If you tell me your husband is hard to buy gifts for, I will have zero sympathy. I’ve honestly never experienced anything like trying to choose something appropriate for a man on hospice who can’t eat, drink or leave the house. Videos were good for awhile, but now we mostly use Netflix and apple TV, so DVDs tend to sit on a shelf and never get opened. This year, though, is a special birthday. Steve fought hard for this birthday and I didn’t want to let it slide by without presents. So, we bought ‘em – we just didn’t buy them for Steve. Instead, we bought them in honor of Steve. The only guideline I gave the kids was to spend money on something or someone they felt Steve would want to bless. Last night , after reading a few of the (hundreds!) of emails that came in for him (thank you!), we gathered around him and gave him his gifts:
Corey, Whitney and Grey gave money to a young couple’s dream of becoming missionaries. Steve was a missionary kid in Africa for the first part of his life, so this is dear to his heart.
Casey supported some friends’ project to provide school supplies for needy children. We loved how this gift touched so many layers of people.
Tessie gave money to Charity Water (one of my favorite organizations out there), and in Steve’s honor helped provide clean water for 2,000 people.
Victoria researched and found an organization working to empower women in third world countries and they have a strong presence in Nigeria (where Steve grew up.) One of the things I love about Steve Stern the very most is the way he believes in women. Perfect gift.
Josiah gave money to Sparrow Clubs – an organization here in our community that provides help to children with profound medical needs, and uses public schools to do it. Man, I love Sparrow and love that Joe thought of them.
Tess’ boyfriend, David, chose to bless a friend who needed help with his tuition. Exactly the kind of thing Steve would have done because he’s just a dad like that.
As for me, I knew right away what I wanted to do. When Steve can’t sleep, he lays in bed and prays. He prays for us, for our family, for all kinds of personal things – but he has also spent long hours praying about the situation in the middle east and for the victims of ISIS. It’s deep in his heart. After researching several organizations, I gave to Samaritan’s Purse, earmarking my money to go towards displaced Kurds who have fled the violence in their region. In doing so, I felt like I was putting feet to Steve’s prayers and it was so fun. And I didn’t have to wrap it!
As we each told him what we had done his honor, it struck me that this is much like Steve’s life. Though he feels so stuck in his chair and his house all day, the effect of his faith and compassion ripple out all around him through those who know and love him. After gift-giving, we watched American Idol with him, all stuffed together in the room where he spends all his waking moments, critiquing the Idol voices and outfits and just generally making it really hard for him to hear what was happening on his show. It truly ended up being the best birthday ever.
When I was little, we would sometimes travel to the Oregon Coast on mini vacations. I both love and fear the ocean so it took me awhile to get brave enough to put my toes in it. My parents also fear the power of the crazy coastal sneaker waves and would always start to panic when the tide rolled in. Slowly it came. Wave by wave, moving closer and closer to toes…ankles…knees. That’s when it was time to move away from the water and into the safety of the house. The saddest moment of Oregon Coast vacations was high tide on the very last day. That’s when I knew: our time here is nearly done.
Sorrow is so much like the tides. It rolls in all stealthy and, little-by-little, starts to nip at your toes. In the past few months, I’ve tried hard to outrun it. I run to Home Depot or I run the River Trail and it works for awhile, but today, I feel the tide edging up into my now, pushing its way into all the moments of life. Waking. Sleeping. Hoping. Singing. Shopping. Any moment, it seems, is at risk for a sneaker wave – a gut punch of sorrow so intense I sometimes feel doubled over by it. The problem now is, the tide is too close to outrun.
ALS is also like the tides. It sneaks in slowly at first, attacking and receding, almost like it can’t make up its mind whether it wants you or not. Steadily, though, you realize: here comes high tide.
So, here we are. Four years post-diagnosis and it seems the water is nearly up to our knees. We could run, but Steve cannot, so we will stand with him on the shoreline as long as we can. We will surround him and guard him and keep him as safe as we can until the water carries him away to a new and beautiful life. We will try with everything we have to let go gracefully. We will worship. We will give thanks. We will weep. We will dream of the day when we are together again.
We will try to be brave, but more than that – we will trust. We will trust that God is real and God is good. We will trust in His sovereignty and strategy. We will sink our hearts deep in all we know as truth: that our Great Father is living in a committed, covenant relationship with Steve Stern and He will not, will not, will not leave him alone or unloved. Not now, not ever.
If we trust Him, we have everything.
And we do. We trust Him.
