On November 14th, 2020 Karol Piantine, Camp Daniel’s co-founder, and Tony Piantine’s wife, suffered a major stroke while visiting her sister in Kentucky. Karol is in good health, she is young (50 years old), and she is a fighter so we stay hopeful! Below are Tony’s updates on her health and His walk with God during this time.
3-18-2021 – Post #57
After the 24 hours stay turned into a 2+ day stay, we are finally getting out of the hospital, we will leave at 4 pm! Karol had much drainage of spinal/brain fluid into a port they had stitched into her head. It has slowed enough for her to leave. The Surgical team felt she looked good and was on the right track. She felt terrible most of yesterday with pain and then nausea and throwing up from the medication for the pain. She started taking just Tylenol this morning and it helped her pain and she finally was able to eat. We have an appointment Monday to see the surgeon again to evaluate her head, and its healing. She is very, very happy to go home from this stay at Aurora Hospital.
This is the third hospital we have been in over the 4 months of this journey, and we have come to much gratefulness for good, old Bellin Hospital in Green Bay. It’s home to us… the Drs, nurses, receptionists, food, and care are amazing. We will continue Zkarols therapy there along with the Neuro team which is overseeing her care there. We will also continue with Froedtert Hospital in Milwaukee with cardiology and genetic testing that will prayerfully lead us to why this stroke happened and what we can do to prevent it again.
I have learned so much in these 4 months. But, among the best lessons is that the best care has come from those who have had compassion. The compassion showed towards Karol and our family is hope, and that hope is love, and love is always healing. It helps me as I lead Camp Daniel and interact with campers and their families. It’s a good thing to experience firsthand, it’s a good thing to know how to love those we serve in that way. We always need to bring hope and love. We love all of you.
3-16-2021 – Post #56 PT 2
Karol is out of surgery and in her room resting. She is very, very tired. Everything in surgery went like it was planned. They had to suture around the drain tube in her head to make it not bleed. So they had to give her more medication to do that at the end of surgery. She reached up for my hand as soon as I came into the room. She has tried to open her eyes but just cant yet! I said your head looks nice and round and she got a big smile, which helped me know she is just fine. They said it will take another hour or so for the sleepy to wear off, but that all her vitals are great and she is doing good. The surgeon will come in at some point to check on her. Thank you everyone for all your prayers and all your love. Healing comes powerfully in that love.
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
Crystal Johnson, who has been a camper at Camp Daniel and even lived with us at Camp Daniel for a year. She said she had a dream that Karol was walking and talking! The anxiety disappeared, the fear wained, and the trust flooded back. God has a plan, we have trust in his love and the love of all of you. We are summiting this part of the mountain, ready to trudge on to the bigger things ahead. Thank you Crystal for your love and sharing. You have given me much today!
3-16-2021 – Post #55 PT 1
I once again sit at the side of Karol’s hospital bed, holding her hand, quietly begging God to let it all be ok. She is excited to have the surgery, as it should eventually relieve her head pain and help her gain some independence. I look forward to those possible outcomes, but remain in the anxiety of the moment! She has been emotional the last few days, I think the anxiety and excitement keep her emotions going up and down.
I was looking at old pictures last night, remembering the years we have had. We have had and continue to have a blessed life. My feeling after 34 years together is simply that we have been loved and are loved.
The surgery starts at 12:30 and should take about 2 hours to complete. We ask for your prayer and will post an update as soon as she is out of surgery. We love you all and are so grateful for your love for us.
3-12-2021 – Post #54
Our big news today is that Karol will be having surgery to replace her missing skull piece next Tuesday at noon. We are excited yet scared! Surgery on the brain is a big deal, but our neurosurgeon assures us that this is not too big of a deal. It is about a two-hour surgery, which includes shaving her head, opening her up, installing the artificial skull, and installing clips and screws to hold it in before stapling the scalp back together. One of the big parts of having the surgery is that it will reduce the pain she gets every early evening. She takes Tylenol and uses ice packs, but the pain is enough to bring tears from time to time. The pain is typical for post-stroke and for having her skull flap not there.
Karol’s walking is improving each week. She walked with Annissa down to the mailbox on the blacktop arm in arm. This is about a 16th of a mile. The PT is working hard on her balance, and adjusting strength in her ankle. OT continues to work on getting some strength back in her shoulder. The subluxation set her back 6-8 weeks in her strength and ability. So it will just take time for her to gain strength back so she can work more on her wrist and elbow strength. Speech continues to get better in very small ways, especially in reading words and short phrases.
Yesterday we went to Froedert Hospital in Milwaukee to meet with Dr who is taking us through the genetic testing and getting the answers as to why she had the stroke. As we drove back from Milwaukee, we were able to call a few people in the car on speakerphone. The covid isolation combined with stroke isolation can make for a hard storm of feeling disconnected. Our friendships can feel distanced due to a lack of interaction. Because of Karol’s inability to speak and respond fully in conversation, many find it scary and hard to relate, so they keep their distance. This double isolation is so hard for Karol in this post-stroke journey. The isolation for me as her caregiver is frustrating. I do not share this to express anger, but rather to bring light to a situation such as ours. Discouragement lurks everywhere and negative thoughts can drag us into a pit. I have an outlet in being able to share and speak about how I feel, and because of our incredible family, I get breaks and can put my worries and mind at ease. For Karol, it is much harder, as she cannot express the pain, fear or worry she feels other than through tears. Her mind cannot escape the bars the stroke has built for her. I try to express as much as I can for her, but it falls way short. Ultimately the isolation brings her down and being down makes way for depression. Post Stroke Depression is a reality for more than 60% of people who have had a stroke. Karol is dealing with this depression, she is now taking medication. This doesn’t mean that she is down all the time, it really means that she can get down easily, that frustration can bring her down quicker. The inability to express her thoughts, the head pain, and the restrictions in her arm movement are leading factors in her frustration. The isolation can be a prison, but as they increase in those vaccinated creates more opportunity for interaction, along with medication have incredible healing powers! So please pray for Karol and her healing in the ability to talk. We have no delusions that she has to be able to talk as she always has, but hope that she can get better and better, enough to be able to say what’s on her mind.
One of the conversations on the way home was with our good friend Carmine Dibiase. We talked about many things but eventually landed on perspective and how that so affects our outlook on our lives. All of us have stuff we deal with in life, someone else’s life challenges are equal to our own for them. So with that, we have to keep perspective on our need for each other. We must reach out and work to connect. Some of us are parts of the journey where we are restricted to doing that well, while others are places when we can connect fully. I challenge all who are in a place on their life journey that can reach out and connect to those in places of need, to do so. That circle of life helps us to keep going on days when we need help to take another step. For Karol, another step means the world for her and each you do too. We love you.
3- 3-2021 – Post #53
I apologize for the long time in between posts updating everyone on Karol and her healing from the stroke. It has been weeks of routine for us and we now are ready to begin yet another phase of her recovery.
We met today with Dr. Ots, Karol’s Neurosurgeon who will do the surgery in March sometime at Bellin Hospital to put in the artificial skull where it was removed. This will help relieve Karol of the nightly headaches and then begin to give her more independence as the worry of a fall that could damage the unprotected brain is gone. She is also ready to not have to wear the helmet that protects her now! I think we both are feeling anxiety for another brain surgery and excitement for the change that will come with it. I think the underlying note of having her head shaved again, but then allows her to begin growing her hair back out brings her happiness too! She also had an echocardiogram to check on the hole in her heart to help decide if they want to do surgery. She is also wearing a heart monitor for a month to also get data.
Our neurologist, Dr. Stanko, gave us the results from Karol’s recent Cat Scan along with the scans from Kentucky which were finally able to get access to. She officially diagnosed Karol with Fibromuscular Dysplasia. This is a condition that causes the narrowing and enlargement of the arteries in her body. Narrowed arteries may reduce blood flow and affect the function of her organs. This appears most commonly in the arteries leading to the kidneys and brain. It is the cause of the arterial dissection that led to her stroke as well as dissection in her abdomen 7 years ago. The next step in the process now is to go through the genetic testing to see if this is the root cause of the condition and if so, can be passed to our kids. We begin that process at Froedert Hospital in Milwaukee on March 11th. From there a plan of future preventative care can be established.
Karol’s therapy has continued to progress. She is walking better and better. The PT is focusing on her hip and ankle, making adjustments to her gait. OT is working hard on her shoulder and grip strength. We purchased a shoulder brace that helps with the shoulder dislocation and allows her to work it without pain. Speech therapy is finally starting to bring some change. We started with a new speech therapist 2 weeks ago and that has helped. She is now saying things she hasn’t, such as waking me last night to say ”bathroom” and this morning to say “breakfast”. It is very encouraging to see change for her, and all of us working with her.
Last night, I spent time reading back over the Facebook posts from the last months. It is good to vividly remember the horror of the first moments of this and then read the progression to where we are today. I am thankful for my friend Pam Tice who early on, encouraged me to write down the experiences and take pictures to remember. Her father had a stroke some years ago and she sat at his bedside much like I have with Karol, so she has first-hand understood the roller coaster ride we have been on. I truly am grateful for her words of wisdom shared with me throughout this time. So many of you have experienced the pain, fear, and journey of health issues firsthand and through walking with loved ones through health issues that are on par with what we are experiencing. Your encouragement has been so important to our journey. As I re-read through the hundreds of comments, I was once again overwhelmed by the love expressed to us and continues to be expressed to us. I worked with Evan on some of our personal finances yesterday, and again I felt loved so deeply, by generous financial gifts that have continued to come to help us through paying for fuel, meals, and medical devices such as braces. Especially as we travel each week to Green Bay and Milwaukee for doctors’ appointments and therapies.
I personally continue to be laid out on my back, humbled beyond what I would ever have thought possible. I am filled with gratefulness for all the love we are experiencing as I lay in the mud and muck of fear and uncertainty. I have hope and peace as I know God is leading us in His plan, and am thankful for each of you who are helping us through it all. We love you all more than we can express.
2- 14-2021 – Post #52
I am sitting and watching Karol walk on the treadmill at Physical Therapy. She has improved her walking an amazing amount over the last weeks. She can now walk without a walker or cane, with only someone walking close so she doesn’t fall if she gets into trouble. She has some balance issues but is working hard to get through those.
Last Friday we had a snowstorm and had to miss therapy because the roads were so bad. After doing her therapies at home, we noticed her shoulder was substantially drooped on her right side. I called the OT she works with and explained what it looked like and she sent us to the emergency room. So we waited for the snow to stop and left in the afternoon to Green Bay. They took X-rays a felt it was a shoulder dislocation. The Dr. relocated it and took more X-rays. They also put her in a brace. We went to our Orthopedic Dr then on Tuesday, and he took more X-rays and felt it was not a dislocation, but more of a subluxation where the joint is pulled apart due to the weak muscles from the stroke. The Ortho Dr gave her the ok to keep at therapy the next day! It all made for an eventful weekend. Her shoulder has been slower to respond to therapy than the walking but is still moving ahead.
