While I was on the Ryanair plane to Bremen this morning, I wrote about the blog I’ve been writing over more than two years now, every day.
I decided to delete it.
It was about the issues other people have with me writing about being sad and beaten. Issues other people have when I write about them, even if I don’t name them. Issues people have when I write about people in charge, saying who they are, who say persons with severe brain injury should only be ‘managed’, not treated for their injuries.
I am so infuriated by all this! Because only a heartless person could not cry and be sad at time in the face of these injuries, could not despair faced with the lack of care and therapy, could not become extremely angry at accountants running the health system.
Anyways, I did most of what had to be done in Hamburg this afternoon, sitting now in Tating on my own. When we all should be together.
Love and Peace.
Hospi-Tales 
I’m glad you write truthfully when you’re having bad days Reinhard, otherwise we would feel so alone. And glad you are angry because being angry is better than giving up. I saw Pádraig today and asked Pat what letters there are to be written and offices to be called to start changing things, because we’re right here with you and things will change, they have to. Grá mór ó Báile Áth Cliath
We should all meet some time soon, Sophie, before Christmas, to make a plan and see what needs to be done and how we can distribute things. Looking forward, rather than back. What do you think?
I love your blog. I love the fact that you tell it as it is. Sometimes good, sometimes sad and always honest. I love that Padraig has such a champion in his corner. He deserves no less. Those that love Padraig want your sharing of his story to continue. You are a true leader of change which often comes slowly by changing hearts and minds and that is what you are doing. Please continue.
I am trying to tell it as it is, Grainne, more or less, because telling it how it is and really what I think would probably make me end up in jail:) One thing I never realised is that what we are doing hasn’t been done before (at least this is now what some people are telling us) and that many people are just afraid because they haven’t done any of this and have never been involved in anything like this before. It should, of course, be the ‘normal’ thing to do!
Reinhard, please know that for every person who takes issue, there are legions of us out here quietly listening and digesting everything you write — rooting you all on, and completely disagreeing with the complainers!
Your blog is a gift to us all — so eloquent and heartfelt. You express your humanity with an emotional honesty that may make some people uncomfortable (and that would be their limitation, not yours!). Your blog allows us to keep up with Padraig’s progress and what you are going through. It educates us on issues and bureaucracies that the rest of us (mercifully) haven’t had to deal with first hand. You’ve taken the most catastrophic thing that can befall a person and a family and found the power to express your experience, not with bitterness and ‘shutting down,’ but with positivity and thinking of others. You’re working hard for Padraig’s healing and quality of life while never forgetting others (known and unknown) who might be facing this. I think the blog award proves the majority of us value you and your expressiveness.
Thank you so much for this, Diane! I’ll just have to learn to focus a bit more, not look around that much, not worry so much if not everybody agrees with what I think is the most obvious issue, answer, question… I don’t like ‘tactics’ or ‘politics’ yet that’s apparently how you achieve what you want to achieve. At the same time I know that it is so important to bring people with you, remain calm, and talk reasonably, when, at times, inside I’m shouting:)
Dear Reinhard,
Your blog has achieved a lot of good. It has informed so many people about the situation people with #ABI and their families find themselves in.
You have raised the profile of those with #ABI here in Ireland and beyond. You have established a footprint here online.
Social media and blogs have a ‘power for good’. This presence you have established online is important as it will help as ‘An Saol’ becomes a reality.
Your blog is a testament to Padraig and your family and Padraig’s friends.Is is heartening that the time spent in hospital in Germany with the restrictions and medical interventions then is in the past and that Padraig is at home now and making progress particularly in the area of communication.
With every good wish
Mary and Robert
You have done so much, Mary and Robert, to spread the word about ABI, An Saol, the blog, and we just met one night at the strangest of events, the blog awards, where we felt as if we had been transported onto the wrong planet by some kind of technical fault in a time machine. Thank you for your kind words, and your support. It means the world to me.
All I can say is that although I don’t often comment, I read your blog everydAy, and I admire your honesty, your dedication to your precious child, and your sheer determination to serve him well. I find your blog brings me joy because I find grAtitude for my own precious, healthy 25 year old son, every day. YOU are the best man and the very best father I know. Be well my friend and pay no attention to those who would disparage you or deny your integrity. You have nothing to feel bad about in that realm. I share your joy and your teRms everydAy.
