On a sunny, winter afternoon in February, on a wooden plank laid across two pieces of log, overlooking our valley and as we took a lunch break from working on our home, Dave asked me to be his wife. It wasn’t fancy, the ring wasn’t huge, he didn’t get down on one knee. He grabbed my hand and looking at our valley, he asked me if I would be willing to spend the rest of my life with him. It was that simple.
We had been through so much, and we were still in the battle, but we knew we were meant to be together forever. Even if I wasn’t Dave’s wife and Dave wasn’t my husband, we were so much better together than apart. As we looked over our valley together, I said yes, I would be honored to be his wife.
A Home Complete
We both knew that we wanted a simple ceremony, and we wanted to be married on our property. What better place than on our deck, overlooking the very same valley that started it all? When Dave asked me to be his wife, we were about 8 weeks from being completed with our home, if nothing went wrong. We knew we needed to work even harder than we already were to make sure that we had a final inspection on April 8th, because on April 9th, we were going to unite our futures forever on our deck. No pressure ~ but we accomplished our goal and met our timeline! 🙂
After 10 months of construction, a brain hemorrhage, hundreds of hours of therapy, and blessings beyond measure, we were awarded final occupancy on April 8th, 2016. We moved most of our household items in that day, but didn’t move in our bed. We wanted our first night in our new home as husband and wife.
Never in a lifetime of dreaming did I imagine that I was going to meet a man as hard working and tenacious as Dave. Never did I imagine that I would not only help build, but live in a shipping container home in a valley that brings peace to my soul. Never did I imagine what my future would hold when I said, yes, let’s build a shipping container home. Never, in this lifetime or the next would I change the past 5 years. We have been so blessed and we have grown in ways that would not have been possible if we were still chasing the ‘Jones.’
As we exchanged vows on our deck with our children present as witnesses, little did we know that our story wasn’t over, but really just beginning. That the challenges and trials ahead would be almost as difficult as the ones that we had already overcome in the past 10 months. Dave and I would learn that Joy was our only hope.
Joy is not always present. You have to choose joy in the midst of the trial. Joy is a choice. That is the biggest lesson that Dave & I learned over the last 5 years. When you choose joy, life is not nearly the struggle that it could be. Yes, life is still hard. There are still so many hard things that we have to face every single day. But together, choosing joy, we are better.
4 years later, we are together, in our tiny shipping container home of 406sq ft, looking over our valley, feeling more blessed than we ever thought was possible.
I’ve come to the end of our build story, but our story really just began with that Certificate of Occupancy awarded to us on April 8, 2016. It was only after we began our life in our valley together did we discover the real joy of That Tiny Life Love!
I remember that I had received a message request through Instagram early in 2019 from Rasa, Bryce’s partner the gorgeous soul behind the camera. She had asked if we were interested in being featured on their YouTube channel. To be honest, I had never even heard of Living Big in a Tiny Home. We don’t really follow the tiny house movement; we just live our best life every day in our own tiny home. 🙂
So when Rasa sent that first message and a couple of clips of what the video would look like, I have to be truthful when I say, I didn’t even open the links. 😦 I read her messages, told her I would let her know and then forgot about it all. Life was so busy in the early part of 2019 as we had just come out of a long hard winter and were dealing with some issues with a couple of our kiddos.
Thank Goodness Bryce & Rasa are Persistent
Fast forward 6 months, and Rasa reached out to me again. She said that they had just returned to the states and would love to film our home. At this point, I had still not ever watched or heard of Living Big, but I did take the time to click on her links and watch the video clips. Watching what they produce, it seemed surreal that they were reaching out to us. We had never expected anyone to think our house was as amazing as we thought it was 😉
I responded that yes, we would be interested and to please let us know what they were thinking and their time-frame. I didn’t hear from her again for a couple of weeks and so didn’t think much more of it. Like I said, it had seemed too good to be true, so it probably wasn’t true 😉 Later we learned that they actually film or travel to their next filming destination EVERY SINGLE DAY. No wonder she didn’t have time to respond back – Bryce and Rasa are so very busy sharing people’s homes and stories.
Late August, I received another message from Rasa asking if they could come and film our home the first Saturday in September – just 2 weeks away. Dave and I talked about it and said, sure, why not. Let’s do this! knew that I needed to do some homework and research what their show was about and what to expect. I clicked on one of their videos and then told Dave, this is a BIG deal. Look at these videos and these gorgeous houses that they film all over the world. Oh, my goodness. What have we signed ourselves up for?!?!?!
