Author: Hannah

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FOMO

Hannah

As this year’s backyard vegetable gardens have started bursting with tomatoes and herbs and every size and color of squash the past few weeks I have found a gut punch creep in when seeing the ripe harvests sprawled across social media. Gardening makes my heart sing. The fresh air in my lungs and the weight of the musky earth beneath my fingers just does something so good for my soul. Only this year it didn’t.

This year as the frosty months neared their end and it was time to drop seeds into plastic cups of soil I was neck deep in my blankets desperate for endurance and relief from debilitating pain. As I considered the planning, planting, tending, weeding, and picking that would go into my garden again this year I had to swallow the hard pill that my body was not going to have strength to do it this time. The planting weeks came and went, and I was still in bed fighting for more.

Every time I glanced out my window and saw the barren garden beds sitting empty of their Springtime sprouts it hurt my heart. I decided it made me too sad to stare out at boxes full of empty dirt all summer, so I had my wingman take me to the store and I chose packets of flower seeds in beautiful colors and patterns. I summoned the energy to rake through my garden beds and pluck the stray weeds from the tilled soil. The packets were torn open and sprinkled across the soft soil and covered in compost. Finally I gave the ground a thorough soaking with the hose, and collapsed back into my bed anticipating what would grow.

It didn’t take long for small green stems and leaves to start pushing their way into the daylight. I was thankful something was growing, but as I scrutinized the growing plants I could not tell the difference between something I had planted and just another weed, and I started to doubt if anything worthwhile would be coming from my garden this year. That was about the time I saw the first post of a friend showing all of the produce she had pulled from her garden, and I felt sad and resentful and just really missed working the earth every day.

I finally had the strength one day to go out and have a look around. Picking my way around the lumpy landscape to get to my garden beds, I could suddenly see past the tall tangles of green that had taken them over. Dotted among the foliage were colors; orange, pink, yellow, purple. As I took it all in I felt the Holy Spirit whisper to my tired heart, “this beauty is for you.” A hug that gathered all my disappointment and not feeling good enough and wrapped it up in grace that extended beyond what I could have imagined.

Those simple flowers in their elegant gowns were the reminder I needed that this life will not always be what I want it to be. There will be places I fall short and mountains I cannot climb, but in place of those if I look in the right direction there is so much beauty to be found. Beauty that says I am still worth it and I am deeply loved. I may not be bringing in baskets full of cucumbers and zucchini to prepare for my family this year, but every time I look out my window at the messy tangle of green that has taken over my garden I see those beautiful colors standing tall in all their glory and I know that I am seen and known and loved. So are you, my friend. In your deepest disappointments things may not look like you wanted them to, but look around and you will find that there is still beauty to behold.

PS- for those of you wondering what on earth FOMO means… fear of missing out 😊

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Permission to Mourn

Hannah

July 14, 2011 Was the day I entered the wildness of grief, and I learned in order to get out you must go through.

As much as I’d like to tell you that grief will be orderly, neat and tidy, predictable, and unfold in five stages, it will not . Grief expresses itself in surprising and confusing ways. You must give yourself permission to mourn; you must choose to heal instead of choosing to stay stuck in that spot. You must choose to move forward.

I have had to decide to live many times since in the face of my daughter’s death. It’s a decision you will have to make too. Not just once. But over and over again choose life. Say yes. Life has other plans for you too.

Grief is wild and messy and unpredictable and uncertain and ever-changing and unsettling and unnerving.

There may be times when all you want to do is sleep, and there may be other times when you can’t sleep at all. There maybe be times when you can eat and eat and other times when you have no appetite at all.

When your arms physically ache to hold your beloved , when you have heart palpitations and stomach pains and fight to keep your balance, this too is grief.

You’ll think you are going crazy. You are not. You have entered the wilderness of grief. And in order to get out you must go through. You must give yourself permission to mourn.

It’s in the telling the story of what happened over and over and over again that you are able to see and come to know the truth, the magnitude of what has happened.

It’s important to comb through the details. To relive the sights, the sounds, and the smells. Go ahead and ask “Why if, and “Why didn’t I,” and “if only.”

