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Susan 🦋

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

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

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’

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

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…

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!

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An Open Letter to my Grieving Friends

Dear Mark and Stephanie,

You have just joined a club no one ever wanted to be a member of. How I wish no one has to wear the label of grieving parent. It’s one thing I wish we didn’t have in common, but because we are both here together, I’ll be here.

When you walk slowly out of the hospital into the sunshine with empty arms, wondering where to go from here, I’ll be here.

When guilt creeps in and tries to make you question your decisions, I’ll be here.

When you walk by her bedroom door and break down at the sight of all that was hers, I’ll be here.

When you struggle through all the “what-ifs,” I’ll be here.

When you numbly stumble through the surreality of laying her to rest, I’ll be here.

When you have to put your own grieving on hold to help her siblings in their grief, I’ll be here.

When school starts back up and her backpack still hangs on the hook, I’ll be here.

When people ask you how many kids you have and you struggle with what to say, I’ll be here.

When her birthday rolls around and you’re ripped apart by her not growing a year older, I’ll be here.

When the days and months and years tick by and your grief ebbs and flows like the ocean waves, I’ll still be here.

I will walk with you when you find new memories that make you smile, and I will sit with you when the sadness is too crushing to function. I’ll support you as you forge through the future, finding a new kind of normal. I will help you remember the good times, and I will never stop saying her name. I will be here as the landscape of your life takes on a new shape; one that you never hoped for or imagined, but one that is now reality. I will be here as you bravely pick yourself up and keep going, with all these precious pieces tucked away in your hearts. When you wake up each morning still a member of this new club, I will be here.

All my love,

Hannah

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A Rock and a Hard Place

Sweet Hailie Marie. This girl has shown me more about perseverance than most adults I know. This world is going to feel more empty without her.

Hailie’s father, Mark, and I first became friends in middle school. Thankfully technology has allowed us to maintain our friendship through many moves and life changes. There is a quote from Harry Potter, however, that I feel explains the foundation of our friendship even better.

“There are some things you can’t share without ending up liking each other, and knocking out a 12-foot mountain troll is one of them.” -JK Rowling

Our 12-foot mountain troll came in the summer of 2011. Mark tragically lost his wife while giving birth to their son. I tried to be a supportive friend without really having any idea how to walk with someone through that. Several weeks later, I unexpectedly lost my baby girl, and entered a whole new world of understanding the hurting. Going through those great losses helped give my friend Mark and I an understanding of each other, and forged a friendship of encouraging each other through a pain we both now knew very well.

I’ll never forget the phone call which seemed only a short time later. Mark’s daughter Hailie had brain cancer. It was an extremely hard thing for me understand, but I watched the family take this new challenge with strength and calm.

This is when I became privileged to know a little girl with fight and determination that is awe-inspiring. Three times over the next few years she fought this beast. She bravely faced the treatments that stole much of her childhood, and she pressed on. She’s fierce, and she’s gentle, and that girl always has a smile. It’s been tough watching her family walk through this suffering, but seeing how they handle it with such calm perseverance and deep trust has been inspiring to me.

Now we know that the time to fight has come to an end. That beautiful, courageous girl is not going to be with us much longer. It’s excruciating. It’s confusing. I know I have argued with God many time over allowing so much heartache in this family’s life. Answers to questions we’ll never know, but I do know that Hailie, as well as her family have given us all a lesson in perseverance, the importance of family, and the hope that can never be squelched by the darkness.

Will you keep them in your thoughts and prayers with me? These days ahead promise to be heart-crushing, and sometimes I lose the words to pray within the searing of watching my friend walk this path of suffering.

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