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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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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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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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Fast Favorites

Hannah

It has been awhile since I have shared some of my favorite things, so this Fall Friday seemed Fit to do a Favorites post!

This is my favorite lippy ever! Not only does it do an excellent job preventing chapped lips, but it also has a little bit of a pretty shine to it when it is applied, which always feels fancy to me. I have only ever found it at the Big R farm stores in Colorado of all places, so I make sure to buy them out whenever I visit. I just did a search and found they are available to order at https://cvc4health.com/products/superior-source-lip-healer-lip-balm-3-pack.

These little caramel cremes or “bullseyes” pack so much decadence into one bite. I never have the self control to only eat one. Don’t go through life missing out on these!

My new favorite shoes. This may mean I officially dress my age, but I don’t even care because these babies make me happy every time I wear them. Amazon sells this for $50-&60, but I found mine on sale at Kohl’s for $35!

At first I thought these were just an Ohio thing, but I have now traveled and seen these in other states, so run, don’t walk to get yourself a bag of these. Hands down the best pretzel I have ever tasted! Their other flavors, not so much, but I do like their version of Cheetos as well.

I rented this book from the library thinking to read it to my youngest, but it turned out I was the one caught flipping through it for the second and third times. Funny title, but the words and pictures scratched across the pages are so tender and real and encouraging they speak right to the heart. Easily one of my favorites.

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Sink or Swim

Hannah

This week was the end of me. I felt like the last drops in my cup were sucked dry and I had nothing left to give. Frustration over my exhaustion and inability to keep up in the midst of daily hardballs left me convinced the best thing for me was to quit fighting for well, anything. Least of all myself.

As my body does, it decided another shut down was in order, and my digestion came to a screeching halt. This led to constant discomfort, and frequent vomiting even though I wasn’t eating anything. For three days I was in bed burning through barf bags or clutching a big metal bowl while at the same time trying to single parent my little people and see that their needs were met. I was not able to get up and feed them one meal, so they did without or got by on bowls of cereal and Halloween candy. It is heartbreaking to not be able to do the things I want and need to as their mom, and the volume gets turned loud on all the voices telling me I’m failing at motherhood… and everything else.

This is a lonely season of trying to build community without always having the strength to do it. This means long hard days scraping by and simply doing the best I can usually at the minimum amount. I long to be in a place again of having community to surround us and pick us up and meet us in the messes, because doing it alone is awful.

Despite my grumpy attitude and dismal outlook God showed up in the flesh of a friend who saw my frantic social media post asking for help and dropped everything to pick me up and not only see that I got back and forth to a small surgery, but while I was under she shopped for meals for my kids and stocked my freezer with things they could make in my absence. The “Just Show Up” mantra that I’ve tried to make part of my life song was so beautifully expressed in the serving kindness of my friend that day.

It is embarrassing now, but I felt so helpless I texted another friend and told her I had nothing left to give and she deserved better than me. I basically told her she needed to drop me like a sack of rocks because I did not have what it takes to be a good friend. Instead of stepping back she pushed in. She responded, “I’m not letting you break up with me. You can’t get rid of me.” I don’t know what I was expecting, but her response cracked a small grin across the weary furrows in my face, and the brick wall I was trying to build started to crumble.

Thumbing through the pages of my Bible I was brought to 2 Corinthians 10:5, which reminded me I am to take each thought captive in obedience to Christ. I heaved a sigh heavy with burden, gathered all my thoughts of overwhelm, anxiety, and defeat, and imagined placing them at the feet of my Heavenly Father. Peace washed over me; relief that these heavy weights are not mine alone to carry.

I was reminded me that I cannot control everything that comes my way, but that I can decide if my life will be marked by defeat, or by a patient trust in a Heavenly Father who loves me and knows where I am at every moment.

I cannot help but wonder who else is finding themself at the end of their rope this week. I wish we could all gather in solidarity and speak truth to bolster each other in our capacity to carry on. It always seems easier to encourage others than to encourage yourself sometimes. If you are in that spot this week raise your eyes up; remember that the hairs on your head are numbered and the birds outside the window are under the Lord’s watchful care. As we reflect on Him it is easier to be assured of His strength and less intimidated by the size of our problems.

God has promised us abundant life. I don’t want to miss that because I am tangled up in worry and frustration over circumstances that are not mine to control.

Here’s to the ending of a hard week and the beginning of a fresh one, Saturday sports games, Sunday morning donuts, and knowing that we do not have to be strong enough to carry our own burdens. Jesus has us on the hard days just as much as the easy days and beckons us to take up His yoke which is easy and His burden which is light, and he will give us rest for our souls.

“Even though the fig trees have no blossoms, and there are no grapes on the vines; even though the olive crop fails, and the fields lie empty and barren; even though the flocks die in the fields, and the cattle barns are empty, yet I will rejoice in the Lord! I will be joyful in the God of my salvation. The sovereign Lord is my strength! He will make me as sure footed as a deer, able to tread upon the heights.” Habakkuk 3:17-19

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The Unshakable

Hannah

Today it has been 11 years since we snuggled our little girl close and held her tiny hands as she took her last breath on this earth. Sometimes I am still so angry that I could not make her better. That’s what mamas are supposed to do; make things better. I had one big important job, and I could not do it.

Then I remember that WASN’T my job. I /wanted/ it to be my job; the job of being a mama that could fix things. Instead I was given the job of opening my hands wide of my own control. I was given the job of looking into the teary faces of three sweet, grieving siblings and teaching them to trust that God is still good, even in our hurting. I was given the job of white-knuckling a marriage that the statistics were stacked against because of the big trauma we went through. I was given the job of learning to grieve with hope; the hope of knowing that someday all will be made right again.

As I look back over these years I can see where I have been given the grace to grieve, the bravery to lament, and the courage to heal. I have learned that grief is not the absence of faith, tears do not negate our trust in God, and pain does not mean we are not saved.

Wrestling such a deep pain is so intimate. For me it has required clinging, grasping, watching, communicating. It has meant digging my heels in and standing firm on the truth of God’s word. Grieving with hope still hurts, but as I have clung to the unshakeable hope I have in Christ Jesus, and fixed my teary eyes on eternity, I have been given the freedom to wrestle and lament, and with it a deep-seated peace that I could have never found on my own.

Our precious Ellie Grace will always hold a part of my heart. I will forever wonder over who she would have been, and will ache for the warmth of her in my arms again. As these years tick on however, I will rest in knowing she is whole and complete; that she lived every single day here that was planned for her beautiful life, and that I’m surely the luckiest for getting to be her mama. 💜

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Blue House

Hannah

This hot summer has been brimming with opportunities, and through my delight in seeing my littlest having grown into shoes big enough for some life-changing new experiences I did not even realize that the very thing that brought so much joy and revival for him would be the thing to send my head swirling under the tepid waters of another grief wave unexpected.

Finally old enough for church camp we excitedly rolled tshirts and shorts into the duffel bag as big as he is, and lingered in the aisles of the dollar store choosing just the right snacks to share with the other campers who would become friends. We watched videos of what to expect, and excitedly counted down the days to when he would set out on his big adventure. My heart bubbled with anticipation for him as I prayed over the days ahead.

