"Once you choose hope, anything is possible" ~Christopher Reeve
My church recently invited me to be a guest on their podcast, called Talking Points. I’m including a link if you’d like to listen to it, and you can also find many of their other podcasts on meaningful and important topics. If you give it a listen, let me know your thoughts!
(Two of my favorites are the ones about worship. Check them out too!)
I reach my desperate hands toward the heavens from where my help comes. I cry out to God because I know He will hear me.
How long God, will I watch my family crumble? Why do each of my children have to suffer so hard? How long will we wait for our redemption story? Have you forgotten us?
Please strengthen my hope, it is weary within me. Please redeem your people with your mighty hand. Restore to us the years the locusts have eaten.
I remember full well the days you stood me firm on a mountaintop. I remember your deep compassion for me, and how you saw something in me I could not yet. I remember the glimpse of my story you gave me, and it is a good, good story.
I will continually praise you, because not a moment of my life is hidden from you. You know full well what the finished picture will look like, and you are trustworthy to take me there. My thoughts are but chatter compared to the steadiness of your all-knowing mind. You have led me this far, and I will yet trust your kind and compassionate heart to bring my story to completion.
Thank you friends, near and far, who have prayed and loved and carried me through this hard few weeks. May God richly reward you for your faithful kindness.
Please hold my hope and cling to my faith until I can again.
I love giving gifts, and I enjoy receiving them, yet I struggle to accept one of the greatest gifts offered to me; the gift of receiving. It is a humbling place to exist, needing others’ love and care, and I find it difficult at times. I have realized because of my love of giving that it takes far more grace to receive than it does to give.
After years of priding myself on my strength, being humble is difficult for me. It’s hard to ask for help. Do you find yourself agreeing with me? Yet we are all in need in one way or another; broken and struggling but putting on the best brave face we can muster just to prove we can go it alone.
In this long, loooooong season of needing to accept the help of others I find that the luster of having it all together is wearing thin. I see the depth of brokenness within me and around me, and I long to connect in my brokenness. I long to be known and to know the true hearts of others around me.
At my core I am a doer. A server, a giver, a wear-myself-down-to-nothing all in the name of love kind of girl. Accolades for me, right? What if I told you it’s just a ruse for my pride and need for control? Control that blares I’m not needy, I can do it myself, I don’t need anyone— unless someone needs /me/, and then I’m there.
I have spoken with enough people to know that I am not alone in this. Well, maybe I’m alone in admitting it, but I’m not alone in feeling it.
For 35 years I basked on the pedestal of being able-bodied, capable of doing anything that needed doing. I spent decades believing my purpose was to wear myself out pleasing those around me. I knew the truth, but it was easy to ignore when I had strength on my side.
Culture convinces us that our success is measured by our strength. It’s a bold-faced lie that what we are capable of is what we are loved for. This isn’t living in the truth of the gospel. Thankfully God is continually gracious to keep showing me the sin of my pride and need for control. He patiently loves me back to the foot of the cross and reminds me of my need to be needy and not just needed.
It took the stripping of my strength by this awful disease to expose this to me, and I still have to seek grace often because my heart’s bent is on proving myself instead of letting myself be loved in my neediness. Jesus is breaking me of my strength and showing me the grace to be found in embracing my weakness, and the joy that it gives others who want to help.
I hope that you can find this truth in your own life. Don’t settle for being loved for your abilities instead of being loved for your heart. Resist the temptation to keep yourself busy in order to feel accepted. Look for the ways to slow and find your significance in something more real. Then notice how you find peace and rest in giving others the gift of helping.
Here is a graphic about my illness to give you an idea of the things it has, does, and will affect.
Inability to verbally communicate.
I have been a spectator to this with my friend who has ALS, and it is hard. Talk about a massive loss of control. Imagine the amount of having to slow down and let your actions speak louder than your words, or in this case instead of your words.
Over the past few months my voice has begun to weaken. At times it’s raspy, or sounds like I’m hoarse or getting sick. With this new development my speech therapist started the process for me to get an AAC device as an alternative means of communication. Control Bionics and my speech therapist have been wonderful to work with. They were very efficient at getting me set up with a device that will meet my current needs, as well as my needs as my condition continues to change.
At first, life with my AAC was about getting familiar with it and practicing navigating between the pages and words and phrases to best communicate. My device has sensors on the front that either detect my eye movements, or a slight muscle movement of my hand, and it selects the letters or phrases I want to say. It’s amazing we have this kind of technology, and I’m humbly grateful to be able to use it. I even had the opportunity to bank my own voice so that when it speaks for me you will still hear my voice. This part is expensive, but we are looking for solutions!
