Tuesday, December 31, 2019

These Last 10 Years

New Year's Eve 2009 seems like a lifetime away.

Before Domani was born. 

Before Joe's diagnosis. 

Before single parenthood. 

Before running a marathon. 

Before the Afghan Whigs reunion. 

Before the big 4-0.

Before running for school board. 

Before this blog. 

As the enormity of the last decade settled in with me today I had a sudden, overwhelming fear that the stroke of midnight means I am leaving Joe behind. A decade that had started with him and so many hopes and dreams is ending without him. It's not what I had imagined and it sucks.

But, as I thought back over the past ten years I realized that for all of the heartache there has also been incredible joy. It sucks that Joe isn't here with us to enjoy life as it is now, but he is carried with us into this next decade in some special ways - in baseball, in music, in the home we created together, and most importantly in Domani.

The truth is that this past year especially has been a good one.

I read more books than I have in a long time.

I saw some of my favorite bands in concert and even got to a show with my sisters.

I replaced actual marathons with some of the Netflix variety and even managed to peel myself away long enough to do another Spartan race.

I won another kind of race, being elected to our community's school board by only 14 votes.

Domani did his first (& second) Spartan races and just went with me to his first Star Wars movie in the theater.

Domani and I watched Pete Alonso break the rookie single season homerun record from our seats at Citifield.

We perfected our guacamole and experimented with making different foods together.

He started playing Little League and decided he loves rollerblading.

We got to see the Mets play in Chicago, Minneapolis, and Kansas City and visited plenty of museums and other sites.

Before the end of the next decade, Domani will be driving and I will have celebrated my 50th birthday. Both of those things feel overwhelming right now, but if there is one thing I have learned over the last 10 years it's to take each thing one step at a time. So, that's what we will do and we will carry Joe forward with us as we go.

My 2019 "Top Nine"

Wednesday, December 4, 2019

December 5, 2019

The past month has been a whirlwind. It started with my election to the Jamesburg Board of Education on November 5th and continued with a travel schedule for work that has more than tripled my typical days on the road. Now, as the hours creep closer and closer to December 5th, I find myself in a hotel room in Boston doing a lot of remembering. Tomorrow will be eight years since Joe died and even eight years later this week brings up a whole range of emotions. There are still moments of deep sadness for sure, but as I sit here in the city where we spent our honeymoon I realized that what I feel most is grateful.

I am grateful for who he was and who we were as a couple. I am grateful for how our relationship shaped me then and continues to shape me now. And I am grateful that he lives on in so many ways. He's in that first sound of a new Greg Dulli song or the crack of a bat at a Mets game. He's in the nooks and crannies of our home and each moment that I try like hell to model his patience. And he is most definitely in our son Domani and the countless friends and family members who have continued to love us like he did.

As I was waiting at the airport earlier I started reading back on my old CaringBridge blog posts from the days before Joe died. It's been awhile since I've looked back on them, but I'm glad I did.

In their own way, they reminded me of the preciousness of Joe and me - the preciousness of Joe and me which became the beauty of Joe and me and Domani and then the strength of Domani and me and all who loved Joe. I thought it made sense to share those posts here today.

Journal entry by Anne Luck-Deak — Nov 30, 2011
It is late and we are all quite tired in the Deak household. After a long night last night which included a visit from the hospice nurse, we went to Joe's oncologist today. Joe had been scheduled for his next chemo treatment, but given his weakened state it was hard to believe they would do it. That proved correct but on top of that we were told by the doctor covering for Joe's regular oncologist that no further treatments would be possible. A punch in the gut. And she wasn't particularly helpful or sympathetic. Another punch in the gut. While we were there Joe was given oxygen and some fluids. He also had a nice nap while receiving the fluids. Thankfully, after returning home We got a visit from his hospice nurse and later a call from his regular oncologist. His oncologist's heartbreaking conclusion was still the same but it was helpful to have our questions answered and to hear the details about his reasoning. 

The honest truth is that it was very difficult for Joe to travel to Basking Ridge today. His weakened state makes even a walk from the living room to the bedroom a difficult task, let alone walking around to get ready and then out to the car. It would just be too much for him to continue going through the motions of treatments which aren't really having an impact on the cancer. We will receive some additional services from hospice and are still considering any other possible options for Joe. Please pray for wisdom in how to proceed and for peace during this seemingly impossible time. As difficult as today was, it was nice to come home to a freshly cleaned house and some yummy food in the fridge. We have the most amazing support network and I have a suspicion it will only get better. Love to you all!

