Joel's Last Days with Us

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."