On February 7, we returned home from a week’s stay at the hospital. By February 15, I was feeling fatigued and overwhelmed by the full-time responsibility for the kids and everything at home.

But here’s the thing…

I wasn’t fully aware of my fatigue and need for a break until the possibility of a break was brought to my attention.

That afternoon of the 15th, I spoke with my mom on the phone. She told me that she’d be willing to come and watch the kids for a day if I ever needed a break during this journey through eye cancer. I said “Yeah. Okay. I’ll let you know.” When I got off the phone, I thought about it more and realized I should have just said yes on the spot. So I texted her and told her yes. Please come. A day away will be great.

We agreed on the 19th. But my dad has a rare lung disease, never does great in the winter, and has been very sick with the flu the past couple of weeks. My mom needed to stay home to be with my dad until his new meds got into his system. So we moved my day away to the 20th.

I’m just going to say this…because it’s true. When you’re a mom and have three kids (or for that matter ANY number of kids) it can be hard to take care of yourself.

I needed a break, time away from the kids and all the responsibility. In this case, my husband Seth was out of commission because of his eye cancer. It was not an option for him to give me the break I needed. Most of the people we know have kids of their own to care for, and they work all week. While I’d had a couple offers to watch our kids, the truth was, I needed a big block of time away. I needed a whole day away. And the weekend wasn’t an option because the kids had basketball and volleyball. It was just too much to ask of a neighbor or really anyone else.

My mom had been helping my sister get re-organized at her house, and my niece and nephew had been really sick, too. Add to that, my dad was not feeling well at all. To be completely honest, asking my mom to watch my kids so I could simply “get away” for the day felt very selfish. My dad and sister need help more. Then there’s this vague gnawing away, this ugly feeling that I’m adding to my mom’s burden to care for everyone who seems to need her. And she never has or takes time for HERSELF. I don’t want to be an added burden. I want to provide relief. Or at least, I just want to be benign.

But I needed relief. Yes, I needed relief.

So my mom came the night of the 19th and stayed at our house for nearly 24 hours.

I went to my first writing group.

I crossed paths with the mama of the very first girl with down syndrome I saw for speech-language therapy back in 2000. We hugged big and caught up for a few minutes.

I worked out, climbing the stairs one after another.

Up. Up. Up.

Up. Up. Up.

Up. Up. Up.

I sought out David, the man with down syndrome we greet and high five on our way out of the gym everyday. Earlier in the week, he’d pointed out a pin on his hat that said his birthday was Friday the 20th. So I brought him the picture Maisie and my mom colored in honor of his special day.

I went to Walgreens and printed pictures from the day I met our sponsored child, Meranyelis, in the Dominican Republic. Because of the eye cancer, I was LONG overdue on mailing the pictures, and I didn’t want to break my promise to Meranyelis to send them as soon as I could. When all those pictures popped up on the screen, I sensed the holiness of the day all over again.

I picked up seven pictures I’d ordered from the day I met Charles last year in Haiti. Our sponsorship became official mid-December and I’ve sent a letter, but for multiple reasons, I hadn’t had a chance to print and send pictures to him yet.

I wrote two cards, labeled the back of each picture with child name and number and sponsor name and number, and stuffed them in an envelope to Compassion International. Yes, I thought. This is worth the day away.

I ate lunch by myself. Quietly. With no interruption. With nobody sharing or digging in my food.

I played on Twitter. Read some blog posts. Connected with a few of my favorite writers and fellow bloggers.

I went to the fabric store to pick up some white felt and elastic so I could make the Santa beard my oldest daughter was worrying about for choir the night prior.

I picked up a new box of eye patches and vitamins for my husband.

And I went to a movie of my choosing. Birdman. Just the way I like it. Artsy, a little edgy, well-crafted and deep.

Before I headed home, I stopped at a party store and picked up a birthday card for the birthday party my son was heading to in less than an hour.

On the way home, they began calling me. My mom first, then my husband. Where are you? When will you be here? Cooper needs to get to the birthday party. We need the card and the gift card. And you need to get home in time for dinner to be delivered. When are you coming?