Finally it was time to drive him the 40 minutes out to where camp was being held, and he was ready as ever. As I heaved his bag into the back of the car I felt a surge of emotion I could not put my finger on. I pushed it out of my mind and slid into the car to see him grinning in the back seat. He looked solid and strong, a maturity I had seen blooming in the preceding weeks. His face was already tanned from days spent playing in the sun; a smattering of freckles beneath his fluffy shock of dark blonde hair. His eyes were bright with enthusiasm, and it was the smile he flashed at me that poked that emotion I had pushed away, and sent it raging to the surface. It filled my insides with gravel and sent my thoughts spinning. I knew exactly what had me feeling a little “off.”

Looking over my shoulder into the back seat I was staring at the carbon copy of his older brother, blonde and freckle-faced also at the age of 9 going off to his first faith-based summer camp. When we dropped our firstborn off for a week at camp we had the same joyful anticipation for him, but that week was the one that changed our lives in the most painful way, tearing from us something so sacred. The last time I picked my 9 year old up from camp I had to tell him his little sister had died unexpectedly, and I watched his whole world turn on its axis and shake every foundation he had believed in.

Somehow, without me even realizing it my subconscious had put all of these signs together, and the unease I had felt was a full blown terrifying fear that when 9 year olds go away to camp, terrible things happen. I was in fight or flight mode; my memories having strung together a warning of perceived danger.

I prayed silently across the stretches of tar specked pavement that cut through swaying wheat fields and sleepy towns. I prayed for protection, for freedom, for healing. I knew my thoughts were just tricking me, so I pushed them down and smiled as I helped my littlest man choose the top bunk and unpack his belongings for the week. As he stood tall for the obligatory first day of camp photo, I could not believe how grown up and how tender and small he looked all at once. We prayed again as I hugged him goodbye and all the way home I sung loud with the truth on the radio to drown out my anxieties.

Each night that I got to talk to my boy that week was such a balm to my soul, and this time I was the one counting days. Camp ended on a sweltering Friday morning, and I arrived right on time, fiercely ready to pull my little bird back under my wing. The parents all waited in scattered patches in the burning sun until we heard it; the low buzz of a large group of children walking toward us, smiling and skipping and hugging each other. It took me a minute to pick my boy’s face out of the crowd, but as soon as I did I let out a huge exhale I had unknowingly been holding; perhaps all week? I tried to control the tears that swelled at the rims of my eyes and pricked at my throat. Some part of me had still been waiting to know that everything was going to be ok.

I talked with my counselor about these events this week, and she shared something so enlightening with me. She put it this way: If you walk by a blue house and a dog comes out and bites you, it’s going to make you leery of blue houses. The next time you see a blue house you are going to feel afraid, palms sweating, anticipating the ferocious beast you met before. But not every blue house has a dog that bites. We can learn to pick out those blue houses, call them what they are or are not, and confidently walk by with our heads high because we know; this blue house is different.

Glancing in the mirror at my suntanned and thoroughly exhausted 9 year old, I thanked God to be bringing him home with joyful celebration, and I thanked him for the lessons of the last blue house, and the blessings of this one.

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Instead

Hannah

I am so sad.

With summer break upon us I’ve been feeling terrible for all the things I cannot do with my kids. I want to go hiking with them. Instead they get stuck at home all the time watching too many screens. I want to take them to the pool almost every day, and explore the national parks around us. Instead I’m puffing walking up the stairs to tell one of them goodnight. I want to have all their friends over for late night fires and s’mores on the deck. Instead I’m exhausted by dinner time and asleep hours before the rest of my crew. I want to plan an exciting vacation getaway and surprise them. Instead I’m having major surgery that will take all summer to recover from.

I want to scream. And a little teeny part of me wants to quit; wants to give my family the freedom to live unchained. This mess is not living up to my well planned out expectations, and I’d like a redo please.

My friends, I know so many of you live joyful and exuberant lives in spite of much pain. You live the story that you did not sign up for, and yet you receive that cup so graciously, with kindness and contentment that I long for. Please share your wisdom… what is it you do when you want to throw in the towel on your own race and trade for a different one?

Jesus, please help me live for /your/ expectations. Help me to be thankful for what I have instead of mourning what I do not. Help me to make the most out of my time awake, and not have guilt for the times I need rest. Help me to have meaningful time with my children, regardless of what we are doing. And Jesus? Help them understand. Let their hearts become soft instead of resentful. Let their disappointment develop deep character. Help all of us to trust you with our story and to use it to bring you glory.

Amen.

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Losing Focus

Hannah

Gifted an incredible gift to slip away just the two of us, my man and I took every opportunity to soak in the great joy held abundantly in the salty waters. Each afternoon he would tenderly inflate the vest to keep me afloat, and don his long fins to do the kicking for the both of us. As he gently pulled me along I marveled and squeaked with delight at the stunning colors and entrancing shapes of the sea creatures below.

One hot afternoon the winds had been stronger all day, and the choppier waves had churned up a hazy silt from the ocean floor. Just as we had done before, he held tight to my hand and pulled me along the surface of the water, snorkels upright amid the salty spray. This time I felt different. Even though my hand was in his, the murky water clouded everything from view, and when I looked straight ahead the sides of my mask obscured the rest of my view of my helpmate alongside me. As soon as this happened my heartbeat thumped frantically faster and I felt lost and panicked in the disorienting haze of the sandy water. Then I turned my face to the right, and clear as day I could see him right next to me guiding me along, and in an instant the throb in my chest slowed and a peace settled over me, knowing I was not lost or alone. Slowly though I would turn my gaze forward again only to be paralyzed repeatedly as his comforting presence disappeared from my view, and then look up again to see the comfort of his company right next to me.

This week I took calculated breaths as I tried to distract myself from the pain of a necessary procedure. With each new bolt of agony my mind would race through the what ifs, panicking myself into wondering if this would last forever. Then I would look up, and there squished in the corner where he could reach to hold my hand was my heartthrob, eyes locked, waiting to meet mine. Again that wash of peace and okayness would melt over me and quiet the pounding of my thoughts. As long as I held his gaze with mine I could do this.

There was where I realized… what a pertinent reminder; that when my focus is on other things I get lost, scared, and unsure of my direction. But when I lift my eyes back to the face that has never turned away from me, I find peace, safety, and belonging. I draw from that strength and it gives me the courage to keep moving forward, however foggy the future may be. Even though my Heavenly Father is right there holding my hand, it is I that has to raise my panicked stare and remember that with Him as my focus I have the courage to face whatever hard comes my way.

What about you; do you forget to look up when you’re in the panic of the moment? Do you find yourself looking for someone to steady in you? He’s always there waiting, just turn your eyes up.

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When Mother’s Day Wasn’t

Hannah

Today millions of moms woke up to hand-drawn cards and beautiful flowers, breakfasts in bed and cute little “What I Like Best About my Mom” papers from school. Moms woke up to the pleasure of the kids doing the dishes, and the distinctive taps of their tiny baby’s feet as they wiggle and turn in the womb. Moms woke up excited for this day and the joys it would hold, but what if you didn’t?

