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Moving on to “New Normal”

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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.

This blog post is part of a series I’m writing about our journey through my husband’s eye cancer. If you’d like to read the rest of the posts in the series, click here and you’ll be connected to the first post I published about our journey. All posts in the eye cancer series are listed and linked at the bottom of that post for your convenience. You can also access the series anytime by clicking the apple picture on the right sidebar of my blog’s home page, www.divineinthedaily.com.

greensig

 

 

 

Linda Johnson - Again beautifully written & so real and heartfelt. ((hugs))February 28, 2015 – 4:51 pm

Dara Apolloni - Love!February 28, 2015 – 10:22 am

Monica Anderson Palmer - This makes my heart so happy! Hugs to you all of you! You are filled to the brim with bravery!February 27, 2015 – 9:39 pm

Melonie Robran - So good to see your family at the band concert…Glad ‘normal’ is making a return to your life :) Continuing prayers for you all!February 27, 2015 – 9:30 pm

A Meal is a Quiet Expression of Love

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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.

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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.

This blog post is part of a series I’m writing about our journey through my husband’s eye cancer. If you’d like to read the rest of the posts in the series, click here and you’ll be connected to the first post I published about our journey. All posts in the eye cancer series are listed and linked at the bottom of that post for your convenience. You can also access the series anytime by clicking the apple picture on the right sidebar of my blog’s home page, www.divineinthedaily.com.

greensig

 

 

 

The Emptying and Filling of a Caregiver’s Soul

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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.

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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 HaitiOur 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.

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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.

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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.

This blog post is part of a series I’m writing about our journey through my husband’s eye cancer. If you’d like to read the rest of the posts in the series, click here and you’ll be connected to the first post I published about our journey. All posts in the eye cancer series are listed and linked at the bottom of that post for your convenience. You can also access the series anytime by clicking the apple picture on the right sidebar of my blog’s home page, www.divineinthedaily.com.

greensig

 

 

 

Robyn Krause Sitarz - Reading your blog reminds me why we connected so well all those years ago when you were an angel to Jillian and my son’s first crush. As mothers and wives, our plates get full to overflowing and it’s important to recognize those times when you must ask for help. I hope we connect again soon–it was a gift running into you again!February 24, 2015 – 6:32 pm

Doreen Auger - Time away to replenish is something we, as Moms, see as a “guilty pleasure” but we just need that reminder that we cannot give out if the ‘well’ is dry! Continuing in our DAILY prayers for you all!!!! Hugs and blessings…………………….February 24, 2015 – 12:34 pm

Carol Femling - So glad I could come and let you get out by yourself for a short day! It made me feel good to be able to help you out. I sensed that you really needed some time alone. I can do it again anytime your little heart desires it. Just remember that I am here whenever you need me–just call and I will come. See you on Thursday night for Cooper’s concert. Looking forward to it! Love you much, sweet girl!! :) XOXOFebruary 24, 2015 – 1:44 am

In Which I Will No Longer Live With Regrets

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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.

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Joyce Jacobson - The meaning of life; you are called to live deeply and be alive! Beautiful post Amy.February 21, 2015 – 5:46 pm

Tara Dorn - Beautiful! Your words are enough, Amy!February 21, 2015 – 4:23 am

Random Updates on Health and Home

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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.

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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.

This blog post is part of a series I’m writing about our journey through my husband’s eye cancer. If you’d like to read the rest of the posts in the series, click here and you’ll be connected to the first post I published about our journey. All posts in the eye cancer series are listed and linked at the bottom of that post for your convenience. You can also access the series anytime by clicking the apple picture on the right sidebar of my blog’s home page, www.divineinthedaily.com.

greensig

 

 

Amy - My apologies for the much belated response, Sandra. Glad you had a chance to read the update on Seth. I had two chances to get out and feed my spirit this past week. It was very necessary and I’m glad I didn’t hesitate doing so. Thanks, friend. Missing you.February 21, 2015 – 8:55 pm

Tom Baunsgard - Great progress for you all amid many challenges Blessings abound! Thanks for the update!February 17, 2015 – 9:36 pm

Darlene Saari Picconatto - Hello again. We are continuing to pray for your family as you walk on through this journey. I just wanted to say that your son is just a total mini-Seth!! Totally looks like the Seth we knew back in Duluth when we were friends with the whole family. He still looks a lot like the grown-up Seth, but just so, so much like the child-Seth we remember. You have a beautiful family! Enjoy some time for yourself. You need it to stay sane for the family.February 17, 2015 – 8:26 pm

Sandra Heska King - I love this random update, Amy. I hope Seth will be patient and and will give himself grace to heal. And I’m so glad you’re getting out and feeding your own spirit. So wise. You’re on my heart. Love you.February 17, 2015 – 4:57 pm

Carol Femling - I’m glad you took me up on my offer to come!!! I knew you were starting to feel housebound–I can read you pretty well! :)
My eye was very sensitive to light when I had my retina detachment some years ago. It is especially hard to drive at night with all the bright lights. It all takes patience and time. I am very glad that Seth is working at home for the next few weeks, so that he can nap when he needs to rest. Rest is very important for the healing process. Everyone that I know is praying for Seth and your family! We all wish the very BEST!! See you on Thursday! Love you much!! XOXO Mom :)February 17, 2015 – 3:48 pm