I was driving to daycare last night to pick Shane up and I was thinking about Chris (typical) and about how much he loved our car (Honda Pilot).  ”Sophisticated Silver” he called her (all of our cars where of the female variety).  That was one of his things; naming his cars.  When I met him back in the summer of 1999 (almost sounds like a Bryan Adams song) he was driving a burgundy colored Chevrolet Cavalier . . . “Mighty Maroon” he called her.  I thought he was nuts (I soon learned I was right); but I also thought he was cute (right again).  I also believed him when he told me how “Mighty” got the scratches that were all over her exterior roof and hood.  I asked him about it shortly after our first few dates and he told me that when he and Jamie drove cross country to visit Sean a mountain lion attacked the car (while they were inside it!!!) when they were in Colorado.  I was in complete shock; and at the same time SO grateful that his guy I was falling for was okay.  I told that story many times over the next few years and it wasn’t until shortly before our wedding that I found out there was no mountain lion!  He used to remove the snow from his car with a snow shovel!!!  That’s how the scratches really got there.  That was the thing about OC - he was ALWAYS telling such outlandish stories; and there were just as many true stories as there were tall tales - you just never knew what to expect (or to believe) when he spoke.

In July of 2001 we got our first car together; a brand-spankin’ new Honda Civic (OC also got an ice scraper/brush as a “Congrats on our new car” present from me).  Her name?  ”Sexy Silver” (we, apparently, had a thing for silver cars).  And my guy; the man I was living with and had fallen in love with; let me drive her home from the lot that day.  How many guys would offer to let their girlfriend (we weren’t even engaged at the time) drive their brand new car home from the dealership?  One.  My guy.

I cried on my way to daycare last night (typical) as I thought about all of this; of our car history together over the last 10 years.  I was sad that he’d never again get to drive the Pilot, a car he absolutely LOVED everything about.  I was sad that none of my future cars would ever have names given to them by OC - that privilege stops with “Sophisticated Silver”; makes me never want to give her up.  Not that I ever planned on it.

Just one more reason to miss Chris.  Seems like I find a least 100 new reasons to miss him each day.  Life really is hard.

Sunday morning, while we were sitting around eating breakfast, I couldn’t help but notice those little “fried bits of goodness” (as most people would refer to them) that were in the bowl of home fries.

Immediately I thought of Chris, and how he would clean the pan of every last one of those - whether it was home fries we cooked for breakfast or chicken picatta (one of his favorite meals) that we made for dinner.  Except, he didn’t call them “fried bits of goodness”.  In true OC fashion, he had his own unique name for them - and for the life of me I couldn’t recall what it was.  And it bothered me.  It was “signature OC” and I couldn’t remember it.  And it bothered me even more because I couldn’t turn to Chris for the reminder.  And I knew, if I couldn’t remember the word, it would be lost.  Forever.  It was one of those unique husband/wife things.  Something that the general public wouldn’t know.  I NEEDED to remember what the word was.

And Sunday night, I did. 

Schabadees (don’t hold me to the spelling)!  And so, I’m chronicling this OC tidbit here, and I’m sharing one of our personal moments with all of you, so that it will never again be forgotten - even if for just a day.

Schabadees.  I miss that “word”.  I miss OC language.  I miss our personal moments and memories.  I miss my husband.

I’ve been taking control of one of the few things I have complete control of - our house.   I’ve discovered that this last year a lot of extra “stuff” was accumulated.  I’m not usually one to let things sit around, but this last year was anything but “usual” for us.  We were busy fighting a losing battle and we had two extra people (and for a while, one extra dog!) living with us.

Our house isn’t all that big.  And storage space is minimal.  There’s no basement and closet space is all but non-existent.  Since Chris died, and since Jerry and Zita moved to FL, I’ve been feeling like the house has been closing in on me.  Too much clutter.  Too much stuff.  So, slowly, I’ve been taking back control.

It started shortly after J&Z moved out.  The desk and kitchen drawers had annoyed me long enough.  After purchasing some drawer dividers at Target, I went to work and now when I’m looking for something, I know just where to find it and don’t spend 5 minutes rummaging through an overfilled drawer looking for it.

Shane very recently got new bedroom furniture (pictures to come).  I had to empty out his room entirely to make space available for his new “big boy” stuff.  If he doesn’t need it or hasn’t used it, I tossed it.  Seeing as how there won’t be any more babies in my life, I also took the opportunity to purge a lot of his overly used and no longer needed baby items.