What if your story does not look like the Mother’s Day version written in the Hallmark cards? What if you woke up with an aching hole in your life from your mother passing away? What if you woke to the sight of all the days crossed off on the calendar that you had not conceived, or a counter full of needles and liquids, a longing attempt at being a mama? What if you saw your child’s beating heart on a screen, but never got to hold them in your arms? What if you have to share your children with another adult, and they do not get to be with you today? What if your child is grown and this date sends you counting the days since the last time they have wanted to be around you? What if you wanted to hide under the covers because you were so weary of the arguing and fighting? What if you do not know where your child is? What if the children you sacrifice so much for forgot it was Mother’s Day? What if you cradled your child as they drew their last breath; what then of Mother’s Day?

To the ones that woke up today and had tears and sorrow and grief… I see you. I hear the loud crack of your heartbreak as you wake up hurting on a day that is supposed to elicit such joy. I hear the echo of the emptiness where you grasp for what was once in your arms, or what you hoped would be. I understand your sadness and shame when instead of an Instagram perfect breakfast in bed, you are met with harsh words and an ungrateful attitude. I see the tally of all the hours you have spent pouring your very lifeblood into the littles in your life, only to have your circumstances not look like you dreamed they would. I hear the deafening silence as you sit at a familiar grave sight.

I hear you and I see you and I want you to know that you are not invisible. I know that the hard, painful threads of your story can be woven into something more beautiful than you have thought to imagine. I know that the One who holds your shattered heart is big enough to put it back together again. I know that this day brings a burden heavy to carry, but I also know that your current situation does not have to be the end.

Choose to feel those hurts and be transformed into the gentle, compassionate human that you are capable of. Choose joy and life and hope and know that even on this hard day that challenges your motherhood, you are created for something beautiful. Believe that.

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Mighty

Hannah

Smoke mingled with the clean scent of antiseptic as the ambulance doors were thrown open. A woman’s voice crackled through the radio following the long beeps of the station tones. “We have a call!” My partner’s eyes were wide with anticipation as she repeated what I was already hearing. We had been working on a training exercise at the fire station, practicing rescue of a downed firefighter in the midst of a woodsy blaze. The large rubber manikin that was our pretend victim lay heavily on the stretcher that was now needed for an actual patient; the victim of a horrific vehicle collision. Wasting no time, I jerked the straps off of our lifeless dummy and heaved him over my shoulder, all 165 pounds of him. Nudging wider the ambulance door, the whole battalion had eyes on me as the scene played out that would be retold for years to come. I, the tiniest on the department standing at 5 feet 2 inches and a hundred and five pounds marched with that dummy over my shoulder and chucked him into the empty garage bay of the station. Spinning back around I crunched through the gravel and hopped up in the passenger seat of our rig and we barreled down the road to my first trauma call.

That was the day I earned my nickname; Mighty Mouse. The story would be grinned about for years to come; the department’s smallest firefighter who manhandled the Rescue Randy dummy because she got her first real patient. A mix of adrenaline, excitement, and the hard work I had put in to keep up with everybody else had enabled me to perform that amusing feat that day.

Fast forward to a cold April day in 2022. My arms shake and spasm as I lift a stack of dinner plates toward the open kitchen cabinet. Overpowering my waning muscle strength, the stack of plates comes crashing to the counter, shattering the bottom plate. I bite my lip to hold back the moisture that pools in my eyes, and gingerly start gathering the shards while feeling like I am picking up broken pieces of my hope.

It is endlessly humbling and frustrating not to be able to accomplish menial tasks when I once let nothing stand in my way. My pride stings when I have to ask for help instead of being the strongest. It hurts.

I can only surmise that this is one of the greatest lessons I need to learn; that alone I am powerless, and need the unending strength that God in his loving kindness offers to me. So many times as I call out for someone to help me lift or move something I am reminded of my desperate need to call on my Heavenly Father for help. Do I always remember? Definitely not. But he is gentle in reminding me that I do not need to rely on my own strength, that he’s got me and all I need to do is rest in the power of his might.

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Fight On

Hannah

I have not slept much this week. Pain, my constant companion is especially rough right now- it’s searing edges too sharp to allow me to relax into slumber. In the lonely night hours that seem to drag on I have much time to ponder. I could count the ways I wish my life had turned out differently, or awaken to each gift of grace this pain has made me see.

This picture was after two nights of no sleep. I was ragged. Beneath the weariness though is such rich contentment. This day brought the joy of watching my little excel at his basketball game. Then I was able to pack a suitcase for my love as he prepares to leave town for work again. That allowed him the time to work on a big surprise that delighted our little people. The night was capped off by nibbling at delicious cuisine that I didn’t have to cook- my favorite! I was so thoroughly beat, but so full, and so thankful. The miracle in each of these small and sometimes mundane moments is not lost on me. I am fighting for each one, and will cherish each box I get to check, sleep or no sleep, because the joy of being present in these big and little snaps of time is truly the greatest treasure.

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The Feeling of Fading

Hannah

When I was given a terminal diagnosis I chose to fight for life. For time, for moments, for memories. Some days it is easy to do, and sometimes I am clawing and grasping at something that seems so pointless and out of reach.

Yesterday put me in a dark place. I had a doctor appointment about an issue that is fixable. Any healthy person would have walked in that office and been given hope for healing and a better quality of life. My third time in this office to plead for relief was met with the same disconcerted answers as before, even with the new information I brought. A doctor I have seen 3 times now, and he has not even laid a finger on me to understand what I’m going through because it is obvious he has already made up his mind that it is not worth it. I am not worth it. My condition is too advanced, there is not enough life to live to make it worth his time to help me. That tore me apart in ways I cannot describe.

I am weary. Every single day is so much fight, and sometimes it is hard to remember what I am fighting for. The memory loss from my brain surgery continues to torment me. It frustrates my family to the point of anger, and then leaves me feeling like I have done something wrong when really my mind is just tricking me into believing something different than everyone else. More and more I hold my tongue to avoid the embarrassment and the conflict of not remembering things. I nod my head and pretend to remember when I really have no idea, but it is the more peaceful path. That is not me. I do not hide.

My body is tired of the battle. My mind is tired of the battle. Some weeks that propels me to fight harder. This week it finds me burrowed under my blankets, hot tears burning scars down my cheeks. I do not know what the rest of my days look like. The only thing I know for certain is I have Jesus, and he is the one who has given me these days, so through my tears I pray he helps me to use them well. Feeling myself fading is frightening, and I don’t feel like I am courageous enough for the path ahead of me. I do know I am held though. Held on the easy days, and held on the days that seem impossible. Held in my determination and my hope, and held in my fear and my disappointment. He promises to carry me through the deep waters, so I pray he will carry me further than I can even imagine.

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White Flag

Hannah

Despite the assuringly positive comments I receive about my ability to tolerate high amounts of pain, I am not feeling it right now. For weeks now we have been chasing my discomfort with all the things that are supposed to help, and I still find myself awake, alone through the dead hours of the lonely nights, rocking and squirming in desperation as I seek even a short reprieve. This disease has large muscle groups locked involuntarily into forcible contractions that refuse to relax and allow me to enjoy the comfort of even a few hours free from pain. I keep telling Mark if pain alone could kill me, I would be dead. Please stand with me, plead with me, knock on the door of Heaven for a reprieve for my sake. I can tough it out through a lot of things, but I am reaching my limit.