This Wednesday is Steve’s 53rd birthday. We always struggle with what to get for him because at this stage of his journey, he really does have everything he needs. What he loves most of all is visits with friends, but he doesn’t have the energy for many of those anymore so we decided to bring the visits to him through the magic of Facebook.
We’re asking his friends to take a minute and write down one fun memory they have with Steve or one way he has inspired/blessed/annoyed them in the past 53 years. Me and the kids will take turns reading the messages to him and we’ll also have the comments to treasure for a long time. If you’d like to be a part of blessing Steve on his birthday, you can leave your memory here in the comments section or email it to me directly at firstname.lastname@example.org
Thanks so much! We love you!
Bo for Team Stern
I get a lot of emails from caregivers and people going through illness or crisis and the thing I hear the most, by a landslide, is “thank you for being so honest.”
Can I be honest? Honesty is hard. It’s hard for many reasons; here are a few:
1. You run the risk of appearing weak and inadequate in a world that puts a premium on strong and capable.
2. You run the risk of people telling you you’re doing it wrong. I’d be okay with being corrected if we’re talking about how to knit a potholder or cook a leg of lamb – but being the caregiver to my husband, having his life in my hands and feeling daily overwhelmed by it? That’s tender ground. I understand why many choose to not share at all or to polish up their deepest thoughts before they let them out for the world to see. I have chosen NOT to hide the truth away so that those who also feel overwhelmed and inadequate can – for the briefest moment – also feel normal.
3. You run the risk of exhausting or alienating people who aren’t in a season of struggle. It’s hard to keep reading about the same hard nights and long fight over and over again. I totally get that. I would have stopped reading my blog two years ago. I read other blogs with fun recipes and recaps of family vacations to Disneyworld and I wish I could write about something else. Anything else. But this is my honest. The process of watching a spouse transition from one life to the next tends to crowd out the meaning of many other things. I’m just not sure how I would authentically gush about meatloaf in this season of my life, though I’m not ruling out the possibility entirely.
4. You run the risk of being compartmentalized by your confessionals. Just because I feel hopeless and helpless on Tuesday doesn’t mean I feel that way on Thursday. Emotions roll like the tide for me right now…I mean, if the tide came in and out every twelve minutes or so. In the beginning, I tried to wait to write until I felt something I was certain would “stick” – but I’ve learned that there isn’t very much that sticks forever and there’s beauty to be found in the rhythm of grief and gratitude, heartache and happiness, frustration and triumph. I hope I always communicate enough of the ups and downs to help people understand that God is not distant from any of it. His presence hovers over it all.
5. You run the risk of exposing the people you love most. In order to be honest with what I’m feeling, I have to also include some of what Steve is experiencing. I’ve tried to be very, very careful with that and to always run things by him before hitting the publish button. We believe it’s helpful for people to understand what life with ALS is really like. We’re also uncomfortable sharing the full details of that reality. So, we try to land somewhere in the middle. While I’m always 100% honest, I’m only about 40% transparent. Some things are just too sacred or intimate to share. Most of our story lives under the surface, in the deep places, where it will stay securely held by the One who holds the pen.
And that’s how I feel about honesty and transparency in general the midst of suffering. Today, specifically, I feel pretty lousy. We had a hellish night, trying to make some new equipment work. We had a very tense morning as our beyond-tired selves tried to come to an agreement on how to solve problems that are way over our heads. I left our room at 5 a.m. for the refuge of coffee and my Bible and – here’s where that transparency comes in – I journaled, “This burden is not light or easy. It’s hard and awkward and too heavy for humans.” And I cautiously held that bold confession up to the light bulb of His scrutiny, all but daring Him to be mad at me for questioning His explicit promise that His yoke was “easy and light.” But instead of anger, I felt Him grab my shaking fist and hold it to His heart. “The promise doesn’t mean life will not be hard or heavy, ” said He, “It means you can bring your weaknesses to Me without feeling guilty. It means I’ll help you. It means I won’t give up on you because your life isn’t perfect and your heart is messy A light yoke means you are free to feel and to be honest in the feeling.”
So I am. Being honest today in the feeling. And in doing so, I hope I give you hope and permission to scrape away the layered-up veneer and let your pain out where it can breathe and be built into the mosaic of your beautiful life. That’s what I believe. That’s my honest.
(UPDATE: I just checked on Steve and the equipment is working and he’s sleeping peacefully and the coffee is working on me and I’m feeling decidedly less lousy than I did two hours ago. Tides, I tell you.)
I’m here again tonight where I often find myself: sitting in the dark beside Steve’s bed, not ready to sleep but not willing to leave him. Nights are both hard and good. They’re hard and then they’re good.