Speech therapy has continued to be agonizingly slow in its healing. Karol works very, very hard each day on it. We use an aphasia app on the ipad as well as the DynaVox communication program. We use flashcards and talk to her a lot. She pushes to express what he is thinking, but it is hard. We turned on the closed captioning on the tv, so she reads and recognizes words as it scrolls. She listens to audiobooks through her phone and has been scrolling through facebook and Instagram despite not being able to read… she looks at pictures.
We have adjusted to life as it is and find the blessings such as our kids, parents, the few close friends we see during covid, and our Camp Daniel community.
I have found that thankfulness is the key to my staying positive and focusing on trusting God’s plan. I find myself in a state of disbelief that we are experiencing what we are. But if I work to find thankfulness, even in the very littlest of things, and that is like medicine to my mind’s struggle.
So I end this update with a big thank you. We have been working on thank you cards being sent to so many of you who have supported us with generous financial gifts. Karol has helped paste those together and stuff them in envelopes as well as put on address stickers. We cannot express enough thanks to you who have been so giving to us in this hard time. The expense of travel and meals to Green Bay and Madison 3 times a week is expensive and our ability to do design and small construction jobs to help bring the finances we need, has ground to a halt, so we live in much dependence on the loving generosity of all of you. We love you all and thank you also for your continued prayers.
Karol had a bad night sleeping last night, she was moving around a lot and I woke up to her rooting around in her bedside stand at 4 AM and watched her pull out her kindle. Karol has always been an avid reader. Every night before bed and then in the morning she has read book after book on her kindle. It is one of those things that has always been part of her daily life. I watched her from my pillow as she got the kindle from the drawer and then turned it on. She looked at the page she was last reading 2 nights before her stroke. She paused and then started flipping pages, stopping and flipping more pages. She became irritated and dropped it on the floor next to the bed. You see, since her stroke, she has been unable to read, or write and has aphasia, which severely limits her speech. She muttered “It’s not fair” and started to cry. I did the same. Her inability to converse and read has proven to be so painful. I wake up at times in the night still feeling like we are in a surreal nightmare. It’s so hard as she tries so hard to say what’s on her mind, yet only a few disjointed words come out. She gets frustrated at times and cries, I attempt to comfort her, but typically I end up crying with her. I desperately want to understand what she is trying to tell me, but many, many times I cannot get it, especially without context of what is going on in the moment. I feel strange loneliness without her conversation. We are one together, we balance each other day today. But without full communication, a big part of us is missing. It is excruciating, painful and brings sadness to both of us. I talk a lot to her, and she listens intently. But there is typically no response. she fully understands all that is being said to her, which makes it all the harder for her. Because of our backgrounds in working with people with disabilities, we are used to communicating with a concrete yes/ no questions. She nods yes and no fluently. But she just cannot say what’s in her mind. It is isolating for her at times I know. She fears a long future of this and I worry about her in it. I am thankful that after nearly 35 years together that we have a much-unspoken language. She works hard at her speech therapies using an aphasia program on the Ipad with all of our help. But it is a slow process that lags behind her Physical and occupational therapies.
She is having improvement in her standing and walking. She continues to work very hard throughout each day on her therapies. She has always been a hard worker and she continues to do just that. She walked again on the treadmill last week and walked faster and longer than the week before. The OT worked for her shoulder and hand, and despite it being tired she kept at it.
Last week we went to Froedert Hospital in Milwaukee to meet with a vascular specialist. She is sending Karol for genetic testing to find the likely cause of her arterial dissection and then stroke. We will be going to the Children’s hospital for the genetic testing as they are specialists in the field. We also went for a cat scan in Green Bay so they can make the skull flap for her upcoming surgery to replace it sometime in early March.
The kids all continue to help us out every day. Annissa has been amazing, being here every day with Karol doing therapies, cooking, and getting Karol out of the house. Yesterday they stained woodwork for Dylan’s office in the kitchen. We all have put much time working in the dining hall, finishing up many projects in it. Today Anthony and I installed door handles, locks, and kick plates while Evan and the guys installed the concrete countertop in the men’s bathroom and also put up door closers. They also finished the cupboards in the kitchenette that will be used by counselors with special diets. We installed the roll-up doors on the serving windows too! We also prepped the area where the oven hoods will get installed when we finish raising enough money for them. Regular maintenance of the skid steer, snowblower, and sand spreader also was done. It feels good to be back in some of our typical routines on campus.
I continue to learn about all of Karol’s typical jobs in our household, like paying bills, cleaning bathrooms, keeping ahead of appointments, and such. It’s a lot to think about.
This time of not having out typical communication has been harder than I ever could have thought. I went to pick up prescriptions at our pharmacy. This is a business in Crivitz that Karol did the interior design for. As I stood in line I felt sad and asked God to let her be able to get back to that someday. I have many moments like this where I am faced with what was, and then must deal with feelings of loss. While I know God has a plan it can be painful in the midst of its unfolding. The combination of covid separation and the stroke has made for experiences of missing those I love, but am not around in this season. I know we are not alone in these feelings as so many have had the separation from those they love. I pray for all of our campers who experienced this in extreme ways. I am praying we get to have camp this summer in order to help each of them readjust to typical life and offer the loving relationships we all need in this time. I am thankful to all of you who have continued to reach out to us and share love, generosity in helping us pay bills, and the many prayers for Karol’s health. We are blessed daily by so
many of you, we love and thank you.
1- 17-2021 – Post #50
Karol made it through Camp Daniels community-wide Covid infection without getting infected! Annissa, Karol, and Zech all did not get it. Everyone else did. We hunkered down in our house and Anthony worked to stay away from everyone and all were masked up. It was a trying time as Karol would not do well with covid right now. Part of the effects of her aphasia is that her swallowing is affected, and that causes her to cough a lot. Coughing makes her head throb in pain due to the fact that she still is missing a large part of her skull.
She battles regular headaches due to all of this, which is normal for having your skull not there. She takes Tylenol and uses ice packs to alleviate her pain. She had her first therapy at Bellin Hospital in Green Bay in 10 days due to the covid outbreak. She struggled with speech therapy, which is her norm. She has been working hard at home for several hours each day with each of us with flashcards and the iPad. Both OT and PT noticed improvements from her last sessions. Her right arm and hand are strengthening and her shoulder is beginning to respond better. Her shoulder strength is important to her right side upper body movements as it affects everything. She experiences some pain when her arm gets behind her in bed and such. Physical therapy got her on their treadmill which was an incredible boost for her. She is able to walk freely, entirely bearing her own weight but strapped into a harness in case she stumbled. She walked for almost half an hour at 1.3 mph. The treadmill measured her stride which was typical for someone of her height. It measured her weight distribution which was 45% to 55% on either foot. She was exhausted after but was very happy as it showed her potential, which is exciting. We are excited about anything that gives us hope for the future!
We get ready in the coming weeks for new appointments. We see a Neuro/vascular specialist at Froedtert Hospital in Milwaukee who will go over Karol’s CAT scans and Ultrasound. She will help us find the reason why Karol had the stroke, which will help her not experience another one. She will
likely begin genetic testing to explore whether or not she has a disorder of her cologne that is genetic. Next week we go to the Cardiologist at Bellin to discuss whether he will do surgery to close the hole in her heart. The following week she goes to see the Neurosurgeon who will put the skull flap back on. In addition, we have therapy twice a week. Karol has been working very hard at home doing therapy, she is generally very positive and works so hard. She desires to continue to progress and is willing to work hard through it.
We are learning to live in our new not normal. I have learned it’s ok to take a nap if Karol wakes me up 3x during the night to use the bathroom! We try to get up about 7:30 and I help her shower and dress. I then help her get breakfast and then Annissa and Anthony help her with speech, putting away dishes from the dishwasher, and clean up breakfast. This gives me time to shower and dress. I have learned to stay ahead of laundry and house cleaning too! I spend time working through insurance, and reimbursements for travel to therapies and Drs appointments. I also have to stay on top of prescription orders for all of us downstairs and the guys upstairs. Annissa is good to get me out of the house every day to work on the campus. It is all-new for me in many ways, I think I am adjusting well! We thank you all for your continued prayer, love and messages, they mean so much to us each day.
1- 8-2021 – Post #49
The last days have been a continued roller coaster for all of us. Covid has hit our campus hard, as my Mom and Dad, Anthony, Ruth, and Laura Lee have all tested positive this week. We awaiting for the guys results to come back tonight. Thankfully Karol, Nis, and Evan tested negative, and we are isolating away from everyone. I am still inder the 90 days since I had it. We have worked hard to be as careful as possible throughout this. Being in contact with covid has shut down Karol’s going to therapies until next week. We all continue to work hard with her doing all the at-home exercises the therapists have given us. She continues to respond very well to the physical and occupational therapies. She makes great small steps each day. It is exciting for her and for us as we work hard at it.
The speech therapy is on the other hand very hard-fought and there are just micro-steps in her abilities. She is often so frustrated at her lack of speech and wanting so badly to share what’s on her mind. There is a daily point in which she gets tearful as she worries it won’t change. We all try hard to be encouraging. We all also know that this is a long road and change will come excruciatingly slowly. The lack of speech is isolating and scary for her, even in our best of circumstances here. It is painful to try so hard to understand what she is trying to say, but can’t.
We had our first Drs appointment with our regular doctor to go through all that has happened and then to chart a plan for the future. Dr. Jessica helped us get started with a neurovascular surgeon who will help us navigate the way that this happened. It is likely a genetic collagen issue that causes arterial dissections in arteries that led to the stroke. So we will begin going to Froedert Hospital in Milwaukee next week, to begin with CT scans so the vascular Dr can begin making decisions on what the future treatment will be. Karol also is scheduled in 2 weeks to see the cardiologist to decide what to do with the hole in the upper part of her heart that was discovered during her time hospitalized with the stroke.
The kids are doing incredible through the whole process. I honestly do not know what I would do without them. They are here daily helping her, working on Camp Daniel stuff, and helping me through things like medications, interacting with the Drs, laundry, cooking, and cleaning, and our finances. They allow me time to work on leading the crew of guys on continuing the finish to our campus. Karol and I are so thankful for their love and commitment to us and to the ministry here. I say to her several times each day- they are good kids, better than we deserve.
