Tag: community

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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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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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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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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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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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Being Here

Hannah

Hello my faithful friends and loving strangers. Since wrapping up my blog, I have been receiving numerous requests for me to keep sharing my writing. I heard stories of how it has changed people who I didn’t even know were reading it, and how it has encouraged people who have needed that, and brought hope to others who have been feeling alone and hopeless. I felt God urging to me to continue sharing my story; so that many will know His grace and His hope. If God is willing to use someone like me to point others to Him, then here I am, committed to showing others the grace and hope I’ve found along some hard, long battles.

I was admitted to home hospice a couple weeks ago. They have treated me with such loving care, but it has also been a hard pill to swallow. I don’t like the thought of having a number on the expectation of my days. I know though, that every single one of my days is already planned, and nothing can change that. God knows.

Please try to ignore any spelling errors or mistakes you find in my writing. My disease has progressed to give me severe double vision. I have to close one eye to be able to see things like words very clearly. It must look comical to people seeing me typing (and a lot of backspacing) with one eye closed or covered. Otherwise I use voice-to-text, and I think we all know how that can turn out. So please be patient with me, try to get a giggle out of imagining how I am writing this, and try to pull out the meaning of what I’m really trying to say.

Despite Covid, we have managed to squeeze in some really fun things as a family. We drove to a nearby beach and had a wonderful time just playing in the ocean and sand, and since our room was right next to the beach, it was easy for me to take a break and just go up to the room and lie down. I could open the door to the deck and hear the constant soothing sound of the ocean. Mark is working on his doctorate, so that was pretty much the most relaxing way to do it. We were quite content just eating at home and staying in the pool and at the beach. It was just what all of us needed.

Shortly after we got back, my home hospice nurse came out for a visit, and she needed to send me to inpatient hospice because she was not able to get my pain under control. I have been there ever since, and while they’ve been a great help with some things, there is decline in others. It’s been a scary and hopeful experience, and I’m greatly ready to be at home in my own bed with my own loves snuggling me close.

We have been SO loved on. Our people from our small group have stepped in and cooked for us and cleaned for us, and visited me for hours of talks and laughs and all the most perfect treats they know that I love. My little sister even drove out from Kansas to pick up my kids and take them to her house for a week. While she already had 7 others. Who does that!!!We are so grateful to have people like all of these, loving us big. God is so kind to me.

Thank you for your thoughts and your prayers as we shift to this new season. We need your prayers and your visits and your reminders that God is faithful and good to us, and is holding us strong through each moment.

Thank you for listening. It brings strength to my soul.

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Partner

Hannah

There have been a select few people who have stuck like glue through the somewhat turbulent stretches of my life. The more experience I have, the more I realize how rare and valuable that is. My wish for each of you, dear readers, is that you would have a friend like my fire partner, Michael.

A partner in Fire and EMS is such a multifaceted thing. You have to be able to trust them with your life, whether you like them or not. They can be your best friend, or your biggest annoyance, and sometimes you just hope for tolerable. Michael and I met at the fire station as I was finding my way as a new recruit, and him a seasoned member. He was always helpful and courteous, and before long we were pulling the same shift together. From the start he was the kind of partner who knew what I wanted without having to say it. That’s the best kind of partner to have. He was always willing to jump right into whatever crazy ideas I had to improve the department or the care we gave, even when that meant spending hours on a Sunday at the station to complete my projects.

I got to be the first person he ever poked with a needle, and he willingly sacrificed chest hair to my ekg patches so I could practice. He patiently taught me how to drive the giant water tank on wheels, and we spent many evenings scrubbing station toilets and floors together. He poked fun at me having to climb the giant tires to see into the engine compartment of our trucks, and he understood my desperate need to have a label maker always at hand. Whatever we were doing, we were the perfect team.

Unfortunately it wasn’t terribly long into our partnership that my disease really started hindering my ability to perform. I was eternally grateful for him picking up the slack for me where I needed it, but eventually I had to admit I couldn’t continue. This is where he showed his true loyalty. Instead of bidding me goodbye, he was visiting bedside when I was long days in the hospital, frequenting my house to love on me and my family, and was always a text or a phone call away when myself or my family members needed it. I learned this was the kind of guy who would literally give you the shirt off his back, no questions asked.

He and his wife Katie rose up to meet my family and I numerous times in our last months in Colorado. Taking the kids when we needed it, bringing us meals, picking up groceries, helping drive me to appointments when Mark had to travel. There was never a time they said no.

Relocating to Ohio didn’t change my partnership with Michael. Within weeks he was on a plane to come see us in our new home, and he continues to do so on a regular basis; having guy bonding time with my husband, standing in as help for my family when work takes my man away, and loving and caring for us in every way he can think of.

If he’s not cooking up our favorite tacos, he’s looking for things to fix or improve around our abode. He has cleaned up my messes, picked me off the floor, and sat in silence with me when that’s all I needed. He reaches out to meet my wingman where he’s at, offering love and camaraderie to the man who carries our family. He plays with my children, helps them with their math, and isn’t afraid to keep them in line when they need it. He will long be a trusted figure they know they can run to.

We giggle at how he can come up with a solution to most things we are clueless to fix, smirk at how the owners of our local hardware store recognize his face, and we make fun of him for nerding out over things we fail to understand.

Michael has loved my family through days of joyous celebrations, as well as walked with us through heavy and disheartening days, and that’s what makes him different than most. He has never backed away. He is a safe haven for any one of us, and it’s the most comforting thing to know you have a friend that you can trust like that. I know that in the weeks and years ahead he will continue to be a soft landing place and strong anchor for each person in my family, and regardless of what I’m capable of, he will always be called my partner.

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

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Summer Lovin’

Hannah

Every summer for the past few years we have started off the break making a “summer bucket list” of things we want to do during summer vacation. Some things are big, some are small, but the main idea is to be intentional about using our time. I am a homebody through and through, so I would be perfectly happy snuggled in my nesting place with my tribe. I have wanderers and adventurers though, so we try to plan some exciting things to venture out and try while we are free from school routines.

This summer we crammed in more than we usually do, trying to check off some unique things that I either haven’t done or likely won’t able to in the future. It has been a blast. I have dug deep for energy and stamina to hang with my people, and while the nights find me collapsed in an exhausted heap, it has been exhilarating to taste so many joys this summer. We stretch me out, hydrate, medicate, and wake up again to take on the next adventure.

From staying in pajamas all day and doing sidewalk chalk, to concert hopping and driving to new destinations, we are creating a beautiful bucket full of the exciting and the mundane of sweet summertime. What is on your bucket list this summer?

If you are friends with me on Facebook, you may have already seen some of these, but enjoy the pictures of some of our adventures!

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

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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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Home, the Place Where I Belong…

Hannah

My tribe and I are elated to be spending some time in our old stomping grounds, Colorado Springs. Mark had to travel out here for work, so we made him drag us along! There is so much good to be found in the bright sunny skies and horizon full of majestic, towering peaks. This is our place.

We have seen so many friends this visit. So many. There are still more we couldn’t even squeeze into our days, but we have dearly enjoyed each heart we’ve been able to reconnect with during our time out here. Old friends are the bestest friends.

My little people have enjoyed days full of swimming, playing with friends, visiting their favorite spots, and then snuggling in for crafts, movies, and massage trains. It has been a wonderful break for our hearts and minds, and we have found joy in our minutes.

Our visit is too short to fit in all the goodness we left behind here, but our love tanks are full as we wrap up a wonderful week packed with sweet memories. Thankful for the Giver of such gifts.

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