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Twilight

Hannah

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! 💕

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.

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.

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Fighting Hard Battles

Hannah

There is a saying we have probably all heard at one time or another that goes something like this: “Be kind, for everyone you meet is fighting a battle you know nothing about.” Compassion being one of the gifts I have been graced with, this quote always struck a cord with me and helped focus my thoughts on some important perspective through my early years. No situation has brought a more resounding agreement with these words however, than the one that hit closest to home.

His friends saw him become disinterested and standoffish; he started declining play dates in favor of spending time by himself at home instead of being the outdoorsy social butterfly that everyone was accustomed to knowing. They did not know that he was battling a suffocating depression.

His teammates saw him gain a lot of weight and struggle with his endurance and speed, and they teased him. They did not know that the medication that is keeping intrusive suicidal thoughts at bay has caused him to put on the weight.

He got in trouble for picking on one of his peers, and he was labeled as a bully and a “ring leader.” They did not know that he was relentlessly being bullied day in and day out and was keeping it to himself.

His classmates noticed him disappear and started sharing rumors that he had been expelled. They did not know that he was experiencing such toxic levels of stress that something was going to give, and so we stepped in to offer him the solace of homeschool; where he is now thriving.

His teachers saw him not give his full attention and best effort, and assumed he was unfocused and not willing to work hard. They did not know that nearly every minute of the day he was being tormented by the fear that today would be the day his mom’s terminal illness would take her away for good.

He got scoffed at for being too tired to go on a bike ride or run around outside. They didn’t know that for his entire life he has been sleeping on the floor by his mom’s bed to make sure she is ok, and it doesn’t provide the most restful sleep.

They saw his gruff, sarcastic exterior and chose not to pursue friendship; they did not know that those are just the masks he wears to protect one of the most tender, intuitive, and compassionate hearts they’ve ever known.

How many times do we jump to conclusions instead of loving big and giving people the chance to show us the beauty that lies behind the hard battles that we each fight? I am guilty of it too. Let’s not miss another opportunity to know someone incredible because we are too quickly assuming we know their situation. Take a chance; offer acceptance. You might be missing something big.

**This was posted with permission from my little man— one of the strongest warriors I know.

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Five Favorites

Hannah

Things have been a bit heavy lately, so what better time than to have some fun and do a favorites post?! I enjoy sharing a few of my favorite things every once in awhile; you never know when you might find YOUR next favorite!!!

String of Pearls

I first got a glimpse of one of these gorgeous plants online several years ago, and immediately tried to track it down and find out where I could get one. I had no success… until… my daughter and I recently stopped in to check out a new local houseplant store near us, and much to my delight, there she was! I am reading up on all the things about this little gem, and getting a spot set up so I can welcome one of these beauties home!

I have not had much of an appetite lately, but these Nerds gummy clusters never disappoint. They have a fruity, tangy flavor with the most delightful crunchy/chewy/gummy texture. I have only tried rainbow flavor; they have very berry as well, which sounds just as yummy!

Ok, I love a good creative activity to work on from bed, but am I the only one absolutely overwhelmed by the intensity of the detail in coloring books meant for adults? I mean, it’s supposed to be relaxing, but I get so worked up by feeling like it’s going to be two Christmases by the time I finish a page, that I get overwhelmed and abandon ship. Paint by Sticker though? That’s my jam! These designs are so cute and fun, and it’s totally feasible to accomplish an entire picture -or two- in one sitting. They end up looking so colorful and precise, and do not take much time, which is totally satisfying to having a creative streak with limited energy!

A quick glance around my house will reveal to the careful eye my love for all things Rae Dunn. I adore the simplicity of her designs, and her straight, alluring letter forms make me drool. I am increasingly pleased with the expansion of the kind of things she makes, and my mom totally nailed it when she found me the softest ever Rae Dunn blanket for Valentines Day. It is comfort and simplicity and beauty all in one, and immediately made the short list of things my little people are not allowed to disappear with from my room. 😊

This book by Karyn B. Purvis has been a game changer in my parenting. I wish I had found it 10 years sooner! As a young mom I didn’t know any better than demanding good behavior from my children— behavior that reflected well on me, but did not meet the soul needs of my littles. The idea of Trust Based Relational Intervention has turned my ideas and expectations of parenting upside down as it has taught me how to understand the heart of my kids’ behavior, not just the outward action of it. It has been empowering— for myself and for my children. Definitely one I will read and re-read.

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How Long?

Hannah

My own little Psalm:

How long Lord? Are things going to suck forever? How long will you be silent? How long will you hold back from making yourself known to me? How long must I do battle with my thoughts and be filled with heartbreak? How long does the enemy get to sneer at me?

Please tell me Lord! Remove my blindness or it will surely destroy me and the enemy will chalk up the win and rejoice in my downfall.

You have been faithful to me this far; my heart celebrates what you have done for me. I will continue to honor you, because you have been so kind to me.

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Jesus Take the Wheel

Hannah

For the past four years, except for my time in hospice, I have been receiving treatment from a palliative care group here in Ohio. Palliative care is similar to hospice in that it is primarily focused on comfort care, but in palliative care many patients still seek curative treatments, whereas hospice centers on end of life. Prior to being in palliative care I had several different specialists managing different aspects of my disease, which meant frequent appointments with little collaboration between specialties, and it drained me to my core. Palliative care was a very welcomed change of pace with the benefit of multiple aspects of my care being managed under one roof.

