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.
I believe.
With hope,
Bo
John - Steve, Happy Birthday to You!!
While we’ve never yet met, know that I, and ever so many others, have followed the posts your dear wife has made on her blog. You’ve allowed us to celebrate the bright spots and travel with you through the valleys for a long while now; and for that we offer praises and thanksgivings. The journey has been arduous, but all of us have at least a glimpse of the eons ahead.
Please keep a spot for me at His feet (as well as Peter’s and Paul’s and a host of other saints who have gone before), ’cause I have reams of questions to ask when we’re all gathered together, knowing as we are known.
Feel surrounded by our love and prayers Steve (and Bo and kids), for they certainly travel with you each footstep of this journey. Nor shall anything ever separate us, for we truly are all His Kids and we’ve actually read the “end of the story”!!
Happy birthday again!!
John
Ross & Patty Sisson - My wife and I have never really met you, but will never forget two events. First, the Wednesday night that you spoke to us with Bo’s help. Your inspired, heart-felt message has stuck with us and always will. Second, the dress-up dance party at Summer’s house when you and Bo danced, with your family(both immediate & church) watching on. Unforgettable.
Happy Birthday and may God richly bless you and your whole family.
Ross & Patty Sisson
Debbie Hammagren - Happy Birthday Steve. The memory that comes to my heart is one thing. But it is one thing that happened many many times. It is the look of caring that you give. You have an indescribable ability to make others feel cared for. I know that it is Jesus living in you, shining out of you and on to us. Much love to you. Debbie Hammagren
Karen Sesnon - Well Steve, we only met once, but I’ll forever remember what you had to share about “being numbered” and the presence of God in the room as you shared. I treasure my copy of Beautiful Battlefields because you signed it for me. It feels like you are part of our family as we’ve traveled the outskirts of your journey via Bo’s blog…thank you for letting us in! I don’t have a personal story to share for your birthday…but it was fun a couple of days ago when my husband said “who’s Steve?”…and then went on in response to my puzzled look…”well, our calendar says his birthday is Wednesday and I can’t quite figure out who he is. I’ve counted all the kids and we don’t have a “Steve”. So, ya see, you made our family calendar! I’ve hit that season where culture tells us to avoid birthdays and complain about being “old”…so your birthday popping up on my g-calender is a reminder to me to be grateful for every gray hair, to celebrate “…every minute…”, and to view each year as 365 opportunities to listen, be present, and give God the glory. Alive! Loved! Satisfied!
terri andrews - Happy Birthday Steve from a “web friend” in Indianapolis, IN that you’ve never met before but I feel like we’re siblings after reading your wife’s blog. I want to tell you your an inspiration and I’m thankful to the Lord that you and your family share your life with us. In the midst of life’s trials your life is a Godly perspective of what is important: relationship with God, marriage, children, family, love, trust, prayer, people, & hope.
God Bless you and your family, Happy Birthday!
Thank you for all of the reminders to what life is REALLY all about.
Jenna Javens - Happy Birthday Steve!
I remember the first time I heard about you was from Whitney who informed me of your African roots. I had just moved to Bend and was unsure of how to re-enter into American life. But alas, there was hope of another fellow-African who loved that land as much as I did. In a season of transition it gave me peace and encouragement. And then I met you…you were warm and welcoming and sincerely cared to know who I was and my story. It meant the world to me. For me, it was a miraculous entry into the Stern/Parnell clan as a random village girl transplanted in Central Oregon. With very little info or time having passed between us all, you and your family made me feel at home, loved, and seen.
It is a gift that you have, Steve. You see people and in your natural, unassuming, loving ways you show people tangibly the value that God sees in them. Your care isn’t necessarily loud or obvious but there you are with consistent love, wisdom, and a listening ear. The times that I have been welcomed into your home for family dinners, watching your kids with Noel, and birthday parties are such precious moments for me. You made me feel a part of things in seasons where I wasn’t sure how to.
You also need to know that these and so many brilliant aspects of your character I see so clearly in your amazing kids. You have raised remarkable children who have absolutely been shaped and impacted by having such an awesome dad like you. You are a dad who reflects the heart of God so simply and powerfully. I am so thankful for the way you love your wife and the example that you both are to those of us that follow your path.
I love you Sterns profusely and am a better person because of your friendship and familyness in my life. Steve, I love you and am so grateful to know you. Praying that you are overwhelmed by the love and value we all feel for you.
Kathy Field - Happy Birthday Steve!! I unfortunately have not had the privilege of spending much time with you, but I feel I know you through the heart of your family, Joe and Lila. I do have this very special memory. It was at Intermission and Bo was our main speaker and we all sat at the same table. You and Joe were relaying lines from a couple of your favorite movies; one being “Young Frankenstein” We laughed and laughed!! Your facial expressions spoke more than your words lol. And then you went on stage to join Bo and prayed over everyone in the room (even now I get goosebumps and tears are starting to flow), the anointing and presence of God that filled the room was beyond words. We could have heard a pin drop as each of us soaked in the beautiful presence and powerful words being spoken. You truly are a man after God’s own heart!!