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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!

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Reality Check

Our whirlwind trip to Colorado was a refreshing change of pace, and a huge distraction from some things heavy on my mind. The effort and the community and the fun we enjoyed kept me thoroughly engaged in the present, and not thinking much ahead. At the time this was welcome and helpful, but I guess I should have expected the sting of reality once we rounded the final corner back to our new place.

On the final day of our road trip, while the backseat was munching and crunching on the joys of road snacks, I was sipping liquids for the necessary prep period before a GI procedure I had scheduled for two days later. Since my stomach processes and empties food astronomically slower than the average person, instead of nothing after midnight the day before surgery I get a lovely two and a half days of restrictions.

We arrived back at our landing pad thoroughly delighted and exhausted from our travels, and I only made it through emptying a few bags and sorting some laundry piles before I had to retire for the night. The next morning was a blur of usual appointments; therapy, med refills, a post-op appointment for my little tree whisperer, and trying to get a few loads of laundry pushed through to repack bags to leave for Indianapolis later that afternoon. Since leaving at two in the morning for my check in time didn’t appeal to any of us the day after our road trip, we had decided to head to Indiana the night before and stay in a hotel just a few minutes from the hospital so we could get more restful sleep.

We repacked bags, scurried to find someone to feed our furry best friend for us, and hit the road just before dinner time. I insisted on a detour to the hot soup bar at Kroger so I would have something filling to sip on as the rest of the family chowed down on one of my favorites; Chic fil a. We stopped at the giant candle outlet on the way down, smelled the yummy candles, gawked at the random white peafowl and strange assortment of artisan goods, and arrived in Indianapolis shortly before sunset. The kids were disappointed to learn there wasn’t a pool, and I was thoroughly wiped out, so they headed down to the beautiful college campus/concert venue/park/river walk located 8 floors below our hotel room, and I enjoyed a quiet shower and watching the sun slip down from the sky. It was gorgeous. Every few minutes the colors changed a little more and I just couldn’t look away.

Once the rest of the crowd returned to the room, I listened to their stories of dessert and playing tag and walking by the river, and then we all crawled into bed amused by the booming music of a live concert happening just outside our window. I think we were all so tired that the thundering base vibrating in our chests simply helped lull us to sleep.

Morning came way too early, and it wasn’t until I was in a scratchy gown in the still-quiet hospital that I finally had a moment to remember my fears about the day. I wanted to like my doctor; I wanted to believe that my previous encounters with him were just “off” days where he was stressed or overbooked or tired and that today I would feel reassured by his kindness and answering my questions. Nope. His brief visit with me before anesthesia left me feeling panicked and unsure, and I think if they hadn’t gotten me to sleep so fast I might have had enough second thoughts to hop off the bed and start in the opposite direction.

I woke a few hours later with a double bloody nose, a fat swollen lip, and a nurse snapping at me to stop gagging up blood because it was going to dislodge the tube that was threaded from my nose through to my intestines. It’s been awhile since I’ve been that miserable.

Fortunately my husband was soon at my side, and quick to help buckle my vibrating TouchPoints to my wrists, knowing the back and forth stimulation helps ease my anxiety. I was moved upstairs to a private room where I would remain the rest of the day to be monitored, and was so thankful to be met with the most gracious and compassionate nurse in charge of me that day.

TouchPoints ⬇️

The whole process was generally unpleasant. In an effort to better understand what parts, if any, of my digestive tract are still functioning properly, a thick tube that was comprised of a bunch of tiny water-filled tubes was placed through my nose and throat like an NG tube. Remember when I had one of those earlier on?

This was similar, only way less comfortable because a) it was much stiffer and thicker in diameter, b) he hadn’t been very gentle putting it in, and I was scraped up and bleeding from both nostrils, c) I had to stay tethered to a machine the tube was plugged into to measure the electrical activity of my digestive system, and d) my bottom lip was so smashed up I couldn’t close my mouth because *see (b). It was a long and pretty awful day. A few hours later I had to eat something to see how my stomach would react. Ok, except I had 10 minutes to do it, I couldn’t breathe well through my nose, or chew with my fat lip, and they brought me a turkey sandwich on white bread with mustard. I was like um…. I don’t eat that on a good stomach day, let alone on a day like this. But, that was the rule, and my sweet nurse had cut all the crusts off and cut my sandwich in little square quarters, so I made an effort and managed to choke down two little squares in the 10 minutes. Then more waiting as they measured any electrical changes, punctuated a few times by a cold hard X-ray film being rammed behind my spine to check the tube placement.