I am finding myself wrestling with all the emotional and physical extremes throughout all of this. There is exhaustion from it all. The reality of how life completely changes in an instant takes time to sort through and grasp. In moments I simply feel sad, as I miss the way our oneness worked in the last 34 years of being together. But on the horizon, a new oneness is developing, but much like therapy, it changes at a slow and painful pace. I know that God knows our pain from our limited view and that he is loving and will give us what we need to make it through it all. As I shower each morning I repeat over and over to God that I trust Him, that I hurt, but I trust him. Maybe it’s less to tell God than it is to tell myself, that we are in the middle of His plan for us. Like my favorite old song says “Jesus, Jesus how I trust him… just to take him at his word, just to rest upon his promise, just to know…” It my daily hope and prayer. I know He loves us, and he loves you too, so trusting him is always paramount to living in promises.
1- 4-2020 – Post #48
We have spent the last few days learning about our new life! Each morning Karol and I awake around 7 am and I help her get up, shower, dress, and get ready for the day. At 8 am I help her make her breakfast and she eats and then works on speech on the Ipad with Anthony. I then shower and get ready for the day. Annissa and Evan come over at 9 am. Annissa then works on Camp Daniel’s stuff with Karol. Nis and Ruth do therapies throughout the day with Karol in the house. Evan and I go to work on the grounds with the guys. We have been working on Ruth’s van that was donated to her along with various other projects around the campus. Anthony has been running all the electrical to the walk-in cooler and freezer the last bunch of days, we hope to be able to turn these on in the coming week.
Karol’s therapy is going well at home. She makes daily small progress! Her walking is going well and she works hard to be as independent as she can. She is doing many strength exercises as well as working towards getting balance back. It is really her biggest obstacle to much of her standing and independent abilities. Her speech continues to improve as far as automatic words and phrases. She still struggles hard with the blue, talking, that has no context. There have been frustrations for her as she just can’t get the words out. I am proud of how hard she works and her tenacity to keep at it all. We go to Green Bay 3 days this week for therapies and Dr’s appointments.
Overall, the adjustment of life is going pretty well for all of us. It is truly a team effort. I am thankful for our family here, without them this would be so hard and overwhelming. I work hard to keep my mind in the right place, to stay positive, and be thankful. It’s a combination of discipline and accepting help, that keeps me in the right place.
1- 2-2020 – Post #48
There is little to say from yesterday as far as Karol’s progress. We all continue to work with her to make sure she does therapy every day. We do so with hope for her continued progress and healing. It is becoming a daily grind that will yield slow and steady changes for her. We all will become less focused on her therapies and more on living each day as God leads. I will begin posting every other day from now on, in order to keep everyone updated with our journey. During times when she has more Dr’s appointments, or goes to surgery to have her skull flap put in, I am sure I will update more. We are so grateful for the daily comments that have lifted us up, showed us much love, and encouraged us to stay positive. Writing here every day for 8 weeks has been very therapeutic for me, and has helped me process all that has happened. It has helped me to not feel alone knowing so many of you are with us. It has helped me through the fear that still shows up in waves. It has helped me to stay thankful for all we have as a family. Ultimately it has helped me center my focus on Gods leading as we have journeyed.
People thank me for being vulnerable, which is so interesting to me. I can’t imagine going through life without putting out the things that are good, bad, and ugly. It is the only way people can know how to help or even feel invited in to be part of our lives in a real way. I know I cannot do life the way God desires if I don’t have the people he sends to love me and care for me. It is the easiest path to knowing he is there, and to knowing how much he loves me. I read the bible and it is in me, but it is when it is brought out through the love of others that it makes sense to me. I need both, I need to know the word, and live it in order to love and be loved. So I ask for your continued prayer and encouragement as we keep at this life He has allowed us to live. I still wake up some mornings in great fear of what the future holds. I often cry tears as I so desire to have a conversation with the woman I love more than anything. But I also get out of bed in confidence that God’s plan is unfolding. I still embrace her feeling closer than I ever have to her, as she needs me in a way I never thought she would. I pray for each of you who are part of our community, to become more trusting of God and to be more vulnerable in order that people can move in closer and show God’s love in a way that is so healing. We thank you and love you all.
1-1-2021 – Post #47
Happy New Year! We had a nice, quiet New Year’s Eve. Karol worked with Anthony once again on speech for over an hour. She did some walking and working on her legs and shoulders and hand. We had appetizers and watched tv. Karol went to bed after 10 pm… by far her latest night in the last 8 weeks! After she went to bed we watched tv till midnite and went to bed. I believe we will now be settled into a schedule of sameness every day, interrupted by going to Green Bay for therapy 2 days a week and Dr. appointments. Hopefully, her physical and speech will continue to improve day by day as we work through things.
At the 2 month point of this journey, I have been thinking much about how change has come in our family’s lives. How each section of this hike has been filled with so much hard and so much love. We are much more connected to the hard journeys of others through it all. People have shared hard, yet encouraging stories dozens and dozens of times. In fact, another story develops right now as Margie Wied has been sick. We saw her in Inpatient therapy last week, but she came and left quickly. She had some kind of operation. We talked for 5 minutes in the therapy gym. Margie and Roger have volunteered at camp and on the campus over the 20 years alot. Their son Matt has also, and they have three other sons who all have been campers over the years. Margie went home for a period this week but ended up with a bad infection that eventually has gone to her brain. She is now hospitalized in Madison. Roger reported today he has kidney stones. All this happening and yet there is no complaint from them, they trust God and His plan. follow their journey on Facebook with the link I will share.
12-31-2020 – Post #46
Yesterday was our first day of all three therapies at Bellin Hospital in Green Bay.
It snowed 4” the night before, but it was pretty cleaned up for an hour and 20-minute ride. First, she had speech therapy and did great. She is getting good at the automatic responses and can repeat almost anything you ask her to. She will at times recognize words and letters, this has improved just a bit. She then had occupational therapy where she was evaluated and then worked on her hand and wrist. A plan was formulated for the therapy sessions and then what we will do at home in between. Physical therapy did the same, a long evaluation and then a plan came together. Both the PT and OT evaluations showed improvement from her last evaluation a week ago. we are now scheduled out for the month with appointments. We both definitely do well to know we have a plan and what plans and goals are. We finished our therapy day by going to the wheelchair store to get different pedals for her wheelchair. We ran a few errands to Costco for prescriptions and to Menards to buy another grab bar to
install in the bathroom, before heading home. She was very tired when we arrived home, she hung out with the kids for an hour, and then Annissa helped her get ready and go to bed. It was a good day, one of setting goals and mapping out the journey towards those goals. We know it will be a hard journey filled with rough terrain. We expect hi’s and low’s, victories and defeats. We will not allow ourselves to get trapped in either extreme. We will feel good and the hard, and work hard to stay thankful for Gods leading us into his plan for us. We are looking forward to new years eve tonight and gathering with our Camp Daniel community to celebrate.
12-30-2020 – Post #45
We had our first outing since arriving home from the hospital. Karol had speech therapy in Marinette. It was another time of evaluation in order to create a plan for speech therapy in the coming weeks and months. We also went to Walmart to buy a few things we needed. We came home at noon for lunch and Karol and Nis worked on walking, balance, and arm strengths in the afternoon. It was a good day!
Ruth and Karol worked on sewing patches on blankets again also. Karol’s dad came over for a few hours to hang out with everyone, it was a nice time. I was able to go down to the shop for a few hours with Anthony and the guys. We worked on an old workbench that will become a tv stand upstairs. We are doing minor repairs to it, cleaning it, and then I will clear coat it with matte poly. Anthony and I also worked on fabricating a cell phone mount for Karol’s wheelchair. Today we will head to all three therapies in Green Bay. We also will run a few errands, one to Costco to pick up my narcolepsy medication. These all sound like mundane things As I am reading back, but doing typical stuff sure is nice. Once again I am so thankful for everyone here pitching in to help us and love us.
Yesterday was a better day for us all! We have begun to find better footing on this part of the journey. It is again found in our family and community here at Camp Daniel. We were up twice in the night and then Karol woke up early, which means I also woke up early! I helped her shower, dress, and got her toast, coffee and strawberries ready for her breakfast. While we dressed and showered we worked on naming things and letter sounds. Anthony then got up and helped her clean up breakfast. She helped him unload the dishwasher, putting away the things in the lower cabinets. I showered and dressed while they cleaned up. I ate breakfast and then I started doing laundry, while the guys all spent the morning clearing snow off the campus. Anthony worked with Karol for an hour on her speech on the Ipad while I did the laundry. Ruth showed up then with Camp Daniel blankets, to hand sew patches on. She got Karol hand sewing them on to. Anthony created a jig to clamp the blanket down so she could sew them one-handed. Annissa then came over and worked with Karol to continue the laundry, (I had 7 loads to do from the 7 weeks we were gone!!) I worked on our calendar, planning the coming appointments and calling in medication refills. Anthony helped me create a new spreadsheet to track the medications for us, and the guys who live upstairs. Then Evan came over and went through receipts and my finances with me. My mom came over for a while to visit, and Karol’s dad came over in the afternoon to visit Her and Nis for an hour. While he was at the house I went out on the campus with Evan to make a list of the coming weeks’ projects on the grounds for him and the guys to accomplish. It was my first time walking the campus since this all has happened. It felt very good to be out for the hour and a half I was. Annissa and Ruth worked on physical therapies with Karol, walking with the cane, sidestepping around the table for balance, and then did foot and ankle exercises with the therapy band. They finished with her using therapy putty to work her fingers and hands. Karol and Nis talked to Karol’s sister Janice for a long time on speakerphone. We all ate supper together and watched the new movie Soul on Disney plus. We all enjoyed it for the message of it very much.
The day before yesterday was a very hard day, one of frustration, worry and struggle to journey. But yesterday helped me to see how God has given us exactly what we need to journey as we will, through this. It is no different than how He has built Camp Daniel and the ministries and programs that serve people with disabilities. It is no different than how our family made it through the hard moments of my brother Daniels fight for health and ultimately his death. It is in the power of a group of people who love each other and will do anything to help each other grow in Gods love. We do not feel alone, we feel supported; through the presence physically of our immediate community, the loving communication from all of you, and the prayerful support of everyone. All that is on top of the foundation of our God that loves us more than anything. I was reminded of this right when it was most needed this morning when my Aunt Jeanne passed along an old hymn that my grandmother loved called Day by Day. It was written by a woman named Lina Sandell who, as a child experienced partial paralysis and got better from it. Then, as a young woman, witnessed her father drown, and that experience inspired her to write this song.
Here is the first verse:
Day by day and with each passing moment,
Strength I find to meet my trials here;
Trusting in my Father’s wise bestowment,
I’ve no cause for worry or for fear.
He whose heart is kind beyond all measure
Gives unto each day what He deems best–
Lovingly, its part of pain and pleasure,
Mingling toil with peace and rest.
I pray we all can embrace the pleasure and the pain that is lovingly allowed in our lives. That our trust in God points to His love for us, especially in the hard stuff.
