I love fireworks. So much potential for third degree burns.

4th of July is by far my favorite holiday. Fireworks, Family, Friends and Fun. Bikinis, Boats, Beer and BBQs. No expectations, no pressure. I am so lucky to have experienced some of the most epic 4th of July’s ever! 

This 4th of July I’m sitting on my couch listening to the fireworks and reminiscing about all the wonderful ones I have been apart of. The photos above show the last 3 … ALS 4th of July’s. 

The first one was July 2015. I had officially stopped working and moved onto the boat in San Diego. We were still full of hope and having fun. (Seriously look how tan we were!) We knew what ALS was and we knew we had a timeline but we still didn’t “get it”. We had spent the day fishing and enjoying family and friends and then cruised the bay for one of the most mind blowing firework shows I have ever seen. We drank and laughed and didn’t think about what life had in store for us. Everything stood still that day. I remember thinking, “we are so lucky to have this much love around us”.

The second was July 2016. We were living in Arizona and had driven in to spend the week on the boat with friends; fishing and enjoying the holiday. Life was getting harder and more effort was needed to make things happen. But we were making it happen. We were still living and enjoying life. I remember thinking, “if this is our life for the rest of our lives, this is not a bad life”.

The last two are from July 2017. There was no pretending ALS wasn’t happening. There was no moment when I thought we will get through this. Duane slept most of the day. He was no longer eating and could no longer speak. He could squeeze my hand and “ask” me to lay with him. I put him in the hospital bed that day and he never got up again. The house was full of love and we watched the firework show on tv. I remember thinking, “this suffering has to end, this pain has to stop, it’s not right”.

– xoxo Victoria

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Happy Birthday Duane!

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Happy Birthday Duane. You would have been 46 years old today. We would have been fishing and skiing and slamming beers all with you wearing a speedo and a foam cowboy hat! I love you and miss you everyday!

– xoxo Victoria

“They say ignorance is bliss because once you know about the tumor or the prognosis, you can’t go back. Will you be strong or will you fall apart? It’s hard to predict so don’t worry about it. Enjoy the time you have before the news comes. Yep, ignorance is bliss.” – Grey’s Anatomy

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Four years ago we woke up and knew it was starting….

On June 23, 2014 Duane had shoulder surgery. He had torn his labrum, bicep tendon and rotor cuff on a fire. He was diagnosed with ALS a year before. Due to “politics” he was forced to go back to work… he tore up his shoulder. The exact same doctor who originally told him “you have ALS” told him to have shoulder surgery. WHAT???? Everything about ALS, anesthesia and surgery said this was a bad idea… but we listened to the “expert”. 

He never really used his right arm again. He started losing his balance within weeks and never spoke clearly again. 

We always wondered about it. If he didn’t have the surgery would he have processed so fast? We thought not. 

I took this picture when he woke up from surgery. He posed for it. We were joking with the nurses and making them laugh with our jokes and banter. Little did we know that we may have just made the worst decision possible. 

Please do your own research. Don’t take a doctors word for it. You have to be your own advocate. Even Duane said he shouldn’t have had the surgery. He still had ALS, he still had a death sentence, BUT would he have progressed slower without this trauma? Would we have had a longer life together? Would we have laughed longer? Loved longer? We  think so. 

– xoxo Victoria

“Thing about boats is, you can always sell them if you don’t like them. Can’t sell kids.” ― Lin Pardey

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This is what my driveway looks like… Ohhhh that looks fun you say…. NOPE. Everything is out front because it’s ALL Broken. (The only think not pictured is the Truckster,  because that’s getting fixed somewhere else.) 

On Tuesday we went to ski, it’s June 21 and I haven’t been in the water yet. I just want to ski. That’s it. Simple. I don’t ask for much. Apparently asking for things not to break is too much. 