Make sure nothing is off limits. Look in every corner. In every crevice. Turn over every rock.

So that nothing is secret or hidden. So that no part of the experience is hands- off or locked behind a closed door. Allow no part of the experience you’ve lived through to have any kind of power over you. Walk through all of it.

And yes, it’s painful. Especially at first.

But keep on telling your story. Over and over and over again.

And after much time has passed, and you’ve told your story more times that you can possibly remember, you will come to the day when you begin telling it again. Like you’ve done so many hundreds of time before, because you know that telling the story is a path to healing.

And you discover that you can’t tell it. Not one more time. You don’t have the energy or the desire, or the strength, or the need to tell it one more time.

You just can’t do it.

And with your exhale you say to yourself, this is what healing feels like.

I invite you to sit down in the chair next to me. And when you are ready to talk I’ll listen.

To all of it,

Permission to Mourn-Tom Zumba

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Rushing the Last Breath

Hannah

This last week I wrestled through some of the highest highs and lowest lows of being a mom. I pleaded for my children’s safety and their salvation. I pushed myself physically and still fell short of the standard I held myself to as the nurturer of my family. I wrestled the bone-shaking chills and pain of pneumonia and of infection contracted during my recent hospital stay. I saw the toll of caring for me in the deep, tired lines around my husband’s eyes, and I spent hours praying without fully having words; begging for mercy, for redemption, for a soft heart, for a miracle. I laid curled in a ball, trying to will the wrenching pain of muscle spasms away, and pushed down panic at the weight around the sharp daggers that tore at my lungs with every inhale. And I wanted to quit.

I begged for God to take me. I considered the process available to hasten one’s demise once they are labeled with a terminal diagnosis. I even imagined what I might still have the strength to do in order to put an end to it myself: the bone-crushing agony of it all. The very core of my being downright cracked to pieces and threw the white flag like a penalty on the gridiron. Despite the guilt it was coupled with, for a brief time all I could think about was having a way out; an end to the pain, the frustration, the burden that I know my loved ones carry because of me.

As I wrestled and fought through these overwhelming thoughts that I didn’t know what to do with, I cried out for help. What came to my mind was the story of the man who couldn’t walk being lowered through the roof by his friends to get him in front of Jesus. At first I did not really understand how this related to me and the oppressive suicidal thoughts I was battling. I was not asking for a healing miracle, I was just tired of fighting and feeling like a burden to everyone around me. The more I thought about the story though, I realized for the first time that maybe this story is less about the man and more about his friends.

Maybe the man who couldn’t walk was tired of fighting too. Maybe he was tired of having to ask people to carry him just to get where he wanted to go. Maybe he was weary of asking for a miracle to which the answer was no. Regardless of where he was emotionally, he allowed his friends to walk right into his brokenness. He called out for help, and let them use their gifts to meet his needs. They literally cut apart someone’s house to get their friend the best kind of healing they possibly could. That is absolute passion on his friends’ part, and a great big dose of vulnerability on his own part.

This story I have heard over and over since childhood suddenly took on new meaning to me. I felt challenged to resist the urge to rush through my suffering, and to instead allow my hard path to crack me wide open and let vulnerability be the fertile ground for new beauty. By trying to control the timing of my own death, I would only rob those that love me the opportunity of meeting me in these hard moments and extending the love that has carried me again and again through these deep valleys. Pondering this new concept, I realized how much this already has happened, which further encouraged me for the days ahead.

Being vulnerable opened the door to kind friends showing up to pull the weight of my daughter’s grad party that I didn’t have the strength to make happen.

Being vulnerable allowed for the most sacred moments of love and prayer at my bedside in the ICU, even before I was aware.

Vulnerability has provided opportunities for precious times when my dear friend sits with me- no matter how haggard I look, or how many days since I’ve been able to wash my hair- and we are ushered into holy presence as she reads my favorite scriptures and prays over me.

These moments matter. Our lives, our stories, and our suffering all matter. When we step out from hiding behind our privacy or our embarrassment or our shame over feeling the big feelings we feel, we open our hearts and our lives to experience the richest, most meaningful moments this life has to offer.

