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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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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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Mixed Feelings

My little guy swiped the tears off of his face with the back of his arm and grinned as an excited squeal squeaked out. He had just suffered through painful Botox injections in his legs, but was quickly distracted by the huge bin of toys and games that was plopped in front of him to choose from.

I couldn’t help but crack a smile as well, and thought, there it is, reminding me again; grief and joy coexist.

I have felt bound by a very long season of grieving; one fresh struggle after another for a seemingly endless stretch of time. As I told a good friend the other day; it’s just a constant game of Russian roulette and we keep getting the bullet. I’m sure that’s not the case even though it feels that way sometimes. I have also seen that life does not pause to wait for the hard thing to be over; it scatters the joy right in with it. And thank goodness… am I right? I shudder to think what these dark days would feel like without the fresh breaths of laughter and excitement. Admittedly, I also struggle to fully appreciate the joys sometimes when I am grieving hard.

These past few weeks have been a more prominent example than most of this roller coaster of sorts. I sat across the table to sign for the closing of our beautiful new house crouched over from the fresh surgical scars of a few days prior, celebrated the excitement of boxes and furniture coming in the door while resenting the limitations that kept me from helping to carry and unpack. My flowers bloomed beautifully while my vegetable garden was laid to waste by the weather. Summer break and the delight in bikes and popsicles and lightening bugs and new friends, was coupled with a traumatic fall from a tree that landed my oldest girl unconscious and in an ambulance. On the same hand, the devastation and helplessness I felt over her injuries was bathed in the gratitude that it was not as disastrous as it easily could have been. I received insurance approval for a wonderful new device to help me walk more normally on the tails of hearing hard news from a close friend, and had a weekend of celebrating my newly sixteen year old boy and Father’s Day, coupled with anxiety and new testing for another unknown of my own. There is no time to stop and celebrate the victories or grieve the losses, there is simply a perpetual circulation of the highest highs and the lowest lows, and the best I have found is to drink deeply of the holy graces and allow yourself to feel the depths of the sorrows, and keep moving forward with them.

I know I’m not alone in this. I realize each of you dear readers face your own highs and lows with the revolutions around the sun, and I hope it gives us so much more kindness and understanding for each other. I haven’t mastered this, no; it’s easy to let the sting of the hard bleed into the moments that should be celebrated, but I’m trying ever so hard to fully embrace both, are you?

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

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What’s Making Me Tick

I carry with me “get out of jail free” cards for whenever I am somewhere a metal detector is involved. Rumor has it if you listen closely enough, I actually tick. I digress… One of my cards is for the medication pump that delivers meds into my spinal fluid, one for the metal coils that are part of my G/J tube in my abdomen, my port usually gets “bomb-sniffed” just because it shows up even though it isn’t metal, and this week I added a new card to my stack. I have the opportunity to try out the Walk-Aide; a device strapped around my upper calf that allows me to lift the toes on my left foot without the use of the brace I have worn for the past 5 years. Intriguing and exciting to say the least, and I have a feeling it will be worth being one more part bionic.

I have been switched back and forth between several different kinds of AFO’s (ankle-foot orthoses) over the past several years, depending on the changing severity of my weakness and muscle spasticity. They have all had the same goal though; to provide lift to my toes and ball of my foot, which isn’t getting the message down the nerve from my brain. Without help I cannot completely clear my foot when I’m walking, which leads to lots of awkward tripping and stumbling. I managed to keep up for awhile, even finding a way to get a foot-drop brace crammed into my duty boots, but it hasn’t always been the most comfortable.

Enter this fancy new device called the Walk-Aide. After some playing around with where the electrodes need to be, my orthotist located the exact spot that the nerve is in my leg to tell my foot to lift. She then worked through trial and error to find just the right timing and intensity to provide electrical stimulation to the nerve enough to lift my foot for me every time I step. The shock is pretty intense and often surprises me, especially when I get up from sitting for awhile, but it’s a pretty incredible feeling to be able to walk around barefoot, in my favorite shoes, or *gasp* in sandals without a bulky brace. I have been buying bigger shoes and work boots in order to accommodate my braces the last several years, and have had to completely avoid things like well, pretty much all pretty shoes and things like flip flops and sandals. Needless to say, I’m pretty stoked at the idea of being to wear whatever shoes (or no shoes!) I want, and still be able to walk in a more normal gait pattern.

