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Breaking

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 🦋

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

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

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

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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Being Brave

It gets said a lot; you are so brave. When it is said to me I think to myself, “I am not brave, I am barely hanging on.” I have always self-described bravery as purposely doing something big and scary. Like something voluntary I think. I have always felt like brave is more of a choice rather than something you just are.

Recently my pastor came and sat at my bedside. His enormous hand swallowed mine, and he looked me in the eyes and said, “you are so brave.” I responded by telling him I don’t /feel/ brave; I feel like my anger and my fear and my disappointment is the opposite of brave. It planted a seed in my mind though. I started wondering what brave actually means.

Back in my day, before Google, we had these things called dictionaries. They were huge books that had the definitions of practically every word you could think of. So, I dictionaried the word Brave. Yes, I am making a new word because in this day and age of everything being looked up by Siri I feel like the good old dictionary deserves its own new description that I can convince my kids is real. Dictionaried. That’s what I did. The Oxford Dictionary said this under the word brave:

Ready to face and endure danger or pain.”

It did not say you come looking for the danger or pain, but are simply ready to face it; assuming it has instead come looking for you. It was such a simple definition, but it resonated in my bones. It did not say that bravery is a lack of fear. Wow. This changed my whole perspective. It is ok for us to show up shaking and sobbing and scared out of our ever-loving minds, but being brave simply means being ready for the fight.

My danger and pain today is facing Botox. It is injected into my hamstrings and some of the muscles in my legs to loosen the spasms and help me retain more range of motion. The last time we did this I passed right out on the very last injection. Naturally that bad experience has me feeling extra apprehensive this time around. I know however, that I am putting up the fight of my life. That is my brave; still being afraid of what is going to happen, but showing up anyway because I know good will come of it. Courage is not fearlessness.

Friends, whatever you are facing today, just getting up and facing it makes you brave. You do not have to have good feelings about it, you just need to show up with the ability to endure. The world knows you are afraid, but you love more than you fear, and that is what we all remember about you. Let’s take on today, shall we?

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You’re Doing it too

It’s funny what got this thought started in my head. I was sitting on the floor of my shower, exfoliating my feet. Yep, I know; gross. For my men who don’t what that is, it’s when you use something abrasive to scrub off the scratchy dead skin and make it soft and smooth again. Trust me, you are glad we do it. Anyway, there I was scrubbing my feet and I thought, “It seems like just yesterday I was scrubbing my feet to get them pretty for summer flip flops and bare feet in the sand.” Then I felt a pang of sadness. Summer is over. It slipped right by while we were clinging to our masks and holding our breath that the pool and the theme park would open and we would galavant about in the sunshine like we usually do. Those things never happened, and here we are ankle-deep in colored leaves already with not a tan line to show for it.

I know I’m not the only one wondering where summer went and what we have to show for it. Thankfully we were able to spend some time away at our family camp site, and we sneaked away for a short trip when some things started opening back up, but there are a lot of “normals” that we missed out on this summer, and it wasn’t just us. People everywhere had to miss family reunions, vacations, trips they had been planning forever, even time visiting grandparents in their skilled nursing facilities. There was a lot of loss, even if we didn’t realize that’s what it was.

If ever there was a time to be gentle with each other, it’s now. As a whole we are grieving. The more comfortable life we knew before COVID. The peace of mind to be closely with our people and not worry about getting them sick. The moments in the sunshine and the grocery and the swimming pool that maybe we took for granted last year, but are trying to fill with something else in their absence now. Perhaps we can not see enough of an eye crinkle above your mask to know you are smiling, but it’s a perfect time to shout a good morning, to give an unexpected compliment, to bring some warmth to the cold parts we are all experiencing.

If I’m orange from self-tanner by December, you will know why, and if my eyes look weary because we still have to wear a mask to get into the grocery, you will understand that too. But I’ll be trying to bring a little more light to your day, and I hope you will be doing the same.

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These Boots

Today I lost another Paramedic friend. I say another because it’s not the first time. I fear it will not be the last. I do not really know what to say about it, so these are the words that came to mind.

These boots are the ones that were picked out so new and shiny and untouched.

These boots are the ones that were nervously shined for the first day on the job.

These boots are the ones that got drowned in soap bubbles washing the trucks as a probie.

