I Just Don’t Know.

 

Friends: this comes from a loving place in my heart- it truly does but I don’t know what I need. I just don’t know. I’m sorry if I’m not responding to you. I just don’t know how right now. 

I’m trying to survive at this point. I’m in physical and spiritual pain. Deep. Inescapable. Something I’ve never experienced before. I just don’t know. 

Our friends Roger and Stephanie Lesinko showed up this weekend and brought a huge amount of Papa Vinos and Bone Broth. I did not know I needed it. They just came with it. It has fed my family every night since. My friend Kristi Cysewski took me on a short outing trying for fresh air and a bit of “normal” (well, she tried it was not easy) and brought a meal neither of which I knew we needed. She just came. My friend Beth Hardy showed up with soup I needed at that exact moment I didn’t know I needed it. My friend Amy Anderson sends me Bible verses. No questions just verses. They always help. My friend Brenda Swank sent a specific prayer that when reading brought comfort. My friend Dora Madsen dropped off detox tea and celery which she lovingly de-strung, knowing as a nurse, these are natural ways to ease medicine induced bowel issues, my friend Angie took 2 hours of her day to walk me through part of my traumatic experience on Ketamine, but friends I lovingly and I hope without sounding ungrateful simply do not know what I actually need until they are before me. I am sorry I’m not responding to you. I don’t know how right now. I love you all for checking in. For asking. I love every prayer. I just don’t know how to respond right now. 

I’m sick. It’s not letting up. I’m sick physically. I’m sick emotionally and I’m sick spiritually. It’s awful. 

The last intervention was yesterday when Dr. Das moved heaven and earth to add me to the schedule at Elkhart General ( one shining light in my otherwise dark world right now - what an amazing hospital and doctor.) He did an outpatient epidural steroid injection. I don’t know if it’s working yet. I’m in bed. Praying for a positive outcome. He tried. 

I’m sorry if I sound I sound ungrateful but friends I just do not know what I need beyond fervent prayer. I can’t think past just trying to staying out of pain and keeping myself emotionally stable. The tears are many and frequent. I just don’t know what’s happening with my body but it’s not good. 

I’m sorry I’m not responding. Music is my love language it has been a great source of encouragement for me. It’s helped me through the dark, helpless nights.  There has been a lot of dark. Sometimes the only thing I can do is put on earphones to try to drown out the pain. Whether with music or books. I don’t know what to do beyond that. 

I love you all 

Keep praying for me please.

Mary 

Prayer Request

 Friends: 

I humbly am asking for prayer. It’s the only thing that I have not done since last week. I am desperate. I need to rally my troops. I feel like I am being targeted by the enemy who wants me sad and defeated and he is good at what he does. Will you please pray for us?  I know for sure until I see Him face-to-face, God works through his people. Prayer is powerful and I could use it’s strength. 

Last week began with lower back pain just a dull constant ache but because of some digestive challenges in the past it was enough to send me to the doctor. He recommended a simple cleanse which I did but did not result in relief. Early Wednesday morning I got out of bed and my body locked up. I have no way to explain this but my entire left side was like a solid rod and I collapsed. It was excruciating pain and I started screaming. There was no whimpering -it was horror film level screaming. After Kevin and Ben realized they could not move me Kevin called 911. 

I only remember bits and pieces after this and Kevin has filled in some blanks but the parts I do remember are what I need prayer for. They have deeply effected me. I can’t seem to process or get past them. 

Because I was on the second floor of our home the EMT’s had to try and get me downstairs with my body locked up tight, the decision was made to give me Ketamine which is “conscious sedation” through an IV. 

My experience with Ketamine was the scariest event I have had in my life so far. Not only did I feel like I was dying and that i was out of my own body, I kept telling Kevin that I was seeing Jesus, Bruiser, his mom, dad and I repeatedly told  him I was dying and going to be with Jesus. As you can imagine this was not just distressing to me but also to Kevin. In addition to that, the Ketamine triggered a memory I had long suppressed, but had to relive it while in route to the hospital.( I hope to meet with the EMT’s one day so I can get more information on what they witnessed but needless to say it was terrifying to me.)

Please pray that as I continue to process this experience, I will gain clarity in both the effects of this drug as well as working through the memory it has now brought to my every thought throughout my day. It’s inescapable. 

Please pray that as I seek God’s help as well as talking with a licensed therapist, that I will find healing. 

