As I begin to write this, it's 3 weeks after our last conversation (I've been holding onto this blog for over a month). You see, Joel had been planning this surgery for months. In fact, it got rescheduled 2 times. Yep, this was the 3rd time we had tried to get this thing done. "I am an exceptional wife." I tell myself. It's one of my dreams and goals for my everyday life and fighting for his best, whatever he wanted, that is what defined exceptional for me. Despite the setbacks, my husband wanted this surgery, more so than any other. This surgery would correct his double vision and allow him to see more clearly for the first time in 9 years. He not only used a computer to speak for him, since he was non-verbal, he used it for communicating with his family and friends, his Facebook followers, to control the TV and to cut up with our son. Despite his vision difficulties, which I'm sure were annoying, he never complained. But something was different in my husband.
You see, for the first time in 9 years, since the accident, my husband wanted a greater life. He was believing for greater things. He had a hunger to be the best version of himself. Anyone who has been watching his timeline on Facebook has witnessed a change since he became a dad. When our first son came home, things started to shift. Joel wasn't just living to live anymore, to merely survive. It wasn't just me and him... and all the animals. It was a family we were building together. Joel went into what I believe was his first real depression, at least from what I have witnessed. Despite not being able to speak, eat (for 5.5 years), or walk, hold my hand by grabbing it himself, or hug me, my husband was one of the happiest people you would ever meet. That's just who he was. He had come to live with his life as it was after the accident. And he seemed content. Never mad at God. Just Joel. I thought he was just resilient. I thought it's who he was meant to be. Happy-go-lucky. I came to find out that's not so true. While he was content, he had pushed all those losses under a rug. He had put them away to deal with another time. And he didn't even know he was doing it.
I pre-planned every trip out of the house, after his parents used to before me. We knew what obstacles we would encounter if there weren't appropriate ADA modifications made to suit wheelchairs. Joel was a tall 6'2", so even standard ADA modifications and guidelines were often troublesome to our daily life. So, I made the best life I could here, at home. We rarely left. But we did- we went to the beach, out to eat, to the movies, site seeing, and to therapy a ton. I made our house a home that he would LOVE. I remember the first time he came into the living room after I had spent months of planning and designing. He said it looked like a magazine, and it was the first time my husband really got to see my work (as a designer). I will never forget that and how proud I made him. Little by little, with tons and tons of help, our home became our sanctuary. It became Joel's place of rest and revitalization. When monthly dues to therapy were too much, he saved up by painting and bought a bike. We were able to get a standing frame through insurance, and he was doing all sorts of range of motion therapy with Kenzie and working out several times a week from home.
Despite his ability and go-getter attitude, depression crept in like a thief in the night. There was a point at which our first adoption took a scary turn (with our first son). Joel was sick at his stomach. He was scared for me. Don't worry, it all turned out ok, but my husband was burdened that he couldn't be there for me physically no matter how hard he tried. He was saddened that emotionally, something was changing in him. After we met Freddie, I thought things would lighten up. They didn't. In fact, I'm convinced that Freddie never saw the Joel prior to depression, until maybe these last few weeks before he passed.
This was different though. As we went out to dinner with my sister and brother-in-law at the beach, nothing was set up for Joel in a restaurant (unlike at home where he was comfortable and he could multitask- eat, use his computer to talk to guests, change the channel and have another conversation on fb with a friend). His chair was turned so he could eat, but he couldn't even hear the conversation we were having. His food would be cold before he was done eating (because at home I had tupperware with a lid and microwave to warm it at just the right time). I'm doing you a disservice here if I make our life look picture perfect on instagram and our blog. In reality life has been tough for us. However, it was our normal. And we had made the best of it.
Then we bring a 13 year old (now 14) into this life and we don't try to hide anything. But we also don't want him to miss out on all that life has to offer either. Joel began to unravel. We would constantly butt heads. We wouldn't argue or fight. We would just be at war against this ugly beast he never dealt with in his loss of independence. He lost so so much. But little did we both know, he really hadn't processed it. He hadn't dealt with the loss. He hadn't come to terms with what he was not capable of doing. He just accepted, for a temporary time, what he was able to do and ignored the rest.
