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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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Vacancy

After another night of tossing and turning, I woke this morning with my heart feeling heavy, raw. A strange, sick-butterfly feeling tumbled in my stomach. It’s funny what the heart remembers before the mind even has a chance to catch up. Today it has been five years since I was woken by the call that my little brother had unexpectedly passed away.

I suppose it still feels so raw because in the years that have passed there have been many curveballs to handle, which have left little time for the grieving process that I know is still to come. Even so, my chest squeezes tight and my eyes pool with watery thoughts as I ponder back on the special friendship I shared with my brother. There is so much I wish and need to talk to him about right now, and it’s crushing that I can’t.

I want to work on the streets again with him side by side. I want to drive to Kansas to cheer through his epic fourth of July firework extravaganzas. I want my youngest to know his Uncle Ben as he grows. All these things in a beautiful, painful tangle of joy and heartbreak and anticipation of an eternity.

The rhythm of life continues to ebb and flow, even with these hole-shaped pieces of my heart unfilled. Someday, all will be new, but while I am waiting I’ll never stop missing him here.

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Cheering You On

This brave beauty of mine, she has something to teach all of us. During her time in her new middle school, she has tried out for many things. Student council, solos in choir, cheerleading. Each time she has been turned away, and yet I have never heard a word of complaint on her lips. She simply picks herself up and keeps going. She has learned something most of us adults still struggle to grasp; our identity is not in what we do, but in who we are.

She has been pushing herself hard for months in anticipation of trying out to be a cheerleader when she starts her freshman year of high school next year. She’s been working daily in physical therapy, in tumbling, and at home to learn the skills she needs to have, and to push back physical limitations that the other contenders don’t have.

She’s been at clinics and tryouts every evening this week, giving it her all. Friday she will find out who has been chosen. I’m so dang proud of her. I’m pulling so hard for her to make the team this time, but regardless of the outcome I’m fiercely proud of who she is and how she teaches me to always keep pressing forward.

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Twists

Yesterday started out with a heartbreaking phone call, and ended with me back in the operating room having one of the procedures from Friday needing to be redone. For a Monday, it was a doozy. I kept finding myself wanting a break long enough to have a hard cry, but the day was just non-stop happening, and there was no time for that. For a hot minute I was angry. I was complaining, and I didn’t think it was fair. Maybe it wasn’t, but grace still showed up. It showed up in my mother-in-law being able to handle the details of the hard morning news for me so I could get to the doctor, and my angel of a neighbor not only driving me back and forth to the hospital, but also showing up to make sure my little people were doing ok, and receiving a homemade meal for them, cooked by someone I’ve never met. Even when I painfully eased into bed last night, my pillow didn’t need to catch a single tear, because while my husband is away on work this week every little body in the house has taken up residence in my bedroom to be close to me. It’s just the cutest thing. I don’t deserve such gifts, yet they flow so freely.

Today I’m a little shell-shocked. My heart is sad. My everything is hurting. My mind and body are exhausted. But there is an unusual amount of sun today, tiny sprouts pushing up in my windowsill, and my kindhearted nurse will come by to care for me and make me laugh as he always does. I hope that on every hard day I continue to be reminded to look for the gifts, and I hope that as my children grow they will learn to do the same, because it sure makes the worst of Mondays more bearable.

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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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Glimpses

If you’ve known me very long, you know how special purple, rainbows, and butterflies are to me. Purple was our Ellie’s color, and on the day we buried her, her sister’s butterflies hatched way earlier than expected under the most perfect full rainbow painted across the gray July sky. Every time we see these things now, they are like a sweet hug from our girl, reminding us of her footprint on our lives.

As we celebrated her 8th birthday a few days ago, the mundane parts of a winter day were punctuated amazingly by the sweetest gifts, seeming to be perfectly placed just for us.

As I lay watching a movie with my loves, we all turned to grin at each other knowingly as a conversation about rainbows erupted in the middle of a suspenseful plot. My husband turned to me. “How many movies do you suppose they start talking about rainbows in,” he grinned. It was true. Specific, beautiful reminders of Ellianna Grace were purposely left in plain view for us on the anniversary of her birth. The others I was able to capture, to look back and remind myself of the goodness.

Purple and rainbow, in a dress fit for a princess!

A photo that popped up in my Instagram feed from Pitter Patter Art.

Life is sweet indeed.

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Brave Beginnings

Today we are celebrating the 8th birthday of Ellianna Grace, and I can’t help but smile. Four and a half months seems like such a short time to get to have a person in your life, but eight years later, she is still making a difference and changing lives. From the relationships we have formed because of our journey with her, to the hearts we have gotten to relate to and bring comfort to because we have been there. Her story reaches on.

