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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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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!

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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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Quarantine. Nailed it.

Every time I’m on social media I see photos of people getting all their Spring cleaning done, exploring remote and beautiful chunks of outside, and doing fun and creative projects as they entertain and school their little ones. Just in case you don’t feel like you’re one of the ones out there killin’ it during this quarantine, I want to offer this up to you; solidarity.

This is month number three of lying as flat as possible because this stubborn spinal fluid leak won’t heal. I can’t be upright more than a couple of minutes without horrendous pain, and puking my guts out. That means Spring cleaning, nature exploring, and crafty projects are not happening in this house. The main man is juggling working from home as well as handling feeding the offspring and running any essential errands, I am making my first grader crawl up onto my bed so I can do homeschool lying down, and everyone is generally running amuck outside as well as consuming far too much screen time because, well, life right now. And guess what? We’re all going to be ok.

We all need to give ourselves a little grace and realize we are each doing the best we can. We are adapting and learning to overcome new challenges all while still embracing every good grace we can find and loving our people fiercely with all we’ve got. It doesn’t matter if you’re cooking a five course meal every night, or struggling through online learning in your pajamas every day, because no one gets to judge you. Do you.

Keep fighting, even when it’s facedown from bed. We’ll get there.

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

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Quiet & Brain Surgery

Thank you to the many of you who have reached out to check on me over the last weeks. My silence prompted care and concern, and my people reaching out to me has been heart nourishing when I simply haven’t known what to say. I am wrestling through a new season; one of discouragement and questioning, and it’s often left me grasping so desperately for my own hope strings, I haven’t felt anything left to offer.

As the days are growing longer and the tips of new blooms are beginning to push into view, I am in the quiet of home with my closest people letting this new season of hope-finding be one of rest and healing. Not so much of my own choice, but my recent battles have forced me into a time of convalescence.

I am recently home from a 35 day stay in the hospital two hours from home. It started as a cerebral spinal fluid leak because of the medication pump in my spine. Three spinal surgeries and one brain surgery later, I was finally stable enough to come home. Flu precautions kept my little people from being allowed to visit, which made the days exceptionally long.

My sweet friends and family loved on me as best they could from a distance, and when my stay kept getting extended, my fire partner from Colorado flew out to spend a few days at my bedside. Much of it is blurry, as I was medicated and exhausted, and more than a few people got text messages from me that were impossible to decipher.

I’m thankful to have been carried through on the prayers of so many, as my own strength and determination has been quite sapped for awhile now. Getting a shower is the triumph of my days right now, and the remainder consists of lots of sleep, fluids, and trying to figure out how to style half of a shaved head. My littles have just begun their Spring Break, and I’m snagging them to snuggle as often as they’ll allow.

Thank you for your loving care during this time. Surely when I find my bootstraps I will grasp them once more, and challenge my days with more adventure and sass. For now I’m here resting, healing, thankful for each of your kind messages, and looking forward to sharing life’s next adventures.

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

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Life Expectancy

My 6 year old climbed into bed with me and let out a deep sigh as he laid his head on my shoulder.  His babyish fingers fiddled with the green beads on the bracelet I had given him when he asked for something to “remember me.” When I asked him what he was thinking about, the fears came spilling out.  “I don’t want to miss you mama, I want you to stay.” He echoed what my heart whispers every time I look into the eyes of my little people.  We all want more time.

My condition has a life expectancy of 5-15 years.  My symptoms started 6 years ago. I guess many would say I’m living on borrowed time.  It’s a heavy thought when you think of it that way. That’s the thing though; every one of my days  are already perfectly appointed, however many that may be.

It’s easy to get caught up in fear when you have something that has put an expiration date over your head.  I’m not going to lie and say my mind doesn’t wander there, wondering sometimes over how long I have.  The more I have moved and leaned into this season though, the more I am filled with an overwhelming peace that I will be here the perfect number of days.  It’s a painful belief we have that people are taken from us too soon.  “She was too young.” “He died too soon.” “She was taken from us much too early.”  Can any of us point to someone who died right on time?  I choose to believe that God allows each of us to die at the perfect time, regardless of the circumstances.  This gives me so much freedom.

Instead of focusing on my life expectancy, I’m choosing to live expectantly; expecting joy, daily graces, and the perfect number of days to do life here with my people.  I’m soaking up the snuggles, rolling with the grumpy mornings, and pledging to be present for the big and small moments of every day without fear over my future. What if you decided to believe that everyone is here for the perfect number of days? Who would you be?

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

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In the Waiting

I spent the morning with my little on our knees in the dirt, carefully setting tulip bulbs in the ground as the bite of the brisk air nipped at our coats. He excitedly flung dirt with a small trowel, and counted out the bulbs, mixing the colors and nestling them tips-up into each hole. As we carefully patted the dirt down, covering the evidence of what lays below, I was struck with the symbolism of it all.

These bulbs, cold and papery, don’t look like much right now. They are carefully keeping a beautiful secret which won’t be seen until Spring, after the Winter storms and bitter cold have faded. How true this is of our lives. You may be in the middle of a hard season, worn by the beating of the storms and weary from the gray that stretches on for days. In these hard moments though there is planting; the lessons you are learning, the faith you are growing, the hope you are clinging to… these beautiful treasures seemingly lost in the bitter winter of what you’re going through will bring eye-catching wonder on the other side. Don’t despair; keep sowing in the cold ground, even though you can’t see it now, something beautiful will come of what you’re going through. Let’s wait expectantly together for Spring!

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

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Let’s Talk About It

I have been trying and trying to write a post, but the words just won’t flow, so I’m just going to keep it simple. I’m sure most of you have already seen posts announcing that October is miscarriage and infant loss awareness month. Loads of people have been publicizing their take on 1 in 4, and trying to make the lives of their babies seen. It may have surprised you to see friends post about it that you didn’t know had been through this. The best thing I can pass on to you from my experience with miscarriage is this: it’s ok to talk about it.

We’ve had many people talk with us about the death of our youngest daughter because even though she was young, she was still here.  Our people met her and knew her and got to participate in her short life.  Our friends and family do not however, talk to us about the two babies we lost to miscarriage. That’s taboo, and people don’t think it’s ok.

Let me tell you something about people grieving a miscarriage. It is healing to talk about it.  One of the worst things about a miscarriage is that it feels like a baby that you pinned so many hopes and dreams on has slipped away unnoticed.  That mom and dad want their baby to be seen, known, acknowledged.  As soon as they found out they were pregnant they started imagining every event and holiday with that little one a part of it.  When that dream is dashed away, there are going to be holes. Remember that they are missing that little one when those special days come around, and don’t be afraid to acknowledge it.  A small token of your love, a text, a kind word… these things will go a major distance in helping to heal that mama and papa’s hearts.  Let them know you know they are missing their baby.  Let them know that you’re sad too that he or she isn’t here to celebrate.  Let them know that you care about their hurt.  I promise you these little things will be so much less awkward than you imagine, and will be soothing balm to a grieving heart.

 

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