Please also pray for all of our local EMT’s. They are amazing and they go through so much. I have been thinking a lot about them. I was one call that morning. I just can’t imagine responding to similar calls all day. They need all of our prayers as well as our respect. What they do is amazing. They are heroes. I know that their lives and the health care industry in general went from pandemic heroes to villains due to staffing shortages and long waits in the blink of an eye to many but I hope by reading my experience you will understand not only what they are up against but their commitment to the people in our community. They will always be, pandemic or not, heroes in my eyes. 

As I arrived at Beacon Granger Hospital I was a complete mess. Loud. Scared. Confused. Still feeling the effects of the drug and very loudly sharing it with anyone nearby. I was in pain and completely disconnected from my body. Upon arrival Kevin was still getting approval to come back so I was alone except for the poor EMT who I was begging not to leave me. 

From here things were just chaotic. It’s the only word I have to describe it. 

They first tried to ease my pain by giving me morphine. Apparently I am allergic. I started to react with muscle spasms. It appeared I was having a seizure but it was determined to be just a bad reaction. This was followed by Benedryl which made me feel like I was choking on a gallon of salt ( no explanation for that) 

It was scary to me to experience but it was also nearly the end of Kevin’s ability to cope with what was happening. I can only imagine what he was feeling at this point. It has been the only time in our nearly 25 years of marriage I saw fear in his eyes. I was repeatedly telling him I was going to die, that I see Jesus and now I’m flailing about uncontrollably. It was a lot even for someone as calm as Kevin. 

The decision was then made to transport me to memorial for additional scans while also trying to secure a bed in what were nearly full hospitals. I remember very little of this time. The only thing I do remember is the cold air hitting my face while being loaded into the ambulance for transport to the other hospital. 

The doctors told Kevin I could possibly be waiting up to 7 hours but miraculously I was back to Beacon Granger in 2 hours with a room waiting. I assume I was heavily sedated as I have no memory of any of this time. 

The next thing I remember was waking up in a hospital room where I stayed for the next two days as they tried to figure out what was wrong and reduce my pain. 

During this time I had so many drugs pumping into my body. I was unable to walk or take care of a single basic need and I was afraid. Kevin was there but in my mind he was far away. 

Fear is paralyzing. Initially fear makes you forget your faith and who is really in control. 

After some time of wishing for my own death, a place I never hope to be in again, I stopped trying to control the outcome in my head and question the reasons why this was happening and started to trust God to protect me. He placed his hand over me and allowed me to pass through a very painful experience I definitely did not want but one where He was always nearby. 

Those nights in the hospital I was so overwhelmed my prayers were short, direct and desperate. Both nights I had two songs playing in a constant loop in my head They reminded who was in control, who I place my trust in and they brought me comfort when I couldn’t find the words. 

If you would like to listen I have included them here:

https://m.youtube.com/watch?v=uOP4s8fOEm0&list=RDuOP4s8fOEm0&start_radio=1

https://m.youtube.com/watch?v=MF_4vCIzVng

Since that time in the hospital they have ruled out spinal cord injury and disc issues. They have landed on a nerve related issue and are treating it as such. Regardless, they are trying to find the “sweet spot” of relief with medication. Unfortunately the medicine makes me unable to drive or even function properly in my role of domestic engineer and motherhood until my body adjusts to the medicine. Right now I feel overwhelmed. For a time, I did not feel like I was going to make it out of this mess. There have been nights this week that my only prayer was for the night to end. However, right in the middle of doubt, fear, questioning and worry there has also been Jesus. 

How easily I seem to forget his presence in the everyday yet how truly amazing that I feel Him so deeply in the midst of deep pain. It reminded me how easy it is to shift your attention away from Jesus in your life when you are not suffering. The fact that I can see and feel God working even in the midst of my current mess and in the pain I’m experiencing is a incredible testimony to how God works through pain. 

The Bible is filled with stories of men and women who experienced incredible difficulties while at the same time speaking of God’s presence in their lives. Pray that we can all be reminded of his presence not just in suffering but in our daily lives. 

Most of all friends pray for Kevin. It’s been A LOT-Starting after thanksgiving with his dental emergency, then Bruiser’s sudden death, Gabe’s sickness and his hospitalization and now mine. 