Mom had offered to watch the kids for the day. And I needed a break, so I took her up on it.

It was worth it, so worth it. I was, and still am, incredibly grateful for my mom’s offer and presence those 24 hours.

But my day away was coming to an end.

I opened the door to a happier place than I’d imagined in my mind on the car ride home. Everyone was fairly settled. Sure, they needed the card and gift card. Sure, he needed to get to his birthday party. Sure, my mom needed to get back home to my dad. And sure, dinner was going to be delivered in 35 minutes. Sure, things were fairly well.

But I was still needed. Back. Here in this place I called home.

I was empty. I was filled.

So goes the emptying and filling.

Love your neighbor as yourself.

 

 

 

The world has rewarded my boxed in living.

Be safe.

Be good.

Do what’s right.

Be as perfect as you can be.

This life, it works. But there’s more. Much more.

The kingdom’s been calling. God has better for me and this life of mine.

His desires?

Repentance. Forgiveness. Healing.

Holiness. Righteousness. Humility.

Grace. Abundance. On earth as it is in heaven.

Trust. Faith.

He calls me, beckons me to chart new territory, swim deeper waters, tread by the bounty of His grace.

I wrote this post on June 10, 2014. It sat, unpublished, in my drafts folder until today, February 20, 2015. I’ve chosen to publish this post in honor of a writer friend who’s been doubting her words. She’s not sure they’re good enough. I relate. All too often, I’m convinced that my words are too much for people to handle. This post is short, for sure. But the words hold great meaning and are worthy of sharing. NO changes were made to the original post. It’s been sitting in my drafts folder for eight months…until today. Our words are enough, friend.

 

 

 

When we decided to share our journey through eye cancer on my blog, one of the promises I made to myself is that I would not compromise the integrity and tone of the blog for the sake of a factual medical update. With the exception of one, maybe two or three posts, I’ve been able to maintain elements of art, beauty, faith, inspiration and depth in this series. I’ve followed my heart and been organic about the 12 posts I’ve written prior to this one. But as I’ve reviewed everything that’s happened, everything that is, and everything that’s to come, I’ve realized we’re in the midst of another transition. It’s time for a simple post filled with lots of updates. So here goes, friends…a little bit of everything for those of you following the journey!

Random Update on Work

Our biggest update is that Seth returned to work today. Well, maybe the more accurate update is that he began working from home today, and will continue working from home for the next two weeks. As of right now, he’s scheduled to return to the office on Monday, March 2nd. All this back-to-work business means that Seth had to make an abrupt shift from sleeping 75% of the time to being awake most of the time (with the exception of a late afternoon nap, of course). It’s only day one of working from home, but so far, it seems he handled it well. I’m expecting an early bedtime tonight, though.

Random Update on Eye Sensitivity, Pain, Drops & Ointment

Seth’s had more continued eye pain and sensitivity than he expected. He’s particularly sensitive to bright lights, bright spaces, and sometimes even modestly lit spaces. One time, he got up from the living room couch and said his eye was bothering him because of the brightness. It was daytime, all the shades were closed, and no lights were on. As I type, he’s leaving the room because he has “bright painful flashing” in his eyes from the overhead light. He’s been using prescription eye drops 2x/day since the first day of hospitalization, and a special eye ointment several times a day. These help heal the eye and keep it protected, but he thinks they might also cause extra sensitivity. So for the first time, he did try some hours without the drops and ointment today. It seemed to help a bit.

Random Update on Eye Patch & Shield

Per Dr. G’s orders, Seth wears an eye patch and shield every time he sleeps. For two weeks, he’s worn the eye patch and shield 75-95% of the day because that’s how much he’s been sleeping. But today with the transition to working from home, Seth’s worn them much less, of course. The eye patch and shield make sleep safer and more comfortable for him. He’ll be wearing them until we return to the doctor in March.