When we are asked to walk a road that feels impossible to walk, it does not feel natural to open your heart up and share that pain with the people around you, but I’m telling you it might be one of the most healing things you can do for yourself. It also gives validation and purpose to the people waiting in the wings to use their gifts to help you. It can be a beautiful, painful story that changes hearts and forges friendships and gives so much glory to the author of our stories.

Jesus is well acquainted with suffering. He walked the hardest road so that we can find hope along our own hard journeys. Be brave enough to open your hands and hold your story out to those who are ready to walk alongside you. You will find strength you need to keep going, help you need to make it to the next step, and you will find kinship in the broken hearts who thought no one else could understand the road they are walking.

Hastening our suffering or skipping ahead to our final breath was never what God intended. But along each step of our good, hard journey, God will meet us with his beautiful grace. It is not a mistake; his power is strongest when we are weak. (2 Corinthians 12:10). Hold on friends. Choose hope.

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To My Son on his 21st Birthday

Hannah

How do I write a letter to a 21 year old who used to fit in the crook of my arm with ease; the one I rocked and bounced and drove back and forth with for hours and hours when he would not stop screaming in the first weeks of life? How do I acknowledge adulthood to the little boy I taught to sing his ABC’s, and make himself a peanut butter and jelly sandwich? (Wellll, we are still working on that one😉) How do I give permission to soar to the little sweetling that used to look back just to make sure I was still safely behind him?

As I rise to look my blue-eyed-boy in the eye, I see the reflection of each of these moments, big and small. The insignificance of how many months old you were when you walked. The monumental moment of greatest joy when you shared that you’d given your life to Christ. The skinned knees, the baseball trophies, the nightly kisses on the cheek that continue to this day. The victories and achievements, as well as the falling short and the battles. All of these tiny moments making the whole amazing you, and the joy and enthusiasm and determination that you bring to this world.

I am proud of you for letting each moment, whether easy or excruciating carve you into who you are today. I know it does not stop at adulthood; you have many years and many more small moments that will shape and change who you are. Promise me above all you will cling to your faith in God, you will be an advocate for what is right; standing up for those in need as you always have. Those truths I whispered to you in bedtime’s drowsiness, those songs I sang; keep them tucked away to always lead you back to where you came from. As you stand at the brink of this new ridge in your life, so much behind you, and yet such a beautifully immense expanse widening your eyes in front of you, I pray you remain anchored to that which is love and truth and family, and that you F L Y.

I love you, Jacob Andrew; the boy who made me a mama.

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The Day My Dentist Cried

Hannah

Soon after my latest release from the hospital, I had a dental cleaning scheduled. I wrestled a bit over whether or not to go; it is one of those things that seems a bit irrelevant when you’ve just been placed in hospice care and told your time is limited. In the end though, since I had scheduled the appointment 6 months beforehand, it seemed easier just to sit through getting my teeth cleaned rather than trying to have the awkward conversation about why I was canceling. So I went.

The dental tech asked me all the usual questions, and asked if there had been any changes or updates to my health situation. I guess I didn’t get out of the awkward conversation after all. I told her I had been admitted to home hospice a few days prior. She paused her typing to look up at me and compassionately replied, “aww, and you still came to this today.” I wanted to say that it was important to me to have a clean, shiny smile for my funeral, but not everyone uses dark humor to cope with hard things like I do, so I just kind of shrugged and smiled. 🙃

When my teeth were cleaned and polished, and had been examined by my dentist, I was awkwardly climbing out of the deep chair and gathering my things when my dentist cleared his throat and seemed to stammer over what he wanted to say. He motioned toward his dental technician and said, “she told me about what’s going on. With the changes in your health, and, you know, hospice.” The gentle, quiet man I’d known only for a year reached for my hand and cupped it in both of his own. A small torrent of tears spilled over his lashes and made a thin trail down the aging creases of his middle eastern skin. He seemed to be grasping at what to say next, and then all at once it tumbled out with a fresh splash of tears. Still tightly grasping my hands, he gave them a little shake and said “Be brave, ok? Just be brave.”