Tuesday started with me sitting on a wasp. Then the bearing blew on one side, grease everywhere, the breaks smoked – bad and the heater core leaked, flooding the boat. The air conditioner stopped working in the explorer, and I lost the cap to it when I charged it. The day ended with me throwing up after two glasses fo wine because I was too frustrated with the day to remember to drink water. Tuesday was literally so bad I was scared to take my paddle board out because it probably would have snapped in half. hahahahaha

(To add to the MasterCraft chaos … the pontoon needed a starter, now a new bulb, the Jetta was in the shop getting the emission “fix” and they messed something else up while fixing it, the truckster is running but needs some adjusting to make it really run, the explorer has almost 300, 000 miles on it and the air went out. And then all the little random things that break!)

I think this was the first time I literally threw my hands in the air and was really mad at Duane for dying. He taught me so much and I can fix a lot but EVERYTHING is broken in some way. When I calmed down I remembered that something was always broken. Always…. There was a time between us we had 6 boats, 2 jet skis, 5 cars, a motorcycle, 2 dirt bikes, a plane, a trailer, a motorhome and countless random things with motors and moving parts. Something was ALWAYS broken. We were ALWAYS working on things. I would come home and find gas tanks in the middle of the street, a car dash ripped off, a motor pulled apart… I have been stranded on the side of a highway in the middle of nowhere at least a hundred times because something broke.

It’s life. I’m laughing about it now – kinda. I’ll be on the lake today, in the pontoon floating away my troubles. 

– xoxo Victoria

The update…. New starter in the pontoon, bypassed the heater core in the mastercraft, new o2 sensor in the Jetta, air conditioner charged in the explorer…

I LOVE How We Don’t Have To Say I’m Your Favorite Daughter!

 

 

Happy Father’s Day! I am so lucky to have the best dad in the world. I could share hundreds of stories about how much fun I had growing up and all he did for us and the support he constantly showed. I could talk about when I dropped out of college and he came to pick me up and told me “as long as you’re happy, that’s all that matters”.  The love, the childhood we had, the long days spent at swim meets, the road trips (hahahahaha), the family vacations, I appreciate it all … but in the last three years I have learned so much more about what an amazing dad I have. I am also really lucky to have a wonderful father-in-law. 

When Duane was diagnosed with ALS none of us REALLY knew what that meant. We didn’t know what the future held or what we would need to do or how we would need to modify the house. My dad was always there to build something or listen to me cry or talk me through how to fix something over the phone. Lee (my father-in-law) was always there to talk to Duane and tell him to ease up on me and be nice! hahahaha

They are the handiest two people I know – they can do anything! They built ramps so Duane could get in and out of the house, adjusted banisters to allow him to get upstairs for a bit longer, adjusted railings, put together equipment, adjusted equipment and made our life easier. They worked on cars and boats. Their trips to visit us were never a vacation, they were work trips. As much as they did to help us, they also took care of me. When we were living in Arizona I wanted a garden. My dad flew from North Carolina to build it (well to visit and while he was there he built me one). A month later, it was incredibly hot there and my garden was not doing well, Lee came out from Florida and built me a cover for it. 

They came to visit in alternating months. They were never with us at the same time. It was great because they were the only two Duane actually listened to. They were the only ones who could tell Duane that the way he wanted to do something was maybe not the best way to do it and offer a different solution. They were the two he listened to and trusted to build things for us. They would sit with him and discuss plans and then build whatever it was according to what they had discussed, constantly checking in with him to make sure they were “doing it right”. They have the patience of saints. They catered to Duane’s need to still be in control and have a role in what was being done. They listened to me lose my shit when he was being hard me and expecting me to do things that were practically impossible. They taught me new ways to do things so they would still get done but in a way I could actually do it. They were the only two that actually told Duane when he was wrong and didn’t always take his side. They were the only ones that weren’t “afraid” to hurt his feelings and they were the only ones that he couldn’t “manipulate”. Having them there was heaven. 

I am so lucky. I can still call both of them for building, boat and gardening advice. They both text me pictures of their gardens and make me feel totally inadequate with my potted plants pretending to be a garden. They are the best men I know! I hope they both had a wonderful Father’s Day!!!

