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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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Let’s Talk About It

I have been trying and trying to write a post, but the words just won’t flow, so I’m just going to keep it simple. I’m sure most of you have already seen posts announcing that October is miscarriage and infant loss awareness month. Loads of people have been publicizing their take on 1 in 4, and trying to make the lives of their babies seen. It may have surprised you to see friends post about it that you didn’t know had been through this. The best thing I can pass on to you from my experience with miscarriage is this: it’s ok to talk about it.

We’ve had many people talk with us about the death of our youngest daughter because even though she was young, she was still here.  Our people met her and knew her and got to participate in her short life.  Our friends and family do not however, talk to us about the two babies we lost to miscarriage. That’s taboo, and people don’t think it’s ok.

Let me tell you something about people grieving a miscarriage. It is healing to talk about it.  One of the worst things about a miscarriage is that it feels like a baby that you pinned so many hopes and dreams on has slipped away unnoticed.  That mom and dad want their baby to be seen, known, acknowledged.  As soon as they found out they were pregnant they started imagining every event and holiday with that little one a part of it.  When that dream is dashed away, there are going to be holes. Remember that they are missing that little one when those special days come around, and don’t be afraid to acknowledge it.  A small token of your love, a text, a kind word… these things will go a major distance in helping to heal that mama and papa’s hearts.  Let them know you know they are missing their baby.  Let them know that you’re sad too that he or she isn’t here to celebrate.  Let them know that you care about their hurt.  I promise you these little things will be so much less awkward than you imagine, and will be soothing balm to a grieving heart.

 

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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!

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

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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?

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

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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?

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