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Small Big Things

Hannah

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?

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Invisible

Hannah

In recent years thanks to lots of advocating by people with various handicap challenges as well as rules set by the ADA there has been a shift in many communities regarding the inclusion of people who can’t quite do things like everyone else. I both appreciate and applaud these efforts, because as a wheelchair user I can appreciate the many ways that I am able to participate because of the ways things have changed in recent years. What about when it’s not about the curbs and ramps though; what happens when it’s the people surrounding you that are the stumbling blocks to feeling welcomed and included?

For the better part of the past 5 years I have had to use a wheelchair when venturing outside of my home. While I can get away with a cane or “furniture surfing” around my house, the weakness, spasticity, and shortness of breath that kicks in after a very short distance is just not feasible to going out places away from home. So we’ve just packed me and my wheels into our van and gone about life as normally as we can. Recently though I’ve noticed the closed doors aren’t just the ones without a handicapped button.

A few weeks ago I was volunteering; wearing my badge and my shirt setting me apart as someone who could help, while sitting in my wheelchair. Two others were helping with me, and I noticed that regardless of how I engaged or smiled or said hello to people, if they needed help with something they went to one of the other two volunteers 100% of the time. I couldn’t figure it out; not seeing me there wasn’t a plausible explanation. Did they see me and just assume I was incapable because of my limitations? Did they just want to avoid a situation that felt awkward to them?

Fast forward a few weeks to when I attended a social event with several other people I knew. While two people said a brief comment or question to me, there was no one else in the entire group of people who spoke to me that day; not even a hello. I found myself frequently looking at the clock anticipating the time I could get out of there because it felt so incredibly awkward.

Perhaps someday I’ll be brave enough to ask people what it is that prevents them from engaging with me. I feel like even as an introverted extrovert this would help give me some perspective on how to help people see the real me. For now though it stings a bit. I find myself anxious about attending events and gatherings. I catch myself questioning what value I offer people, and that’s not somewhere I want to stay.

Fortunately I know who I am to God, and I’m confident he accepts and wants me regardless of my shortcomings, and despite my bumpy hard story. I know He is not afraid to meet me in my mess, and so I cling to Him there while I ask for the courage to show others who I am and what I can be besides my illness. God tells me I’m worth knowing, and His opinion is the one I hold closest when the reactions of the world around me sting.

Have you been in situations where you feel like you’re not noticed or wanted? How do you handle those closed doors that don’t seem to have a way in? Do you know your worth, other than what the world has to say about it?

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A Letter

Hannah

Dear Hope,

You were the one who poked shining rays into the darkness in the aftermath of my family’s divorce, and gave me the courage to believe that I could write a different story for my own life and family. And I did.

You were the one who beckoned me to hold on when my own marriage was at the brink of destruction, and gave me the faith to believe that things didn’t have to end that way. And they didn’t.

You were the one who picked me up off the ground following the death of my daughter and whispered that my brokenness could be used for good things. And it has been.

You were the one who gave me comfort during the long nights that I wondered if I would see my wayward child again. And I did.

You were the one who has given me strength to fight against the odds and push through the horror of my illness every day because my life can still bring glory to God. And I have.

You were the one who kept whispering to me that all these broken pieces can be redeemed and used to make something beautiful. And I listened.

You are the one who has never let me give up because you have always shown me the glimpses of what things can turn out to be if I just hold on, but I’ve got to admit something, Hope. I have been struggling to trust you. What are supposed to be seasons are feeling more like lifetimes, and the dark that I keep believing can’t get any darker still manages to. Isolation is crippling, and the barrage of hard things makes it difficult to believe I will ever know something better. I appreciate the relationship we have had so far, but could you throw me a bone here? I’m weary!

I remember “I have put my Hope in your Word,” so I turn there, seeking…

“Be joyful in hope, patient in affliction, faithful in prayer.” I feel lacking for the words to even pray, so I just start with what’s inside; “Help Lord, we need you. Please help!”