As time passed, he would have rough days and great days. There were days he wouldn't feel like getting out of bed. Days he would beg me for a max dosage of vitamin B energy pills. And it still wasn't enough. He would have me put him on the bike despite him feeling like poop and be drained. But he pressed on.
We began talking about depression openly with friends and family and with Freddie. I would explain to Freddie what life was like before the accident for Joel. What all he had lost, and why it was hurting him that he couldn't do everything he wanted to with Freddie. I'm not sure he really grasps it, still, because he didn't know anything except what was happening in the present, he didn't know any other version of Joel. But we still talked about it. You see, Joel missed all the times Freddie and I would be doing something alone, the car talks where Joel couldn't hear us in the front, that Freddie would sit and talk and ask question after question about Joel and wonder if he would like something or how he could include Joel. Freddie never lacked anything in a dad when he got Joel. Because, he's never had it to lose. But Joel wanted so badly to be a father who could do all the things. He wanted to be a husband that could provide for his wife and family. But, these were new things. These were hard for him. These were the things that would keep him up at night. These were different than the 9 years prior.
Joel's depression led him to hunger for more. He wanted to read/listen to more uplifting podcasts, sermons, books and worship songs. He had never wanted something so bad. So he would ask me to download things for him to soak in instead of tv shows. He read books by our Pastor Steven Furtick and John Eldredge and would ask for another one specifically as soon as he finished the one he was on. I saw my husband long to know God in a way he never had. I also saw him praying and worshipping in the back of the car on the way to doctor appointments or just across town. I seen this burden to want to be a good father turn into a godly desire to know God as our good, good Father.
The Sunday before Joel passed the sermon was about joy.
Here are some more lines from it:
"You have to develop your joy, not discover it."
"The pressure to feel pleasure is why we are so miserable."
"Joy is not the absence of sadness. It's not the event or the feeling, but the outcome!"
"Joy is a point of view."
"He is not surprised by the pain. Joy is a focus before it's a feeling."
"What is my priority? That is what controls my joy."
"The best way to get more joy, is keep my eyes before me. Stop comparison. Joy is destroyed by looking around."
"Joy is a decision to focus on what is before me."
"I cannot enjoy what I have looking around."
"Comparison is the death of joy."
"It's not about possession, but position."
"He endured the cross because of the joy set before Him."
"You cannot choose your joy, you can only choose your priorities- ultimately they decide your joy."
And the last one, "Don't endure what God has given you to enjoy."
As I looked over at my husband, I saw him typing out those words. We then had a conversation about what that meant in our life. He said, "What does he mean, when he says, "Don't endure?" and then he answered himself, "Oh like tolerate?" I said, "Yeah. Like put up with." That then turned into a conversation with Freddie about why this Sunday, the first Sunday in 29 years of my husband's life he was taking notes for the first time during church. He told Freddie it helped him remember what God was speaking to him. He wrote those notes in a Facebook message that I now have and can cling to in these days without him.
That Sunday, my husband wrote the words of worship songs down. He explained in his notes "This new song describes how I felt in my depression." The song is called It is So by Elevation Worship (if it were recorded already, I'd put it here for you).
He had a conversation just a few days before with Kenzie about how he wasn't depressed anymore (I came to know this after his passing). His spirt was lightened. He was easy going. Laughing at things that would normally irritate him in his depression. He was happy. I think he had an inkling.
Months before this surgery, I told Joel I didn't feel comfortable with this surgery. I knew that his eyes were the only way he communicated with me. That without them, I would have to be on high alert and it scared me that I wouldn't have the ability to communicate with him while he recovered. I had that conversation with him and he persisted. I didn't argue. I let him chase this desire to have his sight. Who was I to argue that he didn't need it? I couldn't imagine the struggles he faced on the daily. And I wasn't going to stand in his way.
