Friday, June 24, 2022

God is Faithful. I can trust Him. Post-surgery Update.

Well there is good news and then some, well , unknowns. 

I first need to say THANK YOU FOR PRAYING!  I was literally calm as a cucumber all the way up to going under. 

 A Blessing.

One of the funnier moments was when my doctor had me sign his waiver and said something along the lines of :

“I have to tell you about the risk of air fire.” 

I was like what on earth. Air Fire? ( since he was using a laser.)

My reaction was actually to chuckle because I envisioned what a site that certainly would have been (and of course all the actual ramifications of the horrors that would ensue were not on my mind. ) I only pictured;

 Karen: The FIRE BREATHER. 🔥

My brain quickly had myself cast as a major character starring in a Marvel Movie. Maybe Reese Witherspoon could play me.

Thankfully ….  that did not happen. 

(The in surgical air fire. There might still be hope for Marvel) 

The hospital staff at Anderson were all excellent and treated me with great care. I was rolled into the operating room a little after 8, Dr. Jaworek’s first patient was cancelled. 

Another blessing. 

Dr. J was able to spend a little extra time with me talking to me and updating me on how all his girls are growing. It gave me time to tell him about all the people praying for him, and thanking him for his skills and excellence, the time he has dedicated to his craft. . 

Things went smoothly and I was in recovery, opening my eyes about 10:30. I woke up with some coughing and then more pain than I’ve experienced in the last couple of surgeries, but they were quick to get on top of it and keep me loaded up with zofran to combat the nausea. I had an excellent nurse named Zina that advocated for me and put up with my talk to text. I didn’t have a moment of nausea.

Another blessing.

The RESULTS…..

Mark talked in person with Dr. Jaworek who whipped out his surgical pictures of which Mark said there were plenty.

Dr. Jaworek called me an “anomaly.”

I’m beginning to think that is my super power. 

Double A: An Anomaly.

(I wrote him a note to say I may get that tattooed this weekend).

Basically my right cord looks amazing. Nice, healthy and pink.  My left side though looks a little more reddish and the bottom of the vocal fold had some tissue that was rather perplexing to him. He told Mark he was rather confident it was NOT cancer but he wanted to collect biopsies around the area to know what he’s dealing with. It could be just ‘not run of the mill cyst tissue’ or perhaps I am not just the Canadian….but a ‘true resident alien.’ with tissue to prove it. 

Again, the head scratch is that it’s just on left. If it was residual reflux or something else environmental, common sense says it would be affecting both sides. 

Dr. J DID NOT do the augmentation injection because he wants to know what he’s dealing with and he’s not convinced it would have helped. 

He DID LASER some spots which he said he’s hoping may cause some improvement. 

The second I got the lo-down bedside talk from Mark, hearing that things didn’t exactly go as planned, hearing there was no injection, hearing the road may be more drawn out, tears of frustration streamed.

Tears that also represented : Karen’s EXPECTATIONS

(Oh I feel there could be an entire post about that word, but what I love the most is to know a God that is never disappointed in the tears that fall from my eyes. He lived here. He gets me.) 

Well intertwined with the tears, were the words I typed out to my Instagram stories on the way to surgery.

“The fog this morning reminds me what faith is like. We can’t always see the entire road, but we know the architect who designed it and we can trust where He’s guiding, Step by Step. Day by Day. God is faithful.” 

These words were accompanied by my morning get up song sung by Toby Mac called “Goodness”. 

“ You made the rain, so when it falls on me

Should I complain?

Or feel you callin’ me?

It’s all on me to stay

And really catch what You’re showin’

It’s my roots that You’re growin’

‘Cause life is more than this moment.”


Having time to ponder, to pray, to listen to Mark. I am so thankful for Dr. Jaworek’s actions and his conservative approach. Of course the microwave solution, the instant gratification, the fast food if you will, feels better at first, but most often, in the long wrong it does not have the best results. 