12-28-2020 – Post #44
Karol worked on speech for another hour with Anthony on his Ipad. She did well doing the program. We also did some work on her legs in the morning.
We had our last Christmas gift exchange of the season with the Piantine/Stonelake cousins. It has been good to have the distraction of Christmas celebrations, yet it is just that, a distraction. The hard work of the daily grind of therapy starts tomorrow. We have talked and shed tears about our reality. It is so, so hard for her to not be able to talk. While we continue to find different ways to communicate, we both experience frustration. We are riding on a rough road at the moment, it will take time to get our tires in the ruts so we can slowly move ahead.
I will soon stop the daily updates and go to updates less often. I am so thankful for your prayers, we love you all.
12-27-2020 – Post #43
Karol had her first day of working on therapies at home yesterday. She has continued to gain strength even in just the last days of even a little and no therapy. We did a lot of walking through the house. We also walked side-stepping around the table to help her balance. She did 3 sets of leg lifts laying on her back and worked her arms and shoulders sitting in her wheelchair. Anthony found a great program that he downloaded on his Ipad to work on the effects of her aphasia. She can get out words snd short phrases at times but typically struggles to. They worked on it for an hour this afternoon. Annissa and Evan have been helping me with some of her cares, to give me a break to work on some other things. All the guys upstairs and my parents who live across the campus have also already been great help. It is good to be on a team through this!
We went to Annissa and Evans’s house which is just 3 miles from us, late in the afternoon. It was a great first outing for Karol to go see their Christmas decorations in their new house on Nono’s cabin compound and also the cabinets that Evan built around their fireplace. While we were there I was able to help Evan install some cabinets in their laundry room, it was good to be doing even just a little construction again! It is good to reconnect with the good and normal of our past, and it is even better to start moving ahead with new projects that keep us focused ahead.
As I think about ending the hard year we have all experienced, I don’t think about the desire to end the year. I think much more about what the new year will hold. Jesus said in Luke that anyone who puts their hand to the plow and then looks back is not allowing God’s love to rule their heart. I get scared looking towards the new year because it is unknown and I at times struggle to trust. It is easier to look back and say anything is better than that was. But the truth is that all that happens when I lose my focus ahead is that pull back and stop moving ahead in the way I am being led. I heard one time that looking back, leads to drawing back, and drawing back leads to hell. I pray to be able to embrace anything that comes, to not turn away from what I see ahead, to keep at the work set before me. To embrace that my wife walks slower, needs help to move, and communicates less is scary for both of us. But if stay focused on how we were, it will crush us. So we look ahead to being led into new places and loving new people and loving all of you in better ways. Pray for us as we journey ahead, and we will pray for each of you the same way. We love you.
12-26-2020 – Post #42
It was a wonderful Christmas day for all of us here at Camp Daniel. Having everyone together was healing in its own right. Like probably most of you we ate, opened gifts and ate some more. It was a day filled with love and thankfulness for the birth of Jesus and our being home. I think Karol enjoyed all the action of everyone cooking, talking, and enjoying being with each other. It was Karol’s day off, the first time of not doing any therapies. We did spend some time learning to transfer her into the shower and other things related to getting up in the morning. I am thankful that when we designed and built the home that we built it accessible.
We start today the daily grind of working on therapies at home, in between outpatient therapy. We are already learning to move slower, to embrace the simple times of helping each other. It is hard for both of us to slow down, to be ok taking an hour and a half to get up, shower and dress. It is and will be a process of understanding what is important and what we value. We do know we value all of you, your love, and your prayers.
12-25-2020 – Post #41
Merry Christmas everyone! We made it home and it feels so good to be home! We were ready to leave the hospital at 8 AM and finally got out at about 10:30. Karol insisted that we go to the grocery store in Crivitz on the way home. I protested but she insisted! It threw us into the real world very quickly. It was interesting to push a cart and a wheelchair through the store at the same time. It was good because it was a very normal activity! She wanted to make sure Anthony had the food he likes and that there would be enough snacks for Christmas. I assured her that Mom, Nis, and Laura Lee were taking care of all that for Christmas but she did not care. While we drove home, we worked on saying words on signs and she did well. We came home to a house fully cleaned and decorated for Christmas by the kids. They worked hard to make our bathroom all accessible and rearrange our bedroom to help accommodate the space for the wheelchair. Arriving home was emotional and exciting. All the guys in the house were waiting with the kids in the living room and gave her a great reception! We ended up hanging out with everyone in the living room until 8:00, which is an hour later than she has been up in the last 8 weeks. She was happy to go to bed all snuggled up with Luna the dog in her very own bed! It was a good day all around. Her only frustration was not being able to describe what she has experienced. I tried to talk through it all with everyone with her. We also worked with the kids to learn how to help her transfer from the chair, change clothing, and other basic stuff related to her needs in the house. This will be a big transition over the next days after the holidays for sure. Anthony created a spreadsheet for me to track all her medications as I am now her nurse. Karol has always taken care of everyone in the house’s medical stuff, including medications. So it is all new to me.
My point of view in this has been 7 weeks of leaning on the bedside in a small room, fully focused on her. She has come so far. If someone would have shown me a video of her walking with a cane today, 7 weeks ago I wouldn’t have believed it possible. God has been good to us through the process. I leave behind those weeks of leaning on her bed incredibly thankful that I was able to be with her every step of the way. In this time of the virus, most people have not had the luxury of a loved one at their side. On Wednesday, watched from the hospital window as Santa Claus was raised up on the fire truck bucket to see kids in the cancer ward through the windows up on the 5th floor. It again underscored what we have had being such a blessing, so again I feel so grateful.
I finish this post by expressing to all of you how thankful we are for the consistent messages filled with love to us through this part of our journey. Words are not enough to express how loved we feel through the prayers, financial support, and love, you have showered on us. We are truly humbled and grateful. We love you all, Merry Christmas!
Today is the day, Christmas eve! We hopefully will be leaving for home around 10AM. Karol and I spent the day yesterday learning the different therapies we can do at home in between the outpatient therapies she will start next week. We also went over things such as showering and car transferring. She also was reevaluated by all three therapies to track the changes over the last two weeks of therapy. She has made very strong moves ahead in OT and PT. Her speech has improved at a slower rate but still has improved. It is a hard time to get out of the hospital during the holidays as there is fewer times outpatient therapies happen and fewer therapists working during the holidays. So we will start speech therapy in Marinette and PT and OT in Green Bay next week.
I texted with Nissa last night and she said that she was very excited for us to come home and also feeling nervous. She said the happiness outweighs the nervousness by alot! I think that is very much the sentiment Karol and I both have. We spent a lot of time today talking about going home. The reality of our new life will hit us hard once the emotion, and the holiday ends. We have talked about it and know it will come. I talked to her about how discouragement will come, and that its ok to feel it, and express it. But also how one of us is going to have to remind the other, to be thankful for all that has happened through this, in order to keep trusting God’s plan for our lives. I plan to keep updating, even after we get home so everyone can stay informed of Karol’s progress. It also has been great therapy for me! Thank you all for your love and prayers throughout this time. Merry Christmas eve.
12-23-2020 – Post #39
We started the day meeting with the therapy team that included the Dr. and social worker. We went over the exit plan for 10 am Thursday. We talked through needed equipment for home, which includes a cane and possibly a talking device to augment her speaking as she works through it. We discussed home therapy. They are prescribing therapy in our home 3 days a week- speech, physical and occupational. We also scheduled her appointments to begin the process of putting her bone flap in, which will happen in February. We also scheduled an appointment to have a cardiologist look at the small hole they found in the upper chamber of her heart. Then lastly, we talked through the process of seeing a vascular specialist to begin investigating why this happened and the possible genetic testing that could accompany it.
Next, she had speech therapy, and she struggled hard through it. It was hard enough that she cried after the therapist left. She is scared that the speech won’t come back and she won’t be able to communicate. I assure her she is making small steps ahead and it will change from where she is now. It is so hard though to not be able to say whats in your mind. I daily explain that this is a marathon, and we will keep at it together. We know we are in it for the long haul and will encourage each other through it, and continue to be encouraged by all of you.
After the speech, she worked with OT on her shoulder and arm movements. She is experiencing pain in her right hand which is limiting work on her hand. She pedaled the hand bike for a long time and worked on her wrist. PT started with the long walk to the gym and then getting on the recumbent bike for 10 minutes. Her leg has really strengthened through her time here. She then worked on balance for a long time, learning to better shift her weight in order to move more freely is key to a lot of movements. She finished the day with the long walk back to her room. Where we got her into bed and she slept for an hour and a half!
When we leave tomorrow it marks 40 days since this journey began. In Jewish history, the number 40 represents transition or change; the concept of renewal or a new beginning. Jesus was in the desert for 40 days, Noah watched it rain for 40 days while on the ark, Moses went on the mountain for 40 days. These trials and times brought about change in the lives of those who experienced them. It is not lost on us that this 40 day period away from home and family, fearing death and the effects of the stroke has been a trial. It has been a time of change and transition and will become a time of renewal and new beginnings for us. I look back over the last six weeks and realize the incredible pain and fear that this began with knocked me down on my back. But that vantage point allowed for a new and different humility looking up from the mud and seeing God reaching down. It has created a transition and a new beginning that I don’t take for granted. As God allows us to be in a place of total dependence on Him, the lessons of trust and faith have become sharpened in the living through this. My hope and prayer is that I can keep sharp and continue to trust Him in a new way.
12-22-2020 – Post #38
Karol started the day showering with the help of OT. She dressed herself and then worked on her arm and shoulder in the therapy gym. She did some walking with a cane with PT. She is walking pretty well, she just has balance issues right now. The rest of her PT was spent working on balancing. She did speech therapy before lunch and right after and had her best day yet. She was able to say the names of many things from flashcard pictures. Her afternoon PT was spent teaching me how to help her walk, use steps, balance, transfer, and such. She then worked on her ankle and foot movements. In her last OT of the day she had electrodes put on her arms and shoulder to stimulate the muscles as she worked on picking things up and moving them. She finished by working on movements of her shoulder.
I awoke very early this morning and began worrying about going home. I realize it’s foolishness to worry, but it flows in uncontrollably as I think at all about all the unknown next steps. The things I am contending with are big, yet they are mostly things I cannot control. They bring some anxiety, yet I trust God is leading down the path He has us on. The one thing I can control is my reaction to how I feel about the newfound slowness of life. Building Camp Daniel is our everyday thing. Construction on the campus, on Karol’s interior design projects, on projects we are hired to build at churches and businesses are going to be much less. We will both have to learn a new pace. I honestly worry about that for me, I am used to working hard 10+ hours a day and it will be a hard transition for me. I know all the verses about resting in God and the strategies of acceptance, yet the reality of change is difficult. So as I process the idea of all that will be new, I know that part of the journey is charting the course and understanding the dangers. From there it is only walking into it, that shows me that I am really changing. So I ask for prayer that I walk into the change with firm steps.
