Not to let worries get in our way

   

Finding a way to stay in the moment

Not to let worries get in our way

 

Focusing on how to make today awesome and learning to be good to ourselves while giving up a life we once knew

           

It has been a while since our last update. It also has been a while since my last entry in English. I apologize in advance for any funny mistakes. I started with the upcoming updates in the summer or late summer of 2021. Thanks for coming back to read our blog about Tobias and his recovery story.

A fight back into life. As parents, we became caregivers, a role I have threatened all my adult life. Hoping I would never become a caregiver. I could not have imagined being one. Life had something else in mind; we don't ask WHY anymore because we have learned that wondering exhausts our brain and the process of wondering has no benefit in our journey.

June/July 2022:

Tobias is taking a nap right now, making it easier for me to write. It still feels that I want to use every minute to move his body, make him practice talking, and so on. I stopped working as soon as it became clear that I would be Tobias's caregiver. This intense caregiving time also interested me in the brain and the world of therapies. I finished a BA in educational science in November 2022. My last research paper of 103 pages taught me to be very curious and find the research I like the best. That made me focus on a study that proved a success in areas that gave me hope.

As we all know, one wisdom leads to another. I tried to tell 

docs what I read, the therapist, and
the nurses. Some were open, while others found me rather exhausting. Tobias turned into my project, which sounds horrible, but sometimes, it did not just feel like it; I also noticed that I treated the situations like work. I had my schedule with Tobias, the conversations with nurses, therapist, and docs. I treated the time with Tobias in the clinic like work. Don't get me wrong, my heart was with Tobias, but my mind was always on alert for anything I could have done better or the people working on Tobias. You can see why I might have been exhausting for some people working there. I looked at Tobias, at times, like an object and wondered how to make it better again.

Back to the topic of faith and what has changed for me. My thoughts wandered around a lot in recent months, and I sometimes wondered about my faith. Faith brings me to the topic "believing in God"; I still believe in God and have more significant reasons to live than what the world gives us. Yes, believe it or not, I do not question the existence of God. Only the perspective has changed. I will explain how it has changed my views of faith. I sometimes wonder if God looks at us the way we, as parents, look at our children or ourselves as we do. As a parent, I often have asked myself, "How can I help my child to be a happy and productive person in society?"

I have asked myself too often: "How can I become the person others want me to be instead of being the person I want to be?" It is painful to think this way; it takes the joy of being with my child and living the moment with my loved ones and me. I understand that God wants us to be the best we can be. Challenges are a part of this journey. I don't like what has happened to Tobias and how his challenge changed his life and that we can not predict his future yet. I am angry. It has changed his life and our family's life. It is not the change I am so sad about; it is the condition he is in and the constant worry about his future. It became so hard.

Nevertheless, it feels heavy because I don't let things be how they are. I needed to understand that predicting the future is not possible. The end has yet to be written. I needed to be reminded that life has many lessons for us to learn. If a lesson does not fit the box, it makes us anxious. I was nervous because I wanted Tobias to live as he had planned. He had just served a mission and was engaged in his studies. He worked at a lab and participated in a study his professor was doing. He had the best time of his young life. He was excited to move into his new apartment with his friends. I moved him in with his boxes just a few days before his brain bleed. You can imagine to what degree Tyler and my brain could not comprehend the tragedy.

Back to the time in the clinic. I needed to heal; that was clear. I searched for many inspirational voices. I did not change my beliefs nor turn my back on what I believed; nevertheless, I needed more. I have listened to monks (https://www.youtube.com/watch?v=dJX8WkKbPf8&ab_channel=PlumVillageApp) and spiritual leaders (https://www.youtube.com/watch?v=3A1yHewhFp8&ab_channel=EckhartTolle), meditated, read the scriptures (https://www.youtube.com/results?search_query=buch+mormon+videos), (https://www.youtube.com/watch?v=HQi9JEOwUzw&ab_channel=ScriptureCentral), and prayed (https://www.youtube.com/watch?v=7-x1lEPeV6Y&ab_channel=GrahamJackson).

I prayed a lot and still do. I still get comfort from controlling the now, but I learned to leave the tomorrow alone. Since life has changed and taught me so many valuable lessons through Tobias, I am trying to listen more to my inner voice. It is a familiar concept the gospel of Christ or other religious principles teach us. Following our ego and knowing better than ourselves means that we are driven by our ego, not by who we are. I pray daily for inspiration. Hoping to have the hope, faith, energy, and physical strength to advocate for Tobias, to be his therapist if needed, and his caring mother and friend.

