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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.


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Echoes

Hannah

Attempting to take my mind off of how much work it was to breathe, I started reminiscing about things I used to be able to do when Mark first met me. I imagined when he looked at me-the strong, physically fit young girl he met on the skating rink- he probably did not imagine that in only my 30’s he would watch me become weak to the point of barely walking, and needing help with many daily activities. During our early dates to sporting events, camping trips, and hikes, he probably did not fathom that in less than two decades he would be helping me to walk up a step or two, and many of our “dates” would become spent at doctor’s appointments or yet another night in because I can’t leave my bed.

For a moment my heart fell, and I began to let sadness and regret seep in. In that same instant I had a picturesque vision of all of our lives in a snapshot, and I realized that none of us are quite doing the things we used to be. I remembered we all eventually will lose the ability to hike a mountain or run a 5k. We will all start to skate less laps around the rink, until eventually we have to give it up for things gentler on our aging bodies. This convinced me there is something for all of us to learn in our “quitting.”

When we quit lacing up our skates and trade them in for a walk around the block what will we take from that time we spent reveling in the scrape of our blades across the ice, the giggling when we fell and embarrassed ourselves, and the tight arm-in-arm grasping as we clung to each other to stable our stance? I decided I will take from it the gift of having experienced new things. The smile of knowing my husband learned I am adventurous and a jokester. The peace of knowing that we had some important talks on those camping trips and hikes, and we learned to trust each other and respect each other’s opinions.

Each of these moments may not repeat themselves for us; either because of aging or illness or just the world changing with time. What a joy it is to know that rather than grieving these things we can cherish each of the important things we saw and felt and learned. Those are the things worth clinging to.

Eventually for each one of us all that will be left is the echoes of the things we used to do. I want my echoes to shout of my smile, my compassion, the joy that I am able to find because I have surrendered my life to the God who made it. What will your echo be?

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Gifts of Grace!

Hannah

My readers are simply the best! A kind woman who must have seen on my favorites post about my love for zebra popcorn sent a box full of it to my house! It was such a fun surprise, and I want to say thank you so much, but do not have contact information for this person! So hopefully you will read this post and know how much joy and delight you brought to my day, and accept my deepest thanks for your kindness toward my family!

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Slipping

Hannah

Last night I was in bed not sleeping for various reasons and in my idle fidgeting I slapped a photo of my face-meltingly adorable son and puppy sleeping next to me up on social media. They truly are the cutest in all the land.

It did not take long before my phone made a little blip saying I had a message from one of my dear friends on the West Coast, undoubtedly seeing my post while going about normal evening activities because it is three hours earlier there. The time difference has often proven a welcome chasm between us during those long hours of insomnia.

For the better part of an hour my friend and I messaged back and forth, her asking about what’s new in my life and me divulging all the things. After a lull in our conversation she said that she was going to sign off and get some sleep. It came crushing down on me like a stack of cement bricks. I had not even asked her one thing about herself. How she was doing. What she was up to. If she was even ok. I was mortified and devastated. I felt so out of character, so disgustingly selfish, and then while I stammered my apologies I remembered why I had not asked. I had not asked because I forgot.

I did not forget because I was so anxious to blab about my hardly new life updates or because I was distracted multitasking. I forgot because my mind did not remember to remember. It is slipping.

Friends, when I do not call your children by their names that I’ve known for so long, it is because I am afraid I am going to say the wrong name. I was not so busy or distracted that I did not have the time to wish you a happy birthday or ask you how your cold was feeling or if you had gotten the call you were waiting for. You did not hear from me because I forgot. That laughter did sound forced as we reminisced over a funny memory; it really was nervous laughter because I was dashing through places in my mind trying to find that memory and I could not. And it’s terrifying.

Please know that my heart is still first and foremost for my God, my family, and my people. When I come across as rude or insensitive or dismissive, it is not for lack of not cherishing you as I always have— I simply cannot seem to string together all the pieces to remind myself of everything I am proud to be. Please remind me.

Tell me stories again and again for as long as it does not drive you insane, because when you take the time to remind me it allows me to relive that moment of joy with you once again for a short moment. The joy of learning your name. The joy of realizing all we have in common. The joy of knowing how deeply valued and seen and absolutely loved you are to me. Even if I cannot remember to say it, it is still there. Somewhere.

Blow up my phone. Grab me if you see me out and say hi. Remind me who you are and why I’m the luckiest to know you and then please keep being part of my tribe! Remind me of who I am and what I love and be relentless, because the forgotten space is a really lonely place to be.

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2023

Hannah

This New Year feels weird. I have largely guarded myself from it, but I guarantee that a scroll through social media will be filled with people geared up and ready to take new leaps and new adventures and new journeys, to reach goals set high and higher, and for those of us just crawling along right now it can feel, well, discouraging. This year my list of goals are small and right in front of me, but as I’ve pondered over the different places we all find ourselves in I have decided that sometimes the biggest leaps and bounds are actually the tiny shuffles forward. The one tiny point farther along than yesterday. The subtle movement that means you are indeed going somewhere even though at a glance it may appear you are sitting still.

Do not dismiss those small sweet shuffles, for you are part of winning a bigger battle, and it doesn’t happen all at once. It is ok if 2023’s resolutions are to stay awake a little longer, to read half a page, to wash your face… because my friend we are all pushing ourselves in the ways that we can to get to goals that can only be ours. Let’s link arms and cheer each other on wherever we are at, and enter this year leaping, shuffling, or crawling as one magnificent people that are going to shine bright in each of our spaces this year- sharing love, spreading faith, and finding grace and goodness in all the big and small.