Completely caught off guard by his emotion I found myself struggling for what to say in reply. In the deepest crevices of my feelings it hurt that he was he was hurting because of me, and some part of me ached to alleviate that. I slid my cool, smaller hand over his warm grasp, and hoping to convey a million things that did not seem the time and the place to say, I smiled and replied, “I will. I am not afraid.” Not even knowing him well enough for a hug, I proceeded to turn my attention to the bag of small dental samples being extended to me, chose a new bright pink toothbrush from the line up, and then made my way to the front desk where the eager young receptionist beamed, “would you like to go ahead and schedule your next 6 month cleaning?” My mouth twisted into a half grin, not sure if she was being sarcastic or not, but when I realized she was not I enthusiastically replied yes, yes I would like to make my 6 month appointment because one, I was not about to explain my sad situation once again, and two, I am a white-knuckled holder of hope and I have every intention of showing up to that appointment 6 months from now.

In the privacy of my back seat I exhaled the emotion of it all, and lamented over how complicated and painful and just plan sucky this whole situation is. It is sad that I am sad and my family and friends are sad, and I feel like I spend a lot of time trying to mitigate that, but when people who hardly know me roll tears over my story, it just seems downright unfair. On this day of seeing the ripple effect of pain in this world, the greatest light I could cling to was to repeat to myself over and over the words I know to be trustworthy and true, “He is making all things new.”

I hurt when my story causes others to hurt, but I believe God has chosen each and every person that has intersected with my life. Our stories are woven together with so many threads entwined. I hope that to whatever extent we have interacted it will be used to bring hearts nearer to Christ, whether that’s through a lifelong friendship or a brief hand held in a dentist office.

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Twilight

Hannah

Today a nurse and doctor from hospice came out to my house and assessed my condition and the things that have declined for me over the past few months and weeks. We talked in depth about my goals and my family’s needs, and the reality of the days ahead of me. They interjected hard conversations with compassion and kindness and humor, and in the end as they admitted me under home hospice care, I felt as though I had been given a great gift rather than something to grieve.

How perfectly that word describes the jumble of days that has been this week… “the period between daylight and darkness.”

Thank you for hanging in there with me this week. I realize now that I dropped off the planet in the middle of conversations, appointments, and even in the middle of uploading a photo to Facebook! I know many of my friends and family members were wondering what on earth was going on and why I wasn’t answering.

Rendition of a photo I posted this week without knowing it. No one knows what it is… to me it looks like twilight.

This weekend my respiratory drive decided to take a vacation, and my family found me unresponsive. For my medical peeps, I had a GCS of 3 when paramedics arrived. I spent the first part of the week intubated in the ICU.

In the haze between sedation and full consciousness I was so blessed to know that some of my dearest people were there with me praying over me, reading scripture over me, and just holding space for me on some very scary and unsteady ground. Unable to talk, all it took was me scratchily scrawling out a name or two on a piece of paper, and my people came running to be by my side. I am so incredibly thankful.

My medical team worked hard with me, but it was obvious my body was tired. Each time they turned off the ventilator to try to get me off of it, my chest remained silent, and they had to turn it back on. What changed this was overhearing my husband ask what the next step would be, and seeing my doctor motion to his neck that I would get a tracheostomy. I scraped up what fight I had left in me and scribbled out “try breathing again.”

For the next hour I breathed, but it was like trying to come up for air when the pool cover has already been put back on. I fought and fought, but eventually I heard the doctor order the medications be drawn up for rapid sequence intubation; they were getting ready to intubate me again. Somehow in that moment of defeat I sucked in a thin stream of air, and then another. Little by little I was able to take each next breath on my own until I was finally resting back against my pillow, only a bipap mask supporting me.

I made it very clear to my doctors that my daughter was graduating high school on Thursday, and I would be leaving the hospital by then with or without their blessing! Thankfully my team was very supportive and worked hard to get me out of there in time. That seemed an impossible feat at the beginning of the week, so my heart was overjoyed to be able to celebrate with my girl.

