One last story: I have been feeling much anxiety for the last week, worried about… well everything I guess. The helplessness in all of this has been both hard and also so freeing. Gratitude in the smallest of things has been a powerful weapon. As we waited to get her rolled into surgery I read through the beautiful comments of love and support for us as we were beginning to climb to yet another sheer face of unknown stuff. I was still feeling much fear and distrust. I have learned in my time that getting off the rails of trust is among the most destructive thing for me. What got me back on track was a simple entry from our dear friend
12-7-2020 – Post #24
12-6-2020 – Post #23
12-5-2020 – Post #22
12-4-2020 – Post #21
12-3-2020 – Post #20
12-2-2020 – Post #19
11-30-2020 – Post #18
11-29-2020 – Post #17
11-28-2020 – Post #16
11-27-2020 – Post #15
“Karol’s Thanksgiving was quiet, we watched the parade and Harry Potter on tv throughout the day. She made a great stride in the morning as she lifted up her head for the first time. By the afternoon she was freely lifting her head, sitting up in her bed,(with help), and leaning forward in her bed to stretch her hips and back which are sore from laying in the hospital bed for 2 weeks. She continues to have some head pain, which is normal when they cut your skull like they did. She is given a Tylenol based medication mix for it. We now wait for the speech therapist to come and bring her for her x ray swallowing test, this is the most important part of the day today. Please pray it goes well so she can eat reel food!
Thanksgiving at home was good, we had a turkey supper with the extra good stuff. Ruth baked me a sugar free apple pie! We even watched The Muppet Christmas Carol as we do every year. The normal feels good, even with everyone missing. Ruth and Annissa have been trying to finish up the Christmas newsletter that we started before all this happened. They waited while I rewrote my article as I wanted to share some of what is going on now.
I continue to be focused on Karols needs throughout the day, we work on communicating through nods and signs. She has retained a sense of humor through this. As they moved her over to a chair yesterday with ceiling lift, she was hanging from it and she waved at me and laughed. I read her many of the messages under my facebook posts and she listens. She likes being touched or touching almost at all times, in between sleeping and pokes and prods from nurses.
I have found that I continue to find things to worry about. Now it’s where she will do rehab, what insurance covers, and how she will respond to it. I am amazed at how easy it is to pick up worries each day. At times as I talk to God I find myself bargaining, I know this is stupid. I say, just let her live, I won’t ask for
anything else! Then I say, just let her talk, this is the last of my requests, then I say, just let insurance help us with the rehab we need, that’s it, no more worries. It goes on and on, from there! I do realize it is good to talk to God and ask for help. The last 25 years of ministry have shown us that over and over and over. My dependence on him is loving, and needy, and helps me recon with how out of control life is. I am sure He laughs as I say this is my last ask. He knows better, he knows how dependent I am. I often think He just wants me to know that too, and be ok with it. I Thank you for listening each day, this time writing each morning brings me much peace, thinking on what happened, talking to God about what’s next, it’s good!”
11-26-2020 – Post #14
“Happy Thanksgiving – Karol moved into the step-down unit overnight. She continues to make very very small moves ahead. Neurologically she is doing well, in a place that the doctors are happy with. She still cannot talk or use her right side. Her next obstacle is her swallowing. She will have an x-ray swallowing test tomorrow morning to determine if they feel they can get her to swallow enough to eat or if they will put in a G tube to feed her. She continues to have a very sore neck and her head hurts, so they give her medication to help that. She is having her first moments of frustration with not being able to talk. It is so hard, but again another good sign neurologically that she is improving. We work hard together to learn to communicate in this new way. We are now working towards a move to a rehabilitation center in a week.
The kids are preparing for Thanksgiving dinner when I come home at 5. Karol’s sister Janice will come down to join us. We are thankful for the gift given of the gourmet dinner prepared at a restaurant for us that they just have to warm up. It is a good distraction for all of us. Karol and I watched the thanksgiving parade and will watch some Christmas movies in the afternoon. She sleeps on and off, but holds my hand when she is awake. Pat Neitzer sent a beautiful video of baby Nora laughing at her dogs while Cody holds her. Karol laughed at it, it is a beautiful thing when she occasionally smiles.
I have been thinking all morning about what I am thankful for. I am amazed in this hardest time in my life at how simple it is to feel thankful. Being humbled by being knocked down by something so out of my control has been a blessing. It changes perspective and brings all the loving relationships we have so close. In the end, I am thankful for understanding what trusting God means, and how trusting his plan means I can let go completely and let Him take us on this journey. I truly cannot express how thankful I am for the love my family and I are experiencing from all of you. I am thankful for my amazing large family, who pull together when scary stuff comes and grab onto each other and don’t let go. I am thankful for Karol holding my hand, and to be able to have her respond to me through touch and nods. So on this Thanksgiving I thank all of you for your love and prayers. I thank God for loving us.”