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Open Hands

Hannah

I am facing a hard new corner of my story. If it is analyzed too much it quickly becomes scary, unmanageable, a mountain too big to climb. I am choosing to face this one differently though; with open hands. Hands open to whatever God has for me and /knowing/ He will make good come of it.

In a beautiful song, Open My Hands, Sara Groves sings the words that ring true in the depths of me right now.

“I believe in a blessing I don’t understand. I’ve seen rain fall on the wicked and the just. Rain is no measure of His Faithfulness. He withholds no good thing from us.”

-Sara Groves

I covet your prayers this week for peace and comfort over my family as we have hard talks and make tough decisions that I don’t feel ready for. Jesus will meet us there.

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Perseverance

Hannah

Recovery from this last brain surgery has been one of the most difficult obstacles yet. It was a big hurdle to get through having seizures and being on a ventilator and in the ICU right after surgery, but the challenges since I’ve been home have been a whole other beast. One that shook me a bit.

I was so excited and thankful to go home from the hospital, but I was not there long before we noticed something was really wrong. My short term memory was almost non-existent. Every day I would forget the day before, and often I would not even remember things from earlier in the same day. Entire conversations were deleted, things I had experienced earlier evaded me, and I often could not even remember what I ate for the previous meal, or IF I even ate. I remembered enough to know I was forgetting, and it was terrifying.

My husband is the very definition of steadfast. He would lovingly and calmly repeat things to me as many times as I asked, and would gently break it to me that we had already had this conversation or done that activity. Meanwhile I was curled up sobbing; broken that my husband was having to watch his young wife like this, and terrified that the rest of my days would be more of the same.

After a weekend like this my sweetheart reached out to my neurosurgeon, who unfortunately is a 2 hour drive from us. He has taken up my cause though, and would bend over backward for me, so it was no surprise that only a few minutes after leaving a message my hubs got a phone call from the doctor himself. Based on my memory problems and a handful of other symptoms I was experiencing my kind doctor explained I was probably continuing to have seizures, albeit small ones, but with enough frequency that it was throwing my mind and body into this blender of confusion. A treatment plan was initiated and they waited expectantly for results, but in my heart I was suspicious and saddened that this was truly the beginning of the end of my time here. I kept that fear to myself.

My love had a trip on the calendar way before any of this happened, so he somewhat reluctantly left me in the care of friends and family while he went on travel for the next week. That week was hell for so many reasons. It took several days to realize it had been a week since I had kept down any food. I switched to nutrition solely through my feeding tube, but quickly discovered all of the vomiting had displaced my feeding tube, so using it was not longer an option. I tried for a few more days to limp myself back to stable, but I could not even keep down jello or sips of sprite, I could only stand for seconds at a time before getting near to passing out, and my blood sugar was dangerously low. It was the last thing I wanted, especially without my wingman with me, but I had to go to the hospital for help.

It took some convincing for me to let them admit me again, but once I agreed to it they were aggressive about getting me sorted out, and I started to rebound quickly. With some IV nutrition and my feeding tube fixed, I quickly gained strength to be able to go back home. It was then that we realized that while fighting face down all week I had been too sick for us to realize that my memory was improving. Back home again I was able to remember things for longer and needed less reminders. One of my close friends had marched straight to the courts of Heaven and pleaded on my behalf, and God had honored her faith; he was healing the damage in my brain.

I will not go as far as saying that I am happy I had to go through all of that, but I will say amen and amen to my God showing his grace and great loving kindness in choosing to bring healing and restoration to me, and I do not believe he is done yet. I would not have chosen this path of suffering, but I will hold on because suffering produces perseverance; perseverance, character; and character hope. And hope has been the song of my heart through years of great challenges and life changing pain, and it will continue to be my heart song until my eyes finally gaze on the Giver of all hope.

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Mother’s Day Remixed

Hannah

For days my kids and I chatted about what we would do on Mother’s Day. Sleep in…snuggle up to breakfast in bed… go out to a favorite lunch after church…stay in playing board games… go out to explore the beauty of a new park.

All week I had been hearing the excitement of my littlest guy as he earned his own money to create a project at school that his whole class were each making for their moms. When he came home from school Friday holding a beautiful flowered gift bag he was vibrating with excitement over getting to give it to me on Sunday.

Friday afternoon we got a call that would demolish all of our weekend plans. Ever since my shunt revision surgery nine weeks ago I have been fighting infection in one of my incisions. My neurosurgeon has kept in close contact with me as I know have done multiple rounds of antibiotics to try to clear it up, and sent regular photos of my incision to document its progress. Unfortunately on Friday it was obvious the infection has gotten much worse and was not responding to the antibiotics. It is a dangerous place for it to be located as there is a very small distance from the end of the tube to my brain. We have given ample opportunity for it to heal itself to avoid further intervention, but Friday it became obvious that my neurosurgeon was going to have to step in.

My kind and gracious neurosurgeon requested that I drive to Indianapolis to be admitted through the emergency room. They would immediately start IV antibiotics and plan to take me to surgery Monday to remove more of the shunt tubing and hopefully eradicate the infection. My heart sank at the thought of another surgery, but most of all at the thought of being far from my family again.

It felt like I had a boulder in my stomach when I sat Colby down to tell him the news. As expected, his face dropped as I told him I would no longer be home for Mother’s Day. He sat with his chin in his hands and big tears silently rolled down his cheeks. “This’ll is the worst Mother’s Day ever, Mom.” I had to agree. It was heartbreaking to see his grief over being able to plan a special day for me. We decided we would have a welcome home/Mother’s Day celebration on the day I get released from the hospital, so he was given the option to give me his gift before I left for surgery or to save it for when I came home. He said he wanted to give it to me now so that I could take it with me to the hospital.

My heart will forever have captured the picture of him walking into the room so carefully and proudly holding the flowered gift bag that he had chosen for my gift. He sat by excitedly as I unwrapped it. Tucked inside was a small wooden frame carefully decorated in butterfly and flower stickers, and holding an adorable photo of my precious eight-year-old, holding a beautiful bouquet of flowers. The tears hung in my throat as I lavished thanks on him and gave him all the hugs and kisses. It was the most thoughtful gift ever. He made sure I had room to take it with me to the hospital.

My sweet girl Baylie also gifted me: a delicate necklace with the word “Hope” on it. Boy does she ever know!

Late that night Mark took me to the store and I picked a small gift for each of my kids so that they would have something from their mama for Mother’s Day. It was so special the next morning to be on the phone with them as Mark handed them each their gift from me. Loneliness and disappointment turned into excitement and smiles as they each opened something from their mama 110 miles away, but right there with them at heart. It was not the Mother’s Day we imagined, but we found the grace to make it something special and memorable, and we still have a Mother’s Day celebration day to look forward to upon my arrival home.

My sweet boy Jacob surprised me yesterday and drove the whole two hours here to spend some time with me. I can’t even express my gratitude at how much it uplifted my spirit. These sweet babes have touched their mama’s heart in ways they’ll never comprehend.