We Are Just Ordinary People
We live in 2 shipping containers that we love, but it really isn’t anything special. After watching just a few more of their videos, I knew that we needed to make sure our windows were washed and the dead lawn mowed and get our home as ready as possible! We tend to keep our home very tidy, but we do live in the woods, so bugs and leaves and spiders and all the dirty things tend to get everywhere all the time.
Is This Really Going To Happen?
Again, I didn’t hear anything from Rasa after we settled on the filming date in September. Dave and I worked to get our home ready, but because of the ‘radio silence’ weren’t even sure if this was really going to happen. We figured if it didn’t, at least our house was spick and span to go into the long winter ahead. 🙂
Saturday morning arrived and so did Bryce & Rasa – we couldn’t even believe that this was really happening! They had driven from their previous shoot in Colorado just two days before. As soon as they got out of the car, we asked how they were doing, and Bryce said, ‘tired.’ Oh, my mama’s heart went out to these two lovely people that had chosen to drive from Colorado to our little town in Washington State to film our home.
Immediately Bryce started asking us questions and soon discovered that our home was more than just a couple shipping containers stacked like legos that we lived in. We had a story. An amazing story of perseverance, joy, love, and hope.
Bryce and Rasa spent the better part of 2 days filming our home and listening to our story. They cared. It was genuine and you could feel it. After the first day of filming, we asked them if we could take them to dinner. We also offered our son’s room for the night as he was away at his grandmas. Bryce & Rasa ended up using our home as a base camp for the better part of a week as they traveled North & South of our home to film other tiny homes & stories.
During their stay with us we talked and laughed and learned so much about the tiny house movement and cooked and built a friendship. Bryce is a permaculture encyclopedia and Dave learned so much from him in a short amount of time. Rasa is an amazing cook and made us the most delicious dinner right out of our garden.
Behind the Scenes of Living Big
Have you thought about how Bryce and Rasa live to travel and shoot so many tiny homes? They literally spend the majority of their time living out of a rental car. They shoot or travel every day of the week for months on end. They edit in the evenings and throughout the night to make their weekly episode deadlines. They shoot hours and hours of footage on each home they visit and condense it into 16 minutes. They own what they can carry in suitcases, for the most part. They seldom get the opportunity to cook home grown meals and rest in a real bed that isn’t a hotel bed. They truly are angels sent to tell all of our stories…
Our Shoot in a Nutshell
I’ve read so many of the comments on the YouTube episode. So many questions and because not everything can be included in 16 minutes, here are the highlights of what you didn’t see:
We found our property on Craigslist from a private party for cheap. When we purchased it, it was a goat trail along the side of the mountain. Dave & I have done all of the landscaping ourselves, mostly by hand. We have rented a small excavator a couple of times and we had an old backhoe that didn’t have brakes and almost killed Dave 5 times, but mostly, we do things the old fashioned way – one rock or shovel scoop at a time. 🙂
We pay for things as we go to continue building out our property. We both still work the same jobs we have worked for years. Dave has been at his job for 29 years and I am an accountant and have worked for the same company for 9 years. When we want to add a rock wall or a greenhouse, we can because we don’t have a mortgage. Because of Dave’s health, our home and property is our stay-vacation destination and we spend so much time enjoying the gorgeous valley we live in!
We intentionally built with only 2 containers because we wanted TO BE MORTGAGE FREE when we completed our build. We accomplished that. We love our home, but yes, building a home out of Shipping Containers is definitely more expensive than a traditional stick built home of the same size. Live and learn 😉
Dave has always wanted a shop – doesn’t every guy wants one? In 2018 we built him his shop so that he can work on his projects and stay busy and active. He has an enormous crane in there that is his pride and joy and everything he needs to keep his creative juices flowing and his mind as healthy as possible. 🙂 We have recently turned the living space in the back of the shop into an Airbnb when our kiddos aren’t home and to create passive income 🙂
Our shoot was in September, so our seasonal creek behind our home was dry. The ‘Ferris wheel’ looking thing is actually a water wheel that plays a ‘not so sweet’ melody during the rainy months. 😉 It is essentially a large piece of garden art made from a pipe reel, galvanized buckets and an old bicycle. Dave loves to create!
I didn’t intentionally do the majority of the talking. Dave talked lots, especially in the beginning when Bryce and Rasa first arrived, but after a couple of hours he was tired and his words weren’t working as well. You don’t see this because the video is actually edits that cut out his stuttering and loss of words and replace it with me explaining a lot of things. When Dave watched the episode, he just kept saying over and over – I am not the same man I used to be. He sees how much he has lost. It is heartbreaking to see the strong man you love and admire and who is a hero in your world be so vulnerable and weak. I am glad that Rasa & Bryce protected Dave from the ugly comments that would have been made had they left all of Dave’s stuttering and difficulty talking in the episode. A lesson to be kind always, because we don’t know what other people are battling.