I always remember my sister telling me to throw caution to doctors that are cowboys. Doctors that want to go big or go home in all the wrong ways. Doctors that want to make their mark and take unnecessary risks regardless of what might be best for their patients. Doctors that are owned by the latest and greatest meds, or medical implants companies. She told me to look for doctors who you see their brains processing and always thinking, these are the ones you want on your team. She is one of those doctors. Dr. Jaworek is as well.

Another blessing.

I have a follow up next Thursday and he’s hoping biopsy results will be in by then. Maybe he will get to write me up in a scientific journal as patient “Canadian Karen: An Anomaly.”

Total vocal rest is expected until Monday. 

Monday I can start in 5 minute spurts.  

I’ve already failed twice.  A total of 4 words have fallen out.

My brain synapses can’t move fast enough with my lips. I’ve resulted  to a mask over my mouth at times as a physical reminder since the button that Dr. Jaworek hooked me up with isn’t working.  

The button says “ I’m resting my voice.” 

I am looking forward to using this button for years to come.

Prayers appreciated for Dr. Jaworek as he thinks on and contemplates my case. The Bible says that God can direct the heart of the King and I fully trust this to mean He can give inspiration and direction to doctors in charge of my medical care.

Prayers the biopsy results come in before my appointment so we can discuss. He’s a busy man and office appts are hard to come by. 

Prayers my brain reacts before me lips open over the next few days to be quiet. Spell check with text is driving me nuts so I have Adah’s electronic white board. I also am not supposed to cough at all or clear my throat. I have cough drops and cough suppressant if needed. Praying I won’t need it.

Prayers for pain management and nausea control. 

(Currently being managed with Tylenol and Advil with no zofran needed) 

Another blessing. 

I’m sticking to soft foods, smoothies and Bekah grabbed me some alkaline fresh cold pressed juice from Raw Replenish to flood my body with all of God’s natural ingredients that can help my cord heal. 

Another blessing.

Prayers that in this time of waiting and more inward focus……the presence of God overwhelms the questions that will no doubt be knocking within my mind. I do know the more I stand amazed at God the smaller my worries become.

My words from yesterday are as true today.

God IS Faithful.  You can TRUST Him. I can TRUST Him too.

Prayers that my strength will be found in QUIETNESS and IN TRUST, and through this time I will learn a greater understanding and perspective of God’s Love for me which is always my prayer for each one of you that reads this Anomaly’s heart poured out on type.

I’m so overwhelmed by the love shown to me. The messages, the texts. Today our mailbox had more cards from our church family than junk mail. 

Another blessing.

I would be remiss no to mention my selfless husband and who serves me so well. He's my rock. He's my anchor, my soft place to land. When I am tired and weak, he points me to God's faithfulness and he isn't afraid to shed tears with me as well.

My girls, and now my wonderful son in love and cute, chubby grandson. They hold my heart. They are my joy, my laughter, and (keeping it real here), yes, at times my tears. That's what family is though. It's unconditional love. We love each other the most but sometimes we can treat each other the least. That's what I'm sorry's and forgiveness are for. I love them for all the ways they love me, even amidst all my, 'anomalies'. 

Finally, and probably most importantly, there are many that are in much dire circumstances than I am, as I write. If you think to offer prayers for The Hetherington Family, who's young Dad is fighting for his life after a recent stomach cancer diagnosis that's spread to his esophagus. He experienced an accidental esophageal puncture and ended up in surgery earlier than expected. 

They have 4 young kids.

Jack's beautiful wife Lyndie, is Hanna's school nurse.

Prayers for a missionaries we heard of to Spain that have 4 children and found out recently that one of their sons has a DIPG tumor.

My heart hit hard the wall when I looked at their faces and saw all the similarity of my precious Molly and her people. Molly's Mum, Catherine has been reaching out to them. She's not afraid to relive her grief in all the agonizing ways, if it means offering this family people who 'get it.' Catherine has also been texting me Scripture, testing prayers, reminding me of God's faithfulness in my story amidst the reminders of the brokenness of her own. Through Molly's journey, Catherine and I learned to affectionately call finding joy in these present sufferings, 

"polishing the turd." 

