Day 113 (Dec 13) - Katja/Tobias post

 Dear Friends and Family,

 

on behalf of Tobias „Happy Third of Advent”, THANK YOU for all your good wishes, good thoughts and prayers. THANK YOU for supporting my parents in this. I am fighting, I promise. My mom came to visit me today which enlightened my day a lot. 

My heart rate, the one my parents get so nervous about, even though the docs told them not to worry to much about it, better to look at my overall behavior of the day. I get uncomfortable with too many blankets, but then it really annoys me, when people take them all off me, because they think that makes me feel more comfortable. They are right of course, but how would you feel to be exposed not knowing what is showing and what is still covered. Everyone has learned that my body cannot handle heat to well. Yes! In the past, I loved it to be wrapped up in many blankets. Just saying. I get it, it is difficult with me. My brain still can’t regulate and operate my body that well. I am trying hard to give my brain signals and a voice, but to be honest it really happens slowly. I have learned a lot about the brain before my brain bleed, I listened to so many TED talks while driving around the country with my family. We talked a lot about the potential of a brain. It gives me hope.  The plasticity gives me hope. It gives me hope that I can heal and restore myself to my very best someday. Dallin, my friend, I hope to restore myself so that I can go with you to the GYM someday again. Gosh, how much I miss those times, how much I miss hanging out with my friends from my mission for our special dinners. Folks, I will be back. In the meantime, I will go along with my therapists. I miss my therapist from the U, too. They were awesome! I was not able to talk to them lots, but hopefully, they were able to read me somehow. All those great nurses and aids. Thank you. It is awkward to be showered by random people I am telling you. Still, they never made it awkward. What can you do, right just staying humble and taking all the help you can get? 

I promise, I am working on getting over this. It’s a marathon and as I have heard … I am not too far into this marathon thing. Today, my mom put some crayons in my hand (stop laughing guys) and asked me to draw a picture. I wish my brain would have let me laugh out loud. It was hard. I was kind of able to draw a circle and a line … it took me a long time and it felt like lifting a 40 lbs. weight. Crazy. My mom was patience and pushed me to draw. She did not stop until I was simply to tiered. You wonder how long it took me to get tiered? Well, 40 minutes later, I felt like finishing a long assay from my good old times at BBIS.

👀💪😎😎

Mom thought it would be fun to use the IPAD as well. She already had downloaded a therapy app. A bit to advance for now, but she decided instead answering the question, I should just klick on YES or NO so that she could understand my ability of reading and understanding a comment. I passed by the way.

I had not eaten all day, just food through my feeding tube. I really do like food, bit it is hard to relearn to eat like an adult. So, I had to take another test in Germany before they let me eat solid food. The doc came in the afternoon to perform another FEES test, I passed my test and can now foods like mashed potatoes. It does take me a long time to eat. Water runs down to fast and mashed potatoes I barely can move to the end of my tongue. Yoghurt is by far my favorite food now, since it has the best consistency. I like it a lot. After the test, mom fed me a yoghurt, moved me around in my bed, massaged my feed … not to forget the oil she uses to keep them smooth … crazy that I must tolerate so much. I do understand that whatever mom and dad do, it is necessary and a sweet act of kindness. I am grateful for all they do. I am trying to show this with my eyes. I became good at it. After the end of the day was, I became really tiered, but I wanted my mom to know how much I appreciate her care. I looked at her and hoped that she was able to feel my love. I fell asleep quickly.  Mom knew. She walked over, kissed me good night and left. 

 

On the way out, she asked the nurse to feed me another yoghurt later, and to brush my teeth if possible. It seems like, that the docs will also perform an MRI later, but I hope to get some sleep in before. 

 

Life is odd. I don’t understand why me, but as my mom always says. Let’s not ask that question, but let’s take one day at the time. Mom is reading a book which has helped her to overcome some of her worries about me and life. The name of the book is: “How to stop worrying and start living” by Dale Carnegie. Mom was telling me about the book and what she has learned today. People who worry get ulcers and the best is to take each day as they come, not to look back and not to life in the future. 

 

I miss all of you, but I know that my family and I are not alone. Thank you!

 

Tobias (I am sure my mom got it right and told you what I had in mind)