Angels in Disguise
God gifted us with angels. Angels that were wanted to share our story. Dave and I told Bryce & Rasa, that while we were so honored that they wanted to film our home, it was our story of love and perseverance, even when all seems impossible that we wanted to share. Our prayer was that if by sharing, we could touch just one person’s life, then it was all worth it.
Bryce uses the word amazing a lot. Honestly, it is Bryce & Rasa who are amazing and the work they do to bring tiny homes and their stories to life, are a true testament to their selflessness. Dave and I feel so blessed to have been able to spend a week with them. We were also able to learn how to support them in their journeys just a bit. As a Patreon supporter, we sponsored Bryce & Rasa for $1 per video or an average of $4 per month. Being able to spend time with them and seeing the sacrifices they make personally so that they can share tiny home stories – let’s just say it isn’t all glamorous living out of a rental car and suitcase. You can learn more about being a Patreon here https://www.patreon.com/livingbig. For those of us that love what they do, please consider sponsoring their work – Dave and I thank you, personally!
Thank you, Bryce & Rasa for your love and friendship. Until we meet again…
We were officially dried in, but still had so many outside projects that we needed to wrap up before we were ready to move inside and start finishing our home.
A shipping container doesn’t need a roof, but I wanted a unique roof to create a dry space over both our deck and our front door. We have a 20’r sitting on top of a 40’r, leaving 20’ of deck space off of our master bedroom. We roofed 10 of that space creating one of our favorite places in the entire house – living space right outside our bedroom door – and the view 🙂
Dave’s friends came and helped us complete the roofing. Our roofing is called Rusteel and is unique in that it rusts almost immediately upon exposure to the elements. Yes, I paid extra for metal that will rust – Dave still questions my sanity at times 😉
Turning a Ginormous Gravel Pile Into Access
In order to meet code, we had to have access to the front of the house that didn’t exceed certain tolerances. The only thing we had infront of our containers at this point was a huge pile of gravel that had been used to park the crane when we placed our shipping containers.
But Dave and our son, Bryce, got to work and upcycled some 4×4’s that had been salvaged from a project on the Canadian border. He reused the brackets, the boards and designed the large pile of gravel into our home’s approach 🙂
As I’d mentioned before, Dave’s OT set up therapy for Dave. The upstairs deck and exterior stairs were a project that Dave meticulously worked through as part of both his cognitive and functional therapy. From laying out the deck boards, screwing them on (a challenge when he couldn’t feel his right hand), cutting and laying the final stair treads, upcycling and designing the outside stairs and access. All of these steps needed to happen to make our shipping container legal and meet building code.
This was a project that would have taken us a couple of weekends before Dave’s ICH. But even working on it 6 days a week for a couple hours a day in the beginning and then longer as he got stronger, it took him almost 6 weeks to finish.
Outdoor Living Space
When Dave had sealed and laid the last board, he was so proud of the deck and stairs – and he should be. I was so proud of him. I had seen him struggle through the processes in a way that tore at my heart, but he preserved. It turned out amazingly gorgeous. The biggest victory was how much he was able to regain his dexterity and skill level during the project. The project may have taken weeks and weeks, but to this day, it is one of the areas of our home we are most proud of!
Dave was finally becoming stable enough that we could start focusing our energies a bit back on our home build. Every single step seemed to take about 4 times as long as it did just weeks ago, but we made a list of the most critical things that needed to get done to get our home weather proof before the winter weather came and focused on those.
And, if winter coming wasn’t enough, Dave had another brain procedure scheduled for mid October. The push was on, but in the middle of all the work, we stopped to have family pictures with our kiddos who had been so helpful during our build. We couldn’t have done it without them 🙂
Family & Friends ~ Our Heros!
We were so blessed to have family and church family step up and help us. It was almost a full time job for me when we were at our property to keep Dave safe. If the family wouldn’t have helped us, we would have ended up with 2 rusted out shipping containers going into spring and not the home that we were able to get dried in before winter came. With our home dried in, our hope was that Dave would be able to continue to work on it as part of his therapy and as he got better and stronger.
Sealing the Crawl Space
We started by finishing up the foundation. As I mentioned in an earlier blog post, the side walls of the container did not touch the concrete foundation. This was an error on our engineers part, but we problem solved solutions and used cedar shims to wedge between the container I-Beam and the foundation wall. By shimming, we were able to displace the massive weight of the containers. Before shimming, the weight of the containers on our foundation were focused in the 4 corners, causing damage to the back of our foundation. Thankfully, we were able to repair that damage before Dave’s bleed and the foundation continued to fail.