11-25-2020 – Post #13
“Yesterday brought in the physical and occupational therapists to help Karol stretch. They worked on her painful neck, which is a typical outcome from a stroke, also working hard to help her get her brain to recenter. She tends to look out to her left as her brain is not recognizing her center.
Next came the swallowing team. This is a critical part of her next step. she is still being fed through a tube in her nose. ￼ They need her to be able to eat, or they will put a g-tube in. In order to move on to a rehab center she will need to not have the tube in her nose.
Her Neurologist team came in after that and went over some more thoughts on the cause of her stroke. They are happy with how she has progressed and feel that intensive rehab will benefit her greatly.
She has remained in good spirits despite her inability to talk. she can motion and nod, and has yet to get frustrated with our inability to fully understand what she wants at times.
The kids are now fully settled into our new house. It is a big and very nice place. Annissa and I share one big cry every night. Ruth and Nis are beyond a blessing to me, helping me to laugh, cry and process what we are experiencing. I think this is a big part of what we do now…process what we are feeling. There is underlying sadness, a little pain, some worry, yet there is much trust that God’s plan is unfolding as it should. We help each other make the decision to trust Him each day. Your love and prayer continue to bring us comfort.”
11-24-2020 – Post #12
“The answer is simple, life is not! I came into Karols room this morning to a great surprise, she was sitting in the chair next to her bed! The nurse said she awoke at 5:30 am and was very awake. it is amazing to be sitting right at her side, she keeps her arm around my shoulder most of the time. Yesterday was a peaceful day, she slept on and off mostly. They have adjusted her pain meds to a good point to help her avoid the pain but still stay awake. Her blood pressure and breathing are both doing great. She continues to be in the Neuro ICU, as beds in step down are unavailable. They will begin to do therapy this afternoon. The swallow team is also scheduled to come in to begin evaluation of swallowing abilities. She continues to take the baby steps needed, and for that we are so thankful.
She has a new nurse this morning, I continue to give thanks for the nursing care she is getting, so loving and caring. Nurses are high on my list of people I look up typically, as my sister, mom and grandma are all nurses, through the incredible nurses we have at camp and at the clinic we go to in Crivitz. But my respect has gone even higher through this situation. After 10 days of getting to know these healthcare workers here I see the stress they are under working long, long hours as covid has filled this hospital everywhere. I urge everyone to thank any nurse you know and ask if you can relieve any of their stress. I spoke to a respiratory therapist yesterday who came to give Karol a breathing treatment and just asked a few questions. She said she has been working 6 days a week, 12 hours a day since May 3rd, she started to get weepy as she said she was near her breaking point, but knows the need for her skills during this covid time. She talked about daily worry of bringing sickness into her own home and to her family. So when God brings healthcare workers in your path, talk to them, help them know they are loved and appreciated.
Today the kids will move into a new home a block away from one we are in, it’s open ended as far as our time to stay. It is a blessing to have this again as it brings some typical feelings for us all.
My time here in this room has given me much time to reflect, think and talk to God. I deal with fear each day, it then helps me to forecast the doom of the future, but I have learned much about dealing with my fears through this.
I would like to finish by talking about something I deal often as I lead Camp Daniel and live the life we do. It is the accusation that I hear from others a lot; that I am so filled with faith, so focused on trust, and have so much wisdom from God. I want to be clear that while being lifted up on that pedestal strokes my ego, it is far from the way it really is. I want everyone reading this to understand that all the promises of God are for all of us, not a select few
This is more what it is like: My love for the truth God gives us in the book, and the many bible verses that get shared with me throughout each day help me to know what the truth is.
The love from all of you helps me escape fearful feelings and my lack of trust, which is a daily battle for me. Your love helps me feel God’s love in a very real way.
God’s spirit helps me take in the truth and the love, and then “live it out” with each step in real time. I then find thankfulness easy to come by as we journey. It is that full round process that brings much peace in the end, if I take any of those things out of this, things don’t add up. I do not want to describe this as a religious equation to control how I feel, because it is not. It’s that “living it out part” that is always a wildcard for all of us everyday. If we know God’s truth, and are surrounded by loving people, and aware of His spirit then there is a foundation for the ups and downs in life. It is much like the respiratory dr. who was here and helped me through a hard time a week ago. It was not luck or happenstance that caused that. It was knowing God loves me and sends people to help. I could choose to fear and distrust, or reach out. In the end I felt loved and it took me to a real place of peace. This is not just for a selected few, this is for all of us. It is as simple as I am saying. I am not saying life is simple, we experience the suffering of so many things in our lives, but we know that, it says it in the book we will. It is the rest of the truth that is important and allows us to live a life of love and peace even though there is suffering.
