When I became friends with Kara, we discovered our mutual love for Johnny Cash and even when she was in miserable pain we would sit on her bed and crank up the music and giggle-sing along to his lyrics, trying to imagine the events that let him to write them. Then Kara shared with me another of her favorite artists, and I fell in love with the surprisingly deep, gravelly voice of Ellie Holcomb as she sang about the power of God’s love, and the purpose within each one of us. She is relatable and honest, and her vocal range is perfect for me to sing along with.
Then Ellie surprised us all when she heard about Kara and she hopped on a plane to fly out and put on a personal coffee shop concert just for Kara and her friends. If she hadn’t reeled me in with her catchy tunes and honest lyrics, she certainly did with her giant heart and her selflessness. I mean, it was something beautiful to behold.
Kara meeting Ellie
In the years that have followed since that amazing night, I have hoped and searched and watched for the opportunity to get to see Ellie in concert again. Well guess what… it’s happening!!
In June Lauren Daigle will be touring nearby, and she just happens to have partnered up with Ellie Holcomb. I mean… I really like Lauren Daigle, but I am definitely there for the opening act, and the headliner is a bonus! I am a little kid jumping up and down excited to get to see this incredible woman again; to hear her soulful words of truth and beam back at that beautiful ear to ear smile that never seems to fade. She may never know my name, or that I was there in that intimate coffee shop setting that night not long before my friend passed away, but I will relish getting to be in the same room again, singing along to some of the best praise music this side of the Mississippi. I can’t wait!
There is not much I feel like saying about Mother’s Day this year, and that makes me feel like it’s more important than ever to say it.
Mothering, as well as having relationships with our mothers can be really hard. Yes, there are blissful moments, like when that baby is first placed in your arms, when they say their first “I wuv you,” and when they run inside from school desperate to find you for that unforgettable hug.
There are memories of mom being the smiling face in the crowd at all of your performances, the one you could come home and spill all of your emotions to while she quietly listened, the late night back rubs, early morning hair braids, and the countless times she came to your rescue when you forgot your homework, said something you regretted to your best friend, or really weren’t sick but she knew you just needed a day home from school.
There are also a whole lot of hurts wrapped up in being a mom, having a mom, or wanting a mom. There are empty wombs and empty cribs. There are sleepless nights and bone-tired days you don’t know how to push through. There are arguments because you just wish she could see things the way you do, and there are painful gaps where you needed a mom and didn’t have one there. There is pain and fear over children who have walked away and you don’t know if they are coming back.
This Mother’s Day, close to my heart are thoughts of my sister trying to balance the joy of the homemade cards from her littles with the deep grief of feeling the sharp edge of her first Mother’s Day without one of her cherished sons with her earth-side. How does one fully celebrate the gift of motherhood after watching one of her children draw their final breath? Just like a house of cards needs at least 8 cards to stand, does not one child missing make a mother struggle to build herself back to who she once was?
Heavy in my thoughts are the lives of my own littles. Two at the edge, ready to fly from the nest they’ve always shared with me. Each one of my birdies fighting hard battles that this broken world has thrown in their path, and myself, sitting practically on the sidelines, crippled and nearly motionless from the ravages of a rare disease that steals many of our moments together.
So yes, this Mother’s Day I am having trouble hyping myself up, but I think that’s ok. There are seasons for jumping up and down with excitement, and seasons for quiet reflection, and I’m sure each one of us is at a different place on that continuum. Wherever you are, I’d like to meet you there; in your joyous celebration, or in your silent weeping.
Tomorrow we will wake on a day meant for mothers. I will be thankful for my own mom, and for the women that have filled spaces I’ve needed filled along the way. I will celebrate and smooch on the children I have here with me, and I will take time to think upon each of my treasures in Heaven, and how they furthered me in who I am as a mom. I will rejoice with those who rejoice, and I will grieve with those who grieve, and somehow through it all I hope the littles who made me a mama will feel my love and appreciation for them, and see the reality and okay-ness of taking each day from right where you’re standing. Of being real and kind and tender and aware of those around you, and able to ride these ever-changing waves with grace and enthusiasm.
Through my own good/hard story, and the suffering I have walked with family and friends, there have been some important nuggets I have learned along the way that I have tucked away in my heart to help me be a better friend/sister/daughter when I am with others who are really going through it. For a long time I have mulled over sharing these, even entertaining publishing a booklet something along the lines of “How to Help Someone You Love Through Grief.” Because truly, there are many things that unless you have walked through it you simply just don’t know, and that’s not always your fault.
I decided with the help of some of my closest people who have or are walking a hard road to share some of these bits of wisdom. And please, if you have had an experience you feel is worth adding; send me a message about it! I would love to broaden my perspective and help prepare others to respond with kindness and compassion.