– xoxo Victoria

“Don’t you go dying on me!” – Dumb and Dumber

Buddy threw up tonight, more than once. I am terrified he’s going to die. He can’t die. He’s my best friend. What would I do without him? He’s sitting in his bed staring at me like I’m crazy and I’m sitting here googling every possible way a dog can die and seeing if throwing up is a “sign”! 

HAHAHAHAHAHA! I’m nuts. He’s not going to die. He probably just ate a mushroom from the yard or a bug or he’s hot or he simply just had a stomachache. 

I wonder if being this paranoid about death has to do with being a widow… I’m sure it does. I literally don’t know how I would handle another person dying. The fact of the matter is that people and animals die, we’re all going to.

We all need to remember life is short, have fun, love fiercely and be happy. 

– xoxo Victoria

“Being on a boat that’s moving through the water, it’s so clear. Everything falls into place in terms of what’s important and what’s not.” – James Taylor

I had planned to post this yesterday, but for once I fell asleep at a decent time…

June 13, 2017 was the last time we were able to get Duane on his boat. We spent three days getting the boat “ready for a trip through the canal”, a trip I knew we would never take. Caring for Duane was now full time. I was no longer able to work on the boat alone and care for him. Thankfully his brother was in town and was able to help out and take “orders” from him. Between the three of us we were able to get a lot of small jobs done. We even took him for a bay cruise at the end of the day. The turbos worked at the engines synced. he couldn’t have been happier. 

– xoxo Victoria

 

“Trust is defined as choosing to risk making something you value vulnerable to another person’s actions.” – Charles Feltman

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(^ Me after realizing what trust really is!)

I have an amazing counselor here in North Carolina. I wasn’t necessarily looking for one, but I was referred to this woman by hospice. After a few “lose my shit days” I decided that maybe I needed to go see someone, actually my Dad suggested I go see someone. I mean seriously, I spent two years caring for someone as they died a horrible death, I lost my best friend/ husband, I lost the majority of my friends, my job, my home and life. I sold almost everything and moved across the country to live with and be close to my family who I haven’t lived close to in years. I absolutely needed someone to talk to. HAHAHAHA!!!

Sometimes I see her every week and sometimes every three weeks. I had an appointment on Monday and was crying before I even sat down. I had diarrhea of the mouth. I couldn’t stop. Then she said (not word for word…), “You come in here and seem like you have everything together, you have a plan and you are upbeat and act fine, but inside you aren’t, you haven’t set boundaries with people and now you are scared to. You have an issue with trust.” (Me – Duh) Then she went on to explain trust to me and all the components of it… and suddenly everything made sense. It’s about self-trust and trusting others.

She introduced me to the acronym BRAVING. (I did more research when I got home and posted a 9 minute link below the covers the subject in more depth – it is very interesting.) BRAVING stands for:

B – Boundaries – The limits we personally set in all of our relationships that allow and help us to protect ourselves.

R – Reliability – Doing what you say you are going to do, over and over again. 

A – Accountability – Taking ownership for your actions and words. Saying sorry and meaning it.

V – Vault – Keeping people’s secrets, be a vault, share only your own stories. No drama. Expect the same from others.

I – Integrity – Practice what you preach, do as you say you’re are going to do. “Choosing courage over comfort” – Brene Brown

N – Non-Judgement – Being able to tell others what you need without fear of being judged, and extending this to others.  

G – Generosity – Interpreting other peoples words and actions in the most generous way possible. 

WOW!!! When you break down the topic of trust it is way more complicated then it seems. It isn’t a surface level topic or feeling. I now understand why it is so hard to trust someone once they have broken your trust and when someone disappoints you why it is so hard not to forgive, but to move forward in the same manner. 

Knowing this definition of trust would have saved me so much heartache over the last few years. Sitting there in that freshly painted room, crying my eyes out, I realized I made some decisions over the last three years that were not completely made out of love or trust but were almost expected because I never set boundaries and didn’t hold people accountable for their actions or words. I forgive easily, and then never establish my boundaries, opening myself up for the cycle to repeat itself. I cannot go back and change the past but moving forward I can start establishing MY boundaries. I can start expecting people to do as they say they will and start holding people accountable for their actions. I can start making the decisions about who I allow in. Wish me luck!