Random Update on Lifting

Seth is not allowed to lift anything more than a 1/2 gallon. When you start thinking about everything you lift, you realize how light a 1/2 gallon is. I’ve caught him cheating a couple times, for sure. But grace is the name of the game these days, so it’s all good, right?

Random Update on Showering

At the recommendation of Dr. G, I’d been washing Seth’s hair salon-style in the shower and sink since his hospitalization. He got tired of all the leaning back and lifting that accompanied salon-style, so he decided to move our shower head to its lowest setting and give it a whirl. Now he’s showering as usual. It just takes a little longer trying to keep the water out of his eyes.

Random Update on Driving

Seth was directed to resume driving when he feels comfortable doing so. He’s definitely tempted to try it, but I’ve been encouraging him to wait. Every time we’ve driven somewhere, he’s complained of nausea, that it’s way too bright, and he’s had his eyes closed half the time. I’m pretty sure he isn’t ready quite yet. I feel like a mom talking to her teenage son on this matter, but I’d rather be safe than sorry.

Random Update on Valentine’s Day

Our family shared heart-shaped pizzas and a Disney Channel movie with a sweet neighbor girl Valentine’s evening. We sent the kids to bed promptly at 8:45 p.m. Then we broke out a bottle of champagne and “The Fault in Our Stars.” Call me foggy and overly tired? I, of course, remembered the movie was about a young man and woman who were sick and madly in love. But I neglected to recall one small detail – the young man and woman had cancer. And oh yeah…the lead character’s best buddy battled eye cancer and landed up blind. Guess I was watching with a different set of eyes when I saw that movie in the theater by myself last June, huh? I hadn’t remembered that part at all. Needless to say, we both ended up in tears even though it was romantic.

Random Update on Getting Seth out of the House

This past weekend, Seth wanted us to transition to a more “normal” Sunday. So he planned for us to get up, get ready, go to church as a family, and have lunch at our favorite restaurant. He expected he’d resume his sleeping 75% of the day routine when we got home from church. But when it came to Sunday morning, he woke up on schedule, but promptly fell into a deep sleep within a minute or two. He was sleeping so soundly, I knew there was absolutely NO way he was going to make it to church or lunch. So I let Seth and our oldest sleep, and I went to church and lunch with our girls. Tonight, same story with our son’s basketball. He’d hoped to resume some level of coaching, but when it came down to it, it was just too much, too soon.

Random Update on Getting Me & the Kids out of the House

I’ve been feeling a little stir crazy. It’s been cold and cloudy. I’ve spent 14 days straight in a hospital, hotel and our house with the exception of runs to bring kids here, there and everywhere. And I’ve been responsible for most everything. With all that and President’s Day off school for the kids, I knew I desperately needed a change of pace. So today, I took the kids to the Mall of America. We shopped and walked a bit. We ate at Panda Express. We had Coldstone (need I say more). And we shopped and walked around some more. The kids were exceptionally well behaved. At lunch, our oldest said “This is fun,” and the youngest said “This is good.” They all thanked me without prompting on the way home. The outing was a breath of fresh air for all of us.

Random Update on Getting Me out of the House 

May I remind you that I’ve just recently been feeling a bit stir crazy? Yep. I’ve called in the big guns. My mom is coming later this week for one day to help with the kids. I’ll do a little housework without interruption. I’ll do a little private practice work so I can continue wrapping up those loose ends. I’ll get out for a movie by myself and maybe an errand or two. And perhaps I’ll breathe for a moment.

 

 

It’s been five weeks and one day since the doctors told my husband he has eye cancer. A lot has happened in one short month. In fact, I told you Wednesday that I wanted a do-over.

Let me do this month all over again.

Let me try again, God.

Can’t we get it right this time?

But time machines don’t exist. We can’t press rewind on life. We can’t go back and change the course of history. And we can’t deny or shame God for what He’s allowed. There isn’t a simple magical formula for going back and erasing all the things we’d rather not have experienced in life.

But we can embrace the mystery. We can trust, hope and believe that good can and will come from anything. We can relive moments and see beauty in all things. We can choose to live what we love, and love what we live.