What not to say…
When my friend and pastor’s wife was dying of breast cancer we had many honest conversations in the inviting safety of her cozy bed. One day one of the things she said to me was, “it’s so weird when people say to me ‘well you look good!’ As if somehow looking good negates the fact that this cancer is growing rampantly throughout the corners of my body daily.”
At the time I shared empathy with her, but in years following as I have been down the road of my own hard diagnosis, I have come to understand this even more than I could have imagined. It happens to me all. the. time. Especially true following hospitalizations or when experiencing down ticks in my level of functioning.
Two things come to mind when people exclaim to me, “well you sure *look* great!” in the midst of me feeling anything but. The first is that it somehow diminishes the validity of the illness I deal with every day, as well as the ever-impending life expectancy. When I hear people say this it feels like, “well it can’t that bad,” or “you must not really be /that/ sick,” or “you look good, so you must be ok!” Hearing how amazing I look the Sunday after a hospital discharge also manages to plant a tiny seed of self-consciousness… “well goodness, if I look so good now gracious knows how awful I must have looked three days ago when I didn’t have makeup on.”
The other thing to know is that when it is possible, the days I feel the worst are often the days I try my hardest to look my best, because you know, we all have this insecurity about gut-level honesty and just showing up unshowered or unkempt, in the comfy clothes that give our hurting bodies permission to feel however they are feeling.
The way I look on the outside is typically not a great representation of how I’m feeling on the inside, so keep that in mind when you’re having interactions with people who are battling illness for the long haul.
Not to say don’t give a compliment… I appreciate a good compliment as much as the next person! However, instead of a statement that lumps together how I look in spite of my illness, try to separate the two, like: “your hair sure looks good done that way,” or “your eyes really light up when you wear that color!” Approaching things this way removes the impression for a sick person that people’s barometer for how sick we must be is related to how put-together we look.
A friend of mine who has ALS invited my family and I to accompany her to the zoo recently. When she met up with us she looked amazing. She was pushing her wheelchair as a walker; fighting for each step while she is able, but understanding she would likely need help as the day wore on.
I commented on how good she looked; I told her how pretty she was in dangly silver earrings, and I gushed over how the lipstick she chose was the perfect vibrant shade for her brilliant smile. I knew, however, from our conversations the evening prior that she was fighting for energy and rest, and likely didn’t feel as perky as she looked. I chose my words carefully to compliment and encourage her without diminishing the elephant in the room- that despite her beauty, she is in the fight for her life.
Maybe that all sounds ridiculous, but I promise you it’s a whole thing. I’ve heard it from others, and I’ve experienced it myself.
Now you know a little something that will help grow your empathy and sensitivity to someone living with an ongoing illness! What are your thoughts?
Some sweet friends of mine just experienced the horror of delivering their lifeless baby girl at 18 weeks. This is after they buried their infant son just a few years back, and have suffered through 3 miscarriages in between. 5 babies that they have gone through excitement and joy and dreaming and hoping just to end in a devastating tragedy. When does it stop?
As a young adult I thought suffering was a transient and limited thing. It was meant to teach important life lessons, and once those lessons were learned the trial would end and that would be it.
My middle years taught me such a different truth though. Suffering isn’t something brief to be passed through— suffering is an invitation into the very heart of God. Since the best thing I can do with my life is love God and love people, whatever brings an increase to that goal then has to ultimately be incredibly good for myself, and for those my life touches.
It is a very painful truth to accept though, much less embrace. When we experience the sacred being ripped from our lives over and over again it gives way to some big questions about the goodness of a God who has said His plans for us are for good and not disaster; a future of hope. (Jeremiah 29:11)
Over the years, an especially long season of suffering has shown me that grief, loss, deep pain, and crushing brokenness have been the best teachers in instructing me how to best experience Jesus’ flawless love, and have taught me to have compassion and love for others in a way I never could have known before the hard roads of suffering I have found myself on.
It has not always been with open arms that I have embraced the hardships in my life though. Not even close. I have had long, hard wrestling matches with God with lots of searching and hard questions.
For me, if a terminal disease is the way for me to learn greater love for God and people, then I must count it a gift, not something to be endured and rushed through as quickly as possible. The suffering I experience now is only going to get harder and harder, and it won’t end until I die, but every day I endure I am pressed more into the heart of God… and that allows me to walk through the valley of the shadow of death with a God who promises to comfort me (Matthew 5:8), renew my strength (Isaiah 40:31), strengthen and help me (Isaiah 41:10). Mysteriously enough, the process of walking with him through that valley and beside those waters is what teaches me how to better love and care for others.
God may still choose to heal me, but only if my healing presses me further into love. Only if healing can accomplish eternally what a terminal illness cannot.
My prayers these days are less for the miracle I used to beg for, and instead for more days here to practice loving God and people, and I fight hard for that, especially for my husband and my children.