He has never complained . Not once. He picked up every household task with a smile. Ran to multiple pharmacies, documented medical care, set up charts for medicine dosing, kept me hydrated, has had very little sleep all while continuing to do his job. ( The one that pays the bills) Pray for his continued strength and for his ability to rest peacefully. 

I am reminded how my life has been filled with trials both big and small but it has also been filled with major comebacks, the strengthening of my faith and the knowledge that every trial will somehow be used for His glory. I am certain if this. 

Pray that I am continually reminded that something good is up ahead. 

Thank you for being friends I can trust to get me through times like these by covering my family in prayer. 

XOXO

Mary 

 

I started this blog in April of 2009 as a way to document the everyday life of my family. 

I have shared everything from pictures, stories, milestones and vacations to home projects and thrift finds.  This blog has been through every sport including tennis, golf, wrestling, swimming, basketball, baseball and even scuba lessons. It has also documented what my boys loved at every stage of their young lives including phases of Pokemon, Bakugan, Lazy Town, Nerf, Legos and more. 

I wrote when I was happy and when I was devastated. I wrote short captions, heartfelt tributes and lengthy calls to action. Through this blog I shared my family, my faith and my heart.  This is the space I first shared Ben's diagnosis of autism and my diagnosis of Cushings Disease.

It did not matter to me who read it.  I wrote as a way to preserve memories for the boys. Memories I hope they will someday be able to look back on fondly. I also wrote to process difficult seasons and to heal and move on with hope. 

This blog was not a place I shared news reels, world opinions, political statements or sold unused items. It was personal. I can look back now and read what I wrote and see how I have changed directions, opinions,  and handled adversity (even the times I did not handle it well were documented) I can see how much my children have grown and how things have changed as well as remained the same. 

That my friends, is the gift of documenting personal memories.

It was only when the very life I was trying to document became increasingly busy that I sought out a more streamlined way to share our lives and eventually migrated full time to Facebook. I was originally a Facebook holdout and came  to the social media game late.  Although I occasionally found my way back to this space that felt safe to me over those years, for many years Facebook and then Instagram were my main outlets to connect with others and share our everyday lives.  It was an easy way to stay connected with all of you.

The biggest gift of social media was that it not only helped me to stay connected to my friends locally but helped to re-connect me with the people I walked with at every stage of life. Some of those reconnections I hold extremely dear today -one in particular was with a high school friend who is now such a great source of encouragement and support in my life. I could never view joining Facebook as a mistake based solely on having her friendship in my life again.

I’ve always had a love/ hate relationship with social media but it wasn’t until the time of covid and pre-election when I started to realized  the very things that had made Facebook appealing to me years ago no longer felt good. Facebook no longer fostered feelings of connection and community and with each passing day it no longer felt authentic or real. It felt ugly. Divisive. Accusing. Controlling.  When I finally left I deleted instead of deactivating because I wanted to lock the gate instead of merely erecting a fence.

It hasn’t been easy to disconnect. The loss has been felt deep in my bones. This disconnection has been felt the most in the many life events that I have missed in my friend's lives that deserved acknowledgement-missing  death announcements , birthdays, and major milestones are what bothered me the most. Gone are the days of writing those dates down. Facebook was the gatekeeper of those important events. When deleted you feel the loss. This I know. 

Last month it was with this in mind that I was contemplating a return. However, It was also the time that Facebook rebranded itself to Meta.

Facebook  transitioning to "Meta" helped me understand very clearly that their plan all along has always been the illusion of connection without actual connection. It solidified my original decision that Facebook (now Meta) would never again be a place for me. That space continues to move further away from the authentic connection I crave and into virtual connections. The virtual “realities” they promote and the science they manipulate are things that will only take me further from my values and beliefs. Facebook, now as Meta, is transitioning into something that resembles and promotes transhumanism. The name change is central to Facebook CEO Mark Zuckerburg’s plans to push an agenda that entices Facebook’s users into a new transhumanist reality. I won’t go into detail about the dangers of this path. You can look them up for yourself but I will say that’s this path is a scary one and not worth being a part of simply to help me remember important dates. Instead of placing God at the center of your life, the “Metaverse” seeks to achieve heaven on earth and remove God from your life completely. Having a bad day? Go there and pretend you are not. Feeling lonely? How about a virtual relationship. 

We as a society have be lulled into such a deep sleep by the devices in our hands, it’s hard to see the true intent in what may seem like simple rebranding.  This should be the wake up call we all need. Please research for yourself. There is nothing good that will come from this path.

