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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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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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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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The Grumps

After a sleepless night, I’m curled under my favorite blanket watching a cloudy gray sky. I’m dealing with some nagging pain following a procedure yesterday, and it’s got me feeling down. Well, maybe just sorry for myself. There were other things I wanted to do with my day today. Thinking how to be grateful anyway… there are so many with larger struggles than I. I can lie here and save my energy for my little people who will come bounding in from the bus and find me with love to share. That’s where the gift is found; in strength that’s beyond my own, and that’s meant to be given away. Tell me, where are you loving beyond your strength today?

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Enough

I’m lying in bed as the last light of day seeps in the bottom of my bay windows.  The plasticky smell of oxygen whispers against my pillow with every breath, and I count how many times the back door chirps open as the kids run in and out to grab things for the box fort they are making.  They are soaking in the warmth the summer evenings still offer, even though school is back in session.  We have just wrapped up a whirlwind adventure of a summer vacation, and as I lie in the comfortable quiet I find myself wondering if it was enough.

We planned big.  There was hardly a week that we were not out traveling or exploring or trying out some new adventure.  We knew it was good and our family needed it. At the beginning of the summer we talked about shifting our focus to the memories and the legacies we were creating of our time together.  We definitely made big and wonderful memories, but I’m left troubling over the mundane. It is easy to make memories when it’s fun and exciting, but are we making good memories in the grind of every day?  I try to think back on my own childhood and remember the small moments.  I want my children to reminisce on our dinners around the table, braiding hair in the mornings before school, and snuggling in for a book before bedtime.  I want them to remember these things because these are the things that feel so inherently me. It will be easy to remember the thrill of a concert or the awe of a canoe ride, but I hope the kindness and love and adoration I have for them seeps deep into their souls so that when they think back on the days of packing school lunches and rubbing backs in my bed they will be overcome with the remembering of the safety and love that was there. We may still have a wild adventure or two, but for me, I’m going to be focusing on these little moments and making sure they count far into eternity.

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Summer Lovin’

Every summer for the past few years we have started off the break making a “summer bucket list” of things we want to do during summer vacation. Some things are big, some are small, but the main idea is to be intentional about using our time. I am a homebody through and through, so I would be perfectly happy snuggled in my nesting place with my tribe. I have wanderers and adventurers though, so we try to plan some exciting things to venture out and try while we are free from school routines.

This summer we crammed in more than we usually do, trying to check off some unique things that I either haven’t done or likely won’t able to in the future. It has been a blast. I have dug deep for energy and stamina to hang with my people, and while the nights find me collapsed in an exhausted heap, it has been exhilarating to taste so many joys this summer. We stretch me out, hydrate, medicate, and wake up again to take on the next adventure.

From staying in pajamas all day and doing sidewalk chalk, to concert hopping and driving to new destinations, we are creating a beautiful bucket full of the exciting and the mundane of sweet summertime. What is on your bucket list this summer?

If you are friends with me on Facebook, you may have already seen some of these, but enjoy the pictures of some of our adventures!

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Incurable Hope

It has been a long six years trying to find a diagnosis. Based on my symptoms and the way they have progressively worsened, we’ve known it was some kind of degenerative neuromuscular disease, but we haven’t quite known the prognosis. Early on it was thought to be MS, and I was able to work through it, making some modifications to how I did things, but vastly able to continue life as normal. Things continued to decline though, and I found myself losing the strength and endurance I needed to continue working as a paramedic. This is when I cut back to part time paramedic, and also took an office job in organ donation. As fulfilling as that was, I eventually found myself no longer to make the drive, or even remain upright for the hours that it required. Eventually I had to face that I could no longer safely work in any job, and I needed to save what little energy I had for my family and friends.

It’s been a frightening journey at times, especially with the unknowns, but we are beginning to have some clarity. A recent brain MRI showed significant damage to my brain stem, which is responsible for many of the automatic functions of the body. This information shed light on why I was having symptoms related to that area of the brain, like trouble regulating my breathing. All of these pieces started to fit together and pointed to Multiple System Atrophy. In some ways this was a relief, as the contenders like ALS have a very short length of survivability. MSA comes with its own fatal prognosis though, typically within 5-15 years. Being at year six, I already feel blessed for the time I’ve had and continue to enjoy. I’ve tried to stay in the moment and be continually grateful, although I’ll admit that sometimes my attitude stinks and I fall into a grumpy state of forgetting the gifts I’ve been given.

I know that God knows my heart and hears my prayers, and those of so many who love me. I know that He can take this from me if He chooses to. But even if He doesn’t, I will still choose hope and thank Him for every moment He allows me to have here.

I hope you’ll help me, dear readers, to continue to find Hope and Grace in the day to day. I know that it’s there, and sometimes I just need help to lift my eyes up for it. Please don’t treat me differently; let’s laugh and dance and do big and small things without fear of the future. I’m ready for today, how about you?

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