After we shimmed all the way around the foundation, we went along and used a really strong caulk called Volcom and placed a large bead that weather could run off of instead of seeping into the crawl space in the foundation. While the process was tedious and time consuming, it has been worth it. We successfully displaced the weight properly and also have a very dry crawl space under our home. Our foundation has not experienced any settling or cracking since we put the fixes in place almost 4 years ago 🙂
Painting Our Rusty Boxes
Initially, Dave and I had planned on painting the containers ourselves. We already had our paint colors chosen and in the early summer, this would have taken us a day at best. But with his bleed, this was another project that now seemed completely overwhelming and daunting. Dave would not be able to help much, which would leave the logistics of getting the job done to me. Again, our church family came to our rescue, and during the work week, while Dave sat in his lawn chair and supervised (like he was the boss 😉 ) a painter that our church provided painted the outside of our containers. This paint protected all of our raw metal from rusting and also prepped the containers to install our shear walls and windows.
Side note: Our original paint color was called Intellectual Gray. We have since repainted our containers a bright, sassy orange that we feel represents our personalities and our home much better 😉
Installing The Shear Walls
Our shear walls, or walls that sealed off the end of the containers were thankfully completed by a carpenter that our church family hired for us. He framed, sheeted, sided and installed the doors on both the upper and lower containers. Without his help, we would never have gotten this portion done before the rains came. The most challenging part of the shear walls was connecting the wood to the metal container. We used pressure treated, but prior to placing the wood against the metal and securing it with lag bolts, we placed a moisture barrier between the metal and wood to prevent condensation transfer that is common in containers.
Installing The Windows
Our hope had been that the carpenter was going to be able to install our 7 windows also. But unfortunately, the shear walls took him longer than we expected and we had to start the process of installing the windows ourselves. We were up against a time frame; in mid October, Dave was scheduled for another Cerebral Angiogram. We needed to have our home dried and secured prior to this procedure, because as always, when they go into the brain, things can change quickly.
Installing the windows was a major process, but thankfully, our kids helped us out alot on the prep work. First, we had to pre-drill the screw holes into the metal frame that Dave had installed earlier in the summer. This was a time consuming and tough job for me and the kids. Because of the force and exertion it took to drill through the metal, Dave couldn’t do it. It put to much pressure on his head. But, Dave still had high expectations on how he wanted the job completed. We pre-drilled screw holes every 6 inches (overkill in my opinion, but he was the boss 😉 ). Once the holes were completed, we wrapped the entire window frame in moisture barrier tape.
And then, slowly, ever so slowly, Dave, myself a couple of our kiddos, installed the ground floor windows one by one. The windows were screwed from the inside to prevent any additional holes that water could seep into from the outside. Once a window was installed and screwed in, we placed cedar trim around the outside of the window to fill any gap between the window itself and the metal frame. We secured the cedar trim with Volcum instead of fasteners to again, preventing any additional holes for water to enter our home.
It took us almost a day a window to install our 7 windows. We learned the process on the ground floor windows, and then prayerfully installed the three 2nd floor windows. This is where Dave’s sudden Houdini personality was both a blessing and a curse. He had zero fear of standing on the very top of our 12 foot ladder, yes, where it says not to stand, unable to feel his right side and installed those windows like the amazing man he is. I stood inside the container leaning out the window holding onto him and assisting with handing him what he needed to get this process over as quickly as possible.
Dave’s Perseverance and Never Give Up Attitude
Dave had both on a level I had never witnessed or experienced up to this point in my life. 8 shorts weeks ago, he had almost died on our property. On October 14th, he, in complete exhaustion from having worked at his new pace for 6 of the last 8 weeks, smiled his new crooked smile with a sense of accomplishment that neither of us had felt up to this point.
Yes, we had successfully sealed our shipping containers so that they could become a home, but we had done in it in spite of all of the obstacles the past 2 months had thrown at us. Together, we knew that we could accomplish anything. What seemed impossible, was no longer impossible. What seemed improbable, had just been school on what Dave & Jaimie, together can do if we put our minds to it.
We were well on our way to making our containers a home!
The ICU is a busy place in the middle of the night. The nurses in and out of the room every 10 minutes, sometimes more often if Dave’s alarm started to go off. There was a constant sound of paging, alarms, and more than once that long night, the sound of someone coding.
