hey- this wasn’t in the brochure!

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It’s been a long several days here in the window.
not exactly how we planned on starting our summer vacation.

One thing this horrible disease has given us over the last few years is a perspective on what’s important to us individually and as a family. Time by the water is IT for us and it’s a hard expectation to drop, that well get another summer at the beach, life as normal. Surfing, sailing, clamming in Chappy, it all seems pretty difficult right now.

Dean is fighting off some nasty pneumonia this week – not want you want to be doing the first week of summer vacation. We’re in good hands here at Penn, the best our city of brotherly love has to offer. That said – it’s been a week of first experiences too -ambulance rides, extended hospital stays and trying to navigate the waters of the next several weeks. The girls have been transitioning from school to summer with a brief stop at soccer camp for G. Their sailing season has started and what is typically a challenging week under normal circumstances, has proven to be even more difficult with the two of us grounded here in Philly, held hostage by IV antibiotics, shortness of breath and recycled air. Thank goodness for family and friends who know just what you need before you even do – thanks everyone for the Animo deliveries, 5 star takeout, fresh baked cookies, soccer camp runs, sailing help and prayers. Fortunately, Superman is feeling relatively well, considering. It’s incredible to look at the scans of Dean’s lungs, and see the war going on in there. It’s hard to figure how he’s even getting any oxygen, and how theres no fever and no coughing. Just another super power, his ability to put mind over matter. It’s a lesson we could all take from Dean’s fight, how keeping strong in your mind and your intention. It’s proof that our thoughts can carry a shit ton more weight than we think.

So thats where we are at 4:44 on Wednesday morning – with the INTENTION of getting well enough to bust out of here and get back to the beach, toes in the sand with the waves crashing in – ok we live in New Jersey – so maybe waves rippling in. We’re about to head into what we refer to here as the season of “summer flats” where you stand by watching the swell forecast with the hopes of catching that storm that brings SOMETHING rideable your way. Not ideal for the big boys, but perfect for the kids and for the stand up paddles. We’ll sit at Waverly Beach and watch all the girls goof off in the water, create those special bonds with their summertime friends and practice their cartwheels. We’ll rest, and recuperate while we live in the window of our very favorite season at home.

We hope you’ll do something memorable this summer too- take some time off, get your own feet in the sand. Life goes by quick, and kids grow up fast. Stop and smell the roses, live a little, love bigger, and those dreams? those goals? they’re happening now. LIFE is happening now. Grab it, chase it and create the life you want to live, don’t wait! DO IT NOW DO IT NOW DO IT NOW.

does anyone have a flashlight? these windows are hard to find!

deanrevs

OK – trying to catch up on the writing, bear with my LONG post – its really multiple posts, but I’m not good at making the time to write lately. #summerresolution

It’s been a constant flurry of visitors, cookies, band practice, fresh fruit, porch beers, take out, surprise packages and lots of tea this week-while we we’re hunkered down recouping after last week’s turn of events- although we did sneak out for a Memorial Day BBQ of epic proportions – thanks Spiv, et al.

Dean is definitely creeping back to feeling human and actually able to stand on the sidelines again.  Our team of doctors and friends has been amazing and we are so so blessed – everyone keeping so positive and really understanding what’s best for Dean and what’s most important to us going forward. We couldn’t ask for better care. Really.

They’ve just finished up radiation to his spine, hip and brain – 8 weeks of radiation 5 days a week –  to relieve his pain, and hopefully build enough strength to get back to life as somewhat usual. Another new normal. Chemo started back up for the next six months, we’ll commute from the beach once a week.  Really really rocky road and he’s feeling super crappy.  We decided time off from work was best, and with him not able to drive just now, it means I’m off too. We both hate not working, but alas, Dean has to sit in the passenger seat – and coach my driving, delightful, truly. It’s hard not to work, and I can appreciate the frustration and hesitation he had in making that decision. Funny how God works. I’m just seeing that now.

We’ll head to the beach in two weeks forsome much needed time with our feet in the sand.  We’ll come up for treatment, but focus on the girls and their sailing season and spending as many days in and on the water as possible. Dean’s favorite place, at the end of our jetty.  It’s a thin spot for us, something Michael Doyle uses to describe a place where you feel close to God. With all well wishes and prayers, he’ll be strong enough to paddle out and catch a few waves, hoot and holler with the guys and watch the girls do what they love as well. We’re a water family, and thats where we should be. He’s tired of cancer, and frankly so am I. It’ll be an important summer.

As if the last few weeks weren’t shitty enough, we lost a friend unexpectedly over Memorial Day, and suddenly, as bad as our week was looking, we realized it could be worse, that we were the lucky ones and that every single minute is so precious.  Our entire zip code is mourning the loss and sending prayers of strength and peace to Keith’s lovely wife and family. I seriously haven’t met a more upstanding guy ever. Its just tragic.

Dean’s grandmother also passed away last week, at the age of 99. Nanny Ursula was an amazing woman, who taught us all so much, for me in particular, the gift of summers at the beach, all piled in, and how it really can bring a family together, not to mention lots of late nights, laughter and good times. Also, how to serve tiny hot peppers with fancy little scissors, so you could cut them fresh for your pasta.

There have been lots of questions from the girls and discussion about family – and community and death and life. It’s been a pretty intense experience and we’re all a little more grateful for what we have, and certainly a little closer as a family.

In typical Cucinotta style, we have had some amazing fun amongst it all. The windows can be little, but certainly what carryus through the rocky terrain. There’s been lots of music, like clear the dining room of all furniture and have band practice with the boys music. Spontaneous, groovy and full of love. Dean and the In The Red guys have been together for 30+ years, certainly no lack of good stories and incredible memories, a true brotherhood – plus it’s my favorite thing to do, hang out at band practice. It’s magical and healing and fun and oh so good for the soul. if you drive by and hear them playing, stop in for sure.

Last week, our favorite New Orleans guys were in town for a blink – Dave, Andrew, Rob, George, Ed, Zach and Michael – together a powerhouse of energy and talent that make up The Revivalists. We’ve seen them countless times at this point, and become friends in the last little while. I remember when Dean first heard them – he smiled and said, “man – I gotta play with these guys!” and so it was…a little WHIPPIN’ POST – Revivalists style – horns and all – with smiles all around. We were all in awe watching.  Someone that night said, “the music will make it all better” and for that night, it sure did. What a blessing guys, thanks so much!Get out and see them this summer THEY ARE EVERYWHERE! Here’s a little snippet of the night. (click on the red words) Enjoy! When you watch it – you’ll want more, I know. We were all so busy taking it in, we really didn’t get much video – my sister has one as well, but it’s stuck on her phone 😦

Thank you to everyone taking care of us and making sure we’re fed, and watered – literally- we are so blessed to have friends and family surrounding us and loving us so BIG. xx