Ages later, the testing part was done, and my nurse as gently as possible yanked that tube from my guts through my nose which I have never had done while awake before, and hope to never experience again. Thank goodness for Nancy, the kindest nurse I have met in some time; I survived that whole process. As she wheeled me to my car she was teary-eyed and hugging me and giving me all her direct phone numbers in case I needed anything so I wouldn’t slip through any cracks. It’s the little things people; it truly means a lot whenever I meet people who still seem to have some passion for doing what they do.

I don’t remember a whole lot about the ride home other than how atrociously horrible the Indiana highways are as I was trying to sleep off the events of the day.

Waking up the next morning I had hoped to feel “normal” and have a productive day of finishing the unpacking and getting groceries and things done around home before heading in the next day for another surprise surgery that had been spliced into my life. Unfortunately I woke up feeling extremely drained and really sore, kind of like I’d lost a hard fight. My face was a mess and I was weak and shaky and my legs wanted nothing to do with walking around much at all.

Sooo I pretty much laid in bed and slept and started fighting some serious anxiety about heading into surgery again the following day having not fully recovered from the day before. I had already pushed this several days though because of being in Colorado, and my surgeon didn’t seem to be wasting any time, which made me a little nervous.

A few days before Colorado I had been evaluated for a hard and growing mass between my breast and armpit. I kind of thought it would be nothing, but that didn’t turn out to be the case, and the surgeon I was sent to wasted no time in addressing it. Mind you, these are the weeks I /imagined/ resting and meal-prepping, figuring out who on earth is going to take care of my kids, and working on gaining weight and getting strong because I have two major spinal/abdominal surgeries scheduled in early August. However, my prep time has turned out to be anything but restful, and frankly taking a bit of a toll on my already weary body. *insert free tickets for a warm tropical getaway far away with my loves right -here-*

*sigh*

Last night I got a call that this morning’s surgery got moved earlier, which was honestly fine; the less time awake and thinking about it, the better. Once again I kissed my babies goodbye in the early muted sunlight, and my older kiddos took on the responsibilities of keeping everyone safe and fed and taken care of while us parental units spent more long hours in sterile rooms and squeaky hospital chairs. I hope there is enough summer play time left to balance all of that out.

My surgeon is just an incredible guy. I’m so thankful after my earlier experience this week. He came in bright and early this morning to greet me, answered my questions, marked me up with a purple pen, and took a moment to pray over me before heading to the OR with a “see you in there kid!” It was a much more reassuring experience. Well, that and the hefty dose of versed I got before they rolled me out of pre-op, but for real, having a doctor that treats you like a family member makes all the difference.

I was frustrated with the nurses giving so many reasons they couldn’t use my central line for access and had to stick me for an IV, but after a few attempts they gave up and used my port anyway. Ugh. We couldn’t have just skipped to that part? Oh well.

I hate when I don’t remember going to sleep, but between the exhaustion of a big road trip fused with a jaunt to Indiana and the trauma experienced there running right into today, I was just beat and not a lot to fight with. I remember telling them to be careful of my fat lip when they tubed me, and then the plastic mask going over my face and that was it.

I have done little more than sleep since I’ve been home today. Perhaps that’s why the kids’ bedtimes have now faded into the wee hours of the morning and I haven’t nodded off yet, but between the throbbing of my incision and the weird sleep schedule this week has brought, I imagine it will take a few days to get back on track. My surgeon was pleased with how everything went, and we won’t know any more until results are back from pathology. In the meantime, I’m having serious panic about my surgeries in August, considering trying to convince them to change the dates, and wondering over what things I can and need to prepare at this point only a few weeks away.

I’m so thankful for the distraction of Colorado; that trip kept me from dwelling on the overwhelm of this week and beyond; it has turned out to have enough worries and frustrations of its own. My plan is to rest and recup and hopefully bounce back enough to get the house back right-side-up, maybe a few pictures hung on our bare walls, and work on school shopping and enjoying some of the last few delights this summer has to offer before we swing into a new routine of ALL my little people being in school, and these big surgeries on the horizon. For now my mind is small, and I’m thinking about breakfast and how wonderful it’s going to be to have coffee in a few hours after so many days of having to skip it.