I share all of this as our community here ranges from people with no belief to people at all, to people who are super churchified and all things in between. I do not desire to change anyone into what I desire, but I do desire for all here to experience the love, peace, and hope that I know. How do we do that?? It’s through sharing love with each other. I ask that you do not add to this in your comments, that you allow it to be heard by everyone free of judgement and control. God has it, our part is just to love. With that long talk, I just express my love to all of you.”
11-23-2020 – Post #11
“A community that shares in the burden! Yesterday was another good day of rest and tiny steps of progress for Karol. She was awake on and off throughout the day. When she is awake I am able to get close to her and talk alot about all that is going on. She nods yes and no to questions and we are getting into a pattern of communicating. Her right side continues to not work, she cannot speak, and her swallowing is still an unknown. Getting into the room yesterday and today at 7:30 when I am allowed in, I am greeted by the half smile she can muster and then get a long hug from her. I talk to her about the kids and my interactions with all of you. Her custom helmet arrived overnight, so today they can get her into a chair and do therapy. She will get a medication to help her more fully awake each morning now. The night/day sleep cycle is very important to healing as it helps her brain orient itself. Her blood pressure is down and her breathing is now good. Being more awake is good, but it also means she experiences pain. As her brain swelling continues to go down, along with her therapy she will prayerfully get movements back and at some point talking again. These are scary unknowns for us, but God knows, so we can only choose to trust him.
Anthony and Evan drove to Chicago yesterday and spent the night with Nono and Nonna. They will get back to camp this morning. Annissa and Ruth are at our home and are packing up today preparing to move to a new home tomorrow morning, one we will be able to stay in long term. It is a huge blessing to be in a home.
I am in a routine at this point, getting to the hospital at 7:30 and leaving at 5 when visiting hours end. I interact with Karol for a good half hour when I arrive and then she sleeps. I spend time writing this at her bedside and the nurse comes in at about 8:30 to give her meds, move her around, and then the Neurologist comes in about 9AM. I then finish up my post and she is waking up more so I talk to her, help her stretch her hips and shoulders.
I cry at times as I talk to her as the weight of what is happening hits me. She has comforted me each time, wiping my tears, rubbing my beard, holding my hand. She has moments of sadness and crys just a little, and I comfort her just the same. It struck me this morning how her weakness right now is mine too. That over the last 34 years of building our relationship we have grown as one, and in a marriage you
not only carry each other’s burdens, you actually share them. I think this is part of the fear factor in all this, the terror of having half torn away. This is part of the comfort that community brings as hundreds of you have moved in to be the carriers of this burden with us. It soothes the pain, comforts our fear, and brings us love. So many have messaged us expressing the desire to help us and feeling helpless, I just pray that when I express that the messages, texts, phone calls are giving us a healing love that everyone would believe how much it means. You are carrying our burden, and we love you and thank you for that.”
11-22-2020 – Post #10
“Karol continues to make very small improvements in her abilities! Later yesterday afternoon she opened her eyes and began tracking me if I moved. So I talked to her more and she began communicating with yes and no nods!! I spent the rest of the time asking her questions. The new covid rules make it so I have to leave at 5, it was excruciating to leave as she was so awake. I explained to her what had happened to her and she nodded that she understood. I told her how Ruth and Annissa found her and I began to cry. She reached up and put her hand to my cheek to wipe my tears and comfort me. I told her about the kids being here and all of you who are praying and cheering her on. We talked about the long road of therapy and work ahead of her and then she cried. I asked if that scared her she nodded no, I asked if she was sad she nodded yes. At one point she pulled my hand to her cheek and wanted me to touch her cheek. She then laughed for a moment. She only gives short and small facial expressions as she is experiencing head pain from her skull removal, the 100 staples and her neck is hurting which is normal after a stroke with one side weakness. They continue to move her every two hours, as well as make sure she doesn’t get any bed sores. She is on an inflating mattress that is computer controlled. So the next week brings a continued wait for swell in her brain to continue to diminish, and the beginning of more therapy. She is going to continue to stay in the neuro icu as there are bed shortages on step down, but that is fine with me as the nurses here are incredible.
The kids are doing well, Anthony and Evan left for home this morning to get all the guys on track to continue to work on the campus. They also will be packing for us a little better, taking care of prescription pickups and Evan is taking over my finances as well as our residents upstairs. The amount of work Karol does for all of us is amazing and we are learning just how much we need to do to keep it all going.