This past week my voice has taken a turn. One morning I woke up and barely had a voice at all. Some of it returned, but I now sound like a quiet, scratchy record with the occasional skip where nothing comes out at all. Truthfully it’s been a little unnerving seeing how fast I could be plunged into silence.
Hardly anyone can hear me anymore, and the effort and breath it takes to make my voice loud enough to project across a room is exhausting and frustrating. I wasn’t expecting this part to be so hard, but it’s hitting me right in a tender spot I didn’t know I had. I feel panicked to not be able to explain myself, threatened by the thought of not being able to call out and get my kids’ or caregivers’ attention. And if you see me singing along in church I’ve fooled you. I’m lip-syncing.
Another practice in total surrender; in cupping my hands around what’s left and holding out all I have to offer. A chance to do more listening than talking. Another practice in giving up what was and adjusting to what is, and believing that regardless of the journey or the outcome, I am held.
Throughout the debilitating process of this disease I admit I have wondered from time to time what good this trial could possibly teach me. It seems unfair. I have been wrestling with this question more so as I see the effect it has on my littles and my husband lately. What good is in it for them? God promised to use our circumstances for good (Romans 8:28). As the resulting wounds have grown deeper I have been asking more often; what are you doing God??
In typical fashion, He is faithful to point out His hand in my life and quiet my unbelief. Esther 4:14 runs through my brain on a constant loop; “perhaps you were created for such a time as this.” Then I was brought to John 9. Jesus and friends are with a blind man, and His friends asked why this man was born blind; was it because of something he or his parents did? The answer Jesus gave is everything. He replied, “No, this happened so the power of God can be seen in him.”
Wow. Talk about humbling. To think that God thinks enough of me to use me to reflect His power. This does not make the journey easier, but it makes it worth it. When I’m tempted to complain and long for the healing of Heaven I want to remember that His power is at work through me. It really is obvious, but sometimes I’m a slow learner. Look at how long I have been fighting! The average life expectancy with this is 6-10 years… I am in year 12! Why would God keep me here and allow the suffering to continue if not to bring glory? If you need proof of miracles well, you’re looking at one!
To God be all glory for allowing me the gift of being His and giving me a purpose beyond all I could imagine.
I met Sandy when we both signed up for the Women’s Bible Study at University Baptist Church. We ended up in the same small group that met to discuss what we had read and watched. Being an introvert, and still fairly new to UBC, I gave myself over to the very extroverted woman who had an answer for each of the questions, and I did a lot of “soaking in” during that time.
By September 14, 2022, Sandy and I somehow talked enough to become Facebook friends, and from there she discovered that I was collecting nail polish to paint nails for women experiencing homelessness in town.
Sandy wanted to help, and generously donated to my small little mission.
From there my busted up short term memory doesn’t quite fill in all the blanks correctly, but I do know that Sandy started showing up for me again and again. In ways others hadn’t, and in quantities others wouldn’t.
There was nothing that she would not do for me; sit and patiently teach me all of the wise bits about marriage she has learned over the years, vacuum and mop my floors, pray and read scripture over me from a hospital bed, let me vent about a horrible day that didn’t really stack up to her hard day. Remind me in kindness when I need to reframe my thinking, or go back and ask someone’s forgiveness, and hours and hours of holding my hand and praying over me.
Sandy disciples many different women, and I was always aware how much that filled her plate, but it took me awhile to realize what she was doing was disciplining me too. Guiding me in love. Teaching me in wisdom. Loving me with grace.
For years I have prayed for Godly women in my life who will mentor and guide me, and I think I had all but given up on that ever happening by the time I met Sandy. Yet she walked right in and took the job. None of my mess mattered to her. My life expectancy didn’t matter to her. She was simply there for as many days as God would allow us to have together.
We have gotten to serve together, laugh together, pray together, and have hours upon hours of conversations about every topic under the sun, including the hardest ones that no one much wants to talk about. I can only pray that I will have the opportunity to be someone’s “Mama Sandy” some day, because what she has given me has been something I’ve needed more than half my life, and came at the most impeccable of times. As I tell Sandy, “Our hearts have been friends for a very long time.”
And they will be, for a very long more. 💕
I hardly have any photos from Christmas this year. Christmas Eve I missed our candlelight service at church because I was too weak to sit up or stay awake.