“Those who hope in the Lord will renew their strength.” My strength is waning, practically non-existent, but here is a promise I can cling to. So I wait expectantly for renewal.

“Hope that is seen is not hope.” So when hoping for what I cannot see I have to wait with patience. Patience. Deep breath. Realizing there is nothing I can do, but God can.

“And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.” Ok God, you said it. So I’ll hang on and wait. Please give me the strength to do that. Help me choose hope and joy even when it’s the hardest thing to do right now. Bring back my hope.

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Not My Will

Hannah

After 2+ weeks in the hospital, this past week was my week to get back on track. I caught up on late orders from my Etsy store, did as much housework as I could tolerate, and soaked up time with my people. Life started to almost feel like our normal again. Then Friday came in like a wrecking ball.

I found myself sitting alone in the emergency room with a serious complication of my feeding tube that would require a painful procedure. All went well and I was home and tucked in by bedtime with the assumption that I would wake with this small speed bump behind me. Then came Saturday.

Saturday we had lofty plans. With the temperatures trying to point to autumn, the kids had been bitten by the pumpkin patch bug, anxious to take our annual family trek out to select the perfect pumpkin and sip apple cider on hay bales. Then we had penciled in a night at the rodeo, having already laid out our flannels and boots in eager anticipation. That is until I woke up.

The pain from the day before was tolerable, but every time I tried to stand I broke out in a sweat, my body shaking as nauseating waves of weakness forced me back down. Trying to be optimistic we eventually cancelled the first activity with the thought that if I rested most of the day I would be refreshed enough to still clamor out as a family to the rodeo.

It was not to be. I continued to struggle through the day, and at one point voiced my frustration to a friend. She was quick to remind me of a truth that reigns thickly throughout my days. It’s not just me that lives not knowing what I’m going to be able to do tomorrow; none of us are guaranteed the tomorrows of our best-laid plans.

So how do we reconcile with that? The only answer is that each day has to be an opening of our hands, prying our fingers off of our own wants and desires, and instead asking, “Lord, how can I best give you glory and honor today? This can only be done by keeping our eyes and hearts on Him. We may see our days don’t look like we imagined, but the gift of that is the joy we find when we are in full surrender to God’s will for us.

My weekend didn’t include the pumpkin patch or the rodeo, or any of the house projects I wanted to work on. What it was laced with was grace for each moment— the ability to cozy up in a comfy chair and watch a movie at the drive-in with my people. The strength to show up to church to help serve and then soak in the worship and the message that clearly spoke to the things I’m walking through right now. The weekend allowed me the time and awareness to walk through some difficult circumstances and conversations with some of my littles. It didn’t look at all like I had planned it, but it looked like exactly where God wanted me to be, and I was there for it.

Surrendering our days takes intention, and sometimes it might feel like disappointment, but when the end result is us doing what God most wants us to do, it brings an immense amount of joy and satisfaction as He blesses our coming and our going for the ways it honors Him.

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The Slow Fade

Hannah

Moving methodically around each raised bed of my garden I parted prickly leaves to get the clearest view where any new produce was ready for harvest, or any weeds that had sprung up among my vegetable plants. I plucked thin blades of grass and clover-looking leaves attached to flexible stems that had popped up since the last rain. I counted the pumpkins that were forming and twisted a cucumber vine back around its trellis. I was snipping off young okras when I noticed the difference, and it was profound.

Standing tall right between the towering cornstalks and the fuzzy buds of okra there was a different plant. Its stems were a rhubarb red, and flat pointed leaves grew abundantly from matching branches. As I examined these plants I noticed the leaves were close, but shaped differently than the neighboring okra, neither did they have any evidence of bearing anything of edible value. That’s when it hit me. These were weeds! Standing just as tall as the okra plants, and almost in neat little rows, it was clear why I had thought these had come from the seeds that I planted. I had been deceived from the time of tiny seedlings to these now towering plants.

