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Tag: MSA
Running
There are many things I miss about being able-bodied, and one of the big ones is being able to be active. Working out or going for a hike or a run has always been one of the best coping skills and stress reliefs for me, and I struggle with not having a comparable activity now that I’m not able to do those things.
Though I usually ran just for fun, I had set a goal for myself once of running a race someday. I figured even if I did just a 5k one day, I could knock it off my list and enjoy the experience. Well I sat on that goal for too long, and it never came to be.
Fast forward to today… I came the closest I will to meeting that goal! My friend and fire partner, Michael, who has a lot of miles under his running shoes, teamed up with me to do a 5k together. We chose a virtual 5k that fit our friendship perfectly, mapped out a course, and he pounded the pavement while pushing me in my wheelchair. It was glorious! When I closed my eyes and listened to the rhythm of his feet against the ground, with the fresh air tossing back my hair, it almost felt like I was running.
I know it wasn’t easy; he had to navigate getting my wheels across places with no pavement, bump me up and down a few curbs, and push me up some ginormous hills.
He never complained, and just chugged along like a freight train. It was such a special day of fun and friendship, and I’m so thankful for Michael going above and beyond to help me accomplish something in the best way I could.
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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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Big Living
I did not even get out of bed yesterday. My entire body was so exhausted from such an amazing week. Every single day I got to live big and push my limits. And I can’t help but be insanely grateful for days that is possible.
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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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Hard Doctor Day
Yesterday began at the office of my tender hearted hospice doctors. Despite my anxiety, I am always soothed by the kind hands and gentle eyes that meet me. Hearts that truly want to help; to listen and find the thing that will make my days the most bearable. I always end these visits knowing that I matter, that my needs are important, and that I have a team in my corner.
My heart thumped more uncomfortable as I had to brave the pulmonary office later. There is not the same gentle atmosphere, but one of facts, hustle and bustle. I knew by my panting for air and the bluish of my fingernails that I was fighting harder. There was no tenderness in the hard words; my days could be changing, my lungs needing more support. My positivity deflated as I considered my days tethered to these machines that help me suck in and out the air of living.
Immensely sad is what I know I felt, but it came out as anger. I didn’t even know where to direct it, and my sweet little loves ended up getting the brunt of my frustration as I reeled with how to reconcile my thoughts and fears. I finally removed myself, tucking early into bed so as to not keep expressing my frustration to the people I love so dearly. Some days you just have to put it all to bed; pick it up again when your courage is renewed.
The facts are the same today, and my heart is still sad, but I am renewed in my hope for these coming days. There is nothing I won’t do to fight for more beautiful days with my people. Expectations laid aside, for I know that the true meaning of my days is not found in my misguided expectations, but it’s found in the great gift of deeply loving and being deeply loved by my people. That’s where you’ll find me; wrestling another hard bit of my story, but drinking deep in the grace found all around me.
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The Best Roller Coaster Ever!
I was gifted with big strength this weekend. It’s an exciting weekend in our town; Labor Day is celebrated with fireworks, big festivals full of vendors, music, and eating, and a long parade. As I brave my days not knowing if I’ll be able to make it out of bed, I was especially pleased to be able to fully participate with my family this weekend.
Friday evening we spent with our season passes at our amusement park. Usually I sit patiently in my wheelchair and enjoy the thrill-swept faces of my loves enjoying the rides, but I had a crazy hair to try something bigger this time. My loving husband helped choose the smoothest of the roller coasters, and I used my special pass to roll my chair right up to the cars and strap in. What a rush! My kids were terrified; not for the ride, but that I was going to get hurt. Precious loves. I screamed the whole time, but from absolute joy, not pain! Next time I’m going with no hands! I feel like my life is full of many roller coasters, but that’s the kind I’d like to ride again and again! It made my day to see my littles laughing and cheering for me. I enjoyed the rest of the evening watching them ride while I sipped Dr. Pepper and rolled around with the lights dancing on my wheels.
Mark and I spent Saturday afternoon together to enjoy a show and dinner together. I love getting to have time with my man one on one, hearing him laugh and catching his gaze over a table for two. I surely am the luckiest.
The rest of the weekend we enjoyed the vendors of crafty creations, delicious food trucks, and fresh squeezed lemonade. I found the perfect gift for my sweet nephew, and we let the sun warm our faces until we were all glowing and exhausted. Monday morning we pulled our chairs right up the street from our house and enjoyed an hour and a half of one of the most spirited parades you’ve witnessed. The town really comes out to celebrate this day, and we enjoyed waving, clapping, and admiring all the fire trucks and marching bands.
After the parade we even squeezed in a trip to an outlet mall we’ve been wanting to check out, and enjoyed browsing the stores in and out of the sunshine. Our girls are reaching the age they like to walk to the stores on their own with their friends, so we stayed nearby with the littlest one and tried out all the games in the game store. There’s fun to be had wherever I go with these two!
At the end of the day I was thrilled to have enough strength to love my family by cooking them a special dinner. It’s such a big gift in a small thing; being able to sit at the counter and chop vegetables and mix in mixing bowls. We sat down to enjoy steaming bowls of home cooked goodness after a deliciously busy weekend spent together, and I couldn’t be more grateful.
How are you embracing your strong moments today? How are you spending your strength to love your people?
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Four Faves
I’m away from home in a strange bed tonight, and I thought I would do something a little different on my blog to pass the time. As I grabbed a few “necessities” and threw them in my bag on the way out, I thought about how some of the best things are discovered from other people’s suggestions, so I’m going to share with you a few of my favorite things!
5 gum in Strawberry Flood. It’s no secret that the peppermint 5 gum is my absolute favorite, but not too long ago I tried the strawberry on a whim when I came across it. Just like the mint, it keeps its flavor long after most gums fade. The strawberry is a perfect blend of tart and not-too-sweet. It’s juicy and fruity and just the best pick me up on a hot day of running around.
Double stuff is my jam, but an Oreo completely encased in fudge? That is perfection! These tiny bites have the perfect ratio of cookie to chocolate, and they come in pre-measured portions so you don’t go overboard! They also come in flavors like mint and coconut if you’re looking to switch things up.
BiC Gelocity pens. Not only do these come in a bunch of vibrant, fun, as well as practical colors, but they glide so smoothly you’ll never want to stop writing! I use these for jotting down notes and writing letters, as well as doodling or drawing in my journal and sketch pads. The creamy inks are a pleasure to work with! I keep a variety of pens tossed in my bag for when opportunities arise.
Ecolips lip balm from Whole Foods. This organic lippy is divine, and I find myself reaching for it time and again. It moisturizes exceptionally well, and never feels thick or sticky. Yumberry is my favorite flavor, but they have many delicious flavors to choose from, like vanilla honey, blood orange, and pomegranate.
Black paper sketch pad. I got some great new markers and pens for my birthday, and I picked up this sketchbook at Michaels to practice with them. Not only are the pages super smooth and thick enough to prevent bleeding through, but I absolutely love how it makes the colors pop!
There you have it, a few of my favorite things. I hope you find something new you enjoy!
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Wordless Wednesday: Glimpses of my World
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