Living one day at a time has been working better for me, so much better. After many panic attacks and heavy anxieties in recent monthse learned from my mistakes. A mistake is a harsh word when you are under so much stress. It might not be correctly used here. I had to look at how I approached the situation, which meant Tobias' life-changing brain bleed. It has been a learning curve for all of us,,, individually and as a family. I am still trying to figure out how to stay happy and grateful, feel content and hopeful, and live everyday life in such uncertain times. This post was written while we were still in the REHA-Clinic. Fan,tastic,, to be honest, that we could stay there for 8-plus months. Tobias still shows lots of potentials. I, know that, but it is easy to get distracted by negative thoughts. Not every day feels the same; the pain comes and goes, and low energy via energetic vibes from my end. Tobias, the physical pain is sometimes unbearable, and the side effects of the mids turn him at times into a zombie. Medications are tricky; they are excellent and helpful, but they also change a person,, and in the end, you don't understand if the patient is affected by the side effects or by the disability due to a hurt brain. (Since I am correcting this at a much later time... I can tell you that cutting back on meds has changed our lives :)

Signs of success in the process of healing:

I want to write in bullet points some fun facts about Tobias' recovery below and then tell you later about some helpful rehabilitation products and how I have found them. I will also tell you with pictures and videos what we have done and tried and our success so far. I want to show you where arduous labor, devotion, hope, and so on can lead a person in their life. Life is good, folks. Just don't compare the life of others with the life you have. Looking at what we have as a family has made me realize that life is good despite what happened to Tobias. We have to find the treasures under the rubble.

Speaking/Communication:

Tobias is communicating with us. He often uses the exact words like: "Yes, of course" or "not at all". "I am not" Nevertheless, he has been using more words in recent weeks. Since Tobias had surgery about two weeks ago, to have a medications pump implanted,, "Baclofen pump", his life has changed. He has more strength or better energy to talk since fighting with his muscles and movements has become secondary. Correcting myself does not happen in the same form anymore.

Walking/sitting:

This topic is a bit upsetting since Tyler and me, more Tobias, have been putting so much energy into helping him. I am disappointed and sadder than anything else. I have walked around his bed a few times with Tobias, but this seems impossible now. He was walking with the help of a therapist as well during therapy. The medication makes him so relaxed that his tone is completely gone,, and also has muscle strength. Sitting is slowly improving again, which is good news. His right leg is still strong, but not as strong as with his tonus. The plan was to reduce the tonus and build muscles to increase his strength.

We are going to reduce the medication today. The drug, Baclofen, has been reduced to 100 micro mg. Crazy, but Tobias is now able to make a step again. We do have to work on his core once more, and of course, his left site needs a lot of attention to regain strength. We assume that not all parts of his left side are connected to his brain yet. If your bleed is on the right, your left side is affected. Here are some great pieces of information: https://www.stroke.org/en/about-stroke/effects-of-stroke

Having said that, since the medication is just a tiny part of the healing process of a stroke, I did lots of research regarding atomized tools in rehabilitation. Virtual reality has always been an interest of mine. While Tobias stayed at the "U", the University Hospital of Utah, we stayed with my sister-in-law Lisa in SLC. Her son Tyson had some fun VR games. I never played the game, nor did I try the glasses, but to be honest, I should have. I felt guilty having fun in some ways. Our minds are funny when under stress and traumatized. Since I am a trained special ed teacher (in German: Integrative Lerntherapeut F.I.L.) I always wondered what else I could use to make learning more fun for the kids.

I have found a company called https://www.cureosity.de/en/kliniken-und-praxenhttps://www.cureosity.de/en/kliniken-und-praxen.

This company developed a program to support patients like Tobias with more severe or less severe impacts due to a brain injury. totally fell in love with the product. fter many conversations, I got this product as a private person and hopefully support through health insurance. I am so excited; Tobias is a virtu l learner. Being put in a virtual world and using his body and especially seeing himself during stuff as a healthy person should tricker a mirror effect, activate his left side, strengthen his ability to focus, and so on.

Here is a cool study I have found:

https://www.researchgate.net/publication/268789198_A_Mirror_Therapy-Based_Action_Observation_Protocol_to_Improve_Motor_Learning_After_Stroke


It influences healing, connecting, and strengthening the weaker side of your body after a stroke.

Next entry

It has been a while since I wrote he above. A lot has happened. We prepared our departure from the clinic in Brandenburg on the 12th of August 2022. We said our good bye’s to the pbye's who touched our lives in the past 8 months. So much to sa here. I want to wri e more about those people in a later blog entry. In places of life, we will always meet people we appreciate and others we ddon't nevertheless, I learned in the past 12 months that there was for sure not one person who did not have a purpose in my life of 2022. We often d n’t pay cdon'tattention to the people who cross our lives. I ave noticed that many have touched my life in an extraordinary way. So e people made me angry, others made me feel comforted, while others caused so much stress to my wellbeing. As soon as I felt that Tobias did not receive the proper care or we did not have the same therapy goal in mind, I got quickly agitated and felt the need to express it. Mostly, looking back, people were so kind Tobias and brought light in my darkest moments of life.