Our candlelit tradition of “shepherds’ meal” on the night of Christmas Eve only kinda-sorta happened, because I wasn’t well enough to remember, or to get up and make different choices of soup and bread like I usually do. The night was rescued by a frozen tub of tomato soup found in the bottom of the freezer, and the calming glow of our advent candles. I lay in my hospital bed in the next room listening to the chatter, and chiming in silly questions like “what ever happened to the sheep after the shepherds left to see baby Jesus?”
Late on Christmas Eve I still hadn’t managed to wrap more than 4 gifts to tuck under the tree. Anyone who knows my personality knows that is the polar opposite of my checklists and neat packages tied with string weeks before December 25th. My husband and daughter came through by busting out all the wrapping (with the help of a healthy stack of gift bags) in the late hours as Christmas Eve melted into Christmas morning.
Christmas morning… well, really most of the whole day is a blur with more chunks missing than I’d like to admit.
What I /do/ know is all four of my babes were under one roof again.
My silly dream of a Hannah tree finally happened, in all her pink glittery glory.
Even through sickness and pain, the cozy warmth of a crackling fire still brought with it the memories of Christmases past, and the anticipation of more to come.
Zero kinds of Christmas cookies or fudge happened, but “Kitchen Trash” sure as heck still did.
I did not capture my traditional “photo every hour” series of Christmas Day, but I did manage to grab the still-frames of the most important moments of joy and togetherness.
And as the day wound down and the doubts crept in with the quiet, my wise sweet little sister typed out the balm that my soul so badly needed; I need to adjust my definition of the word tradition from “every,” and “have to,” to “some years,” and “like to.”
When I sifted through my unmet expectations I found that though I didn’t get the Christmas pickle unpacked this year, there was just as much joy and gratitude and wonder in the exchanging of the packages. And even though we weren’t able to visit the lights at the bell tower or drive the neighborhoods looking for the best displays, the twinkling in our own window was enough to cast that magical glow that makes you feel warm with anticipation.
This Christmas started out feeling like I dropped more balls than I caught, but as the day unfolded and the story of the Light coming into this dark world permeated each of our moments and traditions, all of it was suddenly more than enough. I was enough. Because He is more than enough.
First off, I am not trying to humblebrag by sharing this post. I want to share this very slap-upside-the-face moment I had with you because my deepest hope is that someone else out there will be able to slow down and have a few of these moments also; before we all wake up one day and realize it’s too late.
Parenting teens is a whole thing. Like, a whole thing that kinda gets glossed over in the What to Expect When You’re Expecting books, and I for one am a little miffed at the whole, “they’ll become complete aliens from ages 12-25 and then the sweet kid you know starts to re-emerge,” because there is /so much/ more to it than that, and I want to be totally here for it. All the things.
They tell us we are in charge of raising these little humans and teaching them to survive and thrive as adults by the time they are ready to jump from the nest into this maddening mess of a world we find ourselves in. If your kid shows up to college and has no idea how to separate whites from colors or boil water for ramen or how to Amazon Prime new socks before they wear holey ones to their potential in-laws for the weekend then we’ve clearly been blowing it at teaching them to be well-adjusted, responsible adults, and they will forever bare the scars of how their own parents left them so ill-equipped for life. Or so the pressure can seem, right?
And so throughout the child-rearing years I have done my best to think ahead to how they are going to function when I’m not there to pack their lunch for them, remind them to take a coat, and ask them when the last time was that they scrubbed the inside of their toilet. Probably to a fault. Yep, I would definitely say I err on the side of expecting much from them in anticipation that they will be able to handle much when they finally take flight from the familiarity of home. This week I had a moment though. A moment that reminded me they don’t always have to be nearly grown-ups; sometimes they are still that sweet little kid just needing their mom.
As my teens are growing and becoming involved in all the things I find myself ever pressing in to find where I’m “needed,” and perhaps more often than I’d like finding that they are quite the independent little adults now! Isn’t this what we have been training for?
This week one of my girls arrived home from a marathon day of school and then practice for a huge singing event that’s coming up. As she plopped all of her belongings on the table and then came to investigate the options for food, her request was pretty simple: “can you make me a grilled cheese?”
The me that we all know would say, “you can make yourself a grilled cheese; everything you needa is in there.” For some reason this time I hesitated. Instead, “of course I will. Give me a few minutes.” And in that snippet of time that it took for me to grill up a warm, melty sandwich something washed over me. It was like a lightbulb popping into a brilliant glow that chased away some of the shadows of self-doubt in my parenting. I realized by saying yes to her this time it told her that she was important and I was willing to put her needs first.
