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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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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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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.

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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!

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

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Weekend Lifelines

It feels like this week just chewed us up and spit us right out. It’s easy to forget to count the beautiful things when it feels like you’re fighting a cold dark riptide, but it’s the snapshot moments of beautiful life-gifts that help us pick ourselves back up, dust off, and try again.

Here’s to the strangers gifting homemade ice cream cake, the beauty in the humming of the clumsy bumblebees, and the quiet peace of holding a sleepy, feverish hand. The things that tug our heartstrings right out and make us want to stand taller, fight braver, do better. Here’s to the weekend of snuggling close with our loves, refilling our heart-tanks, and showing up ready for a new week without truly knowing how we are gonna make it.

Warrior on.

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Red Footie Pajamas

I distinctly remember my first time visiting the childrens’ unit at Cedar Springs Hospital. I was new to the city as an EMT, and while I had run my fair share of adult psychiatric calls, this was my first child.  Actually, in my naivety, I didn’t even know there was such thing as a psych unit for kids up to that point.

There I was, walking into the building for a boy under the age of 6 with an arm injury… thinking he must have been the son of someone who happened to be visiting.  I’m certain there was an audible squeak of my boots stopping abruptly against the hard floor as I turned the corner to find the entire wing of the building occupied by children of various ages. A staff member began rattling off the details of how he fallen out of bed, and my mind was searching for the inexplicable reason that he had been sleeping in a tasteless wooden bed in a duplicated room with hard sterile floors instead of tucked into the shelter of his parents’ hugs and kisses in his own familiar bedroom.  I was silently trying to piece together this mystery when another staff member ushered my patient into the hallway; a dark-haired little guy, hardly taller than my hips, padding silently in red footie pajamas.

That night I learned one of those hard life-truths that you don’t learn little by little; one of those truths that smack you in the face like the concrete-sting of a belly flop into icy water.  Though I lost that bit of innocence on that call I still had many questions bouncing around between my mind and the soul that stared out at me from those young brown eyes.

It wasn’t long before running psych calls for youngsters wasn’t unusual for me.  I ran the frantic 9 year old who pleaded with his grandma to give him one more chance after tearing apart the whole house.  I ran the 15 year old cutter who had run away from home, and the 13 year old boy who successfully took his own life.  I saw a new world of confusion and pain and I struggled to understand it.  There were those who were vocal about their opinions; it was easy to assume that a lack of parenting or responsibility had created this brokenness, or that these were just bratty children needing firmer discipline.  While I was never one to say it out loud, I suppose in some ways I thought the same thing.  I wondered if the guardians were just tired of dealing with the hard work of parenting, and wanted to pass the adversity off to someone else.  I wondered if these kids felt so invisible that their gashes and outlandish displays of defiance were the only means left to spark some flames of attention from the people they craved it from.  While I refrained from joining in the open toxic banter of judgement, I still pondered these questions because some things you just can’t understand until you’ve tasted them more personally.

Fast forward several years to my own boy standing at the dawning of teen-hood.  Two parents who loved him unconditionally, a stable home in which all his needs were met, a routine of discipline and appropriate freedom, and yet his soul was changing, darkness clouding his once crystal blue eyes. Despite all the good things in his life my young boy had experienced tragedy that he was never meant to have to bear.  His normal had been ripped and shaken by such affliction over a short amount of time his soul halted in shock from the uprooting of all he knew to be true and safe.  So began this terrible and frightening battle of his entire being trying to reconcile things that his young soul was not created to understand.  He learned to build impenetrable walls to guard his bleeding wounds from further pain.  He forced himself to not feel so that he would never again know the devastation of a hurting heart.

Somewhere between watching his destruction from an utterly helpless distance, and screaming helpless tears into starlight night after night I came to understand the full story of that boy in the red footie pajamas.

It’s not for anyone to judge why these kids are the way they are, because the truth in all of them is that at some point they experienced a hurt that was more than they knew what to do with.  There are insecurities and scars and genetic dispositions, and I guarantee you not one of these kids suddenly woke up one day with a desire to be angry or dangerous or out of control or truthfully, an outcast. There is a world of hurting young people who need not our judgement and our assumptions, but our understanding and our unbiased desire to reach out to them and help fill those gaps and holes that created their unbalance to begin with.  What would the world look like if all the adults stepped up to give the attention and meet the needs that these kids so desperately need met?

It is with greatest sincerity that I say thank you to the adults that have stepped in, or even been forced in, to stand in the gap for my son.  I get it, I do.  I know that your 25th patient contact of the day is exhausting.  I know that you came in not feeling well to begin with, or with your own trouble going on, and yet you still showed up to give of yourself to help my boy, and so many others, with his healing.  I know that in the big scheme of things, the little issues these kids are making monstrous seems so outrageously ridiculous that’s it’s tempting to give a shoulder-shake of reality.  I know that after a long day, 2am was not the time you felt most compassionate when you had to get up and deal with a new admission, or a meltdown,  or a half-hearted suicide attempt for attention, or an all-out brawl.  I know that there are a lot of days you wonder why you chose this, or you think about moving on.  I know that it may seem thankless and pointless some days, and that you may question whether you are even making a difference.  The truth is you are some of the bravest, most selfless, most compassionate people to walk this earth.  This world does need you, and you are making differences, even if they are tiny baby ant steps.  In our universe, those ant steps are huge.

So thank you for what you do day in and day out; for the sacrifices you make and the things you endure so that every story has a chance at a happy ending, and that every hurting young heart that crosses your threshold knows that someone fought for them, even the boy in the red footie pajamas.

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

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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?

I love it when you leave me comment-love; it lets me know you’re listening!