Sola Gratia!

I was there to listen to her beautiful singing voice peal across the arena in perfect harmony, and my heart sang. I was there to hear her name announced as she walked forward for her diploma, and my pride thumped swollen in my chest. I was there to giggle at the cute, triumphant face she made as she walked by the cameras with her prize in hand, and my spirit soared. The joy of the Lord is my strength, and he truly has shepherded me through some of the deepest valleys and the highest mountaintops this week.

I also delighted in the fact that my little sister and a few of her littles drove out for the graduation and I was able to spend time loving on them.

Seester Love
Thankful for my girls helping me get fancied up! 💕

This will be the way forward for now, and we are grateful for the help to better manage things that have gotten frightening and difficult, like my weakness and breathing. I am grateful for this roll in seasons that brings these beautiful blue skies and warm breezes; ready to soak them all up with my people! And I am thankful for each of you who have faithfully walked us along this journey in so many ways. ♥️

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Hard Questions

Hannah

I was using an unexpected burst of energy to shuffle things around in my garage, attempting to organize the means of the DIY adventures that call to me on my stronger days. I must have been deep in thought, because the abrupt swinging open of the thick wooden door to the house startled me. A tear-stained face appeared, begging companionship. “Can I please talk to you?” “Of course,” I replied, and took a seat on the striped padding of our wooden bench. I patted the seat beside me, and there was an eruption of sobs.

“I just really, really don’t want you to be sick. I don’t like it, and I would rather die so that you can live a happy life.”

I was caught off guard by the heaviness of the situation, and as the lament continued I silently prayed for the right words to comfort this tortured soul. How do you answer the questions for which there are no answers? I was reminded of my notebook full of gratitude; all the beautiful and miraculous that is found woven through the mundane ache of every day.

When the slew of bemoaning faded into hiccuping sobs, I spoke. “Oh sweetheart, I /am/ living a happy life. I love getting to be here and be a wife and a mom and a friend, and my sickness will never take that away for me.”

“But why doesn’t God heal you. He can! Why doesn’t he want that?”

Admittedly it is a question I have also asked from time to time, but I gave the answer that has been whispered to me on repeat as I have studied similar stories of suffering in the scriptures. What if my suffering is the way into a greater love for God and his people? I have found that the process of walking with him through these deep valleys is teaching me how to better love and care for others. Maybe if I was not sick I would not know how to do that.

Not that I have readily accepted the hardships in my life. Not by a long shot. I have had my own sob sessions, wrestling long and hard with God, desperately searching scripture and asking really hard questions. I have waded through grief deeper than I thought I could survive.

The truths I have come to know, and that I shared on that dusty bench in my garage is that whatever trial I am asked to walk through, God will give me the strength to take each step through it. And if a terminal illness is what presses me nearer to his heart and grows my own to love others in a way that I could not have imagined on my own, then that is what is good for me, as well as for those my life intersects with.

Who knows, God may still heal me, but only if healing pushes me further into him. Only if healing accomplishes eternally what terminal illness cannot. These days my prayers are less for the removal of my illness and more for a greater number of days to love God and love people. I continue to press forward and fight toward that end; especially for my husband and my little people.

In the cold quiet of our garage that night, I explained that my present suffering is only going to increase, not ending until my death. Every day I am pressed harder into the story of the gospel, which allows me to fully trust the God who has numbered my days (Job 14:5), and to embrace the future of hope he has planned for me (Jeremiah 29:11). As I thank him for each new day, I search with intention for ways to leave a legacy for my children that will urge them to press into their Father God in their pain; to trust him with their hurt, and believe in him for their future.

He will meet us there.

Sola Gratia~ by grace alone.

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Sliding Into Home

Hannah

My youngest little turned to me a few nights ago and said, “Mom, I want to tell you something, but please promise not to be sad or upset.”

I assured him that I could handle whatever it was that he wanted to share, so he went on.

“When I was at practice today I saw a mom and her little boy on the playground. They were looking for something and then the mom climbed up and went down the slide and something in me triggered. I wanted to fall down on the ground and bang my head and cry.”