My sister also had a conversation with Joel about how he was anxious to get this surgery done, but he would explain more to her after that church service. Those words never were exchanged, but I have a feeling that whatever those words may have been would give us even more confirmation that Joel knew he was going to be healed. He confided in her daily about his depression, when he didn't want to put more weight on me, and she was an integral part of his healing process.
He had been striving for recovery like never before. He wanted to be his best for us. In October we were given the chance at our first research program (it wasn't the right fit), and he was excited about new things. He wanted to move and grow. He wanted to help me fulfill my dreams to own a bed and breakfast and as I sat and wrote out a 50 page business plan to take over a beautiful farm in Kentucky, (which also wasn't the right fit for us) he had a "breakthrough" (his own words). He wanted to find out why he couldn't speak, because no one had been able to help him. His vocal chords were in tact and moving, but no one could explain why he couldn't speak. And those eyes, he wanted to see, clearly, one image.
My last conversation with Joel will be one I remember forever. He was having oatmeal 1 day after his surgery, in the evening. He had a hard time eating. He was woozy on pain meds, still having a swollen tongue from some medication, and he had been sleeping all day long. He spit up a bit, nothing major. He said, "Out with the old, in with the new." Funny though because this was a man who couldn't hold open his eyes, was not exactly presently in this world, as he was feeling a little less pain from the meds and he wanted to spell ALL THAT basically using his eyebrows moving up and down for me! If you know how we communicate without a computer multiply that by 20 and realize how difficult this was for me to get the letters just so as he couldn't completely open his eyes.
Those were his last words to me. He faded off into a deep sleep. He wasn't present at this time. But I counted it as recovery. I think now he was leaving us then. I had seen this before, so it was nothing alarming. He had tried to fast for 5 days after his g-tube removal to speed his recovery process up for the site to close and reduce stomach acid over Thanksgiving a year before. He was like this then. He said he started to come-to when he said he heard God say, "Wake up boy!"
My husband's near-death experiences outnumber most. He died at the scene of the accident 9 years ago when he was ejected 40 yards from a moving vehicle that collided with telephone pole. He was in a coma for some time and he remembers being there at the gates of heaven but knowing it wasn't time for him yet.
I put his breathing machine on and let him drift off to sleep. I'm not a doctor and I'm not God, but I think that this time for Joel was different. I believe when Joel got close enough to that place again... to heaven, he knew God like never before. I think Joel chose to be healed over coming back here. I had a conversation with Joel several months ago and asked him if he, himself had ever asked God to be healed. I know countless people who have prayed on his behalf and I know he wanted to be better. But he confessed he had never asked for God to heal him. I think Joel had been praying to be healed.
I believe when he heard the King, he had no desire to come back here to this body. I had tried to take his blood pressure, but got an error 3 times. I thought there was something wrong with my cuff. So, Kenzie was bringing hers to check it by hand and on her way to us with some Pedialyte to get some nutrients in his body. You see while Kenzie was on her way, Joel's breaths, I noticed were further apart. I kept calling to him. I wasn't panicking. I called 911. They were here within 3 minutes or less. Joel stopped breathing, he had a heart attack. 3 times his heart stopped on Thursday morning before he got to the hospital. At that time, everything was moving in slow motion. They said a whole bunch of things that are blur. Joel had never had issues with his heart, in fact it was the very thing that kept beating and he was breathing when they tried to take his organs for donation 9 years prior. This time, his heart was its weakest. His kidneys and liver had also taken a hit with this heart attack. He had blood clots to his legs and at least one of his lungs. He had bleeding on the brain and his brain showed no function. 3 specialists confirmed that Joel was "gone" by early Friday afternoon. When organ donation came to take him off the machines his body stopped functioning in the wee hours of Saturday morning.
None of Joel's organs, nor his tissue was able to be donated. Some may question why. I have felt peace. I have felt the words, "It is finished." I felt like my husband was given a second chance at life. He used those organs himself. He gave us his everything and his all. But when he got to those gates, he knew that his body was frail and I don't blame him one bit for being made whole and new.