I tried to make myself shut my eyes and rest while Dave was resting, but the minute Dave’s alarm, or an alarm in the hall or a code sounded, my eyes flew open to make sure that Dave’s chest was still moving up and down.
At around 2am, I gave up on rest and just sat watching Dave and prayed and prayed and prayed; I begged; I pleaded; I bargained; I negotiated. I would do anything, God. Just please don’t take him from me yet. We aren’t ready. We have so much we still want to do; adventures to take, a home to build, vacations, growing old together and sitting on the deck rocking together. Please God, I will do anything…
And for hours, I repeated this conversation in my head, waiting for the sun to rise and marking off his second huge milestone – living through the night.
Google IS NOT Your Friend For Prognosis
Between the praying and watching Dave sleep, I did the stupidest thing ever – I Googled Intracerebral Hemorrhage. At this point, the doctors hadn’t given us much information or a path forward, or prognosis, or really anything. They were so skeptical and were not expecting a good outcome, and had pretty much stated that, and not much more to this point.
It took me but a minute to find out a whole lot about what ailed Dave – DUMB. There was so much information, and 95% of it was heartbreaking. According to Google, Dave didn’t stand much of a chance either.
Would he wake up? – probably not.
Would he have lost more ability throughout the night? – most definitely, yes.
Would his brain have endured more damage from the hemorrhage? – what was left of the undamaged gray matter.
Would he be better or worse when he woke up? – most definitely worse.
Was he ever going to walk or talk again? – with aids and assistance devices, or even in a wheelchair.
Would he live? – there was less than a 25% chance.
If he lived, what kind of quality of life would he have? – Less than 3% of returning to 90% pre-ICH status.
Never, I repeat, NEVER visit WebMD while your best friend is lying in a bed in ICU and expect any reassuring information. It took me less than an hour to learn my lesson. I put my phone away, and did not ever look again. Going forward, I would let the experts, Dave’s team of neurology surgeons update me on our path forward. I couldn’t stomach finding the information out on my own, because according to Google, there was almost a 0% chance of our life going forward to resemble our life up until this morning.
He Out-Slept The Sun
Dave actually slept pretty well all things considered. He barely responded for his constant monitoring and 3x per hour neurology assessments that were conducted throughout the night. At around 7am, he finally started to rouse into a more wakeful state. The sun had been awake for hours, and for Dave, 7am might as well have been noon for as often as he sleeps in. But considering what his brain and body had endured in the previous 24 hours, he deserved and needed every single minute of that sleep. I was just so thankful to see him waking up.
The minute his eyes opened, he sought me out, making eye contact with me and the look of, ‘This really happened, didn’t it?’ crossed his face and the panic set in almost immediately. I didn’t even know what to say, except that I wasn’t going to leave his side and we were going to be okay. We would fight this together. I squeezed his hand and kissed his dry, cracked lips. 20 hours with nothing but a few ice chips by mouth, really dries a guy lips out.
My Tongue Was Bleeding
From biting it to keep myself from crying. How could I stay strong for him, when I could barely hold myself together? There was a constant prayer in my mind, ‘Please Jesus, keep me strong for him. Please.’
Oh, my sweet boy – I just didn’t have words for the heartbreak I was feeling, not only for myself, but so much heartbreak for my hardworking hero that was now laying ½ paralyzed in a hospital bed. The fear in his eyes, and the panic in which he held my hand with were almost my undoing. Hang in there, sweet man. Don’t give up. We will do this together.
I couldn’t wait for the doctors to make rounds and give us a plan on what going forward looked like. I had so many questions – my first question was going to be what caused this? And second – how do we stop this from ever happening again? All those hours in the middle of the night watching Dave’s quiet breathing gave me lots of time to think and I needed to know why this happened.
I needed to know why and how this happened so that I could do everything in my power to make sure that it never happened to him again. I needed a purpose, a path, a goal – I needed a plan.
A Day Of No Answers
Finally at around 10am, the doctors arrived for rounds. The plan for the day was to take him for a cerebral angiogram and see what was going on in his brain. If there was something there to repair, they would, but it would give them more of a clue as to what happened. As they prepared him for his small surgery, Dave’s anxiety grew. Anytime you go into the brain, there are so many risks, and he was again fearful that he wouldn’t wake up. The surgery was expected to take about 1.5 hours, and I took this time to take a shower and put on clean clothes that my daughters had brought. I am here to tell you, there is nothing that fresh breath and a clean pair of underwear can’t fix. After my shower, I felt much lighter of heart and ready to take on whatever was in front of us.