I’ve learned so much about love on this journey through eye cancer.

Tomorrow is Valentine’s Day and my husband’s still upstairs in bed resting from last week’s radiation and hospitalization. Tomorrow is Valentine’s Day and he still has to wear an eye patch and shield whenever he sleeps (which is still most of the time). Tomorrow is Valentine’s Day and my husband won’t be able to pick up our baby girl and spin her around because she’s too much weight for the stitches in his eye. Tomorrow is Valentine’s Day and we won’t know if the tumor is shrinking until June. Tomorrow is Valentine’s Day and we won’t be celebrating with flowers, romantic rendezvous, sexy lingerie or 50 Shades of Grey.

Yes, tomorrow is Valentine’s Day. We’ll enjoy a special meal out…as family. We’ll send the kids away…to their bedrooms. And we’ll hunker down quiet…on the couch. My husband with his eye patch, and me with my fleece pajamas and fuzzy socks. We’ll watch some romantic flick I chose from Redbox, and if we’re lucky, we’ll enjoy a glass of wine or champagne before we fall asleep all too early.

When we wake up the next morning, when we transition into the next two weeks of my husband working from home, we’ll remember the love we’ve shared and the love we’ve been shown. And we’ll know, more than ever, what true love is.

Love is patient.

Love is sitting for hours on end in waiting rooms and hospital rooms. Love is remaining silent while you watch a loved one come out of anesthesia. Love is caring for kids when a loved one simply can’t. Love is holding and lifting, getting wet and washing hair day after day when nothing about you says stylist. Love is understanding sleep patterns that never seem to end. Love is listening and forgiving when a loved one shouts out of fatigue for the poverty, sickness and misunderstood dreams of this world.

Love is kind.

Love is delivering a meal to someone you’ve met two times. Love is leaving a gift and words of encouragement for someone you barely know. Love is gracing someone with your presence, caring for someone with a knock at the door. Love is a hug, a look, a call, a text expecting nothing in return.

It does not envy.

Love is being glad when your loved one’s lavished on. Love is resting confidently when your loved one’s receiving more meals, more gifts, more paid time off, and more attention than you. Love is chilling out when your loved one’s getting a lot more sleep than you. Love is extending grace to yourself when your sick spouse is funnier and wittier than you are.

It does not boast, it is not proud.

Love is remaining humble at all times. Love is bowing down to meet the needs of others. Love is remembering that you, too, will need care someday. Love is knowing that anything could happen in an instant. Love is recognizing that healing, restoration and reconciliation is not up to us, but God.

It does not dishonor others.

Love considers whether a picture would be appropriate to share on Facebook or not. Love does dishes. Love changes eye patches and dirty sheets. Love acts without recognition. Love keeps things private when it would be easier to shout out wrong-doings to the world. Love behaves bravely, boldly and beautifully.

It is not self-seeking.

Love is staying home when you’d rather go out. Love is forgoing your night to make dinner for someone who really needs it. Love is going out of your way to buy someone a piece of cake. Love is allowing him to nap while you do everything else. Love is waiting in quiet spaces while you’d rather be moving right along with your own agenda. Love is laughing when you’d rather cry.

It is not easily angered, it keeps no record of wrongs.

Love gives. Love forgives when it’s really hard. Love remembers, but moves on anyway. Love sends emails, texts, messages and cards. Love expects nothing in return. Love graces those who don’t respond they way we’d like. Love never presumes or assumes. Love waits.

Love does not delight in evil but rejoices with the truth.

Love is brutally honest. “You need to get out of bed now.” “You have no idea what you’re doing.” “You need to take care of yourself.” Love goes above and beyond. “You’re brave.” Love is wise. “You’re going to make it through this.” And love rejoices long before it’s justified. “You will celebrate.” “Spoiler alert: the tumor is shrinking.”

It always protects, always trusts, always hopes, always perseveres.

Love keeps on keeping on, even when it wants to give up. Love presses into hard things, ugly things, unseen things. Love delights in beautiful small things. And love knows it’s never easy, but always worth it.