I have felt so thankful for all of your love and support. I am moving out of a place of terror now to a place of contentment for the day. I am sitting quiet, leaning on the side of her bed from 7:30-5 everyday. I go home to my family at 5 and am so happy to be with them, I rehash the day, we laugh and cry, it is a healing time. I still get scared of the future, I still worry, and I still get sad, but underneath all of these things I feel peace, and I still choose to trust God’s plan. I know there is change in me as I have been pondering what will come on the other side of all of this. It is scary, God’s plan often is. So as you pray for Karols healing, and for my families well being I also ask for you to pray for us to be able to see God’s plan and embrace it, no matter what it is. I love you all. “
11-21-2020 – Post #9
“Hope – Karol continues to make little tiny baby steps. Her brain swell continues to move in the right direction, maybe closer to a baby crawl or roll! But it is the right direction. She remains sleeping 99% of her time. They can give her medication to wake her more but will wait a few days for that. It is the plan to move her today out of the neuro ICU.
Yesterday was the first time I cried tears of happiness! The physical therapists came in to do therapy late in the afternoon. They measured her for a helmet so they can eventually get her into a chair to do therapy.
They got right up on the bed to work with her in the meantime. She did so great! She did 10
leg lifts and arm lifts and a variety of stretches. they established she was hearing and understanding. The little bit of physical activity allowed her to have her eyes open for 2 minutes!! She nodded yes and no to questions and commands. Towards the end of their time they pressed her to move her right side which has had no voluntary movement, they eventually could see a tiny, tiny bit of movement! My tears flowed as hope washed through us in the moment. In her bed she is simply Karol, who is sick, and looks quiet and peaceful most of the time. Getting into a sitting position on her bed with legs over the edge is very different, as the full visual of the of the mountain ahead is on display. I cried for some time in the good of the moment and also the fear of it. The hope that emerges spreads fast as she makes such tiny little strides. They continue to monitor her breathing close, as pneumonia is an enemy they do not want. They suction her throat often, give her breathing treatments and try to stimulate her to cough. The therapists said her head feels like a bowling ball to her, it’s very hard for her to hold up. When she has her hand unstrapped she immediately reaches to her head and rubs her stubbly skin, she has touched the 100 or so staples in her head with her index finger a few times. I talk to her throughout the day and try to simply and repeatedly explain what happened but she seems confused by it and where she is.
The kids continue to do well, I express to them often in the evening how thankful I am they are here. We stopped at goodwill after they picked me up last night. We all needed some clothing items. Annissa purchased something for Karol, for her office. It cost only 99 cents, yet it was worth a million dollars in seeing the hope she has for mom to recover. Anthony continues to research Karol’s possible syndrome and feels comfort bringing order to some of this chaos. Evan wakes up early to drive me to the hospital each morning, he has worked with Papa to take over my finances also. Ruth brings so much happiness to us all, she keeps us very balanced in our feelings!
I continue to talk, message and text with many, many of you. It brings me much comfort to feel loved and close, explain what is going on, and it really helps me figure out how I feel as we step ahead.
I have thought a lot through this time about how helpless my parents felt through all of Dan’s years battling the extreme health effects of his MD, its threat of death and the extended hospital stays. I think about the fatigue I know they felt, and support and love that helped drag them through it all. ￼Unknowns and uncertainty are hard companions, but the trump of those are hope. In all of the scary stuff that is happening, we definitely have hope! I ask as you read this to continue to pray, prayers of restoration of health, and prayers of thanks for God’s love to us.
Lastly, I want to give thanks for many, many gifts that are allowing us to have a place to stay here, have food and fill the many needs of being so far from home. We are awed by your love and cant truly express enough thanks. Many of you have continued to ask how to help us. We can use prepaid visa cards and walmart cards to purchase food, gas and toiletries. you electronically transfer funds or just send a check to Camp Daniel. We are humbled and so thankful and feel very loved!”
11-20-2020 – Post #8
“Karol has been making baby steps forward, which I am so thankful for. She was monitored through yesterday afternoon, watching her blood pressure and her feeding. Those are both going well. At 3 pm her breathing tube was pulled out, she seems very relieved that it’s gone. Her arm is strapped to the bed as she would pull out tubes if she could. Every 2 hours the nurses come to move her in her bed and do checks on her alertness and responses. They unstrap her arm as they do this. During one of these checks she awoke a bit, she realized that her arm was free and immediately put her hand on her bald head and rubbed it. I laughed, then I cried, then I laughed again. They have continued to do CAT Scans and each time her brain’s swelling has reduced very minutely, but moving in the right direction. They take her blood every 4 hours, they take her blood sugar every 6 hours as tube feeding can increase blood sugars. The neurologist team was just here and were very positive about her baby steps! Her eyes are both responding to light, her movement on the left side is good. The Drs feel she can move to the step-down unit of the ICU tomorrow!! That is the best news I have had in a long time! I cry tears of thankfulness in this moment as opposed to tears of fear!