Journal entry by Anne Luck-Deak — Dec 2, 2011
As difficult as the last few days have been I am happy that now, finally, my husband and I can share a bedroom again. With the delivery of his hospital bed today and a borrowed twin bed for me we are now back to sleeping in the same room. No more living room/bedroom split. It's a simple thing, but something that makes both of us smile.
Given his weakened state, Joe is unable to walk now without assistance and he requires help with his medications and with the overall management of his symptoms. It is becoming quite a team effort with help from a full hospice team and many loving family and friends. It took very little time today to prepare our bedroom for our new sleeping arrangements. Everyone who was here pitched in to help move things, including the hospice social worker.We are feeling very supported.
The highlight of the day for me (aside from TWO yummy giant chocolate chip cookies from Mendoker's) was time spent looking through some photo albums with Joe. We looked back over our trip earlier this year to Cooperstown, NY (Domani's first vacation) and reminisced about our honeymoon in Boston (Duck Boat ride, Megatouch at the local bar, dinner at the table where JFK proposed to Jackie, a tour of Fenway, and the most amazing Boston Cream Pie at the Omni Parker Hotel were all highlights).
While it is frustrating to see Joe's health in decline, I am reminded of just how blessed we are to have had our paths cross again the way that they did. He is one amazing guy and together we make a darn good team.
A special hello to all those who have started following this blog in the last few days. You all have kept me busy approving requests, but with each one I know there is another person (or family) supporting us in thought and prayer. Thank you for being here and joining us through our journey.

Journal entry by Anne Luck-Deak — Dec 4, 2011
Joe had a difficult night last night. His breathing is much more labored and his blood pressure is high. After being up all night and a visit from the hospice nurse this morning, the decision was made to move him to 24-hour nursing care in our home. Star (love the imagery of her name) arrived this morning and will be here until 7pm. She has been helping us to take great care of Joe. With assistance, he just made the move from his hospital bed in our bedroom to his La-Z-Boy in the living room. Our project for the day is to keep him comfortable and surround him with love. As much as possible we will read to him the cards and notes we receive (both IRL and on this blog!) On behalf of our whole family, we thank you for the outpouring of support we have received. It is helping to sustain us through this unimaginable time. Hug your loved ones and smile at a stranger. Today only comes once.

Journal entry by Anne Luck-Deak — Dec 4, 2011
After a day of being with each other and being with Joe, I am here in the bedroom with him and the nurse while my Dad puts Domani to sleep. Joe is resting comfortably, but has been non-responsive since about 3pm. That has certainly not stopped us from reading him emails and posts and sharing our own musings with him. Although it arrived much too quickly, it was a good family day. I just wish it weren't a part of saying goodbye to my best friend. There were tender moments: Domani "brushing" Daddy's hair In the morning and then later in the day grabbing Joe's hand and saying DaDa (along with a few other random syllables.) His kind words to me this morning about my support to him. Visits from some dear family and friends. The smile on his face while I massaged his feet. I am just happy to know that he was able to hear so much love from so many people today. Thank you all. Will do my best to keep you up to date.

Journal entry by Anne Luck-Deak — Dec 5, 2011
Joe passed away peacefully this morning just before 6am. I was there in the room with him and had just laid down to rest on my bed next to his when he took his last breath. He is finally done battling and at peace. Heather Diaforli-Day continues to coordinate assistance for our family including the provision of meals. I will post updates regarding services and other ways you can assist our family in the coming days. Thanks for standing with me, Joe, and Domani and letting us know how very much we are loved.

Sunday, September 15, 2019

Anne Luck-Deak for Jamesburg School Board

One of the things I feared with intensity when Joe was diagnosed with cancer was the possibility of having to send our unborn son to school without his Dad by our side. Those fears started even before we knew that our child was to be a boy and his name was to be Domani. It seemed like a ridiculous place to land, but as I was holding Joe's hand in his hospital room just after his emergency surgery, I remember that fear being what crept in. As he slept, I whispered to him that he couldn't leave me. That he had to be here for our child's birth, for this kid's first birthday, for the first day of kindergarten. I stopped there because at that point we hadn't even heard a diagnosis yet and, if I was being honest, I couldn't see past the next five minutes, let alone the next 5 years. 

We had just found out two days before that I was pregnant. I hadn't even been to an appointment with my midwife yet to confirm it. And, already, I felt it all unraveling. How would I ever be enough for this kid? Our happily every after would not be what I expected and I was worried about how our child (let alone me) would ever make it through.

Joe was there for Domani's birth. He was there for his first birthday. But just two months later, only a few weeks before Christmas, he died. He died in the bedroom of our home where, if you look just out the window, you see the entrance to what is now our son's elementary school. 

When we decided to buy this home in Jamesburg it was the proximity to the school (and to the lovely local businesses in town) that won us over. Now, after being here for 11 years, this place we call home means so much more to the two of us left behind after Joe's passing. It's the neighbors who have been there for us in immeasurable ways. It's the convenient and challenging running routes I have come to know as I trained to run 5ks and then half marathons and then, eventually, the Boston Marathon. It's the education I see my son receiving in that school which 4 years ago seemed so daunting a life stage. 