My most pressing question is no longer, “Why doesn’t God heal me?” but, “What capacity would I have for loving and empathizing with others if healing was my story.”
Nobody likes to feel stuck in suffering, but before you rush your hardest seasons away, consider what character is being developed in you that you would not have otherwise had the opportunity to grow into, and whose lives you are able to reach out and make an eternal impact on because of the fire you have walked through. It is painful, friends, but it is also some sacred , holy ground you get to stand on when what shatters you also becomes what helps you find your true purpose in life.
Tonight I’m angry. I was looking back at pictures of my amazing birthday party in August, and suddenly seeing myself in a flowery sundress, my long, slender neck kissing the curves of my collarbones without any tubing jammed in it was too much. I’m angry that I have to live with a hole in my neck to have more time. I’m angry that I can’t ever snorkel again, or go anywhere without lugging a bunch of medical gear around with me. I’m angry that my family has to deal with the fear and the routine and the stares I’m going to get out in public.
When is enough enough? Are the prayers of my family and friends just vapors that disappear into the atmosphere? Have I not surrendered enough of myself to trust God and believe he will use my story for good? Why does it have to strip literally everything from me first? Can’t I hold onto a little of my dignity?
I remember Lamentations says “pour out your heart like water in the presence of the Lord.“ So I do. All of my agony and my questions and my fear I dump like buckets at His feet. I stomp in the puddle just for good measure. Then I wait. All is quiet. My shattered pieces spread like cracks in a deep, frozen lake. Nothing.
Then as I tidy up my area for bed a notecard slips from the pages of my Bible. The curvy handwriting is not mine, and I have to strain to read it.
“Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, ‘the Lord is my portion; therefore I will wait for Him.’”
I flip to the page in my Bible and it continues; “The Lord is good to those whose hope is in Him… it is good to wait quietly for the salvation of the Lord.”
Wait. Quietly. At the bottom of the card is scrawled, “in the waiting it can be hard to trust His faithfulness.” Yes Father, it can be. Thank you for showing me that you know that. Thank you that you see me, and my struggle is not unknown to you.
With a serene peace replacing my recent fury I have a new thought to chew over. Waiting. Waiting expectantly. Knowing that my rescue is coming, and all I have to do is quiet myself and be ready for it.
She walked to her closet, thoughtful with each step. She had an opportunity tonight to be herself; to kick back and laugh and feel light and free and enjoy herself. She wanted to make sure she wore just the right outfit for the occasion.
She chose a brightly colored dress that made her look mature, yet young. The hem swished and danced with her steps as she walked. A softly knitted bright shawl wrapped her arms in warmth, and she tamed her frazzled hair into waves that bounced around her shoulders and framed her face.
When she leaned to study her face in the mirror a brief frown twisted across as she noticed how dark and tired her eyes were, and the dark shapes even deeper in her eyes that whispered of something heavier. She blinked it away though, and set about finding eye shadow that lifted her eyes, and selected a lip gloss that shimmered with glee and sparkled even brighter against the white of her smile.
“Almost ready!” she called to the footsteps pacing in the front hall. “I just need to grab my shoes.
Throwing open the closet door again she surveyed the shoes she took joy in gathering. They sat in matched sets, each with memories of a lighthearted dance, a day exploring at the park, or the sidewalk chalk scuffs of skipping through the backyard. Tonight was special, she wanted to look her finest. She reached for a glistening pair of high heels. Their sequins shined bright, and shiny new straps crossed daintily across the ankles. She reached for them, and in doing so knocked another shoe from its place. It tumbled across the others and lay in front of her, ready to step into. “Oh yes,” she mumbled. “How could I forget.” She put the other pairs of shoes away; the shiny conversational heels, the flirty strappy slides, and the tippy toe shoes that clicked the hard floor for attention as she walked.
She slid her feet into the muted pair that had fallen out. She didn’t even have to look down to get them on; they slipped into place with such familiarity. The soles were flat and worn from pacing. They cupped all her bony angles gently, an impression made from being worn many times. There was a scuff or two along the edge, and for a brief moment she remembered her conversation shouting at the heavens for a bargain, pleading for the life of her child. The worn material at the toes bore a few slight stains; likely the strong salt water of tears that could not be diluted.
Both feet comfortably in these familiar shoes, she sighed. There was no changing the shoes she wore now. They were forever a reflection of her. A grieving mama; a soul tormented by the agony she had walked through. But she knew how to wear these. Walk, run, sleep, pace a divet into the floor, these were the shoes that represented her day in and day out as she clamored through her painful story and prayed that it would be reconciled.