12-21-2020 – Post #37
Karol had a good day yesterday on her 50th. The nurses brought her a birthday cake and sang happy birthday to her after lunch. A few of you dropped off presents for her, which was so nice for her. Anthony, Annissa, Evan, and Ruth came to see her and surprised her by bringing Luna and other gifts. I don’t know who was happier, Karol or Luna! Luna jumped up on her wheelchair and licked her face and snuggled up next to her. It was a great present! Karol has to stay on the hospital property, so we had the van warm and we hung out inside it with Luna, we ate birthday cake and spent over an hour together. It made Karol’s day. She enjoyed every message sent to her, she feels very loved in it all. Her day started with speech therapy and she did really well. Saying many words, and dome phrases. There is definitely small improvements for her. She also had two, sessions of OT, concentrating on her shoulder and arm movements, she finished by walking with the cane about 100 feet with no help. She will be happy to get back to the more intense therapy tomorrow through Wednesday, as it provides bigger strides in her healing. She is very, very ready to get out of the hospital as it is pretty boring most of the day. She is counting down the days to go home.
12-20-2020 – Post #36
Happy Birthday, Karol! Today is Karol’s 50th birthday, (also, her best friend Kit’s 50th birthday, happy birthday Kit!) This typically would be one big celebration with lots of friends and family gathered together. We know the virus eliminates that type of celebration, and being in the Bellin Hospital Therapy Center, it makes it even more isolated. But the kids will come to see her and celebrate just a little!
Yesterday was a day off from therapies. We spent time watching movies, tv, and working on the speech. We walked over to the hospital and had Chai tea in the cafeteria and watched more tv. It was a quiet, relaxing day.
Later in the afternoon she became sad for a while and cried. She wants to get out of the hospital and be home. She misses the kids and everyone at Camp Daniel. She leaned up against me and I hugged her for 15 minutes while she cried. I know she is grieving life changes because of this. The fear of not being able to talk is an ever-present worry. I encourage her a lot, to look at how much she has healed in the last 6 weeks, to stay thankful for life, and all the love we are experiencing. But, it is a good part of our journey to grieve the things lost. It is hard, yet still good.
I have spent time during this, thinking about my grandma, I was very close to her, she was an important person in my life who spoke much wisdom and loved her family dearly. She never smoked or drank in her life, yet she unbelievably developed throat cancer in the early 1970s. She had her larynx removed because of it. It took time but she learned to communicate in new ways. But she had to grieve not being able to sing in the church choir anymore, not being able to speak in a typical way and the fear of cancer itself. She lived a long and amazing life after her cancer, but she had to journey through some hard times as she did. Her faith in God never wavered, and her deep love for her family grew stronger. So I focus on her life as an example of how a left turn can bring change, maybe some grieving, but can highly affect the lives of others. I believe Karol will experience a version of this, and will come through the dark woods of this road in a new, unexpected way. Do I fear it, yes, very much. The unknown is scary, but scary does not mean bad, it just means life is changing. So I know there will be days ahead when we will bury our heads in each other’s arms, and the arms of our family and friends, to cry. But the love that allows for that to happen will heal us all in incredible ways. We love all of you so much and thank you for loving us.
12-19-2020 – Post #35
Karol worked very hard through her therapies yesterday. She began with speech and was talking pretty good for her. Saying some words, and reading a few words. She is beginning to say some simple words and phrases. It is a lot of strain on her brain to try to say words, she knows what she desires to say but it typically, just won’t come out. once she gets stuck it becomes really hard to “try harder” She is learning to stop, reset her brain and then try again. The brain is so interesting, how it works or doesn’t at times. Karol’s rehab is mostly about reconnecting the pathways in her brain that were damaged by the stroke. The stroke was centered right in the center of her language. So the reconnecting those pathways is hard and will take longer than the physical. Much of what she does is try to name things she knows, and say things she has said often in everyday life. She practices the alphabet and counting, days of the week and the months. She works towards saying the kid’s names and our last name. All of it is hard and taxes her brain. She gets very mildly frustrated at times, typically when she tries to communicate a need or want that has no context. After being together for 34 years, we have the ability to communicate in many ways and speech is the least of these at the moment, but we know very slowly that will continue to change. She continues to
work on walking, balancing, stepping up and down. She also is making strides in her shoulder movement, which then translates to more movements in her arm and hand.
I went home last night to wash my clothes and see my mom and dad. I also worked with Anthony to figure out how to fabricate the grab bar for around the toilet. He will make that this week and have installed for Thursday’s homecoming. We also got rid of some rugs, moved furniture a bit to give her room. The kids and the guys upstairs have been amazing in our absence. Taking care of everything on the grounds and the gift shop.
12-18-2020 – Post #35
Karol’s therapies were nicely spread out yesterday. Starting with speech therapy in the morning. She did great, she is getting a lot of the letter sounds down, she struggles with all the vowels yet. The therapist has been using singing as a way to get words out easier, she sang happy birthday all the way through twice. She also sang the abc’s getting most of them correct. It is a good way to help her brain reconnect its pathways. She did really well in physical therapy. Walking is getting easier. They put a brace on her ankle and it really made a big difference. her ankle stays straight and it gives her the opportunity to work even harder on other parts of her walking. She worked on standing up with help from her hands and then sitting, she did amazing with that. In OT they worked on her shoulder strength and doing everyday tasks such as opening cupboards drawers and shutting them, and raising a cup to her mouth. The afternoon brought more working on her arm, shoulder, and hands, helping them move more freely. In her last PT time she worked out on the therapy table on strengthening her legs, ankles, feet and hips. She finished the time by quite triumphantly, by walking from the therapy gym all the way to the chair in her room well over 250 feet! She was winded and sweating when she finished. We watched a documentary on Disney Imagineering after that and she ate a big supper. She was content and happy in bed when I left, and watching a Christmas show.
The kids are getting ready for Karol to come home for Christmas. They are finishing decorating our home and theirs. Anthony and I began talking through changes to our home as far as grab bars, flooring, and such to make sure Karol has all she needs to be safe and able to get around our home. When we built our log home we made it accessible. Upstairs for the residents and interns, and downstairs where we live. That makes moving home much easier! The kids and my mom were able to come to see Karol on Tuesday, it was great for them and Karol. Annissa painted her mom’s nails and everyone had time to talk and laugh together, which was healing for all of us. I cannot fathom how anyone could go through such a time without the love and care of a family. We are blessed beyond words that God has given us the family He has. It is the greatest gift on earth, especially at Christmas!
12-17-2020 – Post #34
Karol worked incredibly hard through the morning therapies. She started with PT and worked on walking with her cane, standing and sitting out of her wheelchair, and getting better movement in her knee and ankle. She then worked with OT on her shoulder doing modified push-ups of sorts, with a LOT of help. Starting to be able to bear any weight on her right shoulder has been hard and painful, but she is willing to fight through to get improvement. She can transfer really well from a chair to her wheelchair with the help needed to maintain balance. She finished by walking almost all the way back to her room with her cane and was winded and sweating when she got back! She was completely worn out. From there she had her morning speech Therapy. She was so tired she struggled to say anything or even recognize words. when the brain gets tired from working hard to do physical things it affects speech in that it is hard to get words out of the brain. She finished that session a bit aggravated but was so tired she slept a long hour right till lunch. The afternoon sessions were harder because she was still tired from the hard work of the morning. She was able to work on her shoulder, arm, and wrist a lot through those therapies. Being the middle of the week and how hard she worked, it probably the most fatigue she has experienced. Her speech is still the hardest thing for her to do and process afterward. At this point, it is not as a measurable therapy as say walking. Trying to simplify the words in your head down to a word or a sound is so hard. She can get down about her progress or lack of it she might say, I work hard to encourage her in it. Trying to find the very small changes and growth in it.
Throughout this process of her working and learning to communicate I have thought much about communication. We have so many campers at Camp Daniel who do not speak with a voice or use other techniques such as a sign, picture boards, or computers, and much help from others. I think of past campers like Roger, who had CP and couldn’t communicate in any way, and the pain he experienced from that. While I know Karol is regaining her abilities it certainly will look differently for us communicating. What has meant already and what it will mean in the future is that I must pay much more attention to other things instead of just words. I must look for signs, expressions, and just knowing her in order for us to communicate. This all makes me think a lot about my communication with God. I can pray, in the traditional church type sense of getting on my knees and folding my hands. But that is very narrow to me, and often one-sided. But if I give thought and make habit of looking for signs, expressions, and knowing God of the bible and in my life, it makes real communicating easy, and it becomes two way. That communication becomes a relationship, and that is what God wants from us and for us. So this time of learning new communication will stick with me as I grow in relationship with God and others. If we all work towards communicating and relating to others in a loving way our lives would change dramatically. So pray for Karol and I as we learn to communicate in new and intimate ways in this time.
12-16-2020 – Post #33
Karol’s therapy went great yesterday, she continues to walk better and better. she walked with a cane 180 feet! She is using both legs to step up on a step. Her weight bearing on her right leg is about 75%￼. Her ankle on that side is starting to strengthen, which is typically the last to gain back its movement. Her shoulder and arm continue to improve, at a rate behind her leg, but still moving. She can move it all and improves each day in her ability to move her shoulder, which is so important to her overall upper body movement. She also pedaled the sitting recumbent bike for 10 minutes. She worked with OT yesterday and benched pressed a pole with both arms working. Her arm can now be held away from her body and she can just reach up to touch her nose. Overall she is doing amazing. Speech therapy is coming along. It’s a slower process than the physical stuff. She tires from physical and it is harder to get the speech out.
I spent a lot of time processing going home the last 24 hours. It has not been something I have spent much time thinking about over the last month. But with Dr’s date of December 24th, it brings it into our face! It will be different, it will be hard, it will be challenging. It will help me to forfeit some control, which is always uncomfortable, yet still good. The one thing I know is that there are many, many unknowns! I am ok with not knowing, I know we are supported and loved by our family, friends, and the Camp Daniel community so it truly makes living in the unknown easier. Ultimately our way through this whole journey is together and we will continue together in the changes that are coming in our lives, leadership, and relationships.
Karols going home day is Christmas Eve!!
We met with her care team at 10 am and discussed her therapy here, then outpatient and follow up therapies. We also talked through the continuing care of her Stroke, her Vascular issues, her cardiac issues, and they gave us February as the time for her surgery to put the artificial bone flap back on her skull.
They finished by giving her a release date of December 24th from rehab. This brought many tears!