I have no doubt if Molly were here she'd probably roll her eyes at my FIRE BREATHER Marvel moment, but she would also know what was being accomplished.

Catherine's words of truth to me today aren't just ....

Another blessing.

Her words. With all she's lost. These words are a...

LITERAL MIRACLE.

A NEON SIGNPOST that points to a God who is Sovereign, who has a plan, who loves His people, even in what feels like chaos.

These words, these truths from God's book, continually remind me there is so much more to this life than what I can see. 

For this lil' ole voice that's talking through fingers with too many words to count. Thank you for reading, thank you for sharing my heart, thank you for carrying my burdens. Every prayer, every well wisher, you are each a,

MONUMENTAL BLESSING.

“Now to Him who is able to do so much more than all we can think or even imagine according to His power that is at work within us.” Ephesians 3:20-21

Thursday, June 23, 2022

Tomorrow June 24th is the BIG DAY!

 Isaiah 30:15 says, 

“In returning and rest you shall be saved; in QUIETNESS and in TRUST shall be your strength.” 


This gal will be clinging to that verse over the next several days. Tomorrow, June 24th is the big day that I alluded to back before I had my thyroid removed.  It’s been a day about three years in the making. It’s the day of my long awaited vocal cord surgery


First, I apologize I never did give a full update on my thyroid. I’m terrible with health updates that shine the light on myself. Praise God, my thyroid and lymph nodes were completely clear of cancer. My vocal cord nerves worked great from a nerve transmitting standpoint, but my left vocal cord continues to show some signs of paralysis. 


To look back over three years at what was the beginnings of caregiver starting to care for herself, I was realizing that stress had taken its toll on my body, my mind and my vocal cords.


Always the one to be the plus one to a hospital bedside or a doctor’s appointment, I hated to be the one in the patient seat. 


Flash back to 2019, the inability to use my voice was getting worse. After coming home from leading Ladie's Bible studies or trying to talk to the precious people that would sit across from me during Re:Vivals community dinners, my throat felt like it was on fire and I could barely speak. Having a conversation with a friend in the grocery store or across the street, would completely tire it out and I knew I needed to see a specialist. 


Dr. Aaron Jaworek has been a God send.  It’s hard to find both a brilliant doctor and one that has an incredible bedside manner that isn’t pushed around by the clock. He knows surgery was always my last option and he has worked hand in hand with me to get my cords to the best place they can be. Priority number one was controlling the silent reflux that I initially was in denial that I had.  


I changed my diet completely to alkaline foods, went on medication and though they helped, these changes didn’t completely heal. I will never forget the visit when he said to me:


“Karen, this is something you can no longer control.”


Did he just say that I thought?  


How does he know that’s my bent? If I just work hard enough, eat the right food, do my vocal hygiene care, take the right "Amazon All Natural Cure Your Reflux Supplement": surely I CAN FIX THIS!


Truth is he knew the EXACT words to say to this Karen….


It’s no longer in your control. 


He isn’t a religious man and yet his words seared through my heart. The still small voice of God reminded me that day in the doctor's office that this journey was one God was the author of and I needed to release my fists again, surrender again and follow the path God was laying out.  


Last year was an implant called the LINX to augment my stomach sphincter and fix my hiatal hernia. It’s done wonders for my ‘silent reflux’ symptoms and definitely helped improve the quality of my voice. My voice no longer tires out, my cords when he scopes me, look nice and pink instead of angry red, but the projection side of my voice just isn’t there. The hypothesis is that this is due to the left cord paralysis.


This could have been caused by a virus. I could have damaged it from my verboseness and loudness, I scream like no one’s business on roller coasters and have a hard time not singing at the top of my lungs when my favorite music artist is in town. There were plenty of years of Day Camps where the need was great to shout out over hundreds of excited kids. Perhaps all of this and  the years and effects of silent reflux took its toll.  


What I do know ……


Tomorrow is finally here and tomorrow we should know more. 