There have now been 4 first days of school for Domani at the elementary school across the street from where Joe and I decided to plant our roots in 2008. Joe hasn't been physically here for any of them, but he has been here with us in many ways. I have begun to realize that what I feared so desperately in 2010 is not so scary now that Domani and I are doing it. Domani is surrounded by people who are interested in him and provide him with an education that includes learning in Spanish, after care that is both fun and educational, and a whole school community that shows its care daily. He impresses me more and more each day with the ways that he is growing and learning, with his ease of making friends, and with his excitement for everything around him.

I have also found my own place as I've become more and more active in his education. As Domani made friends, so did I, and Jamesburg became more than the place we live, but our community. That doesn't happen everywhere and I am thankful it happened here for Domani and me. 

So, at the beginning of last year, I decided to act on that and I put my name in to serve a one-year term on our local School Board. That year was a defining experience for me. I saw in a clear way the impact that decisions of the Board have on the young people in our schools and our community at large. When my term was over at the end of 2018 and the Board was officially downsized to seven members I remained open to serving again at some point in the future. 

As I attended Board meetings this year and spoke with friends and neighbors, it became clear to me that the time to throw my hat in the ring has come sooner than I thought. I decided to run this year because I feel it is an important time for my voice to be included. As a single mom of a 3rd grader in the district, I know both the importance of a strong education for the children in our community and the stress of making ends meet as a homeowner. 

I am excited to take this next step and know that even though he isn't here physically, Joe is cheering me on.

Saturday, June 22, 2019

Taking Time for Appreciation (and for Mowing the Grass)

Tonight I finally found myself with a couple of free hours at home that happened to coincide with daylight and a lack of rain. It was as if the universe was telling me - MOW THE GRASS. Well, grass is probably a tad generous since in my yard I mostly mow weeds, but that's another story. 

About halfway through I was tired. It was the kind of tired where you just want to collapse wherever you are and not get back up for twelve hours. The kind of tired where all of your muscles feel like they're on fire and every once in awhile you zone out and forget what you are even doing.

But, since I knew that the next time I would likely have the "clear sky-daylight-free time" stars align would be at least a week and a half from now, I pressed on. 

It didn't take long before my mind turned to Joe. At first it was definitely a "dammit why was I left stuck with this task" thought. Then, I thought about how excited he was to have a yard of our own that he could work in. He always took great pride in doing work in and around our home. And then I remembered that last summer. 

Eight years ago now. 

He was a year and a half in to his cancer diagnosis. That meant a year and a half of chemo treatments. An ostomy bag. Slowly accumulating fluid in his lungs.

And yet, I remember him mowing our grass that summer. It wasn't as frequently as I know he would have otherwise and sometimes he had help. But he did it. He did it all without the self-propelled mower I ended up buying myself last year. (Although I do remain convinced that if Joe were still here mowing grass today he would have gotten himself the same setup I did.) And he did it with the pride of home ownership and care for his family pushing him along.

So tonight, as I yanked and pushed the mower up and down the mean slopes of our yard, it hit me.

Here it is seven and a half years after he died and I am realizing a new way to appreciate him.  How is that even possible? But it's what happened. The work of mowing reminded me just how super our Superman really was to us.

I realized it because he's gone and the chore now falls to me. It's not the first time I've mowed the grass so it's a little weird that it took me this long to get it, but I guess the point is that I finally did.

That realization got me thinking about other things I am missing in the people around me. What else is going on right in front of my nose that I'm not fully appreciating?

It took me over two hours to mow the grass so I had a lot of time to think. 

I started talking to myself (hot tip: when you're using a lawn mower, no one can hear you talking to yourself), but once the ideas started flowing they kept coming.

My Dad's humor, generosity, and faith displayed in a hundred different ways even while he has faced health issue after health issue. He makes jokes with the hospital staff, buys books for his grandkids, and listens to God's prodding on issues even when it's difficult.

My Mom's willingness to always find a meaningful way to help out. There are never dirty dishes in my sink when she leaves no matter how many were there when she arrived and my yard would be nothing more than an assortment of dead things if not for her.

The fact that not only can I talk honestly with my sisters about so many pieces of our lives, but that we can also travel together and actually have a great time (even with the kids).

That Erin will talk with me about death and not be weird about it and that she can be counted on to provide the nudge I need to really take a vacation.

That Julia always has an open door, a bottle of wine in the fridge, and a listening ear.

That people in my life like Sara and Heather still remember the tough days with a text or a call or a card even so many years later.

Co-workers who always seem to find a way to push forward even when the deck is stacked.

Friends new and old who step in with support and advice when I'm about to try something new.

Domani, who can lighten my mood in a million ways, whether it's a funny joke, his own laugh, or a conversation about black holes and Trans-Neptunian objects.

I'm glad it took me as long as it did to mow the grass and even happier that I don't have to wait until I do it again to look for things I can appreciate about the people around me.