Love never fails.

Love keeps the end game in mind. Love is a legacy. Love is faith with skin. Love travels and draws near in all things, at all times.

And now these three remain: faith, hope and love. But the greatest of these is love.

 

 

Since we arrived home from the hospital, many have asked me how Seth’s doing. My default reply is that he’s been sleeping a lot, so yeah, I guess he’s doing okay? Seth slept 75% to 95% of the time the first two days we were home. The past two days, he’s slept 75% of the time. I did the basic math at dinner tonight, and that means he’s been sleeping an estimated 18 hours out of each 24 hour period. “Seems about right,” I said. Seth smiled with little reply as he walked back upstairs to bed.

I trust Seth is sleeping so much because the trauma his body has experienced has worn him down. I trust Seth is sleeping so much because some claim radiation makes you tired. I trust Seth is sleeping so much because the invisible emotional, mental and spiritual toll cancer has on an individual has to be managed somehow. And I trust Seth is sleeping so much because it’s helping him heal.

Since Seth was admitted to the hospital 10 days ago, I’ve been having an unusually large number of dreams about my trip to the Dominican Republic with Compassion, about children and swarms of children. Last night, the dreams went even further back to the dream camera I purchased five months ago. In the dream, I was on location for a photo shoot at a hotel or a building that was very large with long hallways and a lot of elevators. I arrived at the shoot only to realize I’d forgotten my two lenses, so I started heading back to find them, only to forget where I’d left them. It was an ugly cycle of forgetting and not knowing. I had the body of the camera with me, but I was getting distracted by children and people and all I really wanted to do was take pictures. But I couldn’t because I didn’t have my lenses.

I trust I’m dreaming so much about my trip to the Dominican, Compassion and children because I haven’t had an opportunity to fully process the trip. I trust I’m dreaming about my trip to the Dominican, Compassion and children because part of me wants a do-over. As in, bring me back to the morning of January 8, 2015, and let me do the whole month over again, but this time, take away the eye cancer part of it. I trust I’m dreaming about photography because my brain is still way back in September when I bought the camera, way back in December when I stopped seeing patients for speech therapy. I haven’t had a chance to fully process all the old things with all the new things. And the lenses? Well, I’m not sure I have clear sight of anything right now. I’m ready to experience and photograph this new life, but I can’t quite get my bearings. I still need those lenses. I trust God’s giving me vivid dreams to help me process all of this.

Since we returned home four days and eight hours ago, I’ve been daydreaming a lot more than I would’ve ever imaged, especially given the circumstances of eye cancer, caregiving and heavy unexpected responsibility for home and the kids. Yet, I’ve allowed my brain to go there, to places in the future, to spaces I’ve yet to see. I’m still experiencing some of that emptiness, that hollowness I wrote about two days after Seth’s eye cancer diagnosis and the day I left for my trip to the Dominican Republic, on January 10. But I’m beginning to wonder if that’s part of what new normal will look like. What’s next isn’t easy. There’s not a clear paved path, but it is good. In fact, I’m believing it’s very, very good. I’ve sensed strongly for a couple weeks now that I need to go back and weave a few more threads together from the past three years. I know exactly which threads need to be woven. It’s just a matter of sitting down, doing it, and waiting patiently to discern what’s next.

I trust I’m daydreaming so much because I’m clinging to hope for a better future. I trust I’m daydreaming so much because God wants me to believe and trust that He has a very specific and good plan for the rest of my life. I trust I’m daydreaming so much because right now, I’m in a space where I’m living and acting in complete faith. Very little is known. And I’m a planner, organizer, and analyzer. So daydreaming is my way to bridge all of the unknowns with hope for a bright future. I trust I’m daydreaming so much because when it is time to move on to some semblance of “new normal,” I’ll have even more direction and clarity about what’s next. There will be trouble. But it will be good, as promised. God will heal. All things will be made new. And we’ll continue to rest in peace knowing there’s hope. For tomorrow is a new day.