Yesterday began her 3 hours day therapy regimen. She did amazing and was pretty tired when I left. She had OT help her dress and get ready for the day, and then she worked on taking off lids, pouring water, everyday type tasks she will need while working in her right hand, to the routine. Everything is moving, some joints are stronger and some are just in the beginning stages of waking up. But again the movement all over speaks well for her brain and body’s healing as she rehabs over the next year. She worked with PT on walking in the morning with a cane. She daily is doing better with that, she has strong core strength and walks without support. Her right ankle is still weak, so it wants to turn towards her other foot. She works on concentrating on it as she walks. She also worked on transferring, stepping up and over, she even walked an obstacle course around 4 cones! She worked on movements in her shoulder arm and hands also. She is learning to stretch her right side as 1 month of not using it has allowed it to get tight. She had speech therapy and throughout the day she said some words. The best of those was when I was leaving, I kissed her and said I love you, and she said the same three words back to me!
I went home last night to wash some clothes for both of us, pack some things she needed and spent time with my mom and dad and all the kids. Luna, the dog is still confused and seemingly down without Karol at home. I know it sounds crazy, but she is not the same puppy without Karol home! Ruth and Nis are sending out last-minute orders from the Camp Daniel trading post, and the guys are finishing up some things for high-speed internet across the campus.
I am feeling both incredibly excited to go home and some anxiousness. We go home to a new and different life, which makes things a little scary. The fact that we built our home to be all accessible is a huge blessing as entering, doorways, showers, and grab bars will make life easier as she continues therapy from home. The initial stage of fearing death is a distant memory and now the daily hope of growth from the day before still is with us. But the reality of life lived in a different way becomes very present as we think about home. Living where we work means no escape from what she used to be able to do. While I think we are embracing that, we will have a new not normal to our lives, and like this entire journey, it will take time to catch our breath. It is a blessing to be going home before Christmas. We typically take Christmas to New Years’ off from working on the campus, so we have our typical downtime. Like all of you everything is complicated by the virus. We continue to keep the campus closed to volunteers until things change. We still believe it the most loving way to lead people with disabilities in this time. So, this means if, and when we can open the campus in the spring, we will need a lot of help. As a couple, our roles will change, as I become more hands-on caregiver. We will lead hand in hand together, directing the action as opposed to being in the middle of it. In the end, we will adjust, and become the leaders God wants us to be, better understanding those we know He sent us to love.
12-14-2020 – Post #31
Yesterday was a nice, quiet Sunday! Karol was awake when I arrived and had a good night’s sleep. Her brain swelling continues to diminish. You can easily tell as her head daily becomes more concave where the skull was surgically removed. We worked through the morning on her saying the sounds of letters. She can say about half with much prompting and practice. She copies/writes each letter as she tries to say it also. She did well with her S sounds today repeating the “S” words from her menu such as salad, salt, and soup. She has not made the s sound prior to today. We walked through the hospital again, well I walked and she rode, and sat in the cafeteria and had a diet Pepsi and watched football. It felt good to get out of the room for a while. She fell asleep at 7:30, anticipating the work out ahead this coming week. She is ready to go at it head-on.
The kids got together to decorate our home last night for Christmas! Some version of normal at home is a big deal. Karol always goes all out in decorating for Christmas, it’s our favorite time of the year. So I am happy they keep that going. They sent pictures of them decorating which Karol loved. Trying to find the new not normal is so important for everyone in this strange year!
Staying in a healthy place myself has been important throughout this. I have had three nights of much, much needed 8+ hours of sleep in a row. Exhaustion comes on slowly, and before you know it, the brain is not working as it should! It is easy to neglect my own health in the midst of care and worry about all the trauma of the journey. Being that I am diabetic, though, I must be careful or I pay for it. So I have tried hard to be careful with diet and getting back to regular sleep will help also. My mental health and spiritual
health seem to go hand in hand. My level of trust in God each day gives my mind rest or unrest. I work very hard to trust but, “oh for grace to trust him more”!
12-13-2020 – Post #30
Karol had an amazing and exhausting day yesterday! This is great because the end of most days for us, over the 25 at Camp Daniel, have ended the same… amazing and exhausting. Karol had 3 hours of therapy, and at 7 pm was ready for bed, because she had given all she could for the day. I am so proud of her, she never said no to the push from her therapists. She started the day with a big breakfast then occupational therapy helping her with her first shower in 30 days!! She was all smiles, getting all the adhesive off her body, washing the remaining blood out from the 2 surgeries on her skull and scalp, and just getting clean head to toe was amazing for her. She also worked on standing at the sink again, getting toothpaste on her toothbrush, and other parts of her morning routine. From there she moved right into physical therapy and went to the gym where she walked with a cane and help to balance. She did many exercises related to her legs meant to help her brain to continue to make connections to its moving. She had two more of those sessions in the afternoon and did great in those also. Speech therapy is much harder for her. Physical
push is something she has done every day so it comes more naturally. Not being able to speak is hard. She gets small moments of frustration but keeps at it hard. The therapist feel she is on the right track as she makes almost all the sounds she needs to, and will start connecting the sounds together eventually. I am awed at her attitude and fight, maybe because I would be an old bear if in her situation. But she remains focused, trusting of those helping her, and reveals no attitude of giving up at all. She goes at this much like the Karol every sees at camp, zooming from one task to the next, just working hard. pray she stays in that place throughout this journey.
The last part of our day after dinner for two in our hospital room, I took Karol on a date to wander across the pedway and all-around Bellin Hospital and finally up to the cafeteria for ice cream. It felt good to get out of the room and be alone together in a place we chose to go. It reminded me of our first date 34 years ago in that I felt the same excitement of what the future could be with her. I am thankful to think positive thoughts about the future and to God for giving us that.
I am going to send everyone to another post that is happening on Facebook. Literally, right across the street from us, our friends from Camp, Johannah, and Damon Wenig are in St Vincent ICU with their newly born little Wally. There were extreme complications in the birth process, but God is healing Wally and he makes strides each day. I ask you to check out their Facebook posts, pray and connect with them. Let them know how loved they are!
12-12-2020 – Post #29
Therapy started fast yesterday morning at 8:30 with the first of three evaluations that lasted all morning. She is very comfortable with everyone giving care and doing the therapies, everyone is very very nice. She has slept really well the last two nights with all the quiet and to not have her sleep so often interrupted as in the hospital. She then had three therapy sessions in the afternoon. She used a cane and walked about 150 feet in one shot with it while having the therapist help her with balance. Her right thigh is bearing her weight well. Her right knee and ankle are still loose and want to turn inward. But she did amazing. OT found that she has movement everywhere now, which is amazing! This means she is at a great starting point for therapy in general. He continues to do exercises on her own in the room regularly. By the end of the day, she was exhausted and slept so well. The other great thing was, it was the first day in a month she had no head or back pain! A blessing as she works so hard working it all out. Her speech therapy was more about evaluating in both sessions. To open the therapist ask who I was and she clearly said Tony, it was very cool. Her receptive language is right on,but her expressive language changes throughout each day. It’s interesting to come in each day and physically see her brain’s swelling have gone down a little each day. Her head is beginning to be concave which is great. She will have therapy this morning and again in the afternoon and then Sundays are off days here where she can relax and watch football!
I was able to go home last night. It was a tearful reunion with my mom and dad and the guys upstairs. I know from growing up with Daniels’s health issues, that when trauma hits one in a family, it hits everyone. It was great to sit down in our kitchen and show pictures, talk about all that has happened, and even talk about the foreseeable future. We are truly blessed to live with the crew we do. It was nice to sleep in my own bed, I was do exhausted as when I hit the pillow, I was asleep in seconds. It was my first 8 hour night all month.
I sat down with my dad to talk about our finances last night. I am so overwhelmed with the outpouring of love from so, so many of you. He went over with me all the gifts that have come. In our hardest moments in life, where we cannot support ourselves, we are just so grateful to be so loved in this way. We typically always rely on doing jobs decorating and building to supplement our income, so your help in a time that this isn’t possible and our bills mount from being away from home is a miracle to us. Being in need and vulnerable is so hard, yet it makes it so easy to accept love in ways that is healing in so many ways. We love you all so much and thank you for walking this journey with us, next to us, in front of us, and behind us.
12-11-2020 – Post #28
We made it! We got Karol checked into Bellin Outpatient Therapy last night around 8pm. It was a long, long day. She did amazing on the trip, our minivan hospital room was comfortable for her. She sat up in a seat for the first 4 hours and laid in the makeshift bed that we created with a hospital bed mattress for the rest of the 10+ hour trip. She dealt with some head pain the last 4 hours as having the helmet on and being in a vehicle caused some swelling, which was expected. We were able to meet Karol’s dad at a rest stop in Chicago for a half-hour. It was a tearful and loving time for everyone. I can’t imagine his pain of not being able to see her for this month’s ordeal, it is a helpless feeling. She was happy to hug him and he felt the same. so we checked in at 8 and by 9:30 she had her health history and meds given, we unpacked and she was sleeping. I am thankful to be able to sleep at my nephew Cody and his wife Emily’s house just a few blocks from Bellin. I can be at the facility anytime and can go to all her therapy appointments with her. It is a nice, quiet and small unit and the window has a view of the pedway across Webster Ave. She is ready to get started on the evaluations and therapies this morning.
It was a long and restless night for me before we left. I had much anxiety about the trip. I lay awake at 4am going over, and over, in my mind the terrible possibilities that could arise, one fear leads to the next and then it was 6:30 and time to get ready to go to the hospital. It amazes me how, even in the midst of all that God has shown us in this, how stinking easy it is to get lost in worry and fear. There is a story about a person who is worried and afraid to fly and then goes on his first flight. He doesn’t understand how a plane can fly and worries about the feeling of not being in control, when he lands his wife jokes with him and asked him if the plane held him up in the sky, he said yes, but I never did put my full weight down and that helped! That story resonates with me because so often I will trust enough to get on the plane, yet I have no control or even understanding of what keeps it in the air. I find ways to feel better by having the illusion of control. I desire to be distracted and worry distracts me from God. It also distracts me from the work He has for me. I don’t take the risks for Him like I should when I worry. I typically do what makes me comfortable because I am afraid of discomfort. I know all the bible verses about worry, fear, anxiety, yet I still find myself in the trap so often. I say I trust God but I often do not put my full weight down on God. I have found that the way through this is to recognize that my fear and worry is distrust of God’s plan. The next thing is for me to come to God, face to face, honestly and thankfully so He can show me that He loves me. Finally, I must accept the peace that only He can bring. If I skip these steps I find I look for ways to ways to relieve the fear and anxiety that is about my desires, rather than about God. It doesn’t last and typically brings me to a bad place in the end. I know this is a long paragraph, but I believe it is a big part of the journey through this time for me. I am learning to put my full weight in God’s hand, He can carry me.