– xoxo Victoria

“I’ll remember you And all the times we used to Sit right here on the edge of this pier Watch the sunset disappear And drink a beer,” – Jim Beavers / Chris Stapleton

I don’t usually sit here stressing out about an upcoming date. Last month the 8th came and went. This month is different. For the last few days I’ve been dreading tomorrow. I had a rough Monday and some sleepless nights. I have had a headache and woke up with a fever blister. I’ve felt out of sorts and been super emotional.

Tomorrow is 11 months, so close to a year.

Starting tomorrow we start what I am fearing will be my hardest month. There are so many triggers and dates. It’s the 11 month mark, Duane’s 46th birthday is the 29th, July 1 is the day we said goodbye to Gracie’s, the 2nd is when my Dad found out he had cancer (he’s fine now), 4th of July – our favorite holiday and then the 8th of July marks 1 year. 1 year without my best friend. 

I can’t believe it’s been 11 months. The time has dragged on and sped by. The days have been full of crying and laughter. I’ve made new friends and reconnected with old ones. I’ve dug deep to remember the skills he taught me, I’ve relied on people I didn’t know to teach me new ones. I’ve found a place I love. I have learned that most people truly do want to help, as long as I ask for it. Buddy has started acting like a dog again, protective but happy and playing again. I have so many people cheering me on and loving me. Life is good. 

I don’t know what I was or am expecting to feel or what I am “supposed” to feel. There is no guide book for grief or widowhood. There are no rules and there is no normal. I am taking a deep breath and realizing it’s ok to cry, it’s ok to be mad. I wish it hadn’t taken me 11 months to realize I can’t fake strong forever. 

I have so many amazing opportunities on the horizon and know great things are happening around me. 

– xoxo Victoria

“The next time you see a widow or widower try to pick themselves off, dust themselves off and ‘get back out there’. You have 2 choices. You can either sit down and shut up. Or, You can give them a standing ovation. For their heart. For their courage. For their bravery. Those are your two options.” – John Polo

HAHAHAHAHAHAHA!!!  I have not stopped laughing since this song popped up on my iTunes yesterday, like usual, it was perfect timing. I was talking to a newly widowed friend about dating and how you know when the time is right or not right … blah, blah, blah. I don’t know how I became the person to ask (probably because I respond with songs like this, funny quotes and GIFs)! I am super funny! 

I told them it’s a personal choice. Who knows. I certainly don’t. It’s different for everyone and sometimes one week it is right and the next week it isn’t. Grief and young widowhood is a really weird thing. There is no guide book. People DO NOT LIKE it when young people become widowed. They don’t know how to act, respond or even be normal around us. They act as if they are offended and personally affected by it. Like it ruined their world. Divorce, single parenting and plain old hooking are more accepted and acknowledged than young widowhood.

It’s weird. But what are you gonna do?…

I’m gonna wait for my iTunes to play perfectly timed songs and laugh for two days about them.

I am going to make people feel super awkward for asking really personal questions about my life. 

I am going to laugh at women when they complain that their husband didn’t – mow the lawn, take the trash out, drink too much beer or spends too much time tinkering with things. 

I am going to play the widow card whenever I feel like it will help. (ex…getting pulled over, renting a house, buying tools, burning stuff in your back yard, having to do things I don’t want to do, car stuff, boat stuff…)

I am going to laugh at men when they complain their wife didn’t – do the laundry, cook dinner, went shopping again or nags him too much. 

I am going to … eat what I want when I want, clean when I want, do yard work when I want, shop when I want, do housework when I want, get as many dogs as I want, shower when I want, drink as much as I want, stay out as late as I want, sleep as long as I want, watch what I want and laugh at all the people who feel awkward around me and try to make them feel more awkward and uncomfortable because honestly it’s kinda funny!

– xoxo Victoria 

P.S. The best part of this song is the word “BONE” – Duane’s FAVORITE word! hahahahaha