Around 10:30 every night, I give Steve his night meds – a pretty potent combination designed by hospice to help him sleep, keep him from choking and help with the pain he’s been experiencing in his shoulders. While they sink into his system, I refill the humidifier in his breathing machine, put his bed down, change the linens on his pillow and push the bed as far to the middle of the room as it will go. He rolls in thirty minutes later like clockwork and by this time, he can hardly keep his eyes from closing. I’m grateful for the meds that help him sleep more comfortably because sleep is his only escape.
I remove the neato cup holders from his wheelchair. His caregiver, Crystal, devised this ingenious system for him to keep a spitting-cup always within reach. He liked that so much that she added another one for the remote control. What man in this world wouldn’t want a carry-along caddy for his remote control? Crystal and Steve are partners-in-crime, for sure. At night, I take the cup holders off so he can move his footrest in which makes for a much safer transfer from chair to bed. How we discovered we needed a safer transfer system is a long, scary story that I’m not ready to retell just yet. (If you’ve never worked with someone with ALS, the best way I can describe it is to say it’s like moving someone whose limbs are made of heavy jello. It’s very awkward and I’ve yet to find a system that feels foolproof.)
With the footrest moved in, I take off Steve’s neck brace and shirt and then we count down to three and I lift him out of the wheelchair, balancing him on shaking legs. He can stand long enough to let me pivot him onto the bed. I breathe a silent sigh of relief every time he is safely on the bed. He uses the suction machine and then I lift his head up from where it’s fallen against his chest and put the breathing mask over his face. Nearly every time I do it, I wonder how many times I’ve done it in the past few years. I wonder how many times he has dreaded another night with the mask and how much he longs for the days when he could sleep without so many constraints.
I turn on the breathing machine and it makes a soft, whirring noise that has become a comfort to me. Steve lays down hard on the pillow – he has very little core control, so it’s always a pretty ugly drop from sitting to laying on his side, legs dangling lifeless over the side of the bed. I lift his legs up and move his arms to an angle that is useful for him to gain some leverage. I place a hand warmer in his palm, put his hands together and then wrap them in a towel. I cover him with several blankets and have learned to tuck them in well or he will wake me up soon, telling me he’s cold. Nights are cold without muscles. When he’s finally lying there, tucked in and masked-up, we wait. I stand beside him while he decides what needs to happen with his head in order to be comfortable. He thinks about it for a bit (sometimes a pretty long bit, which is kind of annoying) and then tells me what to do. “Lift my head up and pull the pillow toward you.” Things like that. He’s unable to shift his own head in any way, so he relies on others to do the adjusting for him. Sometimes I get it right pretty quickly, sometimes we’ll go through seven or eight different positions before he feels ready to sleep. Not gonna lie, this is one of my more frustrating responsibilities. When his head feels just right, he whispers, “Okay. I love you.” Every night, that’s how it goes. And the process used to be repeated several times a night, but now it only happens once or twice and, this week there were two nights when it didn’t happen at all. He slept straight through from 11 to 9:00. That hasn’t happened since…I can’t even remember when. On the one hand, I’m glad he’s able to sleep. On the other, I think it’s indicative of the progression of this disease and how exhausted he always is.
Once we’re in for the night, I pull the covers up over myself and my first thought is always, “We made it.” We made it through another day. We earned a night of sleep. And we tried with all that remains to glorify God and to make His name famous. And maybe we failed a lot, but we tried.
Sometimes I fall asleep before any other thoughts, and sometimes I lay awake for long hours, thinking of how life is now and how it will be. I wonder how much longer our nights will be like this. If I’m honest, there’s not a single night when I don’t wonder if Steve will wake up in the morning. The longer we go, the more I’m able to shelve the stuff I can’t solve, but sometimes it does race in all bossy-like, trying to steal my peace.
And nights like tonight, I write. I mostly write so that I’ll remember it down the road. I write to remember these dark, intimate moments when marriage looked so different than I ever dreamed. I write for a day when I’ll need to remember that I’m stronger than I think. And I write so the rest of the world can understand the brutal realities of life with ALS.
That’s why I’m pushing publish on this post. Not so people will feel sorry for us, but so they will know the nature of the fight so many face, and that many of them face it alone or without the benefit of a caregiver who shows up in the morning. I believe that every person with working arms and legs has something they could give to a person who has none. Every person could volunteer time to give a caregiver a break or give some money to help find a cure. Maybe if enough of us tell our stories then we, the citizens of humanity, will be compelled to fight for change.