Hello...?!

My blog.  We meet again.

My thoughts and feelings.  My life.  It has changed.  Dramatically.

I haven't written in so long.  Years.  Haven't gone back to read what I wrote before.  Don't know if I will.  Well, I will eventually.  I may delete.  I may not.

I wish life were that simple.  You could just go back and change, delete even, the things you wish never happened.  The things that hurt so incredibly bad, especially when the pain just won't.go.away.

A lot has changed since the last time I opened this little blog.  My husband and I now live in the DC Metro area.  We will have four candles on our anniversary cake this year--that is, if we celebrate with a cake.  We purchased our first home in 2012 and two weeks later, we welcomed our baby girl into the world.

She is the absolute coolest person I have ever met.  She's amazing.  No, seriously.

Parenthood has changed everything.  Everything.  Our marriage, our outlook on life, our purpose.

Our girl has a genetic disease.  She got a soft diagnosis at 2 months of age and we got the hard diagnosis at 9 months.  That word--hard--doesn't even come close.  The diagnosis should be said as solid.  Irreversible.  Forever.

Neurofibromatosis.  [Did you read it without pausing?  No worries, we had to practice it a few times ourselves.]  Type 1.  It's more common than you'd think.  1 in every 3,000 or 4,000 births.  Our girl is that 1.  One.  Uno.  Un.  By herself.  Not like the rest.  She will never "outgrow it" as some have suggested.  Others try to say "it will be okay", but it isn't.  It won't.  Our girl is a statistic.

I have really struggled with this whole thing.  I cry.  A lot.  More than a lot.  I sob.  The "ugly, can't catch my breath, wanna scream at God" sob.  I cry for her.  For the many things she has already endured and for the many, many more to come.

Last week, she had her first MRI.  Most people go their entire life without one.  She had her first at 20 months.  I say first because there will be more.  "Only yearly if everything is looking good."  It's not.

It was traumatic for all of us.  She locked eyes with me through her tears and screamed, "Mommy!"-- I just kept telling her I love her and we helped the nurses hold her down until the mask did it's job.  It was the closest thing I could imagine to holding her as if she died in my arms.  It was awful for her.  She just didn't understand.  [They give the kids gas to put them to sleep (so they lay still) and then they start the line for the anesthesia and dye.]  

The MRI was on Tuesday.  I got the call on Friday afternoon.  We've only told our parents.  I can't bring myself to talk to people.  To answer questions.  To live that call again.  I could hear the words, but the screaming in my head would.not.stop.  There is bad news and cause for concern news.

There is a glioma on her optic nerve.  A tumor.
My daughter has a brain tumor.
There are also 3-4 spots on her frontal lobe.
We don't have much else.

Her routine, twice yearly appointment is today.  In a few hours.  I can't sleep.  It just so happens that this all fell into a week's time.  Now we know why.

We will ask questions.  Hopefully, we will get some answers.  Maybe, we will get a plan?  We'll bring our list of observations/concerns since the last "team appointment."  The team appointment is draining, but helpful.  We will meet with all of her doctors (each department has a Pediatric, NF doctor), one at a time.  Then, there will be x-rays taken and possibly, blood drawn.  Oh, and anything else that can be crammed into the day that they need for her medical record.

I came back here, to my blog, to write.  Just get it out.  Type through the tears.  Work through the emotions. Not get chastised if I digress.  Won't get interrupted with questions.  Not hear the typical "feel better" phrases.

We stay hopeful.  We remain diligent.  Our girl deserves it.  All these babies/children/people do.

I think I'll be back, soon even.

Perfectly numb,
Danielle

Tis the Season!

I was totally NOT feeling the Christmas spirit this season.  We've had a tough trying last few weeks, personally and in support of some of our very best friends.  By no means is that a complaint, but just an acknowledgement that we have a lot on our plate.  I think a lot of people do lately.

This past weekend was good for me.  It was crazy busy, but I got some good for the soul time with a number of loved ones.  Although the time was limited, it was still time and totally worth the effort.  On Thursday [Thanksgiving] morning, we loaded up the car and made our first trip to visit my brother and SIL in PA.  It was so nice to see their house and to meet their new additions (2 new kittens) for the first time.  The next morning at 5AM, my mother and I drove to Boston to see my maternal grandmother and the extended family.  It was so nice to surprise her--she had no idea!  The following morning, we made our way back to PA for the night.  On Sunday morning, we ate breakfast, spent a little family QT together, and then made our way back to VA.  Busy, right?!

Seeing the family and the talk of Christmas coming up really put me in the spirit.  As I look at our calendar, December is filled with some very happy occasions--a baby shower, a cookie exchange (yummy!), a Grad party & Graduation, planned dates with the hubby, etc.  And of course, we need to squeeze in some holiday shopping and crafts!!  I've got classes ending and doctors appointments to attend.  The list is never-ending! It's gonna be busy, but it'll be worth it!