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

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Home Calls

This is a bunch of pictures… and would you believe this isn’t nearly all of them, AND there were some occasions I forgot to even take a snapshot?? Truly though, in this case a picture is a thousand words to see the joy and excitement these babes of mine got to experience.

. . .

We had an incredibly wonderful opportunity to visit our homeland over this past few weeks. When the hubs had to go back out to Colorado for work again and the kids realized they were out of school for this one, they started begging for all of us to come along. I honestly did not have high hopes that my energy levels would keep up, or that my pain and muscle spasms would survive the 18 hour car ride, but as time grew near it was obvious how much their little hearts needed the joy and sunshine this trip would bring, and I stopped seeing obstacles and decided it was absolutely worth digging my deepest to make it happen.

We had a outstanding time. While the man of the house worked and stayed up in Denver, the kids and I shacked up in a hotel (yay frequent travel points?) in Colorado Springs, and we packed as much as we possibly could into every day. We started with a trip to the grocery (hallelujah for actually knowing what aisle to find things on for the first time in a year!) and settled into our home base where we could easily retreat to cook, eat, rest, play games, and cool off in the sparkling outdoor pool.

It was glorious to actually be able to feel the sun on our skin again, and to breathe the thin, dry, mountain air. The brief rain showers were worth dancing in because they were fresh and actually cooled things down. Lightening bugs are cool, but my goodness how we’ve missed the sun and the beautiful mountain peaks.

We packed our days full of visits with friends from sunup to sundown, even having some camp out with us in our crowded hotel room to stretch out the hours spent together. It did my heart such good to see my little people squealing with treasured friends, young and old. We visited as many as we were able, and still felt like we needed another week or two to see everyone we wanted to! We did the best that we could, and resolved it would have to happen again some time.

We visited our favorite parks, restaurants, stores, friends’ houses, and met up with neighbors, teachers, therapists, and dear friends. We were so exhausted each night, but never enough to keep us from rising with the sun to do it again. Our friend tanks were filled, our smile muscles given an excellent workout, and our bodies kissed with new sprinkles of freckles.

We got to see some of my family on both ends of the trip, and meet up with some sweet friends from California. We worked in some epic favorites like Leon Gessi’s pizza, BJ’s ice cream, Lava Land, Casa Bonita, and Denver Biscuit Conpany.

It was a ton of work, and loads of fun, and not without pain and exhaustion and some pinching and poking in the car… but it was epic and amazing and worth every sacrifice. The car ride home was a little bit quieter; contentedly tuckered out little people dreaming of their adventures… in between waking up and breathing too close to each other’s space, but all in all it was good. So good.

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Sharing Kara

Today is the anniversary of my daughter’s death, but it also an anniversary of a beautiful life. I’ve wanted to share this story since the first friend stories of Kara started surfacing, but my story didn’t fit the “instant best friend” mold, so I held back. Nonetheless, it’s a beautiful and important story, and has left a lasting impression on me.

I met Kara Tippetts after her cancer diagnosis. I had caught bits and pieces of her blog posts from mutual friends, and knew she and Jason were starting a church plant based out of the church I attended through my teen years. When we were wanting to find a new church home a friend reached out and said Westside might be a good fit for us, and that she thought Kara and I would hit it off and have a lot in common. So, we went.

We awkwardly tiptoed into the back of the small room where the tiny crowd was meeting, unsure what to expect. Obviously in a crowd that small, new people stood out. We were greeted by all kinds of people, repeatedly introducing ourselves and giving the short version of how we came to be there. I wasn’t sure how Kara was even doing, or if she was well enough to be there, but my wondering was quickly answered as I saw her bounding energetically across the room to greet us with a beaming smile on her face. She had been through surgery and finished grueling rounds of chemotherapy, and had been regaining some of her strength and growing tiny sprouts of fluffy hair on her previously bald head. I had my tiny baby boy recently released from the nicu, and she scooped him right up and cooed over him and joked over him having more hair than her. Then, barely knowing our names, she insisted we come home with her for lunch. Of course we accepted, and I spent the rest of the morning being intrigued by the joy that poured out of Kara, the ease with which she talked to everyone, and the relaxed demeanor she held even with her young children sprawling on the floor, spilling cups of water, and rolling crayons under the metal chairs.

