Day 124 to 128 Crazy Christmas Days Katja/Tobias Post

 

Dear Family and Friends, 

 

Christmas was rather wired as you might have expected. My dad said that he had plenty of very nice Christmas’, one bad one will make no difference. It will teach us to appreciate the next Christmas even more. Mom remembered her Christmas in 2003. She was very ill, down with the flue and strep. It was no fun but the next 18 years and brought many years of joyful Christmas’s. They were just fun and very memorable.  I do want to mention that Dad, Sebastian and Emily with her family came to visit. We went on a nice walk and opened up some presents.

I am not sure how I will talk about this Christmas in the future, will I even remember?  Only time will tell, I guess. I do have issues with sleeping, I had those issues since little, but nevertheless, I got so used to it, that I never thought anything of it. I used to be awake for hours before I was able to rest and sleep. My mom always wanted to address it, but medication was not really an option at my young age. As I got older, the phone and laptop were a good option to stay busy during those hours. No, not really a wise decision but at my age, that is what we do. Sleep is so essential for our health. My mom taught me many lessons. Even though I knew, I did not understand how to address my issue. Since sleeping is a big part of my life now. Not voluntary, but my body just wants to sleep all the time. It is so embarrassing to look at the therapist (PT, OT, Speech…) and then slowly closing my eyes and thrifting off. Mom got a trick; she rubs my chest or shoulder to wake me up. Cassy, my OT in Utah, has taught her this trick and she adapted. The Germans will learn as well how to keep me engaged in my therapies. I am working on it as well and started to move my leg up and down to get it stronger and to stay awake. In theory, the problem of not being able to stay awake for a longer period, could also be the cocktail of medication. The docs are looking at it and I should learn more about it by tomorrow.  My day is pretty active. I have all kinds of therapies. PT, OT, Speech, music therapy is scheduled for next week. Therapies are a bit shorter, but it is fine for now. I am aware of everything, like what is going on around me, I respond to question and communicate with either my arm, leg or with my eyes. Single words I do spit out as well. But not as regular. My muscles in my mouth must have some sort of spasticity. My mom feeds me for all three meals. One feeding takes about an hour or more. It helps me to connect my muscles to my brain. I have a pretty good swallow mechanism and strong cough. I really want to be an active participant, but it is not easy. I want everyone to see that I am very willing, but that it will take a bit more time. I know that people here in this clinic see my potential and willing to help me. It makes me feel content, I do look much better, almost relaxed. My mom is here, basically around the clock. I know it is not as easy for her to be here all the time, but I am grateful. We pray every night together and that also gives me a routine I am too familiar with. I trust in God, that he will do his part to get me out of this. I do feel that my mission on this earth is not completed yet. There is a lot I still have work for and to complete in this life. I don’t know why I had to be ripped out of life in such a brutal way. I do know that I am not unique with my situation, so many people are in similar situations or facing worse traumas. My mom tells me that the moms in this clinic are all Dimond’s. So brave. Looking back, my mother would say, how lucky she feels that she did not have to suffer seeing her children suffer from a young age on. As a parent you expect your child to be perfect and to be perfectly healthy. You dont want your child to suffer, not physically neither mentally. Life is beautiful, but it appears only then when you are able to accept life the way it comes and able to enjoy the little things, nature (I am glad I feel so connected to nature by the way) and understanding what life is all about. I am certain that life has taught us so much already and so many more lessons are waiting to be learned. 

 

Mom takes me in between on walks. Since I love nature and animals. I am in a good place. We meet two very large bunnies on every walk. They are not scared at all. It appears that the two of them are a big part of the little park we walk in. I am sure both bunnies have brought many smiles to the faces of children in the past. I am an adult and still love watching nature. I am happy when I see those old fellows. It gives me a feeling that life is good. Thanks for keeping me in your thoughts. If you want to sent me something ... sent me good thoughts or your prayers for continuous healing and a full recovery ... :)! My next wish on my list is to be fully active in my recovery! It requires something what I have not figured out yet, I believe. 

I am also very grateful for technology. Without FT or other video call options, we would be pretty isolated (due to Covid-19) and going insane. Feel free to give us a ring. If we don't want to talk, we don't pick up. That's how my mom rolls. Don't be shy. We both wish you health, peace, comfort and joy on the simple things in life for 2022. I hope you understand that life is in the now not in the yesterday or in the tomorrow. I wish I would have enjoyed the NOW more than living too much in the present or past. I love what I study (Biotechnology), it is my passion, always has been. Living in the now was not too hard, but then there are all the other parts of life we all wonder. The what if I ... bla, bla, bla .... I should have ... bla, bla, bla .... I think there was a lot in my life I could not see due to that. Well, thanks for reading my blog. THANKS DAD for starting this BLOG. So grateful for my dad and all he has done for me. I miss him a lot. Covid-19 makes it hard to for the sick I am telling you. Only mom or dad can be here. Its really to bad. Nevertheless, he can come twice a week for 2 hours each. Its hard on him, too. 

Thanks for your friendship. 

 

With love, 

 

Tobias and Family