The playroom was next.  Lots of toys got tossed or given to baby Brady (and his future sibling!)  What was left behind was organized and I finally, painstakingly, scraped every last sticker off Shane’s table and chair set.

When we got his new furniture, his old stuff (which was really my old stuff) was moved upstairs.  That meant, all the furniture that was upstairs had to come down (and eventually out).  So I took the time to straighten out a few things upstairs.  Organize a little bit more, toss some of the stuff I had previously saved for God knows what and made the space more breathable.  One weekend this winter when I’m feeling brave, I’ll deal with the closets up there.

Our bedroom is next.  This room is tricky.  I’m not anywhere near being ready to pack up anything that once belonged to Chris.  Having his stuff around, and where it belongs, is comforting to me.  Even on my worst days, his belongings can bring me great peace.  But still, my drawers, and my closet, are screaming for some attention.

Little by little, I’m staring to feel at peace in the house again.  You should see the amounts of garbage I’ve dragged out to the curb these last few weeks.  It feels good to be getting clutter free.  To not feel so closed in by “stuff”.  To be organized and to have everything be in it’s place.  It feels good to be in control of something again.  To feel like I have a say in something.  There’s something calming about coming home at the end of the day to a house that’s “breathable” and clutter free.  I’m looking forward to having everything organized and put away.  Who knew a little cleaning could go such a long way.

**On a side note; anyone notice how I keep saying “our”.  I catch myself doing that all the time now.  I still think of things as “ours” though, not as “mine”.  I guess old habits are hard to break.  Especially when you’re not all that eager to break them.**

For a few months now, our coffee maker had been shutting itself off shortly after it finished brewing.  On Monday it wouldn’t go back on.  It didn’t owe us anything it was over 5 years old.

On Tuesday, I picked up a new coffee maker on my lunch hour and when I got home that night after work, I brought it into the house to make the switch.

Then I started to cry.  As I was taking the, now broken, coffee maker off the counter I realized it was a gift at our bridal shower.  That coffee maker outlasted my husband by almost 4 months.  That just sucks.  And as I started taking the new one out of the box, I realized that Chris would never get to use it.  He’d never even see it.  Double sucks.

So apparently replacing broken kitchen electrics is one more thing I have to put on my “can’t do” list.

Again, I have to ask, how in the world did we end up here?

Thank God for my photo obsession.  A camera is usually never far from my hands (though that’s not so accurate this last year) and because of that - because of the thousands (literally) of photos I’ve taken in the last few years - I have the opportunity to stumble upon gems like this.  A photo which was once tossed aside as a “test” shot, now means EVERYTHING to me.

My husband as I hope to someday be able to remember him - handsome, happy and healthy:

I miss you, my love.

A week or two after Chris died, one of his best friends, Jim, came up with his son to spend the day with Shane and I.  Aunt Tracie was still here from FL, so she got to come and enjoy the day, too.

We went to the zoo in Bridgeport (cute, small, cheap), went and had chicks & fries for lunch and then went up to the cemetery so visit with our guy.  It was a nice day despite the underlying tone.

Chris has two of the best friends in the entire world.  And thanks to the two of them, memories like these will be abundant.  And for Shane, Chris will live on through them.

Shane and Uncle Jim watching the wolves:

Shane and James :

This last picture was our sign from Chris that day.  It’s how we know he was there and that he was happy we were all together.  When he was little his mom dressed him as the Pillsbury Doughboy for a parade when he was younger.   His cousins got to dress in cool costumes and there was Chris in his Doughboy outfit!  The (supposed) humiliation is something he never let his parents forget.  For those of you that know Chris, you know how he can harp on things and carry on (and on, and on).  It’s become a running joke in the family.  Chris was always getting Doughboy gifts for the holidays (t-shirts, ornaments, serving trays) - he even ended up with TWO Doughboy dolls while he was in the hospital!  The day we were at the zoo there were a lot of summer camp kids there - all wearing these yellow shirts.  This kid, this ONE kid, is the only one who had anything written on the back of his shirt.  A true sign.  Chris never was much of a speller:

Yesterday our friends and family showed us what it means to be surrounded in love and support.  As you all poured into Chuck’s to lift Chris’s spirit and to help support our family, our hearts were overfilled with pure, raw emotion.  And with gratitude.

We have no words that can adequately express what yesterday meant to us.  Your generosity aside, it was incredibly comforting to be surrounded by so many people that love us and are fighting along side with us.  To say our spirit’s were lifted is an understatement.  We feel re-fueled.  Ready to drive right through whatever road block comes next on this journey of ours. 