After the church service we got the Tippetts address and briefly talked about stopping at the store to grab some provisions to make sandwiches. Again I was struck by how unconcerned she was at things not going according to plan. If I had been the one having people over I would have been thinking about it for days ahead of time, not brave enough to just throw open my doors and figure it out later. I liked Kara’s calm confidence.

When we arrived at their house and clamored inside, the first thing I noticed was the kitchen trash. I know, weird, but hear me out. The trash was full. It had reached its max capacity, and as I stepped closer I could detect the discarded fruit peelings giving off a sweet rancid smell as they sat in the warmth of the kitchen. My mind raced for a second; “oh no, I need to help, she must be completely overwhelmed!” My eyes darted around looking for Kara so I could ask where she needed me to lend a hand. But she was perched comfortably on a chair, chatting and laughing with a few of the others who were gathering to eat together. I suppose that’s the first thing I noticed because it’s something I wrestle with and long to be free of. The pressure to make sure things are presentable, comfortable, not embarrassing… but on that day I saw a glimpse of what it was to put your focus on the people rather than the pretense, and it was beautiful. Kara didn’t stress about stinky kitchen garbage, or not having a menu planned out for lunch, or whether or not all the shoes were stashed in the closet, because she instead spent her time investing in people’s hearts and making them feel right at home regardless of what was going on around them.

In the months that followed, as Kara had to go through more treatment to battle back the cancer, she warmly accepted the help of the community around her. She allowed me to make the birthday cake for her boy’s 7th birthday, which was wonderful to take one thing off of her plate by doing something I enjoyed.

Knowing that cooking dinner is not my greatest strength, I didn’t sign up to help bring meals, but eagerly volunteered to make school lunches for the kids and help with house cleaning to lesson the burden of all the things that took precious time away from loving on her closest people. It was humbling and also comforting that Kara allowed us to help her, as we all felt helpless in so many ways. I’m good at cleaning, and it gave me joy to be able to do something useful. Kara was supposed to be resting, and sometimes she was, but other times she was offering a cup of tea and telling me she felt guilty that I was cleaning for her while I was toting my own tank of oxygen along behind me. I told her how meaningful it was for me to be able to help a little bit when so many people had been there to help me too.

We sat on her bed on her birthday, my daughter’s anniversary, and cried over the sadness of being separated from our loved ones, and imagined over what Heaven is going to be like. We talked about my baby leaving for the place she knew she was leaving her babies for. It was so meaningful to be able to talk about the hard things with someone who didn’t shy away from the raw and broken parts of living. (Kara wrote about that day Here)

One of the last times I got to visit with Kara she had to pause often to catch her breath while speaking. She was growing frail and the cancer had brought harsh edges and hollow eyes, but her smile still gleamed big. She was so sick, and we all knew her time her was growing shorter, but she was still asking me how *I* was doing, and if there was anything she could do for me. She always joked that we we needed to stop competing with each other for the hardest story, because it seemed like every time we got together there was another bit of hard to swallow for one of us. This woman, nearing the end of her days saw my comparatively minimal struggle and she offered me the meals in her freezer that had been brought to lessen her own load!

The night before Kara passed away I had a dream that she died. It was so vivid that I woke the next morning and checked to see that it was just a dream. Kara was still here, but something in my soul knew the time was coming. It was Sunday morning and Jason stood in front of the gathering of people at church and announced he would be taking some time off to tend to his family. When he stepped down from the podium I saw that he was going to walk right by me and I remember quickly turning my eyes away because something in me felt like he would see the remnants of that dream in my eyes and he would know. Jason already knew. Kara went home to be with her Jesus that day, in the paradise she wondered over during her long goodbye.

I shook my head in amazement the first day I met her, and I shook my head on the last day I saw her; this woman with a heart wrenching story and every right to be withdrawn and discouraged challenged me to open my arms to the messiest of life and embrace all of it; not just the planned menu and the tidy house, but the hearts that need to be seen and loved and made to know that they matter.

Kara was never my bestest friend like so many others could laid claim to, and I didn’t get to know the vibrant before-cancer Kara, but our lives crossed paths exactly when they were meant to. The friendship we shared left me with lasting memories and important lessons that I will always carry with me, and I’m so grateful that in spite of her plate full of friendship and family and tragedy and grace, she so eagerly made room to see me and welcome me in.