Tags
Tilt table yesterday. Sitting up on the side of the bed today. Of course, with loads of support. The therapists are really doing a great job now that we are able to take over from them the ‘moving into the wheelchair’ task. We are trying to set it up in such a way that they work 
with him in the morning, and us in the afternoon, with Pádraig getting a few hours of a break in between. He keeps eating a bit of yoghourt or finely minced fruit. One of the tough looking (but really nice-inside) nurses keeps looking after us with water and a cold yoghourt. What a relief that is! And such a nice gesture. There are nice people all around us, people we don’t really know, but people who want to help in any way they can.
This morning, apparently, Pádraig needed a bit of oxygen when he was turned onto his side. We were really surprised by that as we had not seen a need for oxygen for weeks. As a consequence, the new and smaller tube for the tracheostomy was not put in today. That was disappointing, but, I am sure, it’ll happen though over the coming days. There is always something, nothing is straight forward, nothing can be planned.
I remember our kids asking us, when they were small, ‘why can’t we be a normal family, just like everybody else’s?’. Why can’t we? Sometimes, I see myself as a ticket controller or a train conductor, walking down they isle of the train, checking people’s tickets, putting a stamp on them, moving on to the next passenger, answering questions about connections, delays, and prices. You start at a certain time, you finish at a certain time and that is it. No change, no stress, everything under control, nothing unpredictable,
I can’t believe this is the summer holidays. (Hamburg school holidays started today.) The days are so full. In the evenings I feel so tired as if I had worked 20 hours and slept 4. Especially over the past 2-3 weeks it has been difficult to maintain a routine and a balance between work and visits and travel. At times I get the feeling that I’m not managing neither of these things particularly well. An acquaintance, working for a US multinational company in Dublin once told me that if you felt like you were on top of your job, you weren’t stretching yourself enough. They had permanent stress built in to their work day. Pre-programmed burn-out. He laughed about it and was proud to be able to manage what others would have considered an impossible work situation that was completely out of his control. – Over the past months, I have felt completely out of control. I have also felt (even more) inadequate on many occasions, asking myself what this was all for, why bother. Have you ever had this feeling? How did you get over it? Did it just go away, or did you do something to get you out of one of these holes?
They say you shouldn’t make drastic changes to your life when drastic things happen to you. I wonder how true that is and when the time for change eventually arrives? When life changes so drastically around you, when what you do is so different from what it was before, would you not have to adjust your life to that new situation?
We won’t go anywhere for holidays this year. No desire. And anyways, I’m saving for Alaska! Right?
Today’s Music Tip
Erich Kästner, Kennst Du das Land wo die Kanonen blühen?, 1928. Yesterday, forty years ago, one of Germany’s best known writers and poets died, Erich Kästner. He was one of the few German writers who staid (and survived) in Germany during the Nazi era although he had the honour of his books being burned publicly by the nazi mob. Most people in Germany would know him for Das fliegende Klassenzimmer, but he also wrote this wonderful poem about a place familiar to many Germans. (Goethe wrote a poem with the similar title: Kennst Du das Land wo die Zitronen blühen? – and Kästner’s poem is a parody on it.) You can find the text here.
What’s hot
Cold yoghourt and cool water
What’s cold
Holidays
The German word/phrase/verse of the day
Hau rein, Mann!
Hospi-Tales 
I think everyone (except perhaps people with delusions of grandeur! 😉 go through times when they feel inadequate and/or not up to the task(s) they have. You have *so* much that you have to do now, that it would be unbelievable if you didn’t feel stretched the max. Especially since you have been juggling all these things for over a year!
I think you are very hard on yourself. When I feel that way, I try to think of how I’d react to a friend in my situation. I’m always so much more understanding and compassionate when it’s someone else. I know no one is perfect and nobody can do everything well at all times… yet I fault myself if _I_ can’t.
Also, I always have to remind myself that so much is outside our control. We can’t change people, places or things. I tend to want to ‘fix’ things and ensure outcomes (despite knowing it’s impossible). One can only do one’s best — showing up, staying engaged and doing one’s best… breathing deeply and trying to stay fluid with whatever is thrown at us. A wise yogi once told me to imagine I was a reed in a fast-flowing river… life throws lots of stuff at us (i.e. the water rapids). Most of it is not at all about us, we just happen to be in the way. So the best we can do is to not take it personally, breathe and connect with others, stay fluid and take it as it comes. (I know, MUCH easier said than done! — did I mention he meditated A LOT?! 🙂 )
So try to see you, as we all do. You are a super-man — a loving father who would do ANYTHING for his children. Who – whilst coping with a devastating personal trauma and life change — is still empathetic enough to think of people who might go through similar situations in the future, and you use your precious time and energy advocating for improvements. You find time to be an activist for change (which itself can be an overwhelming task trying to change bureaucratic red tape and ‘bottom lines’)… on top of being almost constantly at your Padraig’s side, learning new skills to take on as much of his care as you can, being involved in all aspects of his care and healing… and managing at the same time to be a loving, supportive husband and father and son AND holding down a job – let alone one that requires travel. And most of this time — with all these major challenges making constant demands on your time and energy — you manage to keep your sense of curiosity and humour, see the goodness in the world and in the kindnesses of strangers and friends alike, and even find time to write your thoughts and experiences and keep all of us who follow your blog informed and entertained with your observations and musing (and honest feelings). You are the opposite of inadequate. You are an inspiration.
You are doing your best. And your best is pretty damn awesome!
As for: “you shouldn’t make drastic changes to your life when drastic things happen to you,” I agree with you. In this situation the drastic changes in your life required your life to change drastically.
Sending cyberhugs and wishes for good rest for you. Be sure you take care of yourself, too.
What can I say, Diane? This is one of the nicest, wisest, loveliest, cyber hugging kinda messages. You’re a wise yogi yourself, Diane:) I’ll (try to) stay fluid. Breath in. And out. Meditate. A LOT! – Your message really helped. You’d better believe it!
And so say all of us.
Diane: Thank you.
Kay: Yes and so say all of us
Reinhard: As Diane said, what you are doing is truly awesome. Thank you for sharing so much with us, thereby helping us to feel so connected with Padraig and all of you in Hamburg.
Warmest wishes Raphael
Thank you, Raphael – what I find really awesome is how Pádraig keeps going and how he keeps everybody around him motivated by his determination to get better!