These boots are the ones that held nervous feet running their first call.

These boots are the ones that climbed endless stairs to bring your loved ones down to be cared for.

These boots are the ones that got cuts and scuffs from asphalt and rocks and ice and twisted metal, and those darn stretcher wheels.

These boots are the ones that trudged through dry fields for hours, looking for a woman who was lost.

These boots are the ones that rested on the dash in hopes of a few minutes break on a busy shift.

These boots are the ones that were the first thing many patients looked up and saw.

These boots are the ones that crunched through broken glass to get your loved one out of the car.

These boots are the ones that stood in a homeless man’s urine as he was tenderly helped to his feet.

These boots are the ones that were polished again and again in attempt to cover the scars and scrapes.

These boots are the ones that ran an achey elbow call right after performing CPR on a baby that wasn’t coming back.

These boots are the ones that were splattered in blood as every effort was made to make it stop.

These boots are the ones that stood there while you were told we had done everything we could do.

These boots are the ones that saw far more pain and heartache and destruction in a day than most people see in their lifetime.

These boots are the ones that sit empty, still bearing the scars and scrapes that never could be erased from your heart.

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The Little Garden That Could

Remember several months back when my garden got trampled and I was certain that I would not see anything grow from it this year? Every few days another arm load of veggies is ripening to perfection, and while I may not have any strawberries or cucumbers this year, just the victory of getting to make okra pickles with my little man is more than enough to call this little garden a success this year. I am blessed beyond measure.

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Above the Belt

I seem to frequently get told that I’m strong or brave or amazing, or any one of those pat-you-on-the-back kind of words. As flattering as that is, let me change your camera angle for a moment and show you what’s really going down. Behind, beside, blazing ahead of, or basically whatever direction I need to find him in is the most wonderful man that I get to call mine and do life with every single day.

It is true, I do a lot of fighting against my waves in life, but if you look a little closer you’ll see my Mark doing whatever legwork is necessary to keep us right-side-up. He is one of the most giving guys out there, frequently overlooking his own needs or wants in order to keep me comfortable and moving forward.

I can see it in my head; a boxing match. There is arm waving and whistle blowing and the boxer wearily plops themselves down in the chair in the corner, and that’s where you see him. He flies in fast as an eagle, but stealthy as a shadow and he surveys the damage and starts making it better before the rest of us have really even taken it all in. He’s icing swollen eyes, dabbing up bleeding lips, and all together just letting the sweat and the blood and the brutal grossness of it all drip all over him without a second thought because he is so focused on the goal of getting his fighter back out there to take in all the glory. Yep, that’s who my man is. Every single day.

He doesn’t complain. He doesn’t ask to share the winning Golden belt, he simply does whatever he can to make the circumstances better so his fighter can get back to doing what she loves, and be good at doing it. I’m not sure the official name that person is called, but for me, I call him Buddy. Whenever he hears me call that name he comes rushing to my side to help me battle through whatever next fight needs to be fought. He likes to stay in the shadows, and insists that anyone would do what he does, but I know better, I have the best of the best.

Will you say a prayer for Mark today please? He is such a hard worker. He gets up as daylight is about to begin cracking the sky. He gets ready to start his work day, but never before first checking on me; helping me get my morning medicine, and showering me with kisses. He always makes sure I am cared for and comfortable before he starts his own work. He puts in a solid day of work, but it is not just that. He is working through his doctorate, and he’s making himself available for all the 10 gazillion times myself or one of the kids will come knocking on his door to ask for his help that day.

He does work-work all day long, but he often splits into the time of his day to take me or one of the kids to appointments. He makes sure the little ones get lunch, and feeds all of us again at the supper hour. He helps with homework, does housework, and whatever else needs to be done, like picking up groceries, or taking our pets to the vet. He does it ALL, and he still meets each one of us with love and grace. And usually a silly dance; lets not kid ourselves.

My husband needs more strength right now more than ever before. He needs strength to keep up with work and school, and all the other things that still need to happen around our home because I am laid up in bed. I’m so thankful he has scuba diving as a hobby, because it allows him to find peace, refreshment. (and quiet) to keep fueling himself for keeping our family running. Please help me support and love on him right now as he carries such tremendous weight on his shoulders.

Thank you for listening to my heart!