Finally, they brought Dave back from surgery, and he had to lay completely flat for 6 hours without moving at all. He was already so exhausted from everything going on, that he slept most of the time. About the time that he started to wake up, the surgeon came in to update us on what they had found.
Sitting up for the first time 🙂
Finding JOY in the pain!
They could see nothing because of the size of the blood clot taking up so much of the inside left quadrant of Dave’s brain, which means that they couldn’t tell us much at all. They couldn’t see if there was a malformation in the brain that had caused the bleed, they didn’t see any weekend vessels that could have caused it. There was no explanation for why my boy was laying flat in an ICU, with no feeling on his right side, unable to speak legibly. After the doctors explained this all to us, they said that we would continue to watch and wait for the next 72 hours and keep Dave in the ICU, because they didn’t think the clot was stable and wanted to be prepared in case he started to re-bleed.
I’d wanted answers – why this had happened and how to prevent it from happening again. And the doctors had no answers. They didn’t know why it had happened in the first place, and they didn’t know how to prevent it from happening again. I can’t lie, in that moment, I was angry with God. No answers – just a spontaneous bleed. This wasn’t fair.
Watch and Wait
And so we did what they said to do – we spent the next 3 days in the ICU, watching Dave and waiting for him to re-bleed. Literally, that was what they were waiting for. During that time, they came in to talk with us about what Dave’s aftercare with discharge was going to look like. Did we have a safe place that would accommodate his new limitations for him to go home to. We were so fortunate that while Dave had no feeling on his right side, he was able to stand, bare weight and walk. He had maintained his strength on his right side, but no feeling. Another thing that they couldn’t explain, but we were so thankful for the small victory.
I clearly remember a comment that the Therapist Coordinator said to me on the second day of Dave’s ICU stay – he said, ‘You are going to advocate for Dave’s life, for his therapy, for his recovery, for his quality. If you don’t advocate, his future is grim at best.’
Wow, powerful words, but words that shot straight to my heart. I might not have a reason why this had happened, but I had a goal and focus that I could work towards to help Dave recover the best quality of life that was possible for him and us.
Finally, after 4 long days in the ICU, they discharged us to the stroke floor for 2 more days of observation. It was while on this floor that Dave got terribly sick and they took him in for another emergency CT scan, hoping that he hadn’t dislodged the clot and started to re-bleed. Thankfully, the clot was stable, and his body was just rebelling from all the trauma that it had been put through.
I’ll Never Leave Your Side
Through this entire time, I never left Dave’s side, sleeping in his bed with him at night, holding him. The nurses brought me food, and except for when he was taken aback for a procedure or scan, I was with him around the clock for his entire hospital stay. His nurses loved me because I took care of him, fed him, bathed him, making sure he was as comfortable as possible.
Finally, after 5 long days in the hospital, his neurologist decided that he would be okay to go home, since the sights and sounds of the stroke floor where causing him severe anxiety and making him physically ill. All of a sudden, the reality of the journey that lay before us overtook me and the fear that I wouldn’t be able to give him the quality of care he deserved and needed caused me to pause. And then this still small voice reminded me – I am Dave’s biggest advocate. If I don’t work hard to get him the therapy and help he needs, he won’t have the life he deserves going forward. That small voice was all the reminder I needed that while I felt completely inadequate and ill prepared to become Dave’s primary caregiver, this was the job that God had given me in this season of our lives. I had a goal and a purpose – that my hero would talk, walk and feel again.
We arrived home on a Tuesday afternoon. Dave didn’t even have any clothes to travel in, so one of the nurses found some disposable scrubs for him to escape the joint in 😉 We arrived home and he settled himself into the chair to rest while I started his shower and lay out his clean clothes. Our shower was upstairs, and this was our first attempt at stairs, but thankfully because he still had the strength, we were able to climb the stairs together and get him refreshed and rested. The reality of the monumental task that lay before us became very clear.
Just Call Me General Advocate
Tuesday, while Dave rested, I spent the day on the phone scheduling speech, occupational and physical therapy appointments for Dave. The therapy started on Wednesday, because I believed that if we didn’t get right into therapy, there was a greater chance that Dave’s brain would struggle with regaining what had been lost. And so we started therapy, 3-5 times per week every week for 3 months. I was with him for every single appointment since he couldn’t drive, and pushed him hard during those sessions. I researched home therapy that we could do in addition to the clinic therapies, and Dave spent no less than 8 hours a day working his brain and body.