The kids continue to do well, working on things for Camp Daniel at the house and enjoying each other’s company. We text throughout the day, I send pictures and update everything that happens in this room. Annissa and Ruth made tacos for supper, not that it’s important, but again it speaks to the normalcy of the home. We went to Walmart after to buy ice cream because when your wife has a stroke you are allowed to buy ice cream and eat it at 9PM!! All these things seem small but normal loving and living is like medicine for our souls here.
As I left the room last night, waking up today, and even as I walked into this room this morning I have been overwhelmed with thoughts that I am living with-in the scripture of, “bearing each other’s burdens”. I have contemplated this idea throughout my life. growing up with Daniel, and then working every day with people who have unique needs, keeps me thinking much about it all the time. But right now, in this moment, this command to bear each other’s burdens is very real and very definable for me. If you have been to camp, you have no doubt heard me say towards the end of each week that if we could take home the focus, love, and intent to shower love on just one person, one person at home, at work, at school, or at church what would that change for that person and for us who do this? It is what we are experiencing now, here in this hospital. The focus of love, care, prayer, and bearing burdens. It is God’s love and spirit that is all around being focused brightly and is changing our lives and allowing healing. I pray that while it is hard to be far away physically that you feel the sense of God’s love moving. I know for sure, that in our weakest moments filled with dependence, we are strong, often because of our closeness to God, especially through the love poured out from his people.
So as you pray for Karol today I ask that you expand your love that is being showered on us to just one person that God brings you in contact with. Share your heart, love without restriction, fill needs as life depends on it. That would be the corner of the world I would love to see Karol wake up to sometime soon. Not a miracle of just her healing but collective healing of us all, together. We love you all!”
11-19-2020 – Post #7
“After the chaos of the day before, yesterday was a somewhat peaceful day. Karol was sedated through most of the day and then taken off sedation at 3PM. She slept hard, and it was fairly quiet all day. She has been moving around a lot more this morning but still does not open her eyes. She continues to reach for my hand as I lean on her bedside. I talk with her and she responds by squeezing hard. Neurologists feel she is at times struggling to understand words still, as her language area is stressed. They still have not taken her breathing tube out, but the thought today is they will. She would be happy for that as when they unstrap her arm from the bed, she grabs towards the tube and would pull it out if she could! They are now feeding her, which aids in the healing, and continuing to medicate to keep her blood pressure low. It is now a waiting game for tiny steps forward. They are encouraged as her swelling has continued to go down!!
I awoke this morning, not in the shock of what has happened, and did not cry through my shower for the first time. A routine is developing for us. I cry at times because I am scared, I cry in moments at her bedside because I have no control, I cry each evening when I come in the door of the house and lock eyes with Annissa because she is hurting badly along with the rest of the kids. But those times are broken up by the messages, texts, and calls that roll in sharing love with us, that are so healing. I have not felt alone throughout this process, and am so thankful and humbled by the love being shown to us. I am getting through the mourning of what was and am getting focused on the moment and what we can do each day. Last night we had dinner that Nis and Ruth cooked around the kitchen table, we laughed and cried and I rehashed all that had happened during the day and then watched TV, like I said routine! The kids and my father are helping me get through our personal finances and the guys upstairs finances as this have always been Karol’s thing, and next, we will tackle medications for Anthony and me and the guys upstairs. I am thankful for this help! The loving financial gifts that so many of you have given are overwhelming to us. While we have lived for 25 years in a total state of dependency on you guys responding to our needs to live and minister as we do, but this has been beyond what we can describe. I can only express thank you for giving us the gift of having my kids here as we go through this.
Lastly, I just want to begin sharing more of the miracles and signs that we have been given. On the long, long drive down here, last Saturday morning, I was receiving texts all day. Very early just before the sun rose my sister had been texting me and encouraging me. She talked about how the sun would rise on all
of this, and it would not stay the night and in the warm light of the day, God would take care of us. 10 minutes later a huge sunrise came over the flat farm fields as we drove through Indiana, and as I looked we passed by a silhouetted tall church steeple with the giant sun coming out and I felt peace in the moment. I even fought the feeling because it did not feel right because Karol could be dying. But that moment has remained with me.
Another beautiful sign greeted me as I walked into the door of the home we are staying in. My Uncle Jerry has been one of the biggest help in life and has always shared one phrase that as a pastor he would say all the time. It is pictured below. So I will leave you with this morning, something I know beyond a shadow of a doubt… The best is yet to come!”
