Tag: Terminal Illness

Uncategorized

Speechless

Hannah

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.

Gratitude

For Such a Time as This

Hannah

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.

Uncategorized

An Honored Rite of Passage

Hannah

When I met with my counselor recently she said, “If you were given the space and peace I think you would succumb to your illness very quickly, but out of sheer stubbornness you continue to exceed all of our expectations.” She’s not wrong. As far as the stubbornness scale goes I’m way up there near the top, and I do have quite a number of things I want to feel like are going to be ok in my absence. I realize that may sound arrogant, and some of it probably is, but I also think most of us if we accepted that our time is limited have things we want to settle before we leave this world.

I think there are pros and cons to this stubbornness to cling to life. As a culture we really look at death in a strange light considering it is something that happens to all of us eventually. We measure the length of a person’s life and state that they were taken too soon, or they died much too young, but what if it was exactly the right time? What if your story hangs heavy on the thread of /this/season, /this/ loss?

We seem to live in a mutually accepted denial of the fact that we and those we love have an expiration date. This has a tendency to rob us of a joy and peace we can experience in the face of anticipated loss. We can all probably find a little purpose by leaning in and loving like crazy and then graciously walking our loved ones Home with our presence, our honesty, and our understanding.

Uncategorized

Mama Sandy and the DOAM

Hannah

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. 💕

Uncategorized

Words with Weight

Hannah

At the end of each year as I spend some time reflecting on the year before, inevitably a new word saturated in meaning is impressed upon my heart for the coming year. That word remains the theme of my photo album, and the compass to how I hope to lead my family to grow throughout the year.

This past year our word was Shalom. Many of you may already know that Shalom means peace. I was longing for peace at the beginning of this year, but it went even further to define our year as not just an absence of war, but an overall sense of fullness and completeness in mind, body, and estate. To make full restitution; RESTORE! This brought to mind one of my favorite verses, Joel 2:25. “I will repay you for the years the locusts have eaten.”

Every time I passed the 6 letters framed upon our front door I prayed for peace both within our home, and outside of its doors. I prayed that God’s peace would bring a sense of completeness to our home; to our relationships, our walks with God, and our friendships with others.

As 2024 drew to a close and I started seeking and praying for our word of this new year I began seeing it on repeat, the word chosen for this year. This year’s word is JOY. I anticipate we will be blessed with an abundance of joy, and we will also see it woven in and out of many of our daily experiences. Perhaps we will learn better how to give joy, and we will become accustomed to receiving joy even in circumstances we might not think to look!

As we wind down our time in Shalom, though still activity seeking where we can give and take peace, I excitedly welcome this 2025 season of all things Joy!

Christmas, Uncategorized

Enough

Hannah

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.

Uncategorized

Exhaustion

Hannah

I’m grumpy. Last night I threw every trick I had at my pain. Every essential oil, medication, balm, massage, heavy blanket, heat, and desperate prayer. Yet it managed to throb steadily on through the night hours and into the morning without a moment of drifting off to sleep. Now as I count the minutes until my alarm goes off, it hardly seems worth trying to snatch any last seconds of shut eye against the roar of pain. I’m sure each of you have wrestled sleep deprivation at one time or another, and you know how your usual problems seem 10 times harder when you’re running on coffee beans and daydreams. So yeah, I’m grumpy and I know it and I’m praying sweet salvation over my soul.

Today I will need the strength to care for a husband who isn’t feeling well. I’ll need the wisdom to meet with a school counselor to plan the next semester in a way that’s most beneficial for my child. I’ll need the patience to help with missing homework, and the clarity to stay alert while driving kids here and there. It would be easy to despair before the day has even begun.

I’m reminding myself I am carried though. Carried by my Father who will never leave me, and the prayers of my people who never stop helping me press on. Please meet me there. Meet me in the fight, the grueling repetition, and the endless prayers, because goodness knows they’re needed today.

Christmas

There May Yet Be Hope

Hannah

After a week of navigating multiple infections, side effects from the antibiotics to treat them, layers upon layers of pain, my wheelchair ramp in the van breaking again, as well as the van being in an accident and needing repair, single parenting through the highs and lows of two young adults, a high schooler, and a middle schooler, all while trying to give our children the comforting normalcy of a home ready to welcome Christmas, it is tempting to despair, or to long for a storyline different than this one.

But at the crest of a new week with new challenges, I look back and can see so clearly where a mighty and tender King saw me sitting in the dark on the floor of my locked bathroom, reached out for me, held me close, and gently walked me through each step, whispering words of hope and assurance and goodness to me. He has been with me through it all, and the whole week He has sung compassion over me.

Saturday he sang Lamentations 3:29 over me, reminding me that even when facedown in the dust, there is hope. My peace grew as He shone a light through my despair. Even though this illness will most likely end my time in this world, He gives me hope and joy and life, and not just me, but many others as well.

As my wingman had to fly out of state again, leaving me to carry the weight of the household while pushing through crushing pain, I found truths in the book of James that promise that my suffering will mold endurance, leaving me perfect and complete. Digging into the Gospels for my church class, I read about crowds of people entrenched in suffering who travelled long and far to receive His healing. Like me, they were desperate for wholeness and relief, and in His compassion He gave them healing. I am left wondering, is this the same Jesus who might choose not to heal my body on earth? Will he let my little loves continue to watch me waste away to nothing and then have to grow up without their mom? Will he let my husband of 23 years become a widow and a single parent?

Then I find that He never promised a life of comfort. He promised great struggle and suffering. And hard as that is to comprehend, I hold to His promise that His Kingdom will come through the mending of all that is broken, and that His power is made great in my weakness. He came here to suffer an agonizing death so that I can learn to suffer well in His footsteps; that even in my pain I can find peace and joy and purpose.

He is gentle with me when I struggle with my limitations and when I question the good in my story. He is also faithful to remind me that as I live out a story I never would have chosen for my family, and take up my cross again and again to follow Him, this is the road that leads to everlasting life.

family, Uncategorized

Grilled Cheese Moments

Hannah

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.

Uncategorized

Slipping & Held

Hannah

I wrote this post a few years back, but came across it in my drafts today…

Sometimes it gets easy to not really think about being sick. In the day to day my normal becomes so routine that it just feels like things have always been this way. Then there are days like yesterday that have an ice cold slap kind of way of reminding me the fragility of my every day.

In the cold drizzle of early morning Mark drove me to my neurologist’s office for my 3 month Botox appointment. My doctor is one of the kindest I’ve met. His gentle demeanor and tender concern have a way of making me feel seen, remembered, heard, and valued. We began the appointment as we always do, bringing him up to speed about any changes in my condition since my last visit. This is where I’m reminded that this disease presses on. We compare my movements and symptoms, and he questions me about my cognition and memory. I have to defer to Mark because, well, I can’t remember.

“How does she seem to be doing?”

Mark’s eyes dart to mine, and I sense a hesitation before he answers.

“She’s slipping since the last time we were here.”

I listened as my groom of 21 years explained how I repeat myself, asking the same questions and going through the same motions over and over without any clue that I’m doing it. My face flushed with embarrassment as I squealed, “Babe! You should tell me when I’m doing that!” And his reply highlights the kind of gentle and selfless loving he showers me with day in and day out. “Telling you would not change anything, it would just make you feel bad.” He went on to explain to my doctor how he and the kids patiently listen to me say and do things multiple times and they play along like it’s the first time so that I can feel more normal and less afraid. And that, my friends is the truest love, and I am the blessedest blessed for having a man who is so thoughtful with my heart as we wade through these sometimes intimidating waters.