I grasped the thick woody stems and yanked, but no matter how hard I pulled, most of them would not budge. The ones that did come up had impressively massive roots.

With these crawling tentacles beneath the surface of the soil I had to worry about how entangled they might be with my healthy plants, and many of them I had to just hack off above the ground, knowing they would need to be watched closely for regrowth. I was frustrated with myself that I had not noticed them and put a stop to them when they were seedlings. That made me realize how much this is like us missing the mark of God’s design in our lives.

When the wrong things we choose to do are disguised as something good; healthy green leaves in straight lines, it’s easy to overlook them. They creep in, and unknowingly we water and fertilize them, allowing the roots to grow deep and take hold. By the time we recognize there is something that shouldn’t be there, it is already so tangled around the healthy roots that it is sucking the nutrition from the fruit that is growing, and there is often no way to remove it without casualties.

So how does one prevent this kind of sneaky invasion? We have to be attentive, distinguishing what does not belong in our lives and uprooting it before it takes hold. The best defenses we have are spending time regularly in God’s Word, and faithfully in prayer, as well as having friends we can trust to hold us accountable; then we will be so immersed in truth that anything not of Him will be easy to recognize.

endurance

Heavy

Hannah

The past few weeks have felt HEAVY. One of my dear friends was diagnosed with lymphoma. Chemo has started, and with it the constant fight against weakness, sickness, feeling worse than the actual cancer makes you feel. It doesn’t seem fair.

Another of my friends was also diagnosed with lymphoma, and we are in the waiting of what treatment is going to look like. A period of time suspended, feeling strangely well despite the cancer that has invaded many corners.

My sweet friend with ALS had a bad fall and ended up with a broken shoulder. A long road ahead of healing and rehab and wondering if strength will come back enough to return to her home, or if a new, harder season is beginning.

Friends with children who are trudging through broken places, with exhausted parents who aren’t sure where to turn next, who just want to shoulder these trials so their children don’t have to.

My kids are struggling with some painful battles, and I have to stand back in silent prayer and watch them fight through it, knowing there is nothing I can do to take the pain from them; it’s a road they have to walk.

My husband is on several weeks of travel, which always feels lonely and scary and takes a cumulative toll on my strength. And of course it is always when he is away that Murphy shows up in all the ways like car trouble and kid injuries and leaks under the kitchen cabinet.

It all feels so heavy; suffocating at times. Multiple times this week I have found myself in tears, overwhelmed by the sheer weight of it all. Sometimes I have forgotten my /first/ defense is to reach for my Heavenly Father. I finally remembered that in a simple prayer yesterday; “please send help.” I’m sure you know even before the end of this sentence that of course God has shown up in the ways I knew I needed, and even the ways I had no idea I did.

He has given me the energy to go visit my friend between chemo treatments, the simple presence of each other’s company being enough to reassure me of God’s presence in this story. And a smile that even in his weakened state he cut the grass and welcomed me with my own parking spot. Daily graces.

My friend with ALS does not have much of a circle, and she has spent many long days and nights sitting alone in her hospital room. God gave me the strength and the creativity to go spend some time with her and to decorate her room with color and love, as my own friends have done for me.

He has given me wisdom, discernment, and patience to assess the needs of my hurting littles, and provide the best support I can at the right times. He has given me the privilege of coming before the throne in prayer for all of these things.

And all of a sudden, with praise music playing in the background, and friends who are willing to show up both in person and in prayer, the anxieties of my heart melt into deep gratitude for all the ways I am held and carried, and the ways I can hold and carry my own people.

As I cracked the book of my quiet morning devotion today, the words specifically chosen for this date wash over me like the healing balm that they are: “Come to me, all of you who are tired and have heavy loads, and I will give you rest.” Matthew 11:28.

Another daily grace, God whispering my name, saying “I see you. Let me carry your heavy loads.”