11-18-2020 – Post #6
“It was an exhausting day yesterday in every way, like a rollercoaster. After her surgery, she began spiraling negatively. She began bleeding from the area they cut out her skull which is an area approx 6-7” around. Her face began to swell, and she became more and more unresponsive. The swelling of her brain has caused her to be more unresponsive each day and yesterday she was no
longer opening her eyes or responding to commands. The neurosurgery team was in and out 5 times through the afternoon, and at 4 pm they decided they needed to operate once again on the area they had already taken her skull out. She responded very well as found she was bleeding from the skin and muscle and not the brain. They also fixed the drain in her head to allow blood to get out as it had become coagulated with blood and wasn’t draining correctly. The surgery took just under 2 hours. The head of Neurosurgery for this hospital came in to sit and talk with me even before they brought her back. He had assisted on this 3rd surgery and wanted me to be thoroughly updated on where she stood now and his thoughts on what our walk would look like coming up. He is a renowned neurosurgeon and at the top of his field. It truly is a miracle that we were here in Lexington when this happened and are under the care of this team. He has been described by the other Drs and nurses here as being disconnected socially. One nurse said he would rather look at your brain than talk to your face, but he is the very best. The last description was that he was like the tv show character “House”- devoid of bedside manner but a genius.
So all that to say he is good at what he does. He has sat down with me three times and has been a huge help for me in processing all that is happening. He believes after being in her brain that she will recover well, and will likely gain back much language-wise and physically. He also has taken a deep interest in her case as to the way that this has happened and is working to put the puzzle pieces together. He said he was up in the night studying her case and with her past history and through all the questions he has asked he believes she has a Genetic Vascular Collagen Disorder which causes her to have weak twisting veins. He described this collagen as the structure that holds up your veins and arteries. He believes that as she has aged it has weakened more and more. 6 years ago Karol had an arterial dissection in her intestinal area that seems to be almost exactly the same as this. But it was caught early and taken care of before it bled and led to a stroke. He is going to bring a genetic expert to help substantiate this theory. He is concerned with her moving forward in life as she will always be susceptible to strokes because of it. He desires to get us set up with a vascular expert closer to home that can create a regimen of regular scans and prevention to give her a long life.
As I sit here by her bedside holding her hand she is unresponsive, but they are reassuring me it is good, as she is resting and healing. Her brain swell has slowed which is great, if that continues we can begin thinking about next steps through the coming days.
Yesterday was tense and horrible in so many ways. In the end God gave me help in the form of Karol’s respiratory Dr. As they wheeled her out to her 3rd surgery I began to sob and just felt fear like I have ever felt in my life. The respiratory Dr forgot something in the room and turned back to come in and came to my side and put her arm on my shoulder. We talked for 20 minutes. I expressed all my fear, she talked about her own journey of caring for her mother through her stroke 8 years ago. We talked and cried. She asked to see pictures of Karol and the kids. That time brought me relief like nothing else has. It was a miracle in my eyes, almost an angel to come and help carry this burden. I am thankful to God for sending her. She is not working in this unit today but said she was praying and would come back and visit today anyway.
I was able to stay last till 7:30 and the kids picked me up and we went back to the house and had dinner, we laughed and cried, and I
slept for 8 hours solid. I awoke refreshed and feeling grateful for God’s watch. I am again awed by the love being shown and the now thousands of people praying all over the US. The messages on Facebook, texts, phone calls are what keeps us all going, please don’t stop, or apologize for interacting. One thing I can tell you from my entire family is that we feel loved and that is the greatest miracle there is.
Please keep praying, and loving.”
11-17-2020 – Post #5
“Karol’s brain has continued to swell, bringing the neurosurgery team in to discuss relieving the pressure. They explained that her one risk of death right now is brain swell, that would be enough to press on her brain stem. So their recommendation was to get her into surgery and cut her skull open to give her brain the room it needs to swell. —This may be graphic for some, but I am committed to sharing this time in our life as honestly as possible—
So they shave her head, and cut a 6-inch flap and peel her scalp back and then remove the piece of skull and suture the scalp back over the brain. The head of neurosurgery expressed to me that this is an aggressive way to treat a stroke patient, but by numbers, it gives her the best chance going forward to recover. The surgery went really well, the exposed brain looked good. She slept really well last night. She has not had eyes open since the surgery and is very woozy. They are working towards getting her BP stabilized and may take her breathing tube out at some point. The coming 3 days are now the most critical as her brain should stop swelling after that. Then more aggressive evaluation of her state can begin and some therapy can begin. So again we just wait, watch and pray. We will likely be here 6-8 weeks as they cannot reattach her skull bone until 6 weeks. Until the swelling stops, it is very hard to evaluate her abilities to swallow, move, talk etc… We know she has not been able to talk, move her right side, but those are things that can change over the coming months.
We moved Annissa, Evan, Anthony, and Ruth into a nice AirB&B home. It has 3 bedrooms and a kitchen so we can cook. It is less than 5 minutes from the hospital. It cost about 75% less than any hotel near here! I was there for an hour yesterday, and it is already more like a home and everyone is far less tense than in a hotel room. I cannot express how grateful we are for the loving gifts that so, so many of you have given. One of my fears as a husband and father has always been being poor, and my family not having what they need to live. I am extremely humbled and feel incredibly loved. The kids are feeling the same, we have talked a lot about God’s provision through people who love over these last few days. New covid lockdown rules went into place this morning so I am the only one allowed in the hospital from 7-5 each day. Annissa spent 6 hours with her Sunday and Anthony spent 3 hours yesterday with her. It was important for them and her to be able to hold her hand and to talk to her. I also am thankful for so many of you who have reached out to all 4 kids over these days, it helps them feel loved and in the center of this chaos instead of looking on from afar. It brings me much comfort to have them here.
