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New Wheels!

The past few weeks have brought me a fancy new wheelchair and an incredible mobility van to travel around in! I am still waiting for my headrest, but everything else is so wonderful and supports my body in a comfort I’ve not had in a long time. I am so blessed that insurance worked with us on this, and now Mark doesn’t have to push me around everywhere we go!

I know there are many people with the same needs as I have who aren’t as fortunate to have a nice chair to use, or even a vehicle to get the chair around. It is not lost on me how richly blessed I am. I’m so thankful to have these needs met in such amazing ways, and I hope to use them to bring more love and light to the world.

Here’s to more adventures in the fast lane!

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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?

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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!

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Missing…

“They say sometimes you win some
Sometimes you lose some
And right now, right now I’m losing bad…”

I am still going to bed having filled out my gratitude journal. I’m still whispering thanks for my multitude of blessings. I know tomorrow is a new day with new promise… but tonight, tonight it just doesn’t feel fair.

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone.
I know the sorrow, I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone.”

-Mercy Me “Even If”

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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.

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Four Favorites

It’s a drizzly morning, and I’m headed to the hospital soon for the third attempt at making my feeding tube right. What a stereotypical Monday! I could use a little pick me up, thought maybe you could too. Because the thing is, past the soggy shoes, and gray skies and cold, sterile rooms, there are amazing bits of joy all around us. Let me share a few with you.

Run, don’t walk to Trader Joe’s for some cookie butter! You. Guys. I don’t know how they came up with this, but it is truly Heaven in a jar. I made my kids two sandwiches, and the entire rest of this jar got eaten by me. With a spoon. It’s that good. We put it on pancakes, ice cream, graham crackers, sandwiches… pretty much wherever your imagination takes you, it’s delicious. It’s like Christmas before Christmas. The crunchy version is even better; somehow they’ve gotten little bits of those amazing cookies to stay crisp and crunchy throughout the butter, and it’s simply divine.

Young Living’s rose ointment. This stuff is good for so many things! It’s wonderful on cuticles, dry hands, rough patches of skin, as well as to smooth on your lips when you’re caught without your favorite lippy. I personally use a little on the delicate skin under my eyes, which makes them look and feel brighter, and rub a little into my eyelashes to help them stay soft and not dry and brittle. It’s small enough to throw in your bag and take everywhere with you, and a little goes such a long way, a jar will last you forever! Find your favorite friend who does Young Living oils (ahem, myself included), and ask them how you can get some!

Cotton Candy Grapes. I have no idea what miracle went into making these taste the way they do, but it is epic. You know when you’re really craving dessert, but you try to be adult and choose something healthier? This is a win! Not only are they perfectly sweet and juicy for a grape, but they literally taste like cotton candy. It will take you right back to that baseball game when you were a 5 year old licking the sticky blue whisps from between your fingers. Sweet craving satisfied! Trader Joe’s has them, and Walmart and Kroger/King Soopers do at times as well.

These stamps. All the heart eyes! Yes, I am the lady holding up the line at the post office because I want to see allll the stamp designs before I choose which ones to buy. These ones do not disappoint on the cuteness factor! I bought an extra book of them because I was so in love and wanted them to last a long time. I seriously want to send mail to all the people just so I can use them, and on the same hand don’t want to use a single one because I find them so adorable and I love looking at them. I don’t know how long they’ll be available, so hop to it and get some of the cuteness before it goes away!

Oh, and let’s circle back to the cookie butter again…according to my fire partner it also works amazingly ON TOP of TJ’s dark chocolate peanut butter cups, in case you needed another reason. Now run!

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

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Mixed Media Self Portraits

When Mark travels for work we don’t do much. That can be tough for the kids, but without him here to drive us and to push me around long distances in my wheelchair, we just aren’t really capable of getting out. I try to plan special things for when he’s away that break up the time and give the kids something to look forward to. We almost always order pizza with all the topping he won’t eat (hello olives and peppers!), we rent movies, and come up with activities we can do while we are huddled in. Today I’m sharing with you a fun idea we copied from another family, and had so much fun doing it.

First I took a picture of each kid (and dog) against a white wall in our house. Then I printed them out in black and white, set out our crafting buckets, and let the kids get to work. The rules were there were no rules. They took scraps and stickers and colors and every creative thing they could rummage, and transformed their pictures into works of art. I did some with them, and we truly had the best time giggling and getting our creative juices flowing. The pictures are proudly displayed on our kitchen wall, until the next thing we come up with!

Try it yourself! It’s great fun for kids and parents alike!

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