They are letting me trial it for a little over a month, so I’m hoping that will give me time to adjust to the discomfort of the stim, start waking up some of the muscles I haven’t used in awhile, and give my hip and thigh a break from doing all the week. The deepest hope is that my health insurance will acknowledge the benefit and agree to help with the cost. If not, and I still decide it’s worth working for, my big girl and I have decided to do some art and projects and stuff to sell to earn the money needed to buy the device for me without the help of insurance.

Today, my leg is absolutelyfreakingexhausted from walking around with it for various chunks of time. I’m committed to seeing it through though, and excited for the potential change that will make one more thing easier and more functional for me. Stay tuned!

endurance

That Thing You Do

Self care for me typically looks like getting myself to physical therapy every week, a sterile dressing change for my port every Monday, and making sure I keep up with the never-ending turntable of doctor appointments, medicines, infusions, and feedings. I read something recently that was a bit of new information about what self care really means, and it sounded kind of nice.

Last week I took an hour to sit in a cute little studio and get my hair done. For the first time in like… I don’t know. I actually bought a Groupon for it months ago, and it took all that time and one panic-stricken cancellation to get the nerve to show up. My sparkly eyed 5 year old sat in one of the washing chairs near me and gave me a reassuring thumbs-up every time I glanced his way. I braved a little bit of small talk with my stylist, and ended up with a cell phone number scrawled on a bit of paper, which after living here nearly a year and not having any friends to call my own yet, was kind of a big deal. Well, not that we’ll be friends, but we had something crazy in common, and now I have a person who has traveled before me and has understanding and experience to share with me when I need it.

I was mildly shocked and thoroughly pleased with the transformation a little TLC gave my hair that day, and realizing I would probably never be able to replicate the skill with which she had styled my hair that morning, I snapped a picture when I got to the car, before the unruly wind made an abstract art project of it. I shot the photo out to a few of my closest people, and every single response I got started with “holy!” Some of them were more repeatable than others. It felt good to feel pretty and girly and pampered, and before bed that night I took the time to paint some Spring color on my bare nails. Less than two hours of my week spent just on me had given me a splash of confidence and a smile of satisfaction, and I decided I liked it.

By the time the weekend rolled around I was weary and sore from our usual busy days of appointments and routines, and I decided that self-care, as lovely as it felt, is something that has to be purposely allotted for, or it’s not going to be a usual occurrence. I decided I would push back all of the work for moving and organizing and cleaning that never seems to end, and I would intentionally make my Sunday a time to get some things done for myself that *I* wanted to do. I remembered the refreshment of getting to take care of myself several days earlier, and I knew it would be equally rejuvenating to spend some time doing projects that brought more enjoyment and satisfaction than packing boxes or wiping down the bathrooms. I intentionally didn’t walk into the rooms I knew would scream for my attention, and I informed my man that the only three things that would top my to-do list that day would be to finish a scrapbook someone had asked me to do um…years ago, to finally put together the long overdo baby book for our youngest baby who is now far from infancy, and to begin twisting together the giant chunky balls of sorbet-colored yarn that have been patiently waiting to be woven into a blanket. I put on a funny and lighthearted podcast, cleared my craft table, scattered about all my scrapbooking supplies, and set about spending the day being productive in a most satisfying way. I mean, there’s nothing like the feeling of finishing something you’ve been working on for years, right??

I figured a list of three things was pretty attainable, and with my current energy level I got through only the first thing. Six years ago I was asked to make this scrapbook (how embarrassing), and Sunday I finally had it finished and ready to mail before I collapsed into bed. This was after a downpour of frustrated tears. Three things. I only had three things on my list and I felt exasperated and defeated that I only /barely/ made it through one. My husband doesn’t know how to be negative about anything, and he was quick to praise what I had accomplished and encourage me to keep trying. He’s right, it was a start, and even though it was just one thing, I did it, and one check mark is more than I had last week.

Knowing the affirmation and the joy that these small things brought me this week, it’s my intention to continue purposely making time on a regular basis to do things that are just for me, even if they aren’t on the perpetual merry go round of important things that need to be done. Some day I hope that includes coloring, binge-watching, and reading for fun, but for now it’s a good step to be knocking out some things that I enjoy doing that aren’t on the daily grind list. In the next few months when I go through a small string of surgeries, there will be plenty of forced sitting around.

I’d love to hear what your self-care looks like! What do you indulge in? Is it scheduled or do you do it whenever you can squeeze it in? Does it help you balance all the other areas of your life, or do you feel guilty taking time just for yourself? I haven’t quite decided yet…but I have lots more to practice!