I feel like this is a message all of our teens need to hear, on repeat. They are out there bravely forging their way in this cloudy and upside-down world, and I know that the negative messages coming at them are immense. As their parents we have the power to show them that even though we know they are capable of making their own sandwich, they matter enough to us that we will put our own stuff on hold for a few minutes to say, “hey, you are worth it, and I love you.”
Our children’s slice of time at home is so small in comparison to the rest of their lives, and I want to do better at giving them those snapshot memories to tuck away and remember on the days the world is loud and they cannot find their place. I want them to know that wherever their journeys take them they will always have a safe place of refuge where they can count on being served up a piping plate of unconditional love and acceptance.
This teen thing, we are kind of just figuring it out as we go along with loads of prayers and a few strong drinks along the way. What “aha moments” are you having as you raise up your young adults? I’d love to hear what you are learning as you walk out the important job of raising little humans.
As my body has slowly been taken over by this progressive neuromuscular disease, I have bit by bit lost many parts of my autonomy. For a girl who’s used to blaring sirens and running red lights to help people, as well as getting to be the mama/chef/chauffer/counselor/chaos coordinator/party planner and loads more to a quiver full of little people, losing those bits has been a difficult process. I am not used to nor do I like being the one who needs help, and with each slice of my ability lost, a chunk of my dignity crumbles along with it.
Some things have been easier than others. Grocery shopping? I never cared for it anyway, so I definitely don’t mind that grocery delivery is how that gets done now. Carrying the laundry hamper down to the basement? Enough hard tumbles down the stairs have rewritten that effort with gratitude at my husband’s willingness to take that one upon himself. Even if I have to remind him that the laundry pile is crawling up the wall like a toxic weed gone rogue 🤭. But having to give up a career that I loved, not being invited to hang out with friends as much, not having the strength to pull together birthday party plans, or make it to each of my babies’ sporting and music events; those things have hit me square in the gut in ways I don’t know how to reconcile except one difficult emotion at a time. Despair, anger, resentment, denial… and some semblence of acceptance, though often coupled with deep sadness.
Some days the things I am losing are simply a reminder that I am here still getting to participate in life with my people, far outliving the initial “6 months” I was given back in 2020. Yet some days those reminders are a gut-punch to my identity, reminding me of who I’m not anymore, and what I will never accomplish again.
I sat with a friend last week who is in a serious battle with cancer. We sat staring at a splintery pile of firewood in his driveway that needed to be split, organized, and stacked, but the corners of his body the cancer has laid claim to prevented him from even managing the smallest pieces of wood. My heart twisted as I saw his eyes fill with tears, and in a broken voice he reminisced over the days he used to bench press two of me, and yet now was reduced to struggling over the smallest of loads.
My friend’s grief brought to mind many similar losses I have wrestled and grieved through. Dignity that was labored for with diligence suddenly snatched away to be replaced with feeling like I’m never enough.
My heart ached with knowing what my friend was feeling, but I also struggled knowing that no trite encouragement would do anything to ease the sharpness of the edges that were slicing his tender heart. If I have learned anything from these moments it’s that these losses demand to be felt and grieved. So we sat and we felt that, the weight of it all, and leaned into the hurt of all that this broken world has taken.
So often throughout scripture God urges us to remember everything He is and everything He has done for us. For myself at least, my mind often gets distracted from that and bogged down in the very present pain of surviving one more day. Yet on the other hand the very same book is real and raw and gives us the space and permission to feel the deep pain we feel.
“He forced me off my way and tore me to pieces.” Lamentations 3:11
“He has led me into darkness, shutting out all light. He has turned his hand against me again and again, all day long.” Lamentations 3:2-3
I am so thankful God’s Word is so gut-level honest, giving us permission to feel all the feelings we wrestle with. I am also thankful He doesn’t stop there… He /reminds/ us when we are in too much pain to remind ourselves.
“No one is abandoned by the Lord forever. Though He allows grief, He also shows compassion because of the greatness of His unfailing love. For He does not enjoy hurting people or causing them sorrow.” Lamentations 3:31-33
We do not have to pretend our suffering is not real. We are given the space and permission to sit and stare at the mountain of heavy logs and weep for what we have lost. And then we are given the strength to rise again and allow all of our hurts to be swallowed by the deep and endless mercy that is freshly provided every morning. He has walked along side us in beautiful ways through many trials, and He will do it again. Do you trust Him to do so?
Choosing Hope 