape to it for some bling.  The base I spray painted to made it purple.  I added some fun, inexpensive duct tape to her bedside table because it was scratched.  Now it is so her.
 This is her largest window area in her room.  The white piece above the window was there, but plain.  It houses some lights.  So I painted on some colorful, sparkly dots (using Martha stewart sparkle paint).
 I loved this painting I found on Etsy.  It is a picture of a Goldendoodle sitting under a tree with a tennis ball.  It is SO Scooby, our Goldendoodle.  We even have a tree just like this outside our house and he always has a tennis ball at paw:
 Two art prints.  One of Arlington's favorite Disney movies is Lilo and Stitch.  We found a print that says "Leave me Alone to Die" which is her whole pre-teen attitude right now.  The other painting is from Etsy and is a painting of a goldendoodle with his head on the table.  Another Scooby move.
 The painting on the left was designed by an art student from Connellsville.  It is a character - Vanelope - from the movie "Wreck it Ralph" that Arlington really likes.  It is the same art student that designed our very first Finley's Fighters logo.  The print on the right Arlington picked up at Comic Con New York of Merida from "Brave".
 I love these vinyl quotes I am finding for the kid's rooms.  This one is right above her dresser, so that every day she sees it when she gets dressed.  I get the vinyl quotes from Amazon, and they are very inexpensive.  On top of her dresser is her girl "succession of years" that her Gramma and Pappy buy her each year from her bithday.
 Her desk in her reading nook.  We had the white desk, and we gave it some bling.  I used washi tape on the top and then coated it to protect it with sealer. 
 Loved this quote as well:
 A closer look at the top of her desk.  This took me a few hours because each strip is an individual tape.  But it was so fun.
 A close up of the bottom of the desk.  I used purple duct tape to outline the drawers. Then I used Martha Stewarts glitter paint for the drawer pulls.  I spray painted the chair purple, and then added duct tape to the chair legs.
 Desk top.
 Her book case.  This book case was given to us by a family friend and it is the perfect fit for Arlington's room.  It had a bit of a rough top, so we added some fun duct tape to make it a little more girly.
 I saw this on Pinterest - it was harder to do than it looked.  I glued buttons on a canvas with a hot glue gun and 2 hours later I had an "A".
 The top of the bookcase:
 The reading nook.  She picked out the little stool with some of her birthday money:
 We bought her a new celing fan.  Hers didn't have a light and in the evenings, her room is not well lit.
 Of course - we couldn't leave it boring white.  I added some washi tape to the blades.

 Mat built these little boxes that we hung on the walls to hold her trinkets.
 I found this license plate on Ebay.  It was perfect because Arlington was born in California in February 2003.  Great find.
 Arlington loves owls, so we added some of her great grandmother's owls to her room:
 This is the box right next to her bed.  She made the little scientist with a kit Mat gave her.  And we are keeping the books she is working on right next to her bed.
 She picked up a copy of the Declaration of Independence while we were in Philly this summer, so we framed it for her.
The happy girl in her new room!!!

Friday, November 1, 2013

16 Years

Today Mat and I celebrate our 16th wedding anniversary.  I don't know where the time has gone.  16 years went by really fast.  8 moves, 6 states, 3 kids and 2 dogs later we have so many memories.

It rained the day we got married.  Of course 1 million people to me that it is lucky when it rains on your wedding day.  That is just to keep the bride from freaking out.  The sun did come out enough for us to get some outdoor pictures, and we survived.  When you get married in November in the north, you take your chances with the weather.

Mat and I chose November 1st because the number 1 has special meaning in our relationship.  We started dating on March 1st, 1991.  We got engaged on May 1st, 1996.  And so it was destined to be married on the first of the month.  In 1997, the only 1st that was a Saturday, was November 1st.  So, we went with it.

I spent today looking at our wedding album.  We truly look like kids.  We were 22/23 years old when we got married - very young.  We waited 5 years before we had our first child.  Now at ages 38/39 (gasp), with a few more pounds and a few more wrinkles, it is hard to imagine starting all of this over again.

I think the best thing about our relationship is that we were friends first. We met 22 years ago in high school and started dating soon after.  At age 15/16 we had no idea what was in store for us in the future.  We quickly became best friends and made that the most important aspect of our relationship.  We became comfortable just being with each other.  And we continue to be each other's best friend.  We don't need to surround ourselves with constant people to be entertained.  We have always enjoyed each other's company enough. 

16 years of marriage is but a drop in the bucket of what is ahead for us.  My grandparents have been married for 60 years and my parents for 40.  We have so many wonderful things yet to do in this life, and I would not want anyone else beside me for the journey.  He make every day worth while.