This week for her birthday we raised money for Brave Beginnings, an organization which provides life sustaining medical equipment to NICUs in order to support these tiniest of babies. With the generous help of our family and friends, we surpassed our fundraising goal within hours. Our little girl, making waves and bringing change. Couldn’t be more proud. My Jesus who promises to hold her, also promised that her story didn’t end with her death, and it most certainty hasn’t.

Happy birthday, baby girl!

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The Other Side

Foster care runs deep in my family. For different reasons and in different places, we are no strangers to the many children needing a home and a family for a night, a month, a lifetime. It began in the summer of 2012 when Mark and I took in a beautiful 9 year old girl who had lost her parents in a country far from here, and found herself in a heartbreaking situation once stateside.

Since then, my extended family has been through the hours and months of training and preparing and opening their hearts to many different children who for varying circumstances have needed a soft place to land. We have been witness to heartbreaking trauma, soul-challenging obstacles, and mind blowing accomplishments. One of the most surprising moments however, came more recently. I suppose there is a certain stigma people imagine when they think about foster care, but it really hadn’t occurred to me until these words pierced me like a jolt of lightening. [Summarized] “I could never do it. I would want to hurt the parents for hurting their child.” That was the moment I realized that perhaps the world is under the misunderstanding that an abusive parent is the only reason for foster care. I don’t dispute there are cases like that; we know of many, but let me take a few moments to show you another side.

There is the story of the children whose parents have tragically passed away; the children who have no living kin, and have nowhere to go but the sacrificial arms of a foster family seeking to fill those gaps, but there is another story closer to my heart. There is the story of a child so deeply and irrevocably loved by his parents, that the only way to save him was to say goodbye. There is a boy who despite the caring and stable home he was raised in, saw and felt greater trauma and loss than his tender heart was ever meant to bear. There is a boy who couldn’t seem to grab the lifeline of hope and healing in the middle of his grief, and his heart straight cracked in places no one knew. The only way he could figure to make the hurting pieces less jagged was to force himself to stop feeling. There is a boy who saw his parents call and reach and beg for him to let them help carry his burden, but his fear of losing the people he loved most caused him to run blindly in the opposite direction.

This boy built unscalable walls to hide his bleeding, and though he knew both parents stood on the other side of those walls, willing to take him back again and again, he continued to run faster, desperately seeking any possible means to numb the throb that he felt. Repeatedly this resulted in his ensnarement in traps far darker and more painful than the imagination cares to venture, but every time he found this bottom he also found his mom and dad there, waiting and ready to pick him up and dust him off again. It was no light work on their part; they sacrificed their own comfort, friends, reputation, money, jobs, and homes in hopes that this time would be the last time. They repeatedly showed up to gather his sharp edges again, even when the razor sharpness sliced into their most tender places.

There is a boy in foster care not because his parents were too neglectful or abusive, but because after years of the boy’s broken heart pushing him farther and farther to prove that he was incapable of being hurt again, he reached a place so far they could only stand by and watch in horror. Yet they did; they stood there. In the pouring rain of the deepest, most painful valley, they stood as close as they could get, nothing left to offer but to cup their bleeding hands around the cutting edges of his brokenness and quietly say, we will never give up fighting for you.

He wasn’t carted off because of parents who refused to care for him, rather his mom sat heaving deep, excruciating sobs in the dark after she was told he wouldn’t be able to come home, and she wondered over how to tell his siblings. They don’t fail to show up for visits because they can’t be bothered, rather they drag themselves beaten and weary to his side every chance they are allowed, so that together they can help him as he wakes to his reality and begins the long journey toward victory.

There is a family who cries and clings together to comfort each other in the moments that pass without their son and brother in their daily lives. There is a family who still drags themselves to standing, fresh scars catching the daylight as we keep fighting for the boy we still call our own, until the joyous day we get to say, welcome home.

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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!

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Food Fight

The results of my manometry testing came rolling in early August, and they weren’t what I hoped. I was hoping that for as uncomfortable as that experience was, it would result in me not needing to rely on a feeding tube any more. Unfortunately the testing showed that there is complete chaos instead of organized communication between my brain and my guts. As my condition has progressed, the nerves of my digestive system have ceased to receive the correct messages from my brain, so my body doesn’t quite know what to do with food.

My doctor had stopped my daily TPN (total parenteral nutrition) back in June to see how I maintained without it. I dropped a quick 15 pounds. He is still holding off on that, but with the recent test results he said I needed to go back to having a J tube to help make up for what I can’t eat by mouth. Since I’ve had so much trouble with past tubes migrating where they shouldn’t be, the decision was made to surgically add another tube directly into my jejunum, and convert my other tube to just a G tube, which sits in my stomach. I was pretty disappointed with this news, as I’d felt like I had been eating and keeping down a decent amount of food. The end story is it’s not enough to maintain my nutrition.

