Tag: Motor Neuron Disease
Wordless Wednesday
Please leave me a comment, it lets me know you’re listening!
Wordless Wednesday
Please leave me a comment, it lets me know you’re listening!
Giving it Up
This week I had a pretty hard doctor appointment that revolved around the words “severe muscle impairment,” “tracheotomy,” and “ventilator.” The same day I received an email reminding me it is nearing time for me to recertify my national Paramedic license. It was a sobering day.
For these past couple years, I have let my husband’s encouraging words and glass-half-full spirit spur me on in believing that I will walk in my Medic boots again. He was always reassuring me that we would get through this; I would get strong again and go back to the career that I love. During that time I have struggled with who I am when I’m not a paramedic or a firefighter. It became such a big part of what motivated and moved me that when it was gone I struggled with depression and wondering who I was. I still do at times.
Being a paramedic and firefighter is unlike any job on earth. To get to walk into people’s lives at the time they need you most, it’s indescribable. It was a privilege and an honor to get to show up in homes, cars, churches; all the places people have built their beautiful messy lives, and serve them at their most vulnerable moments.
I know that I am loved and cherished as I am. I know I am still me, and the people that matter the most will accept me as I am, but it has been a painful walk to slip further and further from my polished boots, the distinctive smell of bunker gear, and the smooth weight of my stethoscope around my neck. Like most folks in my line of work, I am a strong type A that likes to have everything under control. It is extremely humbling, and sometimes discouraging to see that I have lost much of that control, and have to surrender to something that controls me, rather than myself controlling it. What an important lesson in life though; one I undoubtedly needed to learn. We are not our own, and the power is not ours.
Most nights I don’t dream, but when I do it is of being back on the streets alongside my cherished partners, rushing toward the danger and the opportunity to help save a life. I know they are just dreams, but until I can’t anymore, I will keep clinging to them with a smile.
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Goodness
It has been two years since I’ve taken a shower. Until today. Well, a normal one anyway. Because of having a central line in my chest that can’t get wet, it’s been a lot of top half/bottom half showering, or sponge baths and then washing my hair. Well last week my central line was pulled, and replaced with a port that sits under my skin. It’s accessed once a week, which means Monday morning I get to pull it until it is replaced by my nurse later in the day.
Today I sat in the shower and marveled at how incredible it feels to have hot streams of water pouring over my head and down my shoulders. I washed my face and then got to rinse it off in the steaming spray. It!Was! Glorious! I may or may not have had to push my emergency button for help getting out because I overdid it a little. My bullet journal got an early update today, because I don’t even care what happens the rest of the day, this is a wonderful, excellent, outstanding, very good day.
If you can’t reach me, you know where I’ll be! Enjoy this picture of me deaccessed, sparkly clean, and oh so happy!
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Murphy
Today I am headed in for a double surgery. It’s been one of those “if it can go wrong,” weeks. Not to worry though; we’ve got this.
For a few weeks and a few wasted doctors’ visits, we have been trying to get to the bottom of a fever and severe pain from my J tube. It was finally just discovered that I have what’s called a Buried Bumper. So I will be going in to have it removed from where it’s imbedded, and hopefully they will be able to place a new one right away.
Not to be outdone, yesterday the central line in my chest started infusing everything in a big balloon of swelling on my collar bone, instead of into my heart. This access is very important for me on a daily basis, so they’re going to be removing the old line and giving me a new port at the same time as the first surgery.
Here’s to things always being an adventure, to a good long nap, and to knowing that I am well loved and cared for, even when my middle name seems to be Murphy.
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Big Adventuring
I am deliciously exhausted and nursing pain in new places, and it is wonderful. My heart has struggled throughout this summer to send my loves off to do things that I no longer can. For awhile I tried to tag along and keep up, but reality was that my limitations became an anchor for them, and it made me sad to see my little ones have to miss out because of their sick mama. Eventually I started insisting they go along and enjoy themselves without me. My sweet babes graciously offer to stay behind with me, but I know in their hearts they will feel disappointed. I smile big, tell them I will enjoy the chance to rest, and send them on their way to enjoy roller coasters, baseball games, and long walks through special events. This weekend however, I went all in.
I have missed our summer camping trips and been hungering for the fresh peacefulness of escaping from the city to soak in nature’s quiet. No sooner had I mentioned how much I wanted to camp was my man working hard to find us the perfect spot, and getting our camper ready for our first-last summer camping trip. I am usually excellent at planning and preparing these things, so it was frustrating that as the weekend grew near I was making my list of things to prepare smaller and smaller with hopes of actually accomplishing something. I had to choose easy instead of the usual fun and unique camping meals, and I may have completely forgotten a few things we needed, like towels, but I kept reminding myself the prize was just getting to be present, even if that meant pop tarts instead of bacon and eggs over the campfire.
We surprised the kids and had everything ready to go for the weekend when they got home from school Friday. And by /we/, I mostly mean Mark, who took my lists and bustled around to make it happen while I mostly stared at the ceiling and willed my recent surgery scars to stop screaming for attention. The joy on their faces was worth the fight.