Peace… and terror. As this is posted we are all on our way to Green Bay. Karol is ready for the next round, she is fighting hard to walk, talk, and move her hand. She does all the exercises the therapists have asked her to do outside of their work with her. She has the tenacity of a training boxer, she will not quit. I ask for your prayer throughout the day so Karol tolerates the drive, with little pain or effects from the travel. We expect to arrive in Green Bay around 8 pm.
I think we all feel peace by the fact that she is such a fighter and won’t be discouraged in her therapy.
I lay in bed last night and went back to the first few posts right after this happened. I hadn’t read back before. It brought me incredible peace to be able to remember the terror of that first long night’s drive. Fearing her death, scared of never being able to listen to her again, remembering the horror of that 3:30
in the morning phone call. It might sound a bit crazy to feel peace in remembering the terror of it all, but it’s the peace that crashed over me like a wave every time I felt the panic of fear. I mentioned to my good friend James Kocian early that morning that I was feeling waves of terror and waves of peace and a short time later he sent me an incredible song he wrote and recorded. It has helped me through this as a prayer when I haven’t had words to pray. I hope it helps you just the same. this is exactly the text he sent:
“I just wrote this for you
I hope it helps” – James Kocian
I feel waves of peace and waves of terror
I feel waves of hope and waves of despair
I feel waves of faith and waves of doubt
I feel wave after wave of ups and downs
Be me Stable in the wavering
Be my Shelter in this storm
Be my Steady in the great unknown
My Healer in the torn
Be my Comfort in the loneliness
The Hands that hold me close
Be the Voice that speaks life to my dry bones
“Karol is getting more mobility each day, She has walked 2 long walks with the therapist yesterday. She walked 60 feet, with little help except for balance! She stood at the sink to wash her face and brush her teeth. The rest of our day was spent watching movies, making phone calls to insurance, and once again waiting to hear back about the exact time transport will happen. It appears we will leave tomorrow morning! She continues to have some issues swallowing, she was downgraded to drinking nectar thick drinks as opposed to honey thick. But still aspirates regular water. Her brain swelling continues to go down, the change is visible even just looking at her. She has been working hard doing shoulder, arm, leg, and ankle exercises the therapists have given her. We also practiced talking throughout the day, she is able to say her name with a cue somewhat regular! She also writes a lot and on occasion will spell her name. She is very ready to get on with therapy to see some healing.
When I was a kid, and still now, I loved watching Christmas shows. I always like the claymation one called Santa Claus is coming to town. It featured a song that said:
“Put one foot in front of the other
And soon you’ll be walking ‘cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door”
“If you want to change your direction
If your time of life is hard
Well don’t be the rule, be the exception
A good way to start is to stand”
It is a song that I hear in my head often. It really reflects much of our lives, small steps, moving ahead slowly as God allows. I think back 25 years ago to starting Camp Daniel, with my mom and dad at our side. We knew God was leading, it was scary, but we were surrounded by the love of family and friends. We have experienced doubts and failures and faith and wins. We have stayed focused on each day with an eye on God’s plan much of the time. It’s been hard and rewarding, or as we often say at Camp Daniel it’s been “Horribly Wonderful”! I see this seasons journey much the same, we don’t really like it, but its the road God has us on so we hold on to
him, putting one foot in front of the other and soon she will be walking out the door!
Pray for us as we leave the hospital At 7 am tomorrow, we love you all and thank you for walking through this right at our sides!”
12-8-2020 – Post #25
“The great news is that Karol has been accepted into inpatient rehab therapy through Bellin hospital in Green Bay! We now have final approval from insurance which includes medical transport! We should be coming back as early as this tomorrow or as late as Thursday. The other good news is that Bellin is the only rehab center that allows a visitor! Karol and I have talked a lot about the fact that she would be alone in the center for the time she was there. She has been ok with it knowing how important the therapy is to her mind and body’s healing.
During this time of planning and picking a place to go to therapy, we have had help. We met Pam, through Facebook, who is connected to Living Hope Church, where my uncle Jerry was pastor, in Green Bay and Cornerstone church, where my parents attend. She is a physical therapist at the Bellin facility. She has been a help with her guidance in texts to me and as an advocate to help get Karol accepted. One of Pam’s co-workers is Wendy who has been a daily help to amass Karol’s file to get her in. She has been so caring towards us! We are thankful to God for this opportunity and the help we are receiving on every front.
Yesterday was another very quiet day. Karol is making little steps ahead each day. Her right leg continues to work better and better, she is bearing some weight on it. She is moving her right shoulder, which is a big deal as it affects her so much. She battles some head pain and neck pain.
Most of our time is spent waiting, waiting on healing, rewiring circuits in her brain, on insurance decisions and doctors’ orders. But waiting on Father God is an honor, He, like my own dad, has always worked out in front… loving us, protecting us, crying with us, and making a way for us. We are so, so thankful for all of your love, prayers, and support as we continue to journey.”
“Yesterday afternoon was also a very quiet time. Speech therapy came in for close to an hour to work with her and then give an evaluation to be sent to the Bellin rehab therapy dr. The speech therapist was enamored with her abilities. She kept using the word unusual. I have a notebook that Karol works on writing in. It is filled with pages from the last week of beautiful penmanship but random letters that are not words. but yesterday she began writing things that made sense. she wrote her own name and also our last name. she wrote my name and the kid’s name. She also wrote our address. this was in between a lot of letters and words that did not make sense. If draw a shape she can copy it. She says a word here and there that is identifiable and makes sense in our communicating. So the speech therapist says she is beginning to start building connections in her brain and will do well with coming intensive therapy. Her right leg is a tiny bit stronger each day as well as her right hand. All these things continue to bring so much hope that her therapy will bring more changes. She was happy all day today with no frustration. We Facetimed with the kids for a half-hour and she really enjoyed that so much again. We spent most of the day watching a Netflix series she has liked. We look forward to tomorrow to hear from Bellin to know if she will get accepted. Please continue to pray that she does.
We took some time also to read the many, many comments on Facebook, I think we are both awed by all the love and care. More than 1700 of you have viewed her video of walking! We have continued to hear from people we have not seen in many, many years. We couldn’t be more grateful for those of you who have given us generous financial gifts and have sent cards, gift cards, and gifts. Our kids will be forever changed in that the constant message of community I share is very real right now. They see how those you love and love you, are with you in times of trouble.
I have relived my growing up years over and over as I have sat in this hospital room. I think about the fear, pain, and sadness when my brother Daniel would experience the extreme health issues of muscular dystrophy. How he would so often end up in Children’s Hospital in Chicago. As I remember those times I think of all the hard times, but I also think about the beautiful and loving times in the hospital, as a family. We never experienced a shortage of love, we always knew people were praying, and family and friends supported us. Of the many things that will come from this, I know my kids will gain a perspective of life and love like never before. Thank you all, for the community we are, we love you.”
“Yesterday became a very quiet day. After an emotional morning and then some physical and occupational therapy, we watched the amazing movie “Crip Camp” and then she napped. The therapists had her working sitting down and standing up. They had her put on her sweat pants and socks and helped her walk to the bathroom to wash her face. They did some stretching and then evaluating. They then sent their report off to Bellin, to add to her intake file for Monday. they feel she will benefit greatly from the intensive therapy she would get there. Tomorrow we hope the speech therapist comes to make her evaluation which will be the final piece of the intake file. She is saying the few words she does very clearly now, all foundational for the intensive therapy she will get. She slept hard last night according to the nurses and ate a big breakfast this morning. When I came in she was wide awake and ready to use the bathroom. She even wanted to watch a movie after breakfast. It’s been a Sunday morning much like at home for the last 8 months, resting, relaxing watching tv together. The only difference being we took time to look back at pictures of the last 3 plus weeks and I told her the story about what has happened to her brain. It was good to see the visual evidence of her journey, it helped her understand in a way words can’t. Thank you Pam for that amazing advice to take pictures…so powerful to help her and me!
I awoke this morning and looked at a few texts. I also looked at Facebook, the first post was from an old friend named Jonathan Marchant. He gave me a message needed badly this morning. He shared some thoughts from Luke 7:20-23. I have shortened his words:
“Even John the Baptist had times where he didn’t understand why the things in his life were happening the way they were. He was stressed out, and probably had some doubt and confusion building in his mind. Jesus doesn’t make any excuses or apologies for confusing the guy. He just reminds him to think about the things he has seen and heard.
people can become offended with God. It’s a real thing that happens. It’s much better to hold onto what you’ve learned than to give up and doubt. Reality belongs to God, and He does what is perfect even when we don’t agree with it or understand it. Don’t give in to your doubt and impatience; there is a blessing reserved for everyone who can endure a tough situation like John’s and come out of it without being offended with God.”
I think his thoughts sum up much of how I am feeling, or maybe what I don’t want to feel on the other end of this. I want to have more trust in God’s plan, I want to continue to have a story that shows God’s love. What is happening is hard and scary right now, but our lives tell me something different, that even though it is scary, I desire God’s blessing. I look forward to sharing the good news of Karol’s next move!”
“Karol had another good day working with her physical therapists. She walked down the hallway about 30 feet, with no grab bar and some help from the therapists. Her right leg is getting stronger and she is having more movement in her ankle. They worked with her right hand and arm as it moves just a bit more, they also felt movement in her shoulder which is a big deal! Her speech is the same, she tries but few words will come. Her therapists are excited to work with her every day as she will try anything they ask and there is consistent improvement. Our next big hurdle is still getting into rehab therapy.
Bellin asked for one more physical, occupational, and speech therapy assessment this weekend for them to now make a decision on Monday. Our social worker here at this hospital is not a good advocate for her, I believe she is slowing the process down. I continue to advocate for her here with doctors here. Each day I also have stayed in contact with her intake worker at Bellin in Green Bay, who is wonderful to work with, to try and stay on top of things. So we ask you to continue to pray over the next 3 days that it comes together.
I work very hard at staying patient and trusting that this is happening at God’s pace. It is interesting thinking back to the hourly, daily, and weekly highs and lows that affect our emotions as we journey through this. Today, Karol is having a very hard day emotionally. She is frustrated that she cannot talk or write to communicate. She is sad that she cannot freely move. I believe she also is thinking, about the future, and has worries. She has cried a number of times this morning, in her frustration. I try so hard to understand what she is trying to communicate. I contemplate if I should try to be stoic and show her no worry, but I decide the only loving thing to do is to cry with her. I feel the same as she does, I am sad because she cannot talk, or move. I worry about the future. I know in my heart God has a plan that is right for us, and those we love. So we feel all the feelings that come but underneath those feelings, we have hope and trust in God’s guiding us through these hard things. We thank all of you for your prayers and love through this and as we journey. We love you all!”
