Tag: Multiple System Atrophy

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Quiet & Brain Surgery

Hannah

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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Running

Hannah

There are many things I struggle with in regards to living with a terminal illnees, 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.

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

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New Wheels!

Hannah

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!

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

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Life Expectancy

Hannah

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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Missing…

Hannah

“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”

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

Gratitude

Gratitude

Hannah

My heart is struggling with gratitude. It’s a beautiful season, and all around I see my people running races and taking hikes to see beautiful trees, and I have grumbled to not be able to do those things now. I had a procedure yesterday that was difficult for me, and stirred a lot of fear and unease. I can feel it tempting to swallow me. This is when I know I need to fight hard for a grateful heart.

Knowing this season has pulled hard at my mental health, I started keeping a gratitude journal. Not only does it force me to think about the best parts of my day, but it leaves a road map for me to look back on and remember all the big and small graces that have sprinkled my days. I gifted myself a Sprockett 😂, and I’m using it to create a daily reminder of all the things I have to be thankful for.

Have you ever found yourself in a season of life where you struggled with gratitude? Lets band together and make sure we are stopping to notice the little things, even when the big things try to overwhelm us.

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