“But it feels like I’ve opened my eyes again And the colors are golden and bright again There’s a song in my heart, I feel like I belong” – Rachel Platten / Sally Seltmann

So much to say and so much to share… Stay tuned this week for blogs about flying on a plane for the first time in 7 months, attending the wonderful wedding of a beautiful friend, hanging out with her cooler than cool baby, moving to a new home and how well school is going. The last 7 days have been amazing and how I, I don’t usually toot my own horn, am really proud of myself.

– xoxo Victoria

Advertisements

“You always had to be right … when the only voice she hears is telling her she can’t”, – David Allen Berg / Sarah Buxton / Nancy Bryant

A year ago today we officially said goodbye to Duane. We took him out on his yacht and, as HE wanted, I “dumped in the ocean”. In that moment, I never would have imagined I would be where I am now.

A year in and I am happy, I am making it work. Next week I am moving – again. I started school to become a CNA, and am thinking about getting Buddy a friend. I know I need to live my life, the way I want to, prepare for my future and be happy. “Live for today, but prepare for tomorrow … just in case” – Duane. 

We had our differences. I was very aware that there were things he thought I was not capable of, he told me. He told me what I wouldn’t be good at and what I wasn’t good at, he didn’t mince words – but that’s why we loved him, right? He taught me so much but he also made it very clear that I could never do what he could. I could never maintain boats, a house and run a buiness. I could never do it without him. But guess what, I am. 

A few years ago I was having a rough day, I had been in the engine room all day, being told I couldn’t do something, feeling defeated. I had spent hours replacing a pump, cleaning up a diesel spill, putting an engine back together and it wasn’t good enough or fast enough. I wrote about it… A very wise man, I’ll him Greg C. called me and told me that the week before he had been working on the same project and that Duane had been teasing him, telling him that I had taken it apart and that he should be able to put put it back together. Apparently when other people were working on things Duane’s go to was “Vic can do it”. I wish he would have said those things to me. He was very, very hard on me. Always expecting more and better. I would be beat down and crying. BUT it made me who I am. I am self sufficient. I can talk care of myself. (I can even help you if you need me to! hahahahaha). 

At this point I like to think that maybe he was so hard on me because he wanted me to succeed. Maybe he knew I needed the doubt of someone to force me do it. Maybe he was hard on me because he knew I would be alone and would need to be able to take care of myself. Who knows. You can no longer tell me I cant do something, you can no longer doubt me. I will prove you wrong.

– xoxo Victoria

“I believe in what I am, I believe in what I was I believe in losing you, I’ve never been given so much I believe it’s been a year, the worst one I’ve ever lived I believe I’m better now than I have ever been” – Kimberly Perry / Neil Perry / Reid Perry

This slideshow requires JavaScript.

This is the blog I have been dreading writing for months… years actually.

Today marks 1 year without my best friend. 365 days without the laughter, smiles and sarcasm. 8,760 hours of me having to figure it out myself. 525,600 minutes without the support, advice and guidance from the person who always wanted me to succeed and be the best me possible. 31,536,000 seconds without Duane. 

Today my family and I went out on MY boat. My pink boat. The boat I bought myself. Scraped and sanded myself. Painted myself. Worked on the trailer myself. Worked on the engine myself. All because Duane taught me how. I was able to make this happen because of the lessons and instruction he provided me for years. I am comfortable backing down a trailer, unhooking a boat, driving a boat and working on a boat because Duane taught me how. On the lake today, as we drank bloody mary’s and fished I realized what a gift Duane had given me. He gave me the gift of knowledge. The gift of confidence.

Duane once told me a story about something his dad said to him – I’m paraphrasing here …. Duane needed his car fixed, didn’t know how to do it, he was going to take it somewhere and pay someone else to fix it. His dad asked him why he would do that. And Duane responded with it’s his job, that’s what he does. And his dad said is that guy smarter than you? If he can do it so can you. 

Every time I said “I can’t do it” he got so mad at me. “Yes you can, figure it out!” I could be there crying my eyes out, covered in oil and grease and his response was always the same. As frustrated and mad as I was in those moments, that one lesson has helped me survive this year.

I am thankful today. Thankful for all the “quality” time spent together in the garage, late late at night, in the middle of winter, watching and learning and “helping” rebuild motors. Thankful for all the conversations, life lessons and time spent driving cross country (a large portion of that time spent broken down on the side of the road). Thankful for all the amazing people he brought into my life. Thankful for our time together. Thankful for the love I felt, the patience I learned and the person I have become. 

– xoxo Victoria

 

“When your legs don’t work like they used to before And I can’t sweep you off of your feet Will your mouth still remember the taste of my love? Will your eyes still smile from your cheeks?…And, baby, your smile’s forever in my mind and memory I’m thinking ’bout how people fall in love in mysterious ways” – Amy Wadge, Ed Sheeran

1 year ago today I failed Duane. He had chosen NO medical intervention. He was very clear on what he wanted. One of the non life saving things he was adamant about not having was a catheter. Did not want one, I mean really did not want one, would never have consented to one. So I held a urinal for him, even when he was out of it, I would put it there in hopes my timing was right, it usually was. We had had a few issues in the previous few days, a few accidents and it seemed that any time he passed urine he was in pain; flinching and grimacing. We thought he may have an infection, but at this stage there was nothing we could do about it. Our main hospice nurse suggested we put a catheter in for his comfort. I went back and forth, know that was the last thing he wanted, but I also knew he was in pain. I wanted his journey to be as painless as possible and I also wanted to honor is wishes. But at around 11 am on July 7, 2017 I agreed to have one placed. 

Journal Excert…..

7/7/2017

There is a huge misconception about sitting and watching someone die. They don’t just go to sleep, they lay and suffer and it’s brutal and heartbreaking. 

This is not at all what I thought. It is in a way peaceful but at the same time not. It’s horrific and crushing and I feel helpless. 

Life sucks watching someone die.

– xoxo Victoria

“Hospice is a Philosophy of care that values life from the moment it begins to the moment it ends.” – Dame Cicely Saunders

 

Here is part of my personal journal from 1 year ago today….

July 6, 2017 A.M.

We started crisis care yesterday. That means Duane has a morphine pump, 2 sub Q ports (under the skin versus an IV into a vein) that are constantly giving him meds. We can also supplement with additional morphine as needed. I give him another shot into one of the ports every few hours. We now have 24 hour a day nursing care. 

So far both nurses have been great and super informative. 

Duane has been in sooo much pain, he’s been having accidents in the morning and he’s miserable. After meeting with hospice we decided it was best to start crisis care. So we will have it until his pain is managed.  Our normal hospice nurse will come daily while everything is going on. We seem to have the pain managed. He only had a little pain when the medicine went in the first time, probably because it was cold. For the rest of the time he slept. He fell asleep at 10pm and is still asleep now, it’s 8:45am. He didn’t stir all night. 

He seems comfortable. 

We will see what today brings. 

July 6, 2017 P.M.

Sitting next to Duane, he is asleep, completely out of it. It’s sad because I don’t know if he’s out of it or really asleep. He seems comfortable and not in any pain. That’s all I can hope for.

Our main nurse was going through his file today and he said that a year ago when we started hospice here, they asked him what his goal for this process was and he said.. “for my wife to be ok”.

That melted my heart. I just love him. I am so glad he is not suffering. 

– xoxo Victoria

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

Happy Birthday Duane!

This slideshow requires JavaScript.

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

unnamed-1

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

unnamed

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