“Karol had a good day yesterday despite a bad pain in her head for most of the day. She has continued to try and try to talk. She is saying na na na na in place of words. in the afternoon she began to say “Ya” appropriately instead of shaking her head yes. While her Physical therapists were working with her they asked her name and she said “Karol”!!!
It was an amazing moment. She said it one more time later that afternoon when a Dr asked her name. She also finished the day by saying “okay” when I kissed her goodnight before I left and said have sweet dreams.
She had physical therapy late in the afternoon and improved even from the day before, she walked 50 feet down the hallway holding the railing and with very minimal help from the therapists. She bears about 40% of her weight on her right leg, and has gained some hip strength, but still struggles with balance. She also is gaining more back in her right hand, she is moving her fingers a bit and can resist a push on it a little. All these things are great progress and make her ready to keep working in therapy. It also gives us excited for her to move on to rehab therapy as it should help her quite a bit. We are wIting today to hear from the intake worker for Bellin Rehab in GreenBay. They should make a decision today and then we can get a date to come home!! Pray with us that they take her in. again I finish by praising the nurses here, they have been amazing, loving, and caring to Karol in a beautiful way.
The kids went back to their Auntie Janice’s to help her finish up moving into her new home. She lives about 35 minutes from here. We all plan to go there tomorrow night for supper with her. They are all doing well. They took some time to walk through the streets of Lexington yesterday and after they picked me up they took me to an original plantation home and farm and also to a few historic sites around Lexington. It felt good to get outside and walk.
It has been a very busy morning here with speech therapists, physical therapists, and many Drs coming in and out. That is why this is late coming out! Please continue to pray, we love you all.”
“Karol had a good day yesterday without much pain and awake for most of the day! She ate pretty well for the first and even watched the football game with me. She had a great 45-minute session with physical and occupational therapists. She sat on a real toilet for the first time, then was helped to stand at the sink to wash her hands and face. Next, she went down the hallway to the grab bar and was helped to walk. They asked her to go 12 feet but she walked all the way to where I was standing almost 24 feet away. She can swing her leg, but still only bear about 10% of her weight on it. they taped her shoulder with kinesiology tape to keep her shoulder in place, it seemed to help much. They asked for me to bring her shoes for Friday’s session. Overall her therapists where thrilled with her progress! This morning they pulled the tube out of her nose that she was originally where she was fed from and then took her medicine through. She was very relieved to get that tube out! She is now eating well, as long as I bring in food from home. She likes greek yogurt and oatmeal with berries and fruit, and any pasta that Nis makes. She is now swallowing her own medication. She continues to try to talk, she is now getting out more than noises. She is feeling less frustrated about not being able to talk, we have worked hard at trying to communicate in the ways she can.
The kids are doing well, they have been at the house working on sewing patches on hats and caps for Camp Daniels online store. It brings me a lot of happiness that the four of them get along so well.
I have been given a lot of praise as I have posted, for being vulnerable. It keeps being called a gift, but I don’t know if I agree with that. I have always believed that in order to connect we have to be willing to not worry about who we think we should be, in order to be who we are. I also believe we are born wired for strife and struggles, so If we live with our struggles out in the open, it becomes a lot easier to receive the love and help we need to get through them. I think like many things it is a choice, a choice between vulnerability and shame. Shame creates isolation, vulnerability creates connection, it should be an easy choice for us all. I do realize it is a bit more complicated than this, but I believe with all my heart that in the community we can help each other be more vulnerable. It is in a connection that love can grow and heal. It truly is what Karol and I are experiencing right now. I urge all of us to help each other because then the real gift comes in the form of love.”
12-2-2020 – Post #19
Yesterday Karol experienced more movement in her right hand and fingers which were great.
But she did not sleep well the night before and still was recovering from the fatigue of her therapy the day before. She had the 100+ staples where removed from her scalp. She spent the day in bed, she was not even interested in getting to the chair. She will experience days like this for awhile, as fatigue, pain and trauma to her brain will be part of the recovery. She spent alot of time attempting to talk, but cannot make words. She would get frustrated a bit but would not stop trying. We practiced singing her abc’s and she did better as the day went on with singing some of the letters. The neurologist said singing words sometimes can come before talking words. We worked on simple sign language that will help her when she gets to th rehabilitation therapy center, where I will not be allowed to be with her for the 7-10 day period she will be there. I talk to her about the process, and she understands she will be alone there and understands the importance of the 3 hours of therapy she will receive each day. It brings some comfort to me that she is ok with it. It is a far harder thing for me to be ok with it, as I am her interpreter, advocate and coach right now.
I have stated in an earlier entry that I believe in the concept that you move to where you look, or focus. But the step past that is action and love. This morning I have been in a bad place, trying to get help with getting Karol into rehab. I have been unable to get help from those in the social work dept. that I need help from. Once again help came in the form of a totally unexpected person.
The janitor, Yolanda, cleans our room every day, and walked in on my moment of frustration on the phone with the social worker. I hung up, sat down and when I looked at her, I felt like I should tell her my problem. My first thought was no, she is just the janitor…how can she help. But almost immediately I just blurted out what was happening to her. She told me a story about her mother and 2 years ago she went to Georgia to help her mom as she had a stroke. She talked about a situation much
like ours, only her mom is over 80 years old. She said she understood everything I needed would help me get the information, documents, and signatures I need to do this. She would get her daughter to help her to. She was comforting, loving and willing to help us. The kicker was, she finished cleaning our room and before she left she turned and said “God told you to talk to me, didn’t he?” You already know how I reacted to that! I am again awed, God has this all. I am learning to
listen like never before. I can stress, worry and fight, its ok, God gets me right where he wants me, He is just waiting for me to listen and then take action and be loving.”
11-30-2020 – Post #18
“Yesterday brought a little more progression in Karol’s ability to lift up her leg. She sat in a chair and pulled her legs up cross-legged in it. She is very unsteady still, as her balance is way off, so sitting up means she needs to have a hand to stay up. She moved her right hand, with her left hand throughout the day; almost like she is expecting it to wake up!
She experienced some mild frustration with her inability to talk. She tries but has no words. She gets a wrinkle between her eyebrows as the precursor of getting frustrated. I lean in close snd remind her that we are in this for the long haul and to not expect more than her brain is ready to give. She then pulls back from her frustration. I remind her many times throughout the day that I am with her through all of this, and together we will work through it. She likes that idea and responds with a nice touch and her beautiful half-smile. We are working hard at communicating, and learning her signs for the things she needs or wants. We made it through a ten minute time of communicating last night to figure out she wanted long socks. We found knee-high, purple compression socks that she loved. while she can now eat, she still does not eat enough to sustain her. So she will keep the tube in her nose to give her needed nutrients and her medication through. Yesterday the nurses got her up to use a toileting chair, not a big deal to us, but huge for her. She needed much support to sit on it, but she was happy to be on it. It is just something else that gives her time out of the bed, moving and that helps her in countless ways right now. We watched Dr. Doolittle yesterday morning together, she watched almost all of it, which is great that she is getting more and more able to concentrate on something for a longer period. Overall I would say she is doing great, moving forward very slowly and staying g
Anthony and Evan came back last night. Nis was very happy. We had a nice dinner from a gift card that was given from an Italian restaurant in town that we ordered in from. they also brought things we needed from home.
I have been enjoying being in the present with Karol. I am thankful that God has brought her this far. I do look forward to her continued healing. I don’t know if I have experienced this much time in one place, without working long and hard hours. I have enjoyed the time down, I never thought I would say that! My hope is to continue this in the future as far as a willingness to have time to rest and then take time to be with others and with God.”
11-29-2020 – Post #17
“He holds our right hand! In the afternoon yesterday saw Karol take a big leap forward. Her nurse was running routine tests such as asking her to give a thumbs up and wiggle her toes, which she has done on her left side, but not on her right side, as it has not moved at all. As the nurse started to put her blanket back in place Karol lifted her right leg about a foot off the bed!!
I was shocked beyond belief, and asked her to do it again, which she did 3 more times! I cried happy tears as this means her brain is rewiring its circuits as her swelling goes down. She was able to lift it higher and higher off the bed as the day went along. This morning she is moving it really well. She is touching her right arm a lot, rubbing it, moving it with her left, this something she had not been doing until today. She has been trying to use her voice this morning but is not able to form words. She has experienced some frustration over not being able to get words out, but it’s minimal.
Anthony and Evan are on their way back here today. They spent the week getting caught up on jobs on the campus and making sure the guys have things to do over the next week. Annissa is looking forward to Evan being back!
The last few days have been unbelievable as far as Karol’s progress. I try not to get too high in my feelings, as it can be disruptive to our baby steps way of living right now. I continue to keep the scale weighted on the side of feeling peace by trusting in God’s plan. Fear is a given, thoughts can get out of control, distrust lurks around every corner, but I choose to trust God, and work each day to take his hand as he guides me down the path He knows is best. Each morning when I walk into Karol’s room, she immediately grabs my hand, this is my daily reminder to reach for God. I know at this moment she relies on me to take God’s hand, so it is doubly important. I am reminded throughout this that God says in Isaiah, He holds our “right” hand, we shouldn’t fear, He will help us. Being in need is often not comfortable, but it keeps is holding His hand!”
11-28-2020 – Post #16
“Focus on where we desire to walk – Karol passed her x-ray swallowing test!! She has been able to drink thick lemon water. She is very happy because she also can now eat. she had half a muffin, 2 hashbrowns nuggets, a spoonful of eggs, and a little oatmeal. they will leave the tube that has been feeding her for a bit until she can eat enough to give her nutritionally what she needs. The weekend is quiet here, especially a holiday weekend. The neurologist team came to check her out already this morning, and are happy with her progress. The occupational therapist came in and we worked on communication. We got her a marker and paper and she attempted to write her name, she wrote in beautiful handwriting but the letters were in no order. We will continue to work with her on this.
Annissa and Ruth continue to help us keep our typical family atmosphere. That brings daily comfort to us all. We still have supper together and talk about Karol’s day. There are less tears now and more smiles!
I am working towards being thankful each day for the very small changes towards Karol’s health. I am turning a corner from fear to anticipation of growth and healing. I
know it may sound like the logical order of things. But as I have helped lead others through the hard circumstance of life I have often talked of how our focus is the place we tend to move towards. That if we focus on fear or pain, very often we move down that path that can bring more. If we focus on healing and love than we move down the road towards more of it. Today that reality is my truth. I have lived it out in the ministry I do, but now it can be intertwined with the ministry and my life and I see good things ahead. The circumstance can still scare me, but focus on God’s love will keep me stepping forward.
I love you all so much, thank you for your love and prayers; Karol has been healing in them and I have to!”
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.”