She grabbed her purse and headed for the front hallway, ready to meet whatever the world had for her today. She slipped her tiny hand in her true love’s large one, and he gave a squeeze as he took her in from head to toe. He knew whatever dreams she wanted, these would always still be the shoes she knew so well, and for now they carried her. They gave her the grace to excuse herself, the joy of a blessed memory, and they gave her the kinship of understanding another mama in recognizable shoes. So she stood tall and proud after all she’d been through, and she wore the shoes that wore her heart.
**For my sisters, who bravely put on their shoes every day.**
January 10th had been a good day. I had a few visitors, which always lifts my spirits, I had been working on a few orders for my Etsy shop, and we were getting back into a routine again after Christmas break. I went to bed a little early because I had worn myself out a bit.
A few hours later I woke unable to use my muscles to get a big enough breath. I couldn’t swallow, couldn’t breath, and knew I needed help fast. I quickly woke Mark, and motioned for help, and then got far away from our sleeping littlest hoping not to frighten him awake. That was about all I had left, and I collapsed on the floor, trying to conserve energy. It wasn’t long before everything faded to gray and I could hardly hear.
I was vaguely aware of the paramedic boots that tromped across the floor and scooped me up, carrying me into the night air. The next thing I was aware of as the stretcher bounced across the potholes of town was the excruciating pain and sickness that crept over me as the paramedic pushed a full dose of Narcan, throwing my body into instant withdrawal from my chronic pain medications, bringing on a slew of muscle spasms, and constant vomiting. My fight to breathe became more desperate as I choked on my own vomit gasping for each breath.
After some agonizing time in the ER, I lost all touch with reality, and woke later the next day in the ICU, biting and choking on the hard breathing tube that was down my throat, my hair a mess of blood and vomit. My respiratory muscles had weakened to the point that I could not breathe as deeply as my body needed me to, and I had been sedated and intubated.
We had already been having conversations with my pulmonologist and met with the surgeon to discuss it being time for a tracheostomy, so it was natural for these topics to surface again. They actually had time to do the surgery for me the next day. At first I objected, panicked at the rush of it all, and the lack of having my mind wrapped around it. After some reassuring conversations with friends who are doctors though, it was clear this timing was divine, and it was time to go ahead. I asked to be further sedated until surgery, so I didn’t have to spend the long hours fighting the tube.
Along with my wingman, my “Mama Sandy” was there with me to encourage and read scripture with me, and despite the embarrassing state of myself, I welcomed the presence of my dear pastor as he came to pray with me.
Despite the rush of it all, I felt peace; held in my fear and my questions, and comforted that God was walking every step along with me.
The wait for surgery felt long, but finally it was time, and I smooched my hubby as they rolled me away for a new airway. I was immediately more comfortable upon waking; the tubes removed from my mouth and throat, and now just one directly into my airway through the front of my neck.
A few days later I was transferred to a rehabilitation hospital, where I have remained for the past two weeks. It has been steps forward and steps back, and a tremendous amount of boredom and missing my babies, but each day is one day closer to home and this new way of life. My trach and vent have provided me much more relaxation with my breathing, and as we learn the routines it brings us more confidence managing this ourselves at home.
I cannot wait to get back to my family and my tribe… that comes next!
As my baby sis and I chatted back and forth today on what would have been my nephew Angel’s 11th earthly birthday, my sister said something so incredibly true and equivocally profound that I am left pondering over it hours later.
“You know what’s amazing?” she said. “Angel refused to believe he was a burden (and he wasn’t). But by society’s standards, he was. He couldn’t move a single muscle other than his eyes. He was 100% dependent on others for literally everything–life, health, engagement, communication…all of it. Yet he never apologized for taking up space. He had high expectations for how he was to be treated and honored and considered and included and he didn’t tolerate those who saw him as worth less than anyone else. He KNEW his worth. He knew it so deeply. And I can’t say that for myself. I at times feel overwhelmingly guilty just for existing and have since childhood. But not Angel. He. Knew. His. Worth. No matter what. And that is really, really powerful.”
This struck me to my core, because I at times get caught up in how much of a burden I must be, and how I wish I didn’t have to depend so much on other people. But Angel never felt sorry for himself like that. He knew he was a treasure; a child of royalty, and he did not accept being treated as anything less.
While a lot of that came from being just the incredible little boy that he was, there is also loads to be said about the fierce way my sister and brother-in-law fought for Angel’s worth. He knew he was valued because he was constantly treated as valuable, and he was shown that what he brought to the table mattered. He was fought for, given a voice, listened to, applauded, and all of those things only cemented his knowledge that he was worth it.
As Angel’s 11th birthday winds to a close my heart is so tender, but so grateful that for a boy who could have felt less-than, he always knew right where he belonged, and now in Heaven, he has claimed his true worth, his royalty; the crown he fought so hard for and was bestowed by his King. And I can’t imagine a bigger smile than on the boy who always knew- I am worthy.
Choosing Hope 