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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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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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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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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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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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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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