Dr. Jaworek will first go in and take a nice look microscopically to see if there is anything perhaps physiologic causing the issue. He has hypothesized that there may be a laryngeal cyst that is behind the cords causing some tension. If he finds anything like that he will laser it. If there is nothing physical to see, then he will be injecting my left cord with a filler to help ‘plump it up’ and give my cords God willing the potential to fully close. 


I joke with those who know me, 


“Ironic that this is the ONE part of my body that needs ‘plumping.’”


My sister told me last week that they call this procedure the “bee sting” and use it for kids that aspirate quite a bit.


The encouraging news with my thyroid surgery was that right after the surgery I was talking a mile a minute and sounded pretty good. This was mainly due in part to my cords having some natural inflammation after being intubated for the thyroidectomy.  As expected, once the swelling went down, my voice worsened again. Dr. Jaworek is hopeful that this is a good sign the injection will work well for my situation. 


The hardest part of this next adventure for me will be in the recovery.


Though I am not sure exactly what recovery will look like or for how long, one thing is certain:


I will need to be on: 


COMPLETE


VOCAL


REST! 


As I understand it, it could be a few days to a couple of weeks depending on what he needs to do.  Once I do start to speak it will need to be small and portioned out.  5 minutes an hour to start! 


This, my friends is probably causing you disbelief. If your head is breaking out in perspiration because you know how much I talk, you’d better believe this is the most anxiety producing part of the entire surgery for me. 


Hence the verse that I started this writing endeavor with….


“In quietness and in TRUST shall be your strength!” 


I have cherished your prayers in the past and I will hold onto them again as I head into this next surgery tomorrow. Before they put me under, I will remind Dr. Jaworek and his wonderful team that they have an army of people praying for them, and specifically for God to give Dr. Jaworek steady hands and eyes to see what he needs to. 


As I’ve said before, the Lord is the one who gives me my voice and He may choose to allow my voice to be my weakness in order that I remember to ever rely on Him and weigh the words that come out of my mouth. 


Whether I ever get the opportunity to talk again before a room , an auditorium or perhaps it’s just one on one, I am already so very thankful. 


My heartbeat is to be able to talk about the goodness of God among the land of the living. Whether it be rejoicing or suffering, we can always find His fingerprints, and it’s because of Him we can always have hope no matter how dark the dawn may look.


Love you my friends. 


Thank you for your prayers and your well wishes. 


If anyone feels the need to drop off a role of duct tape, I may be in great need of some by tomorrow evening. 


Always remember, God is faithful. 


You can TRUST Him.


Psalm 57:2

“I cry out to God MOST HIGH, 

To God who fulfills his purpose for me;” 


Monday, June 13, 2022

25 Years Later: June 13, 2022

 I opened up my Bible this morning to read my Proverbs of the day when I looked at what was written in the margin. My diaphragm tightened as my breath quickened.


Today’s the day.  The 13th of June. 


A day that changed our lives forever. 


June 13th , 1997.  Bekah diagnosed with CF. 


That day,  Mark and I took our 9 month old,  little tiny bald headed, only child Rebekah, down to St. Christopher’s for a CF sweat test. Later that day we had an appt. with a pediatric internist who was going to look through other issues that could be causing Bekah’s lack of weight gain. 


Bekah had the sweat test done. It was the 3rd floor.  The walls were cream, the trim was green and the couches were blue.


While we were waiting for her little forearms to sweat,  I went and stood out looking over the atrium of this sad, sad place.  No one wants to be found in a Children’s Hospital.  


Mark and I had been praying about whether to go overseas for mission work. I had told God Almighty I would go anywhere in the world to love on other humans and share His love but this place. 


Absolutely not.  


Too sad.  


Too unthinkable.  


Things happen here that no one wants to explain or come to terms with.  It’s the center of everyone’s humanity, and it’s a place that exposes our absolute lack of control. 


I told God Almighty that I couldn’t be a part of this club and certainly I wouldn’t because we were going to go do BIG things for God across the seas. 


Mark and I went to Independence Mall and saw the Liberty Bell.  We had time to kill and why not make an adventure out of a difficulty.  Mark just remembers we were fighting all day.  I don’t remember that part but he is married to a Karen and when Karen’s get stressed, it comes out in extra controlling managerial ways that probably involved telling him where to drive, where to park and where to find the building that housed the signing of one of the greatest documents of all history. 


