It’s been a journey, friends. If you’ve followed along on the blog, you’ve been with us through it all.

We’re not done with this eye cancer yet, but we’re approaching another major milestone.

My husband, Seth, hasn’t been into the office since Friday, January 30th. On Monday, March 2nd, he’ll return. He’s been working from home for two weeks now, and has made particularly great strides each of the past 12 days. It’s hard for a wife to measure the health of her husband, but let me just say he fed the kids breakfast this morning AND made oatmeal for me without prompting. That says a lot, don’t you think?

I’ve asked Seth to share a guest post on the blog this Monday, his first day back in the office. (Yes, I’ve been quietly and gently suggesting it all week. Today at lunch, he finally agreed to draft something this weekend.) So you’ll hear more from him very soon.

In the meantime, I wanted to share how I know we’re ready to move on to what’s next…from my perspective as wife and caregiver.

Halfway through through the month, my daughter participated in a week-long cheer camp. Two weeks ago, all the girls on the cheer team were scheduled to perform at a boys’ basketball game. Seth was still sleeping 75% of the time, so I had to haul all three kids out to the game by myself. Okay, so sports aren’t necessarily my favorite thing in the entire world. Neither is hauling all three kids to any big event by myself. But I thought I was ready. I thought I could do this. I thought it might be just fine. It was, in fact, fine. But it wasn’t awesome. Granted, I did have a three year old with me and it was bedtime and it was late, but by the time halftime came and the girls finished their performance, I was READY. TO. GO. I didn’t realize how drained I really was until I was out at a major social event. My ability to socialize was ACCEPTABLE, but not ADMIRABLE. When I saw how social and talkative everyone else was, I realized how tired I was. When I saw how much fun everyone else was having, I realized how much we’d been through and how much we were still on the mend. I was tired. I wasn’t really ready to go out yet. I wasn’t ready to chat it up with anyone. I just wanted to see my daughter perform and go home. So I did just that. After our daughter performed, I picked up all of our stuff, let the two older kids stay with friends, brought the baby home to bed, and went back a half hour later to pick up the two oldest. Half of a basketball game was all I could handle and I never once felt guilty about leaving early.

Contrast that with last night. Our son had a band concert. Seth was awake, alert! Ready to go to the concert as if nothing could hold him back, as if he never had eye cancer in the first place, as if nothing had ever happened. We went as a family. My parents had decided, last minute, to come for the concert. So we met them in the auditorium, too. I wasn’t super social with everyone, my mother and their mother, but I never am. I did, however, feel MUCH more energetic than I had at the basketball game two weeks ago, and MUCH more ready to socialize when we did engage with people we knew. Seth was fairly energetic and chatted with a handful of people, and he even kept an eye on our girls while my parents and I chatted with the superintendent. This was a MUCH different scenario than two weeks prior when Seth was in bed and I was out on my own, fatigued with three children. We all left feeling good, not drained. And I’d dare to say, we all left with a sense that this was quite “normal.” Yes, “normal.”

So this is how I know we’re ready to move on to “new normal,” whatever that is.

Today is Seth’s last day working from home. He complained a bit this morning about his eyes being more sensitive to light than they had for a while. And he’s still working in our bedroom with every blind drawn. But he took a lunch break and we went to McDonald’s to celebrate, just like we did the first day he started working from home. We enjoyed chicken sandwiches, just like we did the first day he started working from home. Only this time, he enjoyed a shamrock shake with the baby.

 

 

 

The goodness began on January 6, two days before my husband got his eye cancer diagnosis from the ophthalmologist in Minneapolis, two days before we knew any of this was about to unfold.

I was scheduled to leave January 10 for a week-long trip to the Dominican Republic with Compassion International, so she left a lasagna and cookies at our doorstep for my husband and the kids to enjoy while I was away. She brought a card with warm and well wishes for my trip. I was blown away to say the least. Who does this? Who brings joy and surprises blessing in the form of a meal? Who knows how to love like this? Who honors another’s life and work without expecting anything in return? I knew now. I knew her name.

Little did I know, that was just the beginning.

Two days later, on January 8, my husband got the diagnosis. Choroidal melanoma. Eye cancer. To tell the truth, it’s all a bit blurry from there on out.

But here’s what I know for sure…

Before we shared the news publicly, the word spread like wildfire privately. Within 24-36 hours of Seth’s diagnosis, my mom told me that she and my aunts were planning and preparing a week’s worth of meals for my husband and three kids to enjoy while I was gone on the trip. So January 10, the day I left for the Dominican, my aunt and uncle delivered several meals to our home. Before the meals arrived, I’m pretty sure Seth was a little hesitant to receive them. “I’m not on my deathbed,” he said. “I can still cook.” “I don’t want them going to all of that work just for me.” But the truth is, my husband REALLY appreciated those meals. He and the kids ate them all week long while I was gone. He had enough stress to handle with the new eye cancer diagnosis to process, full-time work, and three kids to tend. The ready-made meals were a true relief.

My parents’ best friends transported me to and from the airport. When they picked me up at the end of my trip, Cyndy, my second mom, had a grocery bag full of food ready for us to bring home. They’d already done so much, and now a meal. I was blown away again, and we’d barely begun the journey. I’m sure Cyndy thought she’d provided enough for one meal, but it was enough for two. Truly, when you provide a meal, the love extends further than you know.

The generosity continued from there.

Warm muffins for our first trip to Mayo Clinic.

A big box of snacks and drinks for our week at the hospital.

Treats waiting when we got home.

Homemade chili, corn muffins and fresh strawberries from a woman we’d met two, maybe three, four times.

A crock pot of spaghetti and meatballs, enough for three meals, with oranges and homemade cookies.

Chicken enchiladas, beans, rice, and brownies from a neighbor.

Ready-to-bake fajitas with chips, queso and sweet popcorn snacks from a blog reader who also attends our church.

A frozen meal from our church meals ministry.

Stuffed pasta shells, salad, and homemade apple crisp from our sister-in-law and brother-in-law.

Frozen lasagna, garlic bread, and ice cream delivered to our doorstep courtesy of an aunt three hours afar.

A rotisserie chicken, fresh fruit plate, and Valentine’s cupcakes from our daughter’s friend’s mom, handed through the car window as we left cheer practice.

Two heart-shaped ready-to-bake pizzas, root beer and brownies from a family on our son’s basketball team.

Homemade cookies from a friend and mama of one of the boys on our son’s baseball team.

Hot tortilla soup, chips and sour cream left at our doorstep.

Lasagna, garlic bread and Seth’s favorite, Reese’s Peanut Butter Cups, from a friend who’s near and dear.

Pot roast, mashed potatoes, carrots and french silk pie transported two hours in a car straight to our table.

Homemade wild rice soup, cheesy bread, salad, and Italian Soda delivered to our door from a sweet college friend we hadn’t seen in far too long.

Yes, we have been blessed.

We have realized the power of a meal in time of need.

The meals that have been delivered, the meals that have sustained us through the past six weeks have been nothing short of a miracle, really.

We are grateful.

And we will remember.

When you deliver a meal to someone in need, anyone in need, it is a quiet and powerful expression of love.

 

 

 

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.

 

 

 

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.