He slid his hand into mine, searching my face expectantly for my reaction. I think I did a good job of not betraying the chasm that cracked right through the beating of my heart. I smiled. I thanked him for sharing that with me. I told him I am sorry that his mom can not do a lot of the things other moms can do. We agreed it was hard and sad and unfair. And then I crooked-pinky-promised him that I was going to go down the slide.

Most kids get excited about a play date with friends, a new toy, the weight of a lemonade stand’s worth of quarters in their pocket… at the words that his mom would go down the slide with him, my boy’s face lit up like Christmas morning covered in a blanket of snow. “Actually?!” He beamed. “Absolutely. There are a lot of things I cannot do, but I can figure out how to slide with you.”

So transpired the day that we drove to the park, maneuvered the obstacle course to the top of the slide (because why just have simple stairs?), and made time stand still to the sound of my shoes squeak-clunking down the blue plastic slide that gave my son a moment of the most joyous normal that he could have imagined. He watched me slide, rode on my lap down the slide, and raced me down the double slide.

Even though there will always be things we miss out on together, I pray that every time he sees a slide instead of that painful trigger he will be filled with the memory of the day I said yes to reaching for more, challenging the limits, and grabbing hold of the joy that makes my hard story worth it.

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Holding Space…

Hannah

I have not had much strength to write as of late. I do often in my mind; if only my brain came with dictation so I could get it written down. 😊

I am here still warrioring on with each of you who bravely get up each morning and embrace the good and the hard of your own stories.

One small treasure that I have been reminded of in this string of hard-fought days is that thankfulness if the key to peace. When my mind wants to run with with worry, I am practicing replacing those anxieties with thanking my Savior for the miraculous as well as the mundane, and He has been faithful to pour into me a peace too thick, too rich with the serenity of it all that it can only come from Him.

Is the roar of worry drowning out your thoughts? Try it. When anxiety creeps in, start listing the graces of your every day, and you too will find peace.

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Endings

Hannah

After my current palliative care provider announced that they are dropping me as a patient I embarked on a search to find another group that would manage all the things that they had been for me. After many late night hours searching for providers, several interviews with prospects, countless phone calls, an amazing patient advocate, and a whole lot of rejection, I am left without the care that has carried me through these past few years. Palliative care is changing; they only want cancer patients because the reimbursement is better. They were managing my pain, my mental health, my nausea, and my breathing, and I do not know what or who is going to fill those holes.

Next I got a letter from my physical therapy company stating that they are shutting down at the end of this month. For three years I have had the most compassionate, talented physical therapist coming to the house twice a week to help calm my spastic muscles and loosen contractures through massage, stretching, and myofascial release. It has provided so much pain relief.

Two weeks ago I called to reorder my infusion supplies and had to leave a message. Nobody called me back, so I called them again this week. The voice at the other end of the phone said, “well it looks like it’s been too long since your last order, so we discharged you; you’ll have to ask your doctor for new orders.” The same doctor who will no longer see me.

I do not understand why everything that has been essential to my health is falling apart. We uprooted ourselves from Colorado to come here for better healthcare for me. Now all at once that is crumbling, and I am not sure what the next step is. I do not know if this is God saying He has something else for me, or it is time to stop fighting.

I am weary. I am frustrated, and I am confused. I am exhausted from trying to advocate for myself for all the things. I wrote down a list of each of my doctors, most of them specialists who only manage one particular issue like respiratory or GI. There were fifteen of them. I know for certain I do not have the strength to run around to fifteen different doctors every month to get my needs met.

This feels like standing in the middle of a tightrope where neither end can be seen. Unsure of whether to go backward or inch forward, not knowing what waits at the other side. Fortunately I know where to look; up. No matter how shaky my situation seems, or how far the drop is, I can count on my Heavenly Father to reach down and steady me with His tender assurance. He is the one who sees the bigger picture.

I greatly appreciate your prayers in these days ahead as we try to figure out the next steps. I know God will provide as He sees fit, and I am trying to focus on the quality of my moments with each of the people dear to my heart, and not stress about the rest. Easier said than done.