Getting better was his full time job. Speech was, and still is the most difficult for him. His brain struggles to put words together, to remember words that he has commonly used before his bleed, and still stutters when his is tired or stressed. We read, we played games, we wrote lists, we spent hours and hours working on his speech therapy. We also spent hours and hours stimulating the nerves in the right side of his body with sensation therapy so that he could regain feeling again.
His occupational therapist was amazing and actually used projects at our home as part of Dave’s therapy. When he was strong enough and well enough, laying out our deck, installing with a screw gun the deck boards and stair treads was a huge piece of Dave’s therapy. What once would have taken him for a weekend, took him almost 8 weeks, working 6 days a week at it to complete. Because he couldn’t feel his right hand, he had to watch so carefully everything he was doing. His brain was also struggled with managing and thinking through the next steps of what he needed to do. But he never gave up, even when it was so overwhelming, he persevered, and slowly but surely, he had a huge victory when he completed that project, almost 3 months after his bleed.
A side effect of Dave’s bleed was that it affected the portion of his brain that regulates fear. Situations Dave would have never put himself in prior to his bleed, things he would never of done were all of a sudden common everyday occurrences. For months, it felt like it was my full time job to keep him alive, and not just because of his bleed, but because he became a daredevil. I couldn’t keep him down, and he would badger the kids into driving him to the property when I was at work. This pattern started just a week after his bleed. He wouldn’t rest, but was so restless to get on with his life, with our home build that he would get angry if we tried to keep him from the property. This made me so worried and anxious, but I just had to give him to God, and prayed constantly, God, please keep him alive today. 🙂
A couple of weekends after Dave got home from the hospital, my sister and her husband had come over to help me prime our metal deck railing and roof so that we could get it painted before the rain started and it rusted. It was a slow tedious process, because we were doing it by hand, with paint brushes. This was driving Dave crazy as he looked on, but I didn’t know how else I could accomplish this task. It took us all weekend just to get the railing’s primed, and had planned on painting it next weekend.
Well, on Monday, while I was at work and just 2 week’s after Dave’s bleed, my daughter told me that Dave had asked her to drive him to the property, but she had to go to work so couldn’t stay with him. When I got off of work, I went and checked on him. I pulled up and he was STANDING on the top of a 12 foot ladder painting the railing and deck roof, with a paint sprayer. Not only had he drug out his ginormous air compressor, figured out the tubing, located his spray gun, but he had taken it upon himself to complete in 1 day, what would have taken my sister and I another full weekend. He was so proud of himself that he had gotten it all accomplished. I was so angry at him for doing it. Not that I didn’t appreciate that I wasn’t going to have to, but because he could have easily hurt himself, falling as he could not feel the right side of his body at all still and he was standing on the top of a tall ladder. I messaged my sister immediately and said, ‘Well, deck railing and roof metal are painted, and Dave isn’t dead – so good news, all in all!’ We laugh about it now, but I still remember clearly the panic I felt when I pulled into our driveway and there perched my husband, 12 feet in the air, painting away.
The Day the Seizures Started
Almost 3 weeks from the day of Dave’s initial bleed, while at Occupational Therapy, Dave had his first seizure. It was terrifying, to say the least. Another ambulance ride, another CT scan, so many medications. The trauma to his brain, the ongoing injury was just to much for him and his brain was done. The start of the seizures was actually harder for us both than the initial bleed. Managing them, listening to his body, keeping him calm, trying to keep him from overdoing it. That was the hardest part because he had a goal to finish our home and in his word’s, “I don’t have time to die or seize out. I have a home to build.”
God was and to this day continues to watch over and protect Dave. While his self regulation for dangerous situations has tapered off in the years since his bleed, it is still something that I have to regularly remind him to be watchful of. He is a much better sport about it now, where as before it would make him so angry that I was ‘bossing’ him around. He now knows that I am not and was not trying to boss him around, I was just trying to keep him alive. He depends on me now, more than ever, to gently remind him to be safe, because sometimes, he just forgets.
I am so thankful that my boy lived, that we were able to continue on with our dream of building our home and most importantly, that we get to live every single day so intentionally. Not everyone does that, but really, it is the only way to live!
Dave’s wave and attempt at a smile sustained me during the drive to the larger hospital 40 minutes away. As the life flight helicopter took off and raced my boy south for emergency brain surgery to stop the bleeding in his brain and stabilize him, I stood for a moment on the top of the hospital roof and just asked God for peace. And I felt it, immediately.
By that time, my sister, Shannon, was by my side, holding my hand and said she would drive me to the new hospital as I didn’t have a car. As we drove, I called my children and our elder and asked to be placed on the prayer chain. Dave was being lifted up within the hour by hundreds of people and the peace I felt about the new, unexpected journey that Dave and I were now on, was surreal. I didn’t know how this day was going to end, much less the new path we were on, but I knew that somehow, we were going to be okay.