The first time I met with one of the doctors it was unlike any experience I had before. He asked me what my goals were, how I was feeling, what I wanted to do. I had never felt so seen and understood by a doctor. My health improved in their care, and they also asked me to be one of the patients representing them in their new marketing. They made a commercial with my whole family, and I appeared in their printed and online advertising.

This palliative care group gave me hope for leading as normal a life as possible, and were very responsive to any needs that I had come up. Then slowly over the months I felt less and less listened to. It was harder to get an appointment or to get a call back if something came up. I assumed they must have an influx of patients from all their marketing, and just had less resources to go around.

Near the end of 2022 I was told by one of my palliative care physicians that they were closing at the end of the year and wanted to give me time to find a different care provider. We began the search looking for another group that would focus on comfort and manage as many aspects of my care as possible in one place. The first group we liked came out and did an assessment and shared with me the things they could provide for me. My follow up appointment was scheduled, and I was feeling really confident about the future with this new healthcare team.

Suddenly a few days later I got a call that this group could not take me on because the doctor was not comfortable managing the medications I am on. This seemed a little strange for a palliative/hospice organization, but I took their answer and started looking for a new group.

A Nurse Practitioner from the new palliative care group came out and did a similar assessment. She apologized for what happened with my current provider, and said something about rules changing about medications and how she hopes their medical director will be willing to look past how I look on paper and hear what she has learned from being with me in person. That’s when we learned my current palliative group is not closing like they told me; they’ve decided to change what type of patients they see. They want patients that are, and I quote, “a slam dunk” for palliative or hospice care, such as cancer patients. “As you know,” I was told, “your condition is more rare and you are so young.”

What I gathered was that I don’t meet the criteria for the ideal palliative care patient. You can’t see my disease like cancer, only it’s affects. I don’t know if laws changed about what treatments can be provided for different types of patients, or if my group made changes internally to what they want to provide, but either way I don’t understand why I was not just told this up front instead of being deceived into thinking something else.

The NP left my house telling me she would talk to their doctor about me that day, and would call me at the latest by tomorrow to let me know if they would accept me as a patient. After five tomorrows I called them back, and it was not a total surprise to hear that they also will not take me on as a patient. It was suggested that I seek out a pain clinic.

Not only have my past experiences with pain management clinics been downright agonizing, but that means also needing to find someone to manage my breathing, someone to manage my nausea and weight loss, someone to manage my fluid infusions, and someone to manage my mental health. I literally do not have the strength, will, or stamina to go back to having eight different specialists that do not communicate with each other, and spending my days running back and forth to appointments day after day. I simply do not have it in me.

The way forward that I can see right now is to wean myself off of my medications, discontinue my tube feedings and fluids, and let my chariot come whisk me away. I am broken by the dysfunction of the healthcare system that once seemed to offer so much hope and assurance. I’m crushed to know there will be many others out there unable to advocate for themselves, unable to stand up and survive a system that wants to just exhaust you to death in a swirl of confusion and misinformation. I’m just sad and empty, and I cannot run on empty.

I know that this does not come as a surprise to God. He knew all along. I am confident He will meet me, whatever the road forward looks like. I do not like walking into what I cannot see, but I trust I have a Savior who sees all and will keep me in the palm of his hand.

What drew me to this group…

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Waiting

Hannah

For months I have been praying about a situation, asking God to clearly show me His will so that I would have peace and assurance in making a difficult decision. Admittedly I grew a bit frustrated and impatient as I sought the right answer and did not hear or feel one way or another.

I am a planner. A list-maker. A lover of straight lines and hard-core committed to doing things ahead of time instead of waiting until the last minute. Ha! Well, joke’s on me! Do you think God in His infinite wisdom knows this about me and perhaps wanted to work on my heart to teach me to be still and trust Him and His timing? *Sheepishly nodding my head*

Days ticked into weeks rolled into months and I entered the week of do-or-die, where I’d normally be in full blown panic mode. I feel like a lot of times I have gone ahead and jumped the gun; made the decision myself and put things into action. Strangely this time I felt a certain peace in waiting, knowing I had not yet heard the confirmation I knew came from waiting on God to move. So I waited. I reminded God why an answer sooner than later would be better for allll the reasons, but I waited.

He kept His promise from Jeremiah 29:13 where He said, “Then you will call upon me and come and pray to me, and I will hear you. You will seek me and find me, when you seek me with all your heart.” Down to the wire the answer came through. Clear as day, and from multiple different places He affirmed the decision I was to move forward with. One of the confirmations came in the form of a literal hand written note. There was no denying it.

Not only that, but I thought sure things would be screwed up from waiting so long, but every single piece fell into place with impeccable timing and not a moment late.

There was such a humbling in realizing God had it under control the whole time. He was not panicking. He was not making a mess of things by waiting until the last minute. And friends, it has been beautiful.

It has been beautiful because I know without a doubt I am walking in God’s will, and with that comes the assurance that He will bless this, because it was His idea not mine.

In what ways are you challenged to wait on God to move? Is it hard for you like it is for me? Us type A’s, we like to be in control and on time, and boy hardy is it a difficult, but so rewarding practice to be still and wait. Remind me of this the next time I’m ready to take things into my own hands, because I am sure enjoying the peace and success that comes from following what God wants for me instead of what my limited sight can see.