To those of you who made the trip, from near or far, we thank you.  To those who wanted to be there and who are supporting us still, we thank you.  To our incredible families, we’d be unable to make it through a day without you.

To Joe Russo and the folks at Chuck’s, thank you for offering to host the benefit at your restaurant.  Chris and I have many fond memories of Chuck’s and yesterday’s event was just one more for the memory books.  We look forward to sharing many more meals there together.

To the Russo family, thank you for all of your hard work yesterday.  From making all the food, serving all the drinks, cleaning all the tables and working the raffle and silent auction - yesterday wouldn’t have been possible without all of you.

To Chris Buesing, Amy Darrah, Melissa & Doug, Luna Salon, G & S Specialties and all the other businesses who offered their services/merchandise as donations, we thank you.

But mostly, to Sue and Jamie Buesing, yesterday was possible because of you guys.  We know the work you put into making this benefit the huge success that it was, to say we’re grateful just doesn’t cut it.  For your endless trips from PA to CT to offer your support (often with 3 young kids in tow), for your phone calls, for your encouraging words, for knowing what we need before we do, for always being RIGHT THERE - we thank you.  We love you.  We’re lucky to have you behind us, and we know it.

Today, our hearts are filled and our minds are clear.  Thank you all for that gift.

Better format.  Larger pictures.  More of us.  Stay tuned.

The last week has been rough. Tensions are high. Sleep is minimal. I think we’re all emotionally drained.

And Shane, our poor, sweet little boy, all too often lately, ends up being a “casualty” in all of this. Breaks my heart. He’s 3. He should have Mommy and Daddy’s undivided attention, and many times, most times, our attention is anything but undivided.

Recovery on Chris is harder this time around, I think because the two procedures were done so close together, he didn’t have time to completely heal from the first go around. Watching him struggle is an internal battle for me, and lately, parts of every day find me, find us, in tears. The weight loss continues, the feet continue to swell, sleep is still hard to come by, and lately, the life is gone from his eyes. He looks like a man in desperate need of a break. A break from the pain, the treatment, the recovery. Yet we know there are a few more steps we need to walk before that break will happen. That’s tough on all of us.

Chris has said that most days he feels like he’s just surviving. He’s not living. And it’s the living part he wants to get back to -we all do - and we will, no doubt. But the road is much rockier and much longer than we had imagined.

Things we used to love to do get pushed aside to make room for the things we need to do, namely, to heal. All of us. Inside and out. My therapist tells me that it’s important to not let go of the things that make us, us. The photography. The walks on the beach. The trips to the children’s museum. The walks thru the park with the dogs. The family vacations. The Sunday drives. The sporting events. All the things that make our family who we are - they’re the things we seem to be letting go off and it’s high time we regain control and welcome these things, our things, back into our life. Perhaps that is when the healing will really begin.

So - first things first, head CT came back clear!!! It wasn’t something we really ever thought was going to a problem, but still - it’s good to know that everything is fine and we’re SO thankful for the prayers and support that helped us get those results!

Chris is doing well. Nausea is his biggest complaint, and thankfully, that has been much better the last day or so. He has some pain, but nothing unbearable, thankfully.

His sodium levels are a bit low, but nothing that they were surprised to see. All in all, he’s doing well and this embolization has gone MUCH better than the last one!

His doctors are taking him off the IV today and will start him on oral pain meds. If that all goes well, and if he continues to eat and feels up to it, they may even let him go home tonight! So, we’re continuting to sit it out and wait and see what happens.

In other news, our little guy officially turned 3 yesterday!!! We’ll do a big birthday post for him later in the week once things have quieted down around here.

Keep those prayers coming!!

It’s always something. Chris got into his room yesterday around 4:30. At 6:30 his nurse came in to say that they had ordered a CT scan of his head and he’d be going back down to the 2nd floor to have that done. NEVER a dull moment!

They were concerned because one of his eyes wasn’t as open as the other eye and that eye was also appearing a bit red. They wanted to be sure it was nothing and so the CT scan was ordered.

I’m not sure when we’ll get the results back. In my heart I don’t think there’s anything to worry about. He was still pretty groggy yesterday and he’s always been one to do things like that with his eyes - he even watches TV that way. Still, it’s something else to worry about for now!

So, prayers for clean head CT scan would be appreciated! They’ve been working thus far - keep them coming!!