The last 24 hours has been tense and scary. They assure me over and over that the look of things is not important in that she is healing while it looks so scary. I describe these last 4 days as falling from a cliff, you scratch and claw so hard to try to stay up and not fall that you are exhausted and beaten down. Getting tired enough to just fall into God’s arms in full trust brings much relief. All she wants is her handheld all the time, she reaches for it if I move at all. I can do that! At the same time, I feel God’s hand reaching down to take my hand much the same…I can do that too! So that’s where I am just sitting, waiting, crying, and feeling so much love from all of you, that’s what loving healing looks like. I love you all, thank you for staying close by messaging, calling ect… it is a lifeline.”
11-16-2020 – Post #4
“Karol is fighting through this. She is still asleep 99% of the time. She has a CT scan every 6 hours, she has had multiple Xrays, MRIs, and ultrasounds. the constant expression when Drs come through is that age 49 is highly unusual for this type of thing.
They have explored the many possibilities of causes. They have landed on thinking that this has been caused by a genetic abnormality. Six or so years ago our amazing PA Jessica in Crivitz found what was called a “brewery” in her artery in her intestinal area. that led us to Bellin hospital and then Freitort hospital to find she had an arterial dissection, which means that she had a bleed in the inner arterial wall that gets trapped under the outer arterial wall. This can lead to things such as a stroke. It was understood that it was something not widespread in her but rather localized. She had that taken care of and also had a hysterectomy along with it.
Fast forward to now, she had the same type of arterial dissection in the artery in her neck. The blood that collected under the outer arterial wall eventually split a clotted in two spots in her brain, causing a large stroke that affected 40% of half her brain.
It is a waiting game over the next 2 days as her brain swelled some but evened out now. It is her biggest enemy at the moment. It is being taken care of through medication and time, and prayerfully will not need further intervention. This is why they do a CT scan every 6 hours, to have comparisons on swelling.
She still cannot move her right side voluntarily, she has involuntary movement as a response to pain, which is good. She also cannot speak and swallowing is unknown. These things percentage-wise can come back over the next 12 months through healing and therapy. She does respond by nodding, in short moments she is awake, which is good. She is moving around a lot on her left side, trying to get comfortable. So again it is all about waiting to see her response over the next 48 hours.
All of you know her as a fighter, as very physical and works long and hard. So our expectation would be the same in her recovery.
The rest of us,(Annissa, Even, Anthony, and Ruth, are moving into a beautiful AirB&B, just 5 minutes down the road for what could be three weeks. A friend of a friend of Karol’s family owned a few here a gave it to us for a very discounted rate, a small cost compared to the hotels available. starting tomorrow, heavier covid lockdowns begin here and we cannot stay overnight with her. Right now Annissa and I are the only visitors allowed with her, so it’s a relief to be able to leave and have her here. But new covid changes starting tomorrow morn making it so only I can be here.
I grew up with my brother Daniel spending many times in Children’s hospital in Chicago. So the ICU and time in this room is both comforting and terrorizing! It has a peaceful feeling to me in this small space with very familiar sounds of beeps, buzzes, and such. It is quiet and can offer too much time to think and worry, but it has been a beautiful thing to have the consistent interruption of phone calls, texts, messages, Facebook to interact with so many of you. I continue to be awed by the outpouring of love from now over a thousand people, not even counting the dozens of church families who are praying. I truly did not know how loved we are, or how the collective ability of our family,(both related, friends and the Camp Daniel family), has to heal and bear such a big burden which I cannot alone. It is the collective of people Many call it a church, but I have always believed it is not brought together by walls, rules, or control, but purely by God’s love.
In a moment in time that I have been slowly sinking this year… starting with my dads extreme battle with pneumonia and the hospitalization, to the covid madness, to not having camp, to getting covid and the battle of my own thoughts on death during that, to the racial and political division, to death of friends, to changes in relationships with people I love, I have been siking and feeling like we are running out of love and allowing fear to guide. I have experienced in the last 2 days that God’s love is everywhere, held in the hearts of each other, it heals, it disrupts, it soothes, it changes all who experience it.
The man in me desires nothing more than just be able to have a conversation with my Karol, I do not care if all of the life changes if we can have that.
