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A Decade

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

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

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

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

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

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

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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Under The Cover

We’ve all heard not to judge a book by its cover…

We recently had family pictures taken, and they turned out beautifully. I’m so thankful for the extra time taken to capture moments of me with each one of my little loves, as well as the man of my dreams. As beautiful as they are, when I look at them I swallow a hard knot wondering what the future holds. As I’m fighting for another Christmas I’m overwhelmed with thanks with each moment of time I’m given; we’re all given.

As I poured over our photos and soaked in the soft background light and the beaming smiles, something struck me. It looks like such a warm Fall day; our faces lit with sunshine, and I look so strong standing beside my people.

Well let me take you behind the scenes. It was FREEZING. I mean nose-running, eyeball-gelling, goosebump-shivering cold. This kind of cold is especially hard on my muscles, escalating my normal spasms into arms and legs that lock up and refuse to move.

This is how that day really looked: I was in my electric wheelchair bundled in a coat and covered in a thick blanket. We would roll to each new backdrop and I would be helped to pull off my blanket, yank stiff arms out of my coat, take my oxygen tubing off my face, shuffle to where I needed to stand, and then prop me up for the next shot. Then back to the chair, coat on, oxygen on, blanket on, roll to the next place. It felt so messy and chaotic, yet you’d never know that looking at our pictures.

That’s what struck me. It was such an important reminder about how appearances are deceiving, especially on social media. We can all be really good at hiding what is really going on. Unfortunately that’s usually our default; pretend everything is ok. Remember that many people are fighting hard battles even though you might not see them, so offer grace, extend kindness, and never assume you know the whole story.

Leave me a comment; it lets me know you’re listening!