Last night after Jacob left I had the kindest hospital tech taking care of me. He asked me about my kids and listened as I raved about them. He then sneaked off and brought me a delicious chocolate chip cookie, that I believe were supposed to be just for the staff! “Happy Mother’s Day,” he said. “I’m sorry you’re spending it here.”

It truly is each small kindness and bit of grace that keeps me going.

Today Mark will come down to Indianapolis to be with me as I’m taken to surgery. I’d greatly appreciate your payers for all to go well, and for there to be no more complications, only healing from this point forward.

Thank you for being my people and standing in my corner to hold my hands up when I’m too weak. It means so much to know I have an army of people behind me on the hardest of days.

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Hope and Healing?

Hannah

Several weeks ago I had surgery to correct a problem with my VP shunt. A small handful of days before surgery my hospice company had been working on my recertification; that is getting everything in place for me to receive another 6 months of care. I was very anxious about surgery, but confident in knowing when I came home I would be in the good care of my hospice team. They have been so supportive and able to meet my needs no matter the hour.

Two days before surgery I got some very surprising news. My care team had collaborated, and they believed I have more like a year or two to live, rather than a number of months. On the day of my surgery, hospice would be pulling out of the picture and I would be transferring to palliative care, another aspect of comfort care.

At first we celebrated what that meant. The doctors seeing my condition stabilize and giving me a greater expectation of life was something to worship over! We had been seeking out some more natural ways of healing, and with the help of some friends also going before the Courts of Heaven to take ownership over healing for myself. This news seemed to be a nod that God in fact wasn’t done with me yet, and we had much to celebrate.

I am trusting God’s plan, but the transition has not been easy. When I came home from the hospital after surgery there was no one to come check in on me at home, and no one we could call at any hour if we needed more support. When my pain rises to unbearable levels we have to wait on a doctor appointment to address it instead of having immediate intervention from home. When I’m dry-heaving for hours on end and unable to keep my medicines down, we are on our own to fight through until relief is found. Instead of a phone call or home visit every week from one doctor who manages everything, I’m finding my schedule filling up with appointments I have to get to in order to see each doctor that handles each problem individually. That alone is exhausting.

I am dealing with infection from one of my incisions from my recent shunt surgery. Unfortunately because of where it is there is a risk of the infection traveling to my brain. It has taken many days and a slew of phone calls and my need to start IV antibiotics has still remained unresolved. These were the things that were easy when we had the hospice team at our fingertips.

While we celebrate that no more hospice means the anticipation of more days with my tribe, and perhaps even a complete healing of my body if that’s what God wihu, it has also been a bit of a challenge to adjust to. I did not magically feel better when I was given this news; instead I have continued to fight hard daily battles, only without the support I had grown comfortable with. I have had to fight harder with less support, and my capacity to do so taps out so quickly. It has meant long stretches with no relief from pain Sleepless night upon sleepless night. Indescribable fatigue having to make phone call after phone call to set things up or to get myself out in my wheelchair to see doctors in person.

I pray this will settle down; that we will eventually find a rhythm in which my needs are met and we can go longer stretches between doctor visits. I pray my focus can remain on living my days well and embracing the moments that will last. Right now I feel like there’s not enough left of me for my family at the end of the day, and I hate that feeling. I know God has a plan in this. Will you please pray that members of my palliative care team will rise up to take some of the burden from us? That I will find rest and restoration at home, and be able to extend myself further to my family?

I’m thankful for you, dear reader, and the support and encouragement you have graciously continued to extend to me. Please tell me how I can pray for and support you as well!

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War

Hannah

“War is hell.”

-General William Tecumseh Sherman

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I am tired.

So tired.

Tired in the marrow of my bones and to the bottom of my weary and tattered heart.

I feel beaten by the daily battle of fighting for life and time. Battling the indescribable pain that ravages my muscles and bones. Battling against the constant nausea that the pain brings. Battling to feed a body that usually has no appetite. Battling to take breaths when even while awake my body forgets to.

I am tired of seeing the grief my children carry over watching me become so different from the mom they knew. I am tired of watching my husband grieve over the things we used to do but no longer can. I am tired of feeling like a failure because of the things I can’t accomplish anymore.

And then I flip open my journal and there, taped inside the cover is the reminder I left for myself…

And I look at their faces and feel my weary heart swell with the uncontainable love I have for them and the bottomless joy that they bring.

And I pull myself up and don my armor and push through each battle with renewed determination. Because no matter how tired I am they will always be worth the war.

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Never

Hannah

Someone recently asked how long it would be until we “got over” the death of our youngest daughter. As if it were an obstacle course to leap over. As shocked as I was, it shed some light on an area where maybe people need help to understand. Perhaps for those who have never walked through something like that it truly is something they can’t comprehend. I think I know the answer to the question, and I’m going to share it with you.

When will we get over the passing of our daughter?

Never.

That’s right; I said never. If “getting over it” means when we will we stop talking about our beautiful blue-eyed little girl, stop sharing her pictures, stop acknowledging that she was a part of our lives, then that will never happen.

Last week would have been our Ellie’s 10th birthday. It has been most of a decade since we held her in our arms. Did we check the box; “10 years, now you can move on, stop bringing her up.” No. We did what we always do on Ellie’s birthday. We celebrated.

We celebrated because we are grateful for the 4 1/2 months of pure joy of having her here with us. We celebrated because her short life has changed us in ways we needed to be changed. We celebrated because if she were here we would be celebrating her, so why not still celebrate? Also we never pass up an opportunity to have cake! We reminisced over cake and then carried on our tradition of doing something helpful and kind for someone else in need.

Are you familiar with muscle memory? How your body automatically remembers how to do certain things because you have done them so many times? Well 10 years later my arms still have the muscle memory of what it felt like to hold my girl close against my chest. I can close my eyes and remember her smell and how her fine hair tickled my lips when I kissed her on the head.

These things will forever be treasured in my heart, and we will always find ways to honor her on special days, and that does not mean we are not “over it.” It means we loved someone so deeply we gave pieces of our hearts away and those holes will never be filled by anything else.

There will always be triggers of grief; when she would have started school, graduated, gotten married, etc. No matter how long it has been we will allow ourselves to grieve those things; that is a normal, appropriate, and necessary part of our healing process.

I am aware that some people are uncomfortable because, well, sad things are uncomfortable and they want us to get back to the happy baseline as soon as possible. We are not stuck in the deep mourning of our daughter, but as far as getting over it, we will never get over it, nor would we want to. We want to honor her life, her place in our family, and her spirit, which is still very much alive.

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A Decade

Hannah

My sweet little love. How is it possible that today is already your 10th birthday? A whole decade! It seems just yesterday I was feeling the warm weight of you on my chest, your delicate fingers wrapped around mine.

We talk about you often around here. Reminiscing over sweet memories with you, and wondering over so many things. What your laugh would sound like. If your eyes would have stayed that piercing blue. If you would have my sense of humor or your daddy’s quiet strength.