Since I have an important surgery scheduled in October to address a spinal fluid leak, and my Neurosurgeon wants me to gain some weight before then to help with the healing process, the sooner the better for getting my feeding tubes up and running. I was referred to a liver and pancreas surgeon, who would also be getting some important biopsies while he was doing my tubes. I tend to groan each time a new doctor is added to my growing list of specialists, but it didn’t take me long to realize I really liked this guy, and he was doing his best by me. So, we packed up for another trip to the hospital.

The last week in August we had the kids divided up among friends’ houses so that they wouldn’t miss school and my main man could spend the first night in the hospital with me, which is about a two hour drive from our house. The morning of surgery was a rough one; I had learned that because of lack of “real estate,” so to speak, this surgery would not be able to be done arthroscopically, which made me pretty nervous. Everything seemed to be running behind, so it felt like forever sitting in this tiny room with way too much time to think about what was about to happen. Even though I was in the cancer wing of the hospital, they were funny about using my port, and instead I got stuck with a terribly done IV line that was clearly going to prevent me from the writing and drawing I had planned to do during my stay, let alone being able to use my crutches to get around. I was angry, exhausted, and terrified that morning, and when my sweet surgeon peeked in on me at one point, I begged him to just put me to sleep right then.

My sister was quick to pick up on my panic, and during the waiting she Facetimed me with my little nieces and nephews, which did wonders for my heart. Whatever did we do before cell phones?!

Usually I get premedicated before rolling into the operating room, and it tremendously helps knock down the anxiety of that huge, bright room bustling with masked people and all kinds of frightening equipment. This time that didn’t happen, and after kissing my man goodbye I ended up on the operating table very unmedicated with just a couple nurses and no surgeon yet, watching the counting of the piles of hard metal instruments while tears poured uncontrollably, stopping to pool under my ears on the refrigerated-feeling pillow. There are just some moments there are no bootstraps to pull up on, and I’m grateful that in the frenzy of such unrest, I was still kept, eventually whispered off to a peaceful sleep.

Waking up found me with a large incision from ribcage to belly button, and now two tubes instead of one protruding from my belly. My hubs stayed the first night in the hospital with me before heading back to Ohio to care for the kids. Of course things went smoothly until I was alone, when I started experiencing difficulty catching my breath, pain we just couldn’t get on top of, and puking my guts out, which was a new form of torture with the length of my abdomen held in stitches.

The baffling thing was trying to get my nutrition going through my new tube. For some time I had been using Liquid Hope which is a blend of real, actual food, like fruit and veggies and proteins blended up. Well the hospital didn’t carry this, so they were trying to convince me to use one of the formulas they had to offer. Read the ingredients on these some time, it’s disgusting. Sugar and fillers and all kinds of things I shudder to pronunciate. I had tried these early on when I didn’t know any better, and not only did they not help me gain weight, I felt terrible on them. I wasn’t about to throw all that progress away, especially while I was trying to heal from major surgery. The nurses and doctors made it increasingly apparent that they were inconvenienced by my request, and kept sending different people in to try to convince me to have formula. I even asked if the cafeteria would let me order meals and just blend it for me to go through my tube. I don’t think they even checked into that one. When they realized that I wasn’t going to change my mind and I’d just as soon go without than willingly ingest something that makes me sick, they worked out a plan. It was so silly. They were able to get some Liquid Hope, but they said they weren’t able to open it and mix water into it, so they would courier it over to the milk bank at a nearby Children’s Hospital, they would open it and add some water, and then courier it back over to my hospital for me to use. The whole situation was sadly comical, and left me wondering why in a place of health and healing I was having to fight so hard simply to be fed real food. I was not afraid to stand my ground, but how many people are at the mercy of these ridiculous rules, and suffer because they don’t have a voice for themselves? It’s sad, and I hope that we will see a change. Healthy food and nutrition isn’t something that should have to be begged for, nor should anyone be made to feel like a burden for asking for such.

The days in the hospital dragged on, and I grew so frustrated with the way I was treated and the loneliness of sitting there alone, I pleaded with my kind surgeon to spring me loose. I knew I probably wasn’t ready, especially for the two hour car trip over the pothole-riddled highway, but the healing medicine of being back with my loves was a much stronger pull for me by then.

Now it’s close to three weeks later, and I’m still dragging through this recovery, anxious for the day I can cough or sneeze or laugh without feeling like the angry red stripe down my middle has been torn fresh. I am feeling anxious with another surgery on the near horizon, and wondering if I will even feel recovered before parts of this process repeat themselves. For now it’s lots of snuggles, games, and movies with my people in my giant bed, and trying to believe that this too, will pass one day.