But my heart’s cry is that the love I am experiencing from so, so many, would move us all a little higher and help us demand that be the guide to bring us closer, heal us, help us, soothe us, and bind us. I ask all to pray with me for ordinary love to be our manifesto to the hurting, confused, and suffering world. I love you all, keep on communicating and I will too.”
11-15-2020 – Post #3
“She continues to rest and be monitored. She has had 3 CT scans. The first two showed the swelling going down a bit, which is important. The Neurologist was just in and said the 3rd CT showed no change. She had an x-ray on her brain and an ultrasound on her heart. The Xray showed effects on about 40% of her brain. Physical therapy was just here, it was heartbreaking to see her struggle. It was very real to see her in that state. Someone just laying in a bed looks like they are sick or sleeping. She had yanked her own breathing tube out yesterday, so she has been breathing on her own since then. All in all, she is stable, but still very confused and agitated at times.
She will open her eyes from time to time and look at me, and will motion to have her hand held. I do well until she looks at me with panicked eyes once in a while. I cry a bit, I want her to know my worry, yet I also reassure her simply, so she doesn’t feel alone and understands she has an army of people who will walk through this with her.
This is the part that is hard is that she is scared and there is a constant flow of sweet-talking Kentucky nurses in and out she doesn’t know. She clings to me sitting right next to her. I, on the other hand, feel the love and support of the hundreds and hundreds of all of you through Facebook, texts, and phone calls. I couldn’t be more thankful for all of that love, I am trying to express it to her.
The day before yesterday I had been writing my article for our Christmas newsletter. I was writing about Joseph and his focus on the vision God had given him. Carrying a vision is hard, at times it’s like walking around with a car on your back. I know beyond anything that it is happening, evidence even in this moment of writing proves it out. I think about Joseph often, and the weight he carried. How sharing a vision is lonely at times because you see it vividly but many cannot. Joseph seemed to be able to connect his pain, Even sitting in that well, sold into slavery, and carried away to a foreign land, he carried out God’s plan. I want words to mold me, but I know that God uses experience, and a life lived, to mold us into what He desires for each of us. I fail often, but God is not shocked or deterred from my shortcomings. He only has an interest in loving each of us and helping us move forward. I wrongly fear his molding, but I know in the end His love and His plan win. So I sing to myself that amazing song that gives me courage- Tis so sweet to trust in Jesus… oh for grace to trust him more.
please continue to pray, it will be a few days before she is out of the woods. We love you all so.”
11-14-2020 – Post #2
“We got down to Lexington at 5PM. I waited for her covid test results to come back until 7:45. They were negative, they let me in with her then. She knew me immediately by voice, she reached up for a hug and then wanted a kiss. She is very tired and groggy, Dr. said its from being brain tired. She can’t move her right side voluntarily, only involuntarily right now and she cannot speak. This can all get better though. She had a second cat scan at 7PM and it showed some reduced swelling. Swelling is the biggest enemy right now. They will cat scan again at 5AM. She seems a bit scared and not understanding. She can shake her head yes and no. So we have a little communication. The brain doctor will be in at 10AM to go over the game plan.
I am feeling better being here, but am scared nonetheless. Only I can be up in the room due to covid. My heart is broken in the moment, but I know God has a plan. The outpouring of loving messages is overwhelming. The many people who have sent financial gifts to help us pay for this time is a miracle. I know this all may be coming out disjointed but I just want everyone to know where we are at.”
11-14-2020 – Post #1
“I ask for your prayer right now, as overnight Karol had a stroke. She has been in Lexington KY, with Annissa and Ruth helping her sister Janice paint her new house this past week. Annissa woke up at around 4 AM and Karol was on the floor unable to talk and move. She was in a panic. Annissa called 911 and Ruth called me. The rescue thought it was a stroke immediately. They took her directly to the local hospital where she was life-flighted to The University of Kentucky Hospital and right into surgery to remove the clot in her neck. She just came out of surgery and is sleeping and Annissa is at her side. They will wake her this afternoon at some point. There seems to be a number of contributing factors to the stroke. The prognoses is wide-ranging in the extreme- she could lose speech and movement, this is highly unlikely as she is in good physical shape, young, (49 yrs), and is a fighter. The opposite end is a better possibility in that over the next year she could fully recover.
Annissa has been a rock, no panic, and did everything cooly to get Karol’s help. Because of Covid, only 1 person can be in the hospital with her. Anthony, Evan, and I left immediately for Lexington from Camp Daniel and will arrive around 5PM.
I am having waves of peace and waves of terror. I am trying to land in the middle, but that’s not my normal. I trust God has a plan and loves Karol more than anything, so I try to stay in that place. But this is scary, Anthony and Evan are scared, but we have our amazing family and our extended Camp Daniel family that are praying for Karol by the hundreds already. I am humbled and so thankful for those blessings. God knows my love for her and for all of you, together we can do this.”