Your advice is what I should follow, Susan: not to pay (too much) attention to people and their views when I know for myself what is right and what is wrong for me. We’re not all the same (thankfully) and will never please everyone – there will always be someone who will disagree with what we do and who we are. Right?
Reinhard, you have established such an eloquent and fluent medium in you blog that you talk directly to us and the whole World about the roller-coaster horror and miracle of Pádraig’s journey from road death to life again, thro’ the Valley and beyond, back to Iona Rd. where he started from, proving the value of his struggle and of your family’s stewardship and steering of his care for best outcome always in spite of the entrenched career ‘CRATs who don’t know the great value of a human life any more, their own included apparently.. We found the future, not they..: they have no urgency anymore, only punch-the-clock routine, for pay, and that’s no basis for any future, only the death of humanity..
I liked what you said, Seos: “We found the future!” So right.
Peace and love to you, Reinhard. A person I greatly admire once said that you always know you are on the right road when you meet plenty of opposition. It takes courage like yours to stand up to it as you do. You are not alone and your story is my story too. I do not have your courage, at least I did not have your courage but the strange thing is your courage is contagious. It has helped me to speak up. You are not alone you three. People have a lot to give. Pádraig has a lot to give. There is a lot wrong that can be fixed and it won’t cost the earth. Small insignificant things can make a huge difference. You have shown us this. You will not be angry for long. May you soon be joyful and see the fruit of your efforts even more.
Highest regards,
Kay
Exactly, Kay. Let’s continue to chip away on those wrongs. Little steps can get you very far, you just have to keep going. You’re also right when you say that there are a lot of us out there and together we’ll make a difference. (You were also right n one other thing: the anger is gone, mostly:)
Keep writing, I don’t know you, but I have found your blog and listened to you on the radio and followed your story for the last while.
You are giving your opinion, you are saying what you hear the experts tell you about your son and how they can or cannot help him, About how he fits into their systems. You are telling your story from your point of view. If readers feel they can identify themselves from what you say and are uncomfortable about how your perceive their words then perhaps they need to work on their message more, so that the next family they encounter hears better. It is not your problem.
The people in charge set the policy, look for the funding, manage the resources. Why not compare the system in two countries and highlight the differences between them. You speak about all the wonderful progress your son has made with the different therapies; it is so great to hear about amazing things, like spelling. His brain cannot help him with walking and talking yet, but still he can spell. Wow. He would not be this far along the road without you and your convictions that there was better out there for him.
Keep going, keep writing. We are listening.
Thank you so much for writing, Mary.
I’ll follow your advice and try not to worry too much about what other people are thinking…
I have been trying to talk to people about the advantages and disadvantages of the different systems we got to know and will continue to do this.
Thank you again for your encouragement!
Reinhard
Your blog is inspiring and as a parent of a young person with ABI it is fantastic to feel you are not alone in this battle for better care and understanding for these fantastic young people . We are four years down the road and by looking outside the box Emma has improved so much . The system gave up and constantly put the defences up but we and certain amazing people always believed more can be achieved and it has been . Your blog is the voice of many .
We need to get the ‘system’ to support us, Hilary, rather than making each step along the way more difficult as it is already. You and Emma are proof of what can be achieved with determination. The more of us speak up the clearer out voice will be heard. This ‘system’ is ours, we pay for it, it’s supposed to serve us. We ‘just’ need to take charge of it!!! Together. Even if it will not all change tomorrow, it cannot remain the way it is. Thank you for being with us, giving us courage and sharing your energy.
Reinhard,I am another one of those silent witnesses, reading every word, feeling your pain and frustrations, being educated on another way to live and cherishing the preciousness of life. Please don´t stop or be swayed in your commitment to write honestly and eloquently about the very real emotional highs and lows that none of us could ever imagine.
Thank you for your encouraging note, Fiona! Never would have thought you were out there following Pádraig’s journey….
Reinhard, just saw this now. You are a modern day hero. What ye are doing for Patrick (while having time to think of other people!) is unbelievable. Don’t let anybody dishearten you. Because I’m just one relative of someone with severe TBI who can tell you that this blog has helped me enormously. Annnnnnnd, it’s a really interesting blog anyway.. I’ve developed an interest in German that I NEVER thought I would have lol
I couldn’t be further away from being a hero, Roisín. The hero is Pádraig. The hero is your relative with the severe TBI. They have decided to keep going under the most difficult circumstances. – We’re just providing some backup. – Reinhard