I took Mark and Bekah’s picture that day  in front of Independence Hall.  No one passing by us had any idea the weight of the what ifs we were carrying in our hearts but desperately trying to ignore. 


We made it back to the hospital to have the 3PM appt. with the internist doctor.  


It was the first floor.


Far enough away from the 3rd floor, the CF Center, the floor I had vowed I would never be returning to.


The doctor on the first floor just looked at dairy allergies,  food intolerances , maybe she had a minor digestive issue that she wasn’t absorbing things.  Or maybe she was just going to be little.  Mark’s cousins didn’t weigh much more than Bekah at her age. Yes that’s what it was …..just genetics. 


The doctor came in and was incredibly pleasant. She was personable and had a wonderful bedside manner.  As she was talking to us, there was a knock at the door. 


She was annoyed.  


She clearly didn’t like to be disturbed when meeting new patients.  She was building a rapport with us. She wanted us to know we had her undivided attention.


I remember thinking she was a little brash with the secretary when she said please don’t disturb me. 


She shut the door.


The knock came again. 


The doctor who was much more annoyed at this point repeated her words with even more authority that under no circumstances should she be getting disturbed. She said to her secretary, 


“I’m with a patient!” 


Then the words came. 


“I’m so sorry, but I have a message about this patient that is emergent.”


That’s when I knew.

That’s when the bottom fell out.

Thats when the tears started to brim and Mark just looked at me across the room with the same look of stun.

That’s when the room felt like it was closing in. 


The doctor looked at us and apologized.  She went into the hall and left our little family alone in that room, alone with all the what if’s, alone with this baby we loved more than life itself and we couldn’t imagine not having her. 


I also remember that amidst the other worldly feeling and the sensation of time standing still, I also knew that I knew that we were not alone in that room.


God was with us. 


A God that saw that day before Bekah was even an idea in our minds.

A God that heard my desperate prayers a couple of weeks before when I placed Bekah on our bed, overwhelmed by the anxiety I had for her. I surrendered her to God Almighty that morning and told Him with open and raised arms, the most important thing to me was that Bekah would grow up to love God with all her heart, all her soul and all her mind.  I knew if she had faith, she could face anything. I entrusted my sickly little lethargic 12 pound, 9 month old to a God that I had learned was faithful.


God also was there to hear my prayers of refusal to walk a road that seemed too terrifying and overwhelming .  He lovingly listened while I ranted about the sick kid club I stubbornly said that I would never have membership in. 


Yet in that room, in those moments of realizing how small I was….


 I felt how big my God was.


From those early moments, though terrifying and emotional, I knew I was being held. I knew there was a plan.

Oh there were tears that were sad, tears that were scared, tears that were angry.


I still dislike the Schukyll Expressway for the very memory of that drive in our turquoise Contour, stuck in traffic,  with gut wrenching sobs escaping my lips while Bekah slept soundly in the back seat oblivious to the news we had been told that our precious girl indeed had Cystic Fibrosis. 


By the grace of God Mark got us home.  He didn’t take us to the home that we were living in.  I asked him to take us to the property on Tower Rd. in Quakertown that we were looking to buy. 

A purchase that seemed like it might be too out of reach for us, but I knew it wasn’t impossible with God.


Mark drove to the house that was vacant.  I got out of the car and ran back to the trail beside the house with wet tears trickling down my cheeks.  I looked to the tops of the trees with their new green leaves on them and begged God to let us live here.  To make a way for us to raise this girl where she could experience nature. A place she could explore, to climb trees, to build forts, to have campfires and camp outs. I asked that if this were the road being asked of us to walk, that God would let our girl live out the number of her days on that land. 


Most of you that know the rest of the story, know that God did exactly that and far beyond what we could think or even imagine. 