I am sooooo excited to say that this year we are going to do our first 'family photo Christmas' card.  When I was younger, I thought they were kinda cheesy, but now I get it!  I'm older and I appreciate the effort to stay in touch with loved ones.  This is a special year for us--a bit personal to share just yet--and we are looking forward to people getting their cards.  We have a certain theme in mind--and we're having a photoshoot this Saturday!  I have a dear friend that is a photographer and she has offered to spend a little time with us to get the shots we want.

Do you do family pictures on your Christmas cards?  I see this as the gateway to one day throwing in the Christmas letter...am I on my way to that?!

Guess who's back / back again!

Allllright!  It has been a MIN-UTE since I've visited my blog! 

We got busy. 
We moved...twice.  (One was half way across the country.)
We've had a few too many sad passings to grieve.
I went back to school.  6-week and 8-week classes are the devil!
The mister got an awesome job that he is really enjoying.
We've done some traveling.
We've connected again with old friends and made new ones!
We've fought a few medical issues.

...to name just a few things we've grown from since forever ago April.

So, in case you were wondering, I'm back!  And I am going to really try this time with this little corner of the world.  I'm not going to delete my old posts, because it shows my beginning this, but I'm not going to dwell on the fact that I didn't show the pictures I promised.  Maybe they'll show up in later posts when I think of our time in Chicago.  Hmmm, bear with me as I decide what I want my header to say!

Here we go!  Let's toast to fresh starts!

Perfectly back!,
Danielle

Be the change...

“Be the change you want to see in the world.”  --Mahatma Gandhi

How often do you do something nice for someone?  How often do you "Pay It Forward"?

I try to be nice to everyone I meet.  Literally.  People even say to am too nice.  What the hell does that mean anyways?!?  I smile at strangers, open doors for people, help elderly women with their groceries...you get the point.  Why is it that I find that people of my sort are hard to come by these days??  It's very heartbreaking to think that our society is so self-absorbed that we are not nice anymore just because.

Today is my MIL's birthday...yay MIL!  We took her to lunch with my FIL and BIL.  It is a nice little joint (think family diner) that feeds all kinds of people.  Anyways, as the table next to us got up to leave, they passed us some coupons.  Score!  I love me some coupons. 

Believe it or not, I was surprised.  Within the last few years, I have realized that I am in the "nice people" secret society...and it blew me away that two of us in our secret society were in one place at the same time.  That's just unheard of!  It was a sweet, selfless gesture that was done just to be nice.  And it was nice that they made my day, instead of always being the one making someone else's day.

So here we go.  I challenge YOU!  I want you to do something nice for someone everyday.  Just something small even.  Here are a few easy things to get you started:

-Letting someone cut-in in traffic
-Paying for the guy behind you at the coffee shop
-Giving your leftovers to the homeless person at the red light
-Allowing the elderly person or pregnant woman have your seat on the bus/train/wherever
-Tell someone you like their shoes/shirt/bag/haircut/whatever
-Offer to bring dinner over to a neighbor that is going through a difficult time

You get the idea.  Just do something.  Anything.  Maybe if we start treating each other kindly, we'd be happier people all around.  Then, the grumpy ones would be in the minority.

“Be the change you want to see in the world.”  --Mahatma Gandhi

Perfectly put the Gandhi quote in there twice,
Danielle

I'm Not Dead Yet

Gotta love the P!nk Reference in the title, huh?!  I love her music and her "take me as I am or back the F off" attitude.  No, this post is not about one of my favorite chicks.  It's just been a minute since you have heard from me [again.  sorry!].

I still want to share some photos from February (i.e. my birthday/the Chicago blizzard), but I can't seem to find the camera cord.  I'm hoping it hasn't been packed yet.  Speaking of which...

Our life has been cRaZy lately...and it's only going to get crazier.  We have stopped saying we have to get ready to move...and have officially begun the process.  Boxes have already been packed, a moving truck has been reserved, etc. etc. 

To make the next 6 weeks even more interesting, cause that's how we roll, my husband is graduating with his Bachelor's degree.  Yay!!  Of course I am beyond proud and so excited at this accomplishment!!  On the other hand, it brings a whole other list of things to do.  A Graduation party, a ceremony to attend, my parents flying in to support him...lots of stuff...and then we move 800 miles away...4 very short days later!  (Since we are moving back to my neck of the woods, he jokes that if I could, I would be waiting in the Penske truck in the school parking lot, and we'd leave town right after he walks across the stage...so funny!)  We can do this though, we make the best team :)

I have to say that a wave of emotions that I never saw coming have crept into my heart.  I will miss Chicago sooo much.  3 years ago, when we moved here, I came kicking and screaming.  Not really, but almost!  I was excited at what could be, but I missed the D.C. area with a passion.  It's what I know, ya know?  And I missed my family, dogs, and closest friends more than words could ever describe. 

Now, I am realizing that once I embraced our time here (we knew it was a 3-year temporary type of thing), I actually allowed myself to be present in Chicago.  I allowed myself to enjoy our time here.  I was a girlfriend, a fiance, and am now a wife to the most incredible man.  We adopted our first pet together here.  We became a stronger unit, on our own.  We explored the museums, the parks, the food (oops!  I have a few lbs to lose!), and the scenery.  I am going to miss those late-at-night "let's drive down Lake Shore Drive" spur-of-the-moment drives, just to take in the city.  I will miss seeing the film crews in our neighborhood and waiting to see the finished product in the theatres the following year.  I will miss the broadway shows and the festivals.  I will miss Chicago.