Perspectives in the day to day living:

The noises of kids who were mentally an physically disabled kept me often awake at night, but at the same time, reminded me of how lucky Tobias is. His injury cannot be looked at with pretty eyes. It is severe. Nevertheless, other young people are able to walk, talk, or sit proper in a wheelchair but might never be able to have an intelligen conversation with their loved ones again. Tobias will and already can in some ways responding to a conversation, sharing his opinion, when comfortable with his surrounding and the people. We are mostly at home, that means around his family, but also his therapist, he got to know. If he disagrees with what has been said, he finds words, even whole sentences to express himself. He follows every conversation, Tobias laughs with us when being funny. That is where we could cry, our Tobias, the way we know him is there, but hold back by the damage to his brain. Neuroplasticity is our hope as well as time - healing needs time.

Aphasia or not:

Tobias has a kind of Aphasia, and speaking is difficult. Still, with lots of new training from very specialized therapists, we hope to improve. We communicate by writing, speaking, and body language. Tobias suffers from Broca-Aphasia, but even Broca-Aphasia is not a perfect diagnosis. No one really wants to put a diagnosis down on paper. We know he can talk and has complete access to his language center because we hear Tobias talk; he can speak complex sentences. This ability is still inconsistent. Whatever he says is definitely accurate to what has been asked or discussed. His speech therapist is excited to work with him and is very hopeful. 

Life challenges in a “double pack”:

My friend L from the clinic, another hero mom, and her daughter are alone with their son/brother. The husband and father of her children got cancer around the same time the boy got bit by a tick in 2021. This bite caused the boy severe brain damage, including a brain bleed. An extended medical story that I don't want to mention in detail. His father died from cancer in January 2022. At the same time, the boy became very ill. After a challenging month, therapy, and reasonable care, the boy has learned to walk. It took him four months to relearn, but still, he could not talk or think complex thoughts. You cannot leave him unattended at any time. The mother lost her husband and, in a way, her son, The daughter lost her father and her brother, too. It seems like challenges in life can always be topped by another more significant challenge. It is crazy how much strength HOPE can give. To the healthy or the sick, happy people, or those who struggle.

My friend could not give up and be her child's caregiver; she must become a warrior like a warrior fighting for justice. Watching her helped me; it droves me forward and sent me creative ideas for caregiving. Her hope made my hope stronger. When I had terrible days, the strength of other caregivers of young people made me realize how lucky I am. I motivate Tobias, show Tobias daily which potential he has, and make him aware of the hope that he never can give up. I make him aware that I trust him and that he got this. I understand that he needs time, lots of time, to heal. We do not know yet what this will look like in 5 years, the "healed product," so to speak, but is this essential? Hope makes the difference, as much as trust, no limits, trust in his ability to heal. Like everyone else with such a traumatic cut into their life, Tobias must be reminded that healing depends on many factors; it is often patience, hard work, trust, and hope. Only hope can teach you the patience you need as a patient and caregiver for someone with a stroke.

The touch of others:

Many wonderful friendships have been formed, and a network has been created. I appreciate life so much more. I also could look at my old me from one year ago. How often did I visit the sick or contact the weak, people in need? I always have been trying, but something else was going on. I don’t feel guilty and always try to be a helpful member of society and my social groups; nevertheless, I often shy away from being there for others because of concerns. What do they look like, those concerns? At times, I am just worried that I could be annoying, thinking too many people had been already visiting, I didn’t know the person that well, and so on. It is crazy how much the focus of life changes when your life goes upside down. How many times did I wish I had done more? Life is life, so there are many opportunities to share the burden of others, so I promised myself I would be less worried and more confident.

I am very proud of Tobias for how much dignity, patience, trust, and love he has held his head high since the day he understood what has happened to him and how much it has impacted him. Today, a therapist asked me if Tobias had ever had suicidal thoughts. That is a good question, but my son, Tobias, has always respected life and loves life. His life has changed, but he has the hope to move forward. Tobias assured me that he does not have suicidal thoughts.

A forgetful mind – a punishment:

Tobias forgets new things – creating a recent or new memory is complex. If the brain thinks, “Not important,” it is gone a few minutes later. The activity, the talk, the movie, the conversation, and the book he is listening to, never made it to the long-term memory. Luckily, he has all his old memories, but Tobias is, so far, only able to create very few new memories. I hope that will change. I was writing this in August 2022 – it is November 2022 now. It has changed; Tobias is slowly able to create new memories - still very few and only with lots of repetition.

In my next blog entry, I will talk about the exercises I do with Tobias and the tools I
use and find helpful. I still feel strongly that Tobias will get out of this, back to school,
and be able to live what he has dreamed of. I might be among the very few people who believe in his healing; others hope and wonder, while others might have given up. He has spent 12 intensive months with him. 8 months in Germany at his bedside at a clinic. I brought him to every therapy and watched him. I fed him every meal as well as he was able to take it. I laughed with Tobias, made him laugh and smile, and forced him to talk this way. All the above with lots of humor. Humor got his interest, and it made him feel alive. Please take a look at this young man below. Crazy how far he has come. (Pictures will be posted above and below the blog entry.)

 

 

 

 

 

 

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