The very trail I ran out to that day was the same trail Bekah would run to countless times when she needed to get face to face with her Maker and cry out to the Creator of the Universe displayed in the nature surrounding our home. They were the same trails Bekah would ride her miracle Make a Wish pony on, while telling that horse all the secrets of her soul. 


Rebekah had no idea that day 25 years ago the trajectory that her life had just taken.  She simply kept looking to us for her regular needs.  She trusted us as her Mom and Dad to provide her milk, her food, her hugs and kisses, her safety. 


She had no fear of tomorrow for she didn’t have a way to comprehend it. 


All these years later I think I now understand another layer of comprehension to the verse that says


Have Faith….


LIKE. A. CHILD.


The next day, Friday June 14th, we drove back into that city.  We drove back to that hospital, we went up to the third floor and entered the Cystic Fibrosis Center as parents in the new club. 


We knew, albeit with fear and trepidation, this was the mission field God was asking of us. He was going to teach us how to walk with the broken, how to walk with those who suffer, how to show up when others world’s fall apart. 


We chose to trust His plan. 


That arguing between Mark and I.  

Ya, that went to the wayside whatever it was. Mark just remembers thinking how ridiculous it was in light of the things that had unfolded.  Without saying it, we just knew we needed to be better humans, we needed to be selfless to one another and to our girl so we could give her the best life possible not knowing how many years that would be. 


25 years ago. 


25 years.


When Bekah was diagnosed,  the age of survival wasn’t much higher than 25 years if we were ‘lucky!’ 


And oh the miracles that God has done.


I’m sitting in Bekah’s new house, 7 minutes from Pop-Pops and Nans, with her miracle little baby napping upstairs. He’s a couple of months younger than Bekah was on this day 25 years ago. Bekah was 12 pounds. He’s almost 20. He’s got all the chub Bekah’s doctors would have loved for her to have all those years ago. 


As all these memories flood my mind Spotify is playing Rend Collectives 


EVERY GIANT WILL FALL. 


“I can see the Promised Land

Though there's pain within the plan

There is victory in the end

Your love is my battle cry

When my fear's like Jericho

Build their walls around my soul

When my heart is overthrown

Your love is my battle cry

The anthem for all my life

Every giant will fall, the mountains will move

Every chain of the past, You've broken in two

Over fear, over lies, we're singing the truth

That nothing is impossible with You 

With You 

There is hope within the fight

In the wars that rage inside

Though the shadows steal the light

Your love is my battle cry

The anthem for all my life

Every giant will fall, the mountains will move

Every chain of the past, You've broken in two

Over fear, over lies, we're singing the truth

That nothing is impossible

No greater name, no higher name

No stronger name than Jesus

You overcame, broke every chain.

Every giant will fall, the mountains will move

Every chain of the past, You've broken in two

Over fear, over lies, we're singing the truth

That nothing is impossible


Oh how God has slain giants.


Oh how He has moved mountains. 


He has broken chains of fear and doubt. He’s blown away expectations of status quo and life expectancy and He’s even brought new life when people thought it would be impossible. 


Most importantly. 


He’s changed each and every one of us.


For whoever needs to read this today.

For whoever is trapped in that small room perhaps hearing news they never imagined. Whether you are in a hospital, a doctors office or maybe its the prison of your own mind or your own making. 


Our God IS a miracle God. 


He doesn’t always take away the broken, but often He uses the broken to teach us how small we are and how big He is. 


God promises to use the pain, to use the suffering, the fears, the unbelief, all of it…..


He’s making a Masterpiece. 


There is a caveat. 


He asks for a heart of surrender. He asks for hands to uncurl to the thing they are holding so tightly to.

He asks you to lift it up, to let it go.


TRUST.


Weary soul can I encourage you to Surrender.


TRUST His heart. 


Read His word. 


Use Worship as a weapon.


Pray.


One of His favorite prayers to hear is …


Lord Help My Unbelief. 


How do I know?


I’ve prayed it a million times.


God is faithful.


God has a plan.


Trust His heart…..


AND  look for His fingerprints along the way. One day 25 years from now it will take your breath away. 


https://youtu.be/qW63lCBOaVo