It’s why I find myself back here within the safety of my blog. In a space I can speak freely ( at least for now). A place that documents my family’s life without inadvertently supporting an agenda I don’t want to be a part of. A place where I can speak of my faith without fear of someone who views life differently removing my thoughts simply because they are not the same as theirs.

This does not mean that I will stay off all social media forever but just until I can find an option that supports more authentic sharing, less censorship and more community and one that doesn’t raised red flags along the way.  There are other options already out there to explore and others that are being built out but until I make a decision I will settle in here again.

I have always believed in sharing authentically and not leaving out the struggles that are sometimes uncomfortable to read. I also believe we should be able to share and listen to all sides of an argument and still remain firm in what we believe while not sacrificing personal values. The key in this is being able to do so without harsh judgement. I don’t believe in the term “my truth”. I believe only in THE truth and the one place I can find THE truth is in my Bible. The truth of the Bible doesn’t change due to world events or the difficulties of life or because independent fact checkers say so.  I found myself not wanting to share the truth on social media for fear of attack. I also did not like who I had become on social media. It was not authentic but fearful. I was focusing too much on what other people thought and I myself was ugly and opinionated at times.

There is a saying  “it’s much easier to act like a Christian than to react like one.” My reactions to other’s opinions did not represent my faith well.

Sharing life experiences, whether others agree, understand or even sympathize should never be a reason for others to attack, unfollow, ghost or unfriend but that is what I found on Facebook- a place that encouraged dissension, division, one-sided opinions where one view is allowed while others are censored. It is not real life. It had become a place where people were no longer seeking connection but seeking validation of their own view.  A place of proving points. For me, It was no longer a place to learn, grow and connect. Now, not only that, but it’s very belief at its core as it transitions to Meta and transhumanism does not line up with my values and my faith and places further emphasis on imagined connection. Virtual reality. It might make people feel good but it’s not real life.

Nothing on this blog has been written with hopes I could convince you to agree with me only with the hope I could help others see how it felt for me and/or my family to experience an event or an emotion. I hoped that even if we did view life differently we could still learn from each other.  Let’s face it, In our greatest times of need we don't always need others to give us their opinions or advice as much as we need to hear through other's stories from those who are walking similar roads we find ourselves trudging down if only to tell us that it will be ok. Those who are a little further along and willing to help us. Those people don’t necessarily come from our same circles or believe everything we do but we meet through common goals and even common pain, without judgement or censorship. It’s why we need to hear how everyone views life not just a set of pre- approved opinions.

So, here I am over a year after leaving social media-back in the space I abandoned because it required a bit more effort to maintain. It’s not lost on me that I moved to Facebook from this blog to experience a easier, faster connection and that is  exactly what I got but once I had that I realized how much I missed true connection and deep two-sided conversations. Full circle learning at its finest.

The real life feelings that come with memories and lessons I still feel years later when I read again.  A place to document the silly trivial moments as well as the deep feelings, not doing so for engagement, likes and comments but for me as an outlet to process.  A place I can remember not only events but the feelings and emotions that are attached to them. A place where hopefully someday my children can appreciate that their memories were documented and be reminded of them long after I enter heaven.

It is in this is the space that you are less likely to miss my heart.

I think this is why I have landed back here. A place where you can visit and connect with me. I have missed you all. I love to share. I love to write. I love to hear about your own lives. You can choose to follow this blog, check in when you feel like it. You can comment (or not) but I will be here from now on and until I feel comfortable with the new and emerging ways to share that don’t include moving further away from reality into an imagined one.

Life is real. Pain happens. Heartache occurs. Manipulating these emotions temporarily will only make the reality worse.

**I am sharing this post on Kevin’s Facebook page but won’t link it again through Facebook so check back if you want to. I will warn you, I am going to have a time of "catch up" so there might be a lot to start:)

If you do continue into the new year in your Meta spaces I leave you with some excellent advice I recently heard on a podcast when the guest was discussing social media. He said, In part:

“Be intentional with who you follow. When you choose who to follow on social media you are choosing your future thoughts. You are choosing the flow of information you are going to put yourself in front of and pretty much every thought that you have is downstream from what you consume.

If you want to have better thoughts  make sure you are consuming better pieces of information.”

I hope we can continue to connect real life and now in this space.

Happy New Year.

XOXO

Mary