It still hurts, missing you. There will always be an Ellianna-shaped hole in our lives. That hole has brought about so many amazing things though. I am thankful for that. We have formed deep and lasting relationships built around the scars of losing you. We have reached out and filed gaps and met needs and made magic happen all in the name of honoring you and the impact your mighty life had on us.

On this momentous birthday of yours I am eternally thankful that I was chosen to be your mama. I’m thankful for the scars that have pushed me closer to Christ and helped me stand in the shoes of the hurting. I’m thankful for the people we have gotten to love on because we’ve been there and we get to pay it forward. I’m thankful for all the ways that your life and death has opened our hands to trusting in God’s plan, and has opened so many doors for us to spread love and support in your honor.

We love you, Ellie Grace! Happy birthday!

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Time

Hannah

6 months ago my hospice doctor signed a paper that said if my disease continued at the current progression my life expectancy was 6 months or less. Welp, surprise! Here I am! Seriously though… I know that no man can put a number on my days and only God knows when that time will be. And it will be the perfect number of days, because He planned it that way.

Does it weigh heavily sometimes having that kind of thing spoken over you? Yes absolutely, but I have to choose to continually give my fears and anxieties over to my Heavenly Father, because I’m not meant to carry that kind of weight.

With the help of some insanely wonderful friends and even people I have not gotten to meet yet I have been able to try some more natural treatments for my body, and while I do not know for sure how they will work I know they are a gift from God and they do my body good. I know that I’m still here.

I am so thankful for more time. There are days when things seem scary and overwhelming, but we keep taking each next day and making it the best it can be, because it is truly a gift. The gift of time. The gift of more snuggles with my littles. The gift of more smiles, more memories, more treasured conversations with my people. It is not lost on me what an incredible blessing this is.

I remain in hospice care at home, and my team members are the most compassionate people you have ever met. I’m so blessed.

Some of my favorite people have moved mountains to span miles and spend time with me and check in on me and love me in all the ways. My home is a revolving door of my local tribe encouraging me, entertaining me, bringing me sweet love. After a long and hard period of extreme isolation and many prayers for community we have been surrounded in the most amazing ways.

Sometimes I look into my eyes and I see that it’s changing me and I get afraid. I wonder what’s going on in there and what my future days will look like. Then I remember I have not been given a spirit of fear, but a spirit of love and of power and a sound mind. That’s all I need.

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Teenage Musings

Hannah

People warn you that the newborn stage and the toddler stage are hard and exhausting, but no one tells you that the actual process of them growing into older kids and young adults will simultaneously make your heart explode with pride and rip it out with grief for the things of the younger years. What a crazy wild journey it is! This week three, THREE of my children will be teenagers. How did this happen?!

Though my heart sometimes aches with longing for the days of binkies and Eskimo kisses, there are also so many amazing things I am experiencing as I watch my older babes blossom into who they are going to be. I’ve decided to share a few of these important and often amusing things you can expect to experience, so you will be less surprised than I was.

ONE. They clean their sneakers incessantly with baby wipes. They often choose all-white shoes despite my urging that a different color would be better, and then they panic over dirt and scuffs and are found with little piles of dirt covered baby wipes as they fervently scrub and buff their shoes back to an acceptable appearance. So, shoes are meant to be worn, but never look lived in. Who knew?

TWO. They will start calling you “bruh.” At first I was wildly offended by this and tried frantically to disallow it, but I soon learned that it is actually rather insightful into the emotions they are feeling but refuse to ever talk about. If you get a “bruh” they are likely to be displeased or annoyed at something or someone and it is best to let them vent it out. You are welcome.

THREE. They sleep. A LOT. Like all day if you let them. I remember being a teen and feeling exhausted all the time but I was not allowed to sleep in and I never understood it. I decided then that I would remember what that felt like and I would let my teenagers sleep when they wanted to sleep. And I do. Within reason.

FOUR. They will still sleep with their favorite childhood stuffed animal and then hide it when their friends come over which is just the cutest most heart-melting thing you could see from these strange people who most of the time seem tough and hard and perfectly disinterested in anything sentimental. I have more than one teen still sleeping with their childhood stuffie, and it twists my heart every time I see it. I got permission from one of them to post this picture.

FIVE. Seventh grade is literally the worst. Whoever invented it should be punished. At the end of sixth grade they should all be granted a hibernation that lasts until about the second quarter of eighth grade, and then they can reemerge. For the sake of them. And us. And world peace.

SIX. They eat an astonishing amount of food and your grocery bill will become the first priority on your budget as you strive to provide a constant flow of generous meals, hearty snacks, and midnight munching. Teach them to like eggs and Ramen because those things will become staples when you are scraping for pennies for the ninth trip to the grocery each month. Don’t be fooled into thinking this is just the teenage boys. Oh no, the girls are equally capable of becoming human garbage disposals, and you’ll just stare at them and wonder where on their bony little bodies they are hiding it.

SEVEN. It is a wonderful thing when your children start driving on their own and can A) go do things for you, and B) take themselves to their events. From picking up dinner to taking another sibling to their practice to picking up a gallon of milk for the fourth time that week, you will savor the ability to simply stay in your slippers and actually read a book or something because you don’t have to live behind the wheel of your minivan anymore. Life-changing.

EIGHT. Teenagers are the most interesting species on the planet. Their physical bodies transform frequently, they start having their own soapboxes and quests, they sometimes give you a fake hug and other times want to snuggle like a four year old, and they walk around making strange noises and generally being confusing. However, they will become like a really cool friend and they will still say “I love you” every time before they hang up the phone with you, and you will be proud of seeing them do all the adult things only maybe on a smaller scale because let’s not get too ahead of ourselves. Baby steps. They were just newborns like, yesterday!

**My teens previewed this post and ok’d it (and giggled reading it) before I posted**

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Giving Hope

Hannah

If you are usually on our Christmas list and thought we forgot you this year, there’s a very good explanation, and no, we didn’t cross you off our friend list. We decided as a family this year that instead of giving gifts to each other we wanted to find a way to give to someone who wouldn’t otherwise get anything. We are abundantly blessed all year long, and wanted to find a way to bless someone else. We planned to adopt a family, providing their gifts and groceries for Christmas, but there was continued lack of communication and I began to worry it was not going to happen. We racked our minds for other ideas; taking stars off of a giving tree, handing out comfort packages to those experiencing homelessness… and we prayed that God would use us right where we were needed most. As I began to worry we weren’t going to find a place to serve, an email showed up in my inbox. It was a foster care agency I had been in touch with, and they had an urgent situation. They had already completed their gift drive for children in foster care; they had collected wishlists and sponsoring families had shopped for each child. Well now just a few days before Christmas an emergency placement was happening, and there would be 12 and 14 year old sisters brand new to the foster care system without Christmas gifts. She asked if we would be willing to sponsor them. I couldn’t think of a more perfect “yes!”

In a rare occurrence, we made sure everyone was off work and off school and we squished all 6 of us into the car and set off to go shopping. Mark’s parents also donated to the cause, and since we had a 12 year old and 15 year old girl of our own, we were well equipped to choose just what these sweet girls wanted and needed. We were given a short wishlist by the foster care agency, so we made sure to make a few of those wishes come true.