Defying All Odds
I made it to the hospital in record time and rushed inside to check on his status, expecting him to be in surgery. To my amazement and surprise, they directed me to an emergency room and when I walked in, there, my fighting man sat, in the bed as the doctors and nurses continued to monitor his neurological status and vitals. A doctor introduced himself as head of neurology and said that while Dave was in critical condition, he was already stabilizing and they had not seen any increased signs of distress in the brain since he had arrived. He was not sure why Dave was was awake and not declining, or what the next 30 minutes or even the hour held, but at that moment, they were going to wait on brain surgery and fall into a watch and wait pattern. Thank you, Jesus. It had been a little less than 2 hours since Dave had called me in distress, and now he sat here, amazing the doctors with his status. Dave was not well, but he was alive – another miracle!
The doctor then pulled up the CT scan of Dave’s brain – the one taken in the last 30 minutes, Dave’s second of the day, on the imaging board in Dave’s room and showed us what we were dealing with. I am not going to lie; seeing the size of the blood pool in Dave’s brain was terrifying. Hearing the doctor say that he shouldn’t even be alive, much less awake and coherent, was nothing he could explain. He was hopefully optimistic that Dave would continue to stabilize and that the bleed would not progress beyond it’s current borders. It was currently almost 2” x 2” and laying deep in the left side of his brain.
As I looked down at my best friend, and then back to the image of his brain, tears pooled in my eyes. Dave could still hardly speak, he had no feeling on his right side, his brain had an active bleed, but against all odds, I felt him squeeze my hand with his right one and say, I love you. It was more like a pained whisper and the faintest of squeezes, but he was speaking, attempting to make his right side work, awake and so very alive!
Dave was stationed directly outside the nurse’s station in the Emergency room of the new hospital. There was so much activity in and out of his room as they waited on pins and needles for him to take the turn for the worse that the doctors were all expecting. But, Dave refused to give in to the sleepiness that called his name. He held my hand with his strong left one like it was his lifeline. He sat in that bed and refused to give up – to him, closing his eyes and going to sleep, even though he was so very tired, felt like giving up. He refused to leave me!
After almost 5 hours of monitoring him every 10 minutes, accessing neurological function, another repeat CT scan and so much lab work trying to figure out what was going on and why this had happened, they notified us that they were once again going to be transferring Dave to another hospital – the 3rd one that day. His insurance was Kaiser, and so they wanted to get him to the nearest Kaiser facility to continue monitoring him. Thankfully, this time they were willing to transport him via ambulance and we got to ride together 🙂
Expecting Another Miracle
We arrived at the Kaiser hospital and they admitted him directly to ICU to give him one on one nursing care as his condition was still so unstable and very critical. Within a few minutes of arriving in the ICU, the neurosurgeon arrived and assessed Dave’s current status. Dave had not shown any signs of decline in the past 5 hours but the size of bleed that he had experienced in the location of the brain that it had occurred was very much life threatening.
The doctor gave it to us straight. He didn’t understand why Dave was even conscious, much less coherent. In his experience, these types of bleeds had a very small survival rate. If Dave made it through the night, we would re-access in the morning and do an exploratory brain operation to see if they could identify the source of the bleed. If there was a sudden turn for the worse in the night, they would proceed with the emergency brain surgery, that thankfully had been postponed for more than 8 hours at this point.
Because of the paralysis that Dave was experiencing on his right side, he wasn’t allowed any food or drink. They needed to do a swallow study and have the feeding therapist evaluate him to minimize the chances that he would choke on anything orally. Also, because he may have surgery at any moment, they needed him prepared and ready to go under anesthesia.
It was going to be a long night, but I pulled a chair up right next to my best friend, grabbed his hand and we settled in to watch and wait and pray. Finally, after almost 14 hours since he had first called me, Dave let himself rest. I didn’t sleep at all that night – praying constantly that Dave made it through the night and defied the odds that the doctors were putting on him. ‘Please, God, let Dave live.’ That was my prayer and the miracle I was expecting. I didn’t even care at that point that he ever walked again, I just couldn’t imagine life without him.
New Adventures Ahead
I had no idea what the future held as I sat in that hard hospital chair and held Dave’s hand throughout the night. The home we were building, the future we had envisioned, the dreams we were chasing – that all seemed so distant as I looked around at the multitude of machines monitoring Dave’s every breath and heartbeat. I didn’t know what this new adventure looked like, but I knew that we were going to experience it together…