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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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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!

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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.