It brought so much joy to see my children excited about helping someone else, and instead of being sad there aren’t gifts under our tree, the absence has been a positive reminder that we got to do something wonderful for someone else. So if you didn’t get a Christmas gift from us this year, please smile in knowing you were a part of something so much bigger.

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Difficult Days

Hannah

I am fighting for good days. I dislike the desperation in that sentence, but it is the most accurate. The pain that used to be a whispering reminder is now a roaring force that seems to sneer at my attempts to quiet it. It mocks me as I try to plan time with my beloved friends, and it smirks when I have to scrub my calendar to prop myself among my pillows instead. I did not expect for pain to be the thing that makes me feel so desperate.

I wish I was kind and gentle even in my hurting, but sadly it makes me irritable with the ones I love, and makes me say things I know aren’t true to my character. There are medications to help, and some of them work quite well, but change my personality and bring out a mean streak in me. In my mind it will never be worth easing the throbbing at the expense of my family’s feelings.

The medication that works the best to take the edge off of my pain makes me staggeringly sleepy. I’m so thankful to have something that works, but I find myself having to choose between being comfortable and asleep, or being awake and in agony. Sometimes I choose one, some days I choose the other. Neither one of them feel fair.

I am trying to find a balance; staying present enough to love on my people, and allowing myself respite from the agony that threatens to break me. Will you pray for me? That my moments with my tribe will be multiplied, and I will have the strength to ride out the hardest parts with grace and patience for the better days that are coming.

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Skipping Town

Hannah

Trying his best to make each special event an amazing memory for us, my sweet husband booked us an Airbnb for a short getaway a couple of cities away for our 19th wedding anniversary in November. This man; he is the king of making good plans, and the expert at rearranging them when life gets in the way. On our 19th wedding anniversary I was in inpatient hospice because my pain was so severe, and I was under quarantine because of a covid exposure. Draw a big scratch through those plans. He came up with a back up plan and made it wonderful and memorable, and I enjoyed every minute of it, but we still had these Vrbo reservations to see about.

Hubby reached out to the owner and explained our situation and asked for an exception, and they allowed us to move the dates of our Vrbo stay when I was out of the hospital. THEN I was invited by a friend to fly out and spend time with her getting her new condo set up in her brand new town. Now friends, my hubs is fiercely protective of our time together, but he is also the master of flexibility, and understands each moment and each possibility is truly a treasure for me and for my people right now. He reached out again, got another exception to change our Vrbo dates, double-masked me, and put me on a plane to make memories with my friend. My friend and I had a wonderful time, and then the day finally came that it was time for Mark and I to run away together. Giddy like a schoolgirl!

My husband is a rockstar at finding cool places for us to stay, and this weekend did not disappoint. He found us an apartment complex built in the earlier 1900’s that had so much class and charm, and was the perfect place to tuck away and socially distance for the weekend. He cooked for me, hauled around my heavy wheelchair whenever we needed it, let me sleep in, and gave me a heart full of special and lasting moments to tuck away.

We pretty much had the run of the place, hardly seeing anybody when we ventured down to play ping pong or snuggle in the hot tub. There were gorgeous details to catch your eye all throughout the building, but our apartment was simple and cozy and just the perfect place to hide away.

Throughout dating and on into our marriage Mark and I created a fun tradition of getting super dressed up and going out on a date. For our very first “formal” date over 20 years ago, we got dressed to the nines and Mark took me to a baseball game, build-a-bear, and then dinner at Morton’s; the best steakhouse ever. This weekend we were tickled to find just a few blocks from our apartment was a Morton’s, so naturally we made that our choice for our dressy dinner out again 20 years later! It was dreamy!

Morton’s Steakhouse
Filet perfection!

The wait for this trip was worth it, and thanks to Mark we had a wonderful and very special 19th anniversary. We celebrate often and we celebrate big; fully embracing each of these treasured moments I’m given.

Beautiful brickwork
Stunning
Each elevator door had a different dog picture!
Taking on our second puzzle
No kids + no cats = no missing pieces!
Pool, hot tub, and lots of bling
Me losing at ping pong
Hot tub with an amazing view!
Tallest shower ever, and it felt like standing in an actual rainstorm.
Beautiful time in a beautiful city

I’m so thankful to my man for working so hard to make sure we could do something fun but still accommodating for me. I’m thankful he still enjoys pursuing me, and lets me play dress up . I’m thankful most of all for the quiet, rejuvenating weekend we had together and the new memories made with the love of my life.

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Breaking

Hannah

These last few months have held some really intense challenges for my family and I. The kind that shake you down to your core and make you question everything about yourself, what you believe, and how you’re going to pick up and move forward.

I thought about telling you about how the seal broke on my inability to cry and how I big fat ugly sobbed for multiple days in a row, but what I really want to say is that these bottom-of-the-valley moments have reminded me so much how important it is to lean into our pain and feel it. Let it break you. Let it change you. Let it shake up everything you knew to be true because that’s the thing that makes you the incredibly strong, courageous, real person that you are.

These moments may feel impossible at the time, but they’re the very foundations upon which your strength grows from. Don’t let your heart grow weary; know that you are becoming the you that you were meant to be. Keep going. Keep leaning in. Keep letting it suck, because on the other side you are going to be stronger and braver and wiser than you could have ever imagined.

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Susan 🦋

Hannah

My heart feels crushed every time I remember that a hard goodbye is just around the corner. I am grieving having to say goodbye to an incredible woman. An Angel among us. I have been so blessed in life to have been given friends who leave such important footprints on my heart.

I met Sue in a roundabout kind of way; we were both following the same blog, and the blog author had asked for prayers for Susan’s granddaughter, Delainey, who was having complications from Trisomy 18. In the end, we lost our daughter Ellianna, and she lost her granddaughter Delainy just a few months apart. Thus began an unexpected friendship; raw, real, beautiful, and based on the bare bones truth of treating people gently when they need to be loved.

Sue and I carried the heaviness of grieving our little ones side by side even though we were states apart. She was always accepting of whatever stage I was in, and gave me space to feel and express all that I needed to. Do y’all know how rare that is? It is an indescribable gift to have a person like that! Even in her own grieving, Sue found ways to speak to my hurts and mend my broken pieces with her gentle words and kind heart.

From right: Susan, Delainey, Delainey’s mom Christy

Susan is a relentless encourager. If I look at my “friendship” on Facebook I will be scrolling through page after page of scripture, encouraging quotes, and meaningful articles she would send on to me. And that woman must have liked and commented on every one of my pictures for like five years. She was always looking for ways to build me up.

I only got to be with Sue in person one time, and that makes me a little sad. She was traveling near my town and made it a point to stop and meet up with us so we could finally meet in the flesh and have a good meal together. It is a treasured memory, an experience that really made me realize how gentle and kind of a person she is. She is calm and sure of herself, content in the moment, unlike how I sometimes come roaring in in a hot frazzled mess.

How blessed I am to have shared in such an uplifting and encouraging friendship at a time we both so deeply needed it. My heart aches that this world will not have Sue anymore, but my soul rejoices wildly at the thought of her scooping up her Delainey once again, and snuggling her close for all of eternity. How happy she will be. Once again she will be paving the way for me through a new unknown.