I know that we have a lot to look forward in the years to come and that this is best for our future family, but Chicago will always have a very special place in my heart.  It will always be with me.  I will look back fondly and will know that although we have had some rough patches here, Chicago has been very good to us.  I can't wait until we have kids and we can bring them to visit and show them where Mom & Dad used to live.  Hopefully, some of our favorite spots will still be here and they can breathe in this city as we have.

I will close for now.  I have to make this more of a habit (blogging).  I am realizing it can be a bit therapeutic.

Perfectly in transition,
Danielle

02.01 recap

As mentioned in my previous "catch-up" post, I promised a re-cap of my "offically in the late-20s birthday."  The Mister had planned the entire day for me.  (This is something that he enjoys doing for me, and what girl wouldn't love the romance in it?!  Well, the control freak in me screams inside, but the helpless romantic has has learned to go with it.) 

He woke me up singing Happy Birthday (adorable) and then handed me 50 bucks.  He had to go to one class that day, but instructed me to get up, get ready, and go get a mani/pedi.  Niiiice!  I kept telling him that the day was going to be cut short because of the predicted weather, but then of course this is Chicago; life still goes on, despite the weather.  He gave me a kiss and was off on his way!

We met up again at about 1PM.  The weather was already getting bad.  (more on that in a future post.)  He picked me up from the nail salon and proceeded to our destination.  We got on Lake Shore Drive and headed Southbound.  (The view from LSD is something that I will terribly miss once we move.  It is so beautiful and magnificent, anytime of day and in any season.)  We got off the exit and I knew where we were headed...promptly exclaiming, "the Shedd Aquarium!!"  I was so excited.  I started talking about the rescued sea turtle that I adore and want to cuddle that lives in the massive tank (learn about her here) and the time that we went with my parents.

And then we tried to park in the parking garage.  DENIED!  There was a scroll sign that read: All museums closed due to *Blizzard!!*  Yes, complete with a bedazzled 'Blizzard.'  All we could do was laugh, cause they weren't going to open it for this birthday girl.

My husband is quick though.  If he couldn't get me next to my sea turtle friend, he'd get me next to the next best thing, given the circumstances.  So we went to the Rainforest Cafe, and sat next to one of their huge tanks.  We made the best of the situation and really had a good time.  The place was practically empty because we were the only idiots out that didn't have to be and we took our sweet time eating and chatting with the waitress who was a doll.

Once we finished, we played with the idea of going to a movie, but decided to head home since the snow was falling at 4 inches per hour.  We grabbed a redbox movie and snuggled on the couch the rest of the evening <3  It was quite nice to just take it all in and celebrate my first married birthday.  I feel so blessed to spend every.single.birthday with this man for the rest of my life.

**Side note:  Since the plans got ruined, my birthday was celebrated throughout the month, since Sergio later took me to the places he had planned that day (i.e. the movies, dinner at my fav tapas restaurant, etc.).  It was good to be me in February :)

Perfectly ready for another year,
Danielle

Vanishing Act

Hello again!  I am so sorry that I went a bit M.I.A. for a minute.  I've had a number of things going on good and bad that I have been taking care of and quite frankly, haven't had the energy to blog.  Here's a quick synopsis:

--The hubby is back in school, full force.  He's in his last semester as an undergrad student and I couldn't be a prouder wife :)  You see, I have been his biggest support since he started taking classes and have seen how hard he has worked to better himself.  He's such a great guy that is always striving higher and higher.  I know that he does this for himself, for us, and our future child[ren].  Love you hun!

--My mouth is pretty much healed.  Every so often, something will hurt back there, but no complaints overall really.  I've gotten used to my "new mouth" and it feels more natural back there, not too much of that "something's missing" feeling anymore.

--I've started a new "project", if you will.  It takes up a significant amount of my time, but it's something that I am not going to discuss here for now.  Just know that it's keeping me busy, getting my arse outta the house, and I'm getting some wonderful experience being a housewife/stay at home mommy.  *snaps for practicing*

--My birthday was a lot of fun, in a totally not go out on the town-type of way.  We got snowed in.  Like, forreal.  Snowcapalyse in Chicago happened on my birthday.  The wonderful and thoughtful husband had planned the entire day for me (more on that later) and all but ONE thing had to be rescheduled...because Chicago was shut DOWN.  I will do a post soon on what we ended up doing.

--We have begun the packing process for the move back to the East Coast.  Very exciting, but kinda depressing at the same time.  I will definitely be speaking of this on the blog because these feelings have slapped me in the heart face and none of us saw them coming!  Nonetheless, packing/moving tips are always appreciated :)

I think that clears up some of the reason why I haven't been blogging, but I promise I will make so much more of an effort.  Even though this little adventure is new, I did miss the outlet.

Perfectly trying to juggle life,
Danielle