"In one touch, I am made whole"- It is so by Elevation Worship
I, myself, have watched other people lose someone they love. I have thought to myself, "How can they survive that? I cannot imagine being in their shoes." I don't know what it's like to lose someone who hasn't struggled with life. In fact, I can't say that any two stories are alike. I cannot fathom losing my son or my sister or my mom. None of us can, but somehow, I rest in the peace I find in knowing that my husband is fully healed. He is made whole. He is no longer suffering from the constraints of a bed, a wheelchair, being non-verbal or paralyzed, unable to eat what he wants, shoot hoops or yell when his team scores. I know that my husband is much better. I rest in that I will see him again, one day. His work here is done, but his story is not. My work is just beginning.
I spent 24/7 with the most incredibly humble man I've ever known the past 5 years and 4 months. I never grew tired of him. Nor he of me. We might disagree, but we never fought or argued. He took up for me, even against his own family at times. And I labored and advocated for him, day in and day out. Not because I had to, but because I loved him and that's just what you do. That is love. But I often told him I didn't know how he did what he did. He rarely complained. Rarely had bad days. Rarely hurt. Rarely grew angry. But in those last days, he defeated depression. I'm not sure if he would still be battling it here on earth if he was here, but I know for a fact he went to be with Jesus at a time he was most desperate for Him, a time when he longed to see and run those streets of gold, and wanted to know his Father like never before.
My question for your today is one I've often pondered, "Are you closer to God now than ever before?" "Do you long for heaven because you long to know God?" I can answer those questions for Joel. I know there was never a point in his life he was ever closer to God.
A few weeks before Joel passed we stayed up one night just for pillow talk. He told me he had been thinking about going to school for journalism so he could become a writer. Now... I feel a few of you who were around in the early days after Joel's accident and you're laughing because everyone wanted Joel to write a book years ago. Joel ignored those pushes. He never wanted to do what anyone else pushed on him. He wanted to do it at his own pace. I, too, had thought about writing our story and his and started years ago writing and thought maybe I'd finish it in our 5th year of marriage, because really, who is going to listen to a newlywed couple about love? Well... remember we have been married 5 years (palm to head). I hear all of you now!
So, long story short, Joel didn't think he was qualified to write. I told him that I didn't agree. He had already began writing the things on his heart since becoming a dad. He would (in my opinion- annoyingly) tag 72 people who I thought were random in a post he created on timeline. I asked him why he did that and he confirmed that he wanted every single person to know they were important and thought of... so there ya go, perhaps he had a message for you. Perhaps he was praying for you and thinking about you. So if you're tagged, I promise it's not spam, that's just how big of a heart Joel had, but you already know that if you were lucky enough to get tagged!
Sorry... I got sidetracked. I told him he had JPF as an outlet and a blogging platform. It was his and his business. It is our family in a nutshell. He didn't need a degree. I would happily help him pursue that venture if he wanted, but when he spoke to the world, when he painted, when he was on camera, y'all I couldn't pay people not to watch. Joel had a way with people. His inability to speak, spoke volumes. His inability to paint by normal standards is what made people stop and watch, to donate to see him paint for his family, and it would be the very reason people WOULD read whatever he wrote.
I'm so proud that I didn't only know Joel the boy and crazy wild teenager. I'm proud to know the man that he became the last 5 years of our marriage. I'm proud of the husband and father he was in this time. A father is something he wanted. And his life turned out exactly as he wanted. Some people may have known Joel for a season, a time, and I figure I got the best 5 years of his life. I didn't just get to get the ice cream, I got the sprinkles, whipped cream and strawberries on top. I'm so glad that I got to know Joel. I'm so glad I spent 24/7 with my best friend. I'm so honored that he chose me time and time again. And I hope I too, make him proud.
In the pursuit of unfailing love,
PS Joel's paintings will be up in our market shortly. Joel also made a list of shirts he wanted me to make and today is the launch day for these. He had asked me to make them in the holiday season but I told him after his surgery, when we opened shop again, I would create them for him. What better day to open business back up, launch our new site, and his new line that TODAY!!!
Shop Joel's Shirt Line
Here are some of Joel's words the last few months that I think you'll gain some wisdom and hope from hearing today.