It was a different experience, checking and double checking that the bags of medicines and medical supplies were all accounted for, and the heaps of pillows and blankets and bedding foam that took up half the space were all for my little spot, but no one complained about having to drive slowly because of the bumps, or having to spend extra time to find a fishing spot that was accessible for me. Everyone chipped in to help, and we had the most amazing time.
The weekend was filled with spooky stories, wiggly night crawlers, sunscreen, firewood, and a giant canvas of beautiful stars. I pushed myself to every limit to get to cast my line in the water as many times as possible, and snuggled up with my dog to rest while everyone else enjoyed hiking and geocaching. It was a simple weekend, and one I will treasure for the incredible satisfaction of getting to spend time with my tribe, doing what we love, and for a little while feeling like the mama adventurer I used to be.
I have been slow to move today, and struggled through some extras aches, but for the best reason. I will never stop hungering for more days making beautiful memories with my people.
Oh yeah… and next time my goal is to get my hard working hunk in front of the camera more!
Surgery Blessings
I had a pretty big and difficult surgery last week, and have been plodding through a rather arduous recovery in the days following. I’ve not hardly been in the public eye since then, other than trips between hospital and home, and a few brief marathon efforts to participate in family activities. I’ve made attempts to clean up into pretty sundresses and lip gloss in lieu of the pajamas and heaps of pillows that have filled my recent days, but clearly I’m still sticking out like a wounded chicken. Or something.
Everywhere we have been, people have offered whatever they could to make things easier for me. They have cleared elevators for me; I believe I was crunched over in my wheelchair, hugging a pillow for dear life with tears streaming down my face when I heard a lady say, “you two go ahead, we’ve all been there.” People have called their children to move out of the way, given up seats, gifted anonymous flowers, held doors, and waited painstaking moments for me to take whatever time I needed.
This morning we waited at the end of the block near our house for our oldest daughter to march by in the holiday parade. Everyone was melting. The heat combined with the sickening humidity was almost enough to suck all the fun out of it. There I was in a crowd of sweltering people, and this tiny elderly woman came shuffling up to me and thrust a frosty red cup of ice water into my hand that she had walked back home to get just for me. I was almost speechless. It was such a selfless act, and I truly felt undeserving, especially considering all the miserably hot people around me. I thanked her profusely, and we all took turns sipping the cold goodness in the beating sun.
So many random people saw my hurting and my weakness this week, and they were quick and generous to act. It got me thinking though… what about the people whose hurting isn’t so visible? What about the ones who are more broken on the inside than out, and could also use a gentle smile or a beautiful flower, or just to know that they are seen and cared for? I guarantee they are all around us, and they may be trying to hide it just like me, but we shouldn’t have to look far to see another soul thirsty for a refreshing dose of encouragement, or an extra helping hand. I want to remember to look for ways to be kind, whether I can see that a person needs it or not. Chances are, they do.
More about my surgery misadventures later; for now let’s finish off this good long weekend with a renewed passion to be the hope this hurting world so desperately needs. I’d love to hear ways you are finding to spread kindness around you!
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Wordless Weekend
The Good, the Bad, and the Beautiful
This was such a rotten week you guys. I would recount it for you, but seriously I spent so much of it face down I’m not even sure which days were which.
Mostly what I want to share with you about this week though is today. Today was a day of scrolling through the camera reel and remembering, or maybe just really seeing for the first time the big and beautiful and maybe even amazing things that had everything to do with survival, whether I knew it at the time or not.
There was ugly. There were struggles and new limits and fears and just brokenness, but won’t you look with me? See the undeserved beautiful that cast a beautiful afterglow through the storms.
There were tender snuggles.
There were endless warm blankets and hard day socks. Never forget a pair of hard day socks.
There was HILARITY (slash panic) when my children somehow just haphazardly grabbed a mole and brought it into my bedroom to show me. A MOLE people!!
There was awe at the perfectly inspiring timing at which my sweet mama shared her sky with me from several states away.
There was giggling and excitement as the kids set up our tent in the backyard for an end of summer camp out, which I could see in plain view from the giant bay window at the foot of my bed.
There were breathtaking flowers along the walkway to the hospital.
I wasn’t stalling, there were like, a LOT of them!
There was cheering as my soon-to-be-school-goer beat me at his new letter sounds game.
There was the sweetest little pregnant mama houseguest who seems to think I’m the bestest snuggler of all….
And after… I lost count how many… days of not leaving home for anything other than the doctor, after a few dry runs and a lot of help from my wingman this morning, I busted on out with my two big boys for this…
And this…
AND antiques…
I don’t quite remember how I got back into the house, but I did in a sore, exhausted, pale-ish, and wonderfully happy and satisfied heap, where I intend to stay well into the snuggles of the evening. Who knows, maybe we will find another adventure or two to cram in before sundown. 😉
Look back through your own week; did you miss any hidden gifts that might have been the very things that carried you to the weekend?
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Choosing Hope 