The embolization experience this go around has been much better and much less stressful than it was 7 weeks ago.

We were told to arrive at 8am and the procedure was scheduled for 10. Chris’s blood pressure, as great as it was last Thursday, has been high since his pre-surgical appointment on Monday. We were actually starting to get nervous that they would cancel us because despite the constant changes to his blood pressure medication this week, his blood pressure was still high yesterday.

When we got here this morning, his blood pressure was 159/93 - and we thought for sure that we were going to be walking back out the door. But 10 minutes later, they checked it again (in the other arm) and it was 152/84 - we were a go!

Chris and I were escorted down to the 2nd floor where the embolization would occur, and Jerry and Zita went down to the lobby to wait for me. Chris was quickly taken into the procedure room, we said our goodbyes as we each fought off tears and I went off to find his parents to wait.

Dr. G. came out around 12:30 to say that while the embolization went VERY well (YEAH!!) his blood pressure did in fact rise and they were unable to remove the catheter (at this point we were fearing a repeat of last time). But unlike last time, Dr. G. came out again 30 minutes later to say that they were able to get his blood pressure low enough to be able to remove the catheter and that they’d be moving him up to recovery shortly!

By 1:30 he was in recovery, we saw him around 3pm and while still groggy, he was MUCH more alert than he was the last time.

The best news of all . . . . Dr. G. thinks Chris may be able to go home on Sunday!! Sunday, for those of you who don’t remember, is Shane’s 3rd birthday! Nothing would make us happier than the spend the day together, at home, as a family! So here’s to a speedy recovery!

Many thanks for all the support and prayers. They truly are what carries us through.

Just a few more video clips of Shane, these from singing “Happy Birthday” to him on Saturday! This kid LOVES him some attention!! Is he his Daddy’s boy or what!

(Both taken on “Aunt Tate’s” cell phone - thanks Aunt Kate!)

Happy Birthday

Happy Birthday 2

Welcome to OUR world!!!

Say that three times fast!!!

That’s the diagnosis (after biopsy) on the rash Chris had on his legs and ankles that, eventually, caused the swelling in his feet (apparently, my husband can’t just get a good old fashioned rash that is taken care of with a little cortisone cream!)

Basically, that big, long, clinical name translates to “rash caused by bacterial infection”. In his case, it was likely caused from the toxins that the dying tumors (from the embolization) are giving off.

A few days on 10mg of prednisone, and he was just about as good as new!

He had a follow up with the dermatologist today and after a few more doses of the prednisone, he should be good to go!

Other than the rash, he’s been doing GREAT lately! Eating well, sleeping a (TINY) bit better, pain is more manageable, he’s playing with Shane and my boys have even claimed back their mornings together (even if it is just 2 mornings a week right now - we’ll take it!!) and he’s only crawling into bed at night now! I can’t even begin to describe how great it is to see Chris looking so good. He’s come a long way since March 9 (day before his embolization) and I know he’ll be doing even better after the second embolization is done!

We’re well on our way to claiming our life back!!!!!!!

We’re back to Sloan-Kettering on Thursday for a follow up CT scan and to meet with Dr. G. regarding the embolization Chris had in March and on, hopefully, scheduling the one for the left side of his liver in another week or two.

Prayers are always welcome around here!!

So we had ourselves a FANTASTIC 4-day family weekend (more on that tomorrow)!!!

We kicked things off on Friday morning with a trip to the Arena at Harbor Yards to watch us some Sesame Street Live!! Our little guy had the best time and is STILL pouring through his $12 program!!!

***Happy Birthday, Nana!!! I actually FORGOT to wish my own Mom a Happy Birthday on the phone this morning (can you believe that!! Pass over the daughter of the year award, for sure!!!), so I HAD to give her a shout out on the blog to make up for it! We love you!!

Once Shane gathered all the eggs from his Easter egg “hunt” in the backyard, he went into Nana’s living room and ripped open those eggs with a vengeance!! He couldn’t possibly have eaten any more puffs or Cheerios in one day if he had wanted to!

If you haven’t seen the videos of him collecting the eggs, watch those first!

Surprises Inside

He lights up our entire world, in more ways than one, and it was SO great to watch him be a kid yesterday! He completely enjoyed his easter egg “hunt” that Aunt Kate set up in Nana’s backyard! Here’s the proof!

(Recorded on Aunt Kate’s cell phone):

Easter Egg Hunt

Easter Egg Hunt 2