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Truth be Told

Hannah

I’m sorry that you had to say “ok” when they asked you how you were doing today. I’m even more sorry that when you paused they took that “ok” and assumed you meant “good” and bulldozed right on past it. I’m sorry because I know the truth, and the truth is you were not doing ok. The truth is today is hard and you had to pep talk yourself into even leaving the house today. The truth is your pieces are breaking into pieces, and it is going to be awhile before things feel “ok.” I saw you though; you wanted to say this out loud, and you couldn’t. No, the truth is that people just want to hear that you are ok; not that things are messy or painful or hard.

I’m sorry that the world is not ready to accept your truth. Or anyone’s really. We all have this never ending undercurrent of just smoothing things over and pretending everything is ok. The truth is, that could not be farther from the truth.

What if we created a community where when we asked how someone is doing we truly wanted the honest answer; good, bad, or ugly? What if we made it ok to say I am here but I am struggling? What if we did not feel pressed to know what to say to smooth it over, but were ok with accepting that things are hard and people hurt and not everything is tied up in a pretty little bow? What if we made it ok for people to share their truth instead of what we want to hear?

I know I can not change the world, but I can change myself, and maybe even the culture around me. When I ask how you are doing, I really want *your* God-honest truth. You do not have to pretend for me, because guess what… I’m hurting too. Maybe it is ok to not be ok, and maybe the very comfort we need is the people around us accepting us where we are at. It seems like a good place to start.

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Blue and Pink October

Hannah

October is miscarriage and infant loss awareness month. I do not quite know how I feel about awareness months. I think some of them help raise needed money for research and hopefully better medicine. I think some of them actually do shed light on things we were previously oblivious to. The thing about miscarriage and infant loss though is that there is no “research and cure” for it, and most people already know it happens, or even know someone who has been through it. Dedicating a month to it does not necessarily do anything for it except perhaps stir a lot more emotion for the families who have survived it. Maybe more people are sharing their own stories because of this month, and that’s good, they need to be told.

At my roots I’m a fixer, and if there is going to be a month dedicated to it, I want it to be productive. I do not know how to do that. What do you do when throwing money at it or doing walks in matching t-shirts and selling rubber bracelets does not bring babies back from death or prevent it from happening in the future?

I have a new friend who recently experienced the stillbirth of their son, and just sitting in the thick of how raw and earth-shattering that pain is reminds me that the only thing that can and needs to be done is circle around that sweet family and let them feel what they need to feel, because there is no campaign or 5K or colored ribbon that is going to take away that pain. Know what? That is perfectly ok. It is ok for people to hurt. It is ok for them to take all the time and feel all the feelings they need to without anyone rushing that along, regardless of how uncomfortable that may make the rest of us feel.

I guess what I have then is a list of do’s and don’ts. Maybe you have not walked with someone through miscarriage or infant loss, or maybe you have and you want to do it better next time. I hope that coming from the heart of a mama who has lost babies I had not met yet, as well as a baby who lived earth-side with us will help those of you looking outside in, wondering what to do.

DO acknowledge that it happened. You cannot just keep trying to carry on with business as usual and hope that your person will be over it soon enough. They lost a huge chunk of their heart; hopes, dreams, memories, and they need you to tell them that you realize they are going through that.

DON’T try to compare their loss to, well, anything else. Their loss and their grief is completely unique to them, and believe it or not, it does not help them feel better to hear about your friend’s mom’s sister who lost a baby and how they handled it. Let their story be /their/ story, and let them share it with you through their own lense, not the one you had ideas about before this.

DO make specific offers of help. Saying “call if you need anything,” will never actually result in a phone call. You need to take the wheel here. Tell them you are making them a meal and ask what night is best. Tell them you are heading to the grocery and ask what can you pick up for them. Go over and rake their leaves/cut their grass. Tell them you’d like to help with some housecleaning and give them a choice of days to choose from. It is very hard to ask for help. Period. You need to not offer it, but to actually just give it and help with the decision making.

DON’T rush them into the future. Never ask if they’ll try for another baby or if they’ve ever thought about adoption, or reassure them that at least they are young and can try again. I do not want to have to explain this one. Just don’t do it.

DO continue being supportive well into the weeks, months, years ahead, not just right now during the “crisis period.” This is a hurt that is always going to stay with them, and there will be triggers for the rest of time such as holidays, birthdays, anniversaries, random Mondays. Remind them throughout time that you remember and are thinking of their little one. Use their baby’s name; it means the world to hear it.

DON’T use platitudes like, “God just needed another angel,” “everything happens for a reason,” “you can always have another,” “now you have an angel looking after you,” or anything that begins with the words “at least…”.

DO say “I’m sorry,” “my presence is unconditional,” “do you need anything?” “[baby’s name] will be greatly missed,” “this was not your fault,” “just take the moments one at a time.”

It is ok to tell your person you are at a loss for words, and have no idea what they are going through. Assure them that you want to be there for them, and then follow through and show up. They will help you know what they need if your eyes are open and your heart is receptive.

Miscarriage and infant loss are sad and hard and uncomfortable, but if you can look past your own discomfort and come alongside a friend or a family member who is going through it, you will not only bless the socks off of them, you will learn a lot of good things about yourself as well.

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Incurable Hope

Hannah

It has been a long six years trying to find a diagnosis. Based on my symptoms and the way they have progressively worsened, we’ve known it was some kind of degenerative neuromuscular disease, but we haven’t quite known the prognosis. Early on it was thought to be MS, and I was able to work through it, making some modifications to how I did things, but vastly able to continue life as normal. Things continued to decline though, and I found myself losing the strength and endurance I needed to continue working as a paramedic. This is when I cut back to part time paramedic, and also took an office job in organ donation. As fulfilling as that was, I eventually found myself no longer to make the drive, or even remain upright for the hours that it required. Eventually I had to face that I could no longer safely work in any job, and I needed to save what little energy I had for my family and friends.

It’s been a frightening journey at times, especially with the unknowns, but we are beginning to have some clarity. A recent brain MRI showed significant damage to my brain stem, which is responsible for many of the automatic functions of the body. This information shed light on why I was having symptoms related to that area of the brain, like trouble regulating my breathing. All of these pieces started to fit together and pointed to Multiple System Atrophy. In some ways this was a relief, as the contenders like ALS have a very short length of survivability. MSA comes with its own fatal prognosis though, typically within 5-15 years. Being at year six, I already feel blessed for the time I’ve had and continue to enjoy. I’ve tried to stay in the moment and be continually grateful, although I’ll admit that sometimes my attitude stinks and I fall into a grumpy state of forgetting the gifts I’ve been given.

I know that God knows my heart and hears my prayers, and those of so many who love me. I know that He can take this from me if He chooses to. But even if He doesn’t, I will still choose hope and thank Him for every moment He allows me to have here.

I hope you’ll help me, dear readers, to continue to find Hope and Grace in the day to day. I know that it’s there, and sometimes I just need help to lift my eyes up for it. Please don’t treat me differently; let’s laugh and dance and do big and small things without fear of the future. I’m ready for today, how about you?

Please leave me a comment, it lets me know you’re listening!

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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.