Well Billy there is something about the phone bleeping late at night, especially in our family……………….it normally means there is something wrong!!! So when the phone bleeped a little while ago, it was an email from you to ask us to write our thoughts on your blog. I have tried to go back to sleep, but it has failed me, hence here I am at 2.30am typing this, and hoping I do you justice! The reality is that 8 weeks ago, on a drive home from Dublin to explain to Rachel and Iarla that you were in a coma, I had put the eulogy together for your funeral! For the first time ever I thought you wouldn’t pull through. I thought ”Enough is Enough”! That little body cannot go through anymore, and your time had come. I recalled a conversation we had many years ago, when you were living with me. You told me about the songs you wanted played at your funeral. I could remember Cannonball by Damian Rice, but couldn’t remember the Paddy Casey song! You have cleared that up this week!!

I was 14 when you were born, and was so thrilled that Mam had asked me to be your Godmother. I thought you would never arrive, and the excitement I felt building up to your birth was just incredible. The reality was quite different. All I recall was Mam going to the hospital to have you, and we were just told we had another brother and nothing else was said all day. The atmosphere in the house was awful, and there was lots of prayers being said. Our Aunt Mary arrived from Galway, so that confirmed that all was not well! Cystic Fibrosis was nothing new to us, as we had been used of Maria being treated for it, so the medications, physio and everything else that goes with CF was just part of normal life for us! To be fair to Mam & Dad, CF never affected our lives. Mam just made it look so easy, and in her practical way, just got on with it. I only ever remember her panicking once. You had got really sick at home one evening. I held you in the passengers’ seat of the car, with your head out the window to help you breathe, while she drove at break-neck speed to Mayo General Hospital. I will never know how any of us made it to the hospital alive! There was panic stations fown there, and I think I picked up a few hints from Mam that night on how to get things done……….. FAST.

I distinctly remember when CF began to rear its ugly head in a different way, and how you became Billy with CF to me! It was your first hospital stay in Mayo General after Mam had died. You were terrified, and I stayed in the hospital with you. The nurses gave me a mattress on the floor, but I slept in the bed beside you. You never cried, but you kept my arm around you all night. I knew there and then, this was going to be a rough ride for everybody. Your little body never stopped shaking all night, both from coughing and from fear(I Think). Since then it’s been a roller coaster. And while you got progressively worse, your stubbornness grew at an unbelievable rate!! From reading about your thoughts as a teenager, I feel there is a lesson to be learnt for all CFs’! Had I known that you were rebelling as much as you were against this disease, and all that it brought with it, I think I would have possibly been harder on you. I say that with trepidation, as I don’t know what its like to actually have CF. However, what I do know is that it was so frustrating to watch you, and know that there were times you hadn’t taken your medication, didn’t do your physio, didn’t eat your lunch!! And while I would be raging at you, I was helpless……… Because I couldn’t do it for you. I read every book imaginable about CF, talked to as many people as I could, so I knew all the information , and had all the theory. What I didn’t have was the ability to make you do it, and it broke my heart. Because I knew the damage that was being done to your lungs could never be undone. But I wasn’t the teenager trying to live a normal life. And having the wild streak in me, similar to yours, I often asked myself “Would I be any different if I was you”? I came to the conclusion that you had to live your life your way, and my best support was to be there for you when it all came apart. Also, this was easier than getting cross. Because Billy it is fucking impossible to get cross at you. I cannot tell you the amount of time that I practised a lecture I was going to give you. But then I would look into your brown eyes, and end up asking you if you wanted a cup of tea!!!! FFS!! I also hated Dr. O’Neill to give out to you, because I always felt that it was a reflection on us and how we looked after you. So everytime we sat in front of him, and your numbers were bad, it felt like a kick in the teeth. I don’t need to say how much I admire and love that man. There was one time though that I honestly thought he was going to send me into labour. I was heavily pregnant with Rachel, and we were sitting in the little room in the Paediatric ward, and he was really disappointed with your weight and lung function. But for some reason he was giving me the lecture instead of you (them brown eyes again)! It took all my will to hold back the tears!

I’m not going to go into your college life. All I will say is that I went into complete denial, and threw a blind eye to everything. I was so thrilled you were getting to experience college life , that you were living independently, and that you were having a ball. Although, every time you got sick and ended up in Mayo General was heart breaking, for us and you!!

You describe that fateful meeting with Professor McElvaney in the Beaumont perfectly. When he said the words “you have 2 years left in your lungs”, for me the room started to spin. My stomach churned, and I will never know how I stopped the tears. For the first time ever I was unable to ask the doctor any questions. I remember calling Caroline form outside the Beaumont, while you were gone for an xray. I remember feeling numb as I repeated the words to her, and her reaction was just one I will never forget. That 3 hour journey home was truly horrendous. The lump never left my throat, and as I type this now the tears are here again. However, it was your words that nigh that I will never forget. When we arrived home to Lisatava, you went into the house, and I went next door to Patricia. I cried and cried, cleaned myself up and came back to you. I sat down opposite you in the conservatory, and said “Well Billy it was a shit day at the office” You looked at me and said, with eyes of steel “No Fucker will tell me when I’m going to die”!!! And we made our plan to meet Jim Egan. Ya see Billy, what I love about you, is that once there’s a plan, you’re happy. Now you’re not great to make the plan, and if you don’t agree with the plan, well we’re all fucked!!

The first meeting with Jim Egan didn’t go according to your plan, and while my heart broke for you that day, I felt this man was going to look after you in more ways than one. I had the utmost trust in him. You however were like a bull coming out of that meeting…….. And understandably so. This was your shot at getting a transplant and in your mind he had shot you down. The second time we went back to meet Jim Egan about you getting on a transplant list, your attitude was totally different. I remember clearly standing in the foyer of Vincents Hospital, and we discussing about which list you wanted to go on. You were very clear that it had to be Newcastle in the UK. While physically you were really sick, and progressively getting worse, your mindset was incredible. I never entertained the thought that this wouldn’t happen. I couldn’t because that would mean negativity, and I have no time for that. This transplant had to happen. We had watched you go through too much.

So when Jim Egan turned around that day and said he was putting you forward for assessment for transplant, it was such a huge step. I never really thought about the enormity of it. To me, it was just another step in the right direction, and a chance at a normal life for you.

That week in Newcastle when you were over to be assessed was horrendous for us, so cannot imagine what it was like for you. Poor Dad was just brilliant at keeping us updated every day, and he seemed to be reassuring us at every stage. When he called on the Friday to say they were putting you on the list, it was just such a relief. A STEP CLOSER!! At this stage we had the oxygen in the house, because you were really struggling, but of course you were too stubborn to use the oxygen. I used to get frightened for you at night -time when you would get into a fit of coughing, and then suddenly there would be silence. Them few seconds before the next cough would come are just chilling. The only way I can describe it, is that it’s similar to bringing home a new born baby, and watching their every breath. Only you weren’t a baby, you were nearly 24 and you were my baby brother!!

The Call

To watch someone you love dearly and cherish struggling to breath, and survive is like living in a bubble, and you learn to live with it and its normal. To anyone reading this, that might seem strange. But honestly Billy, I never looked at you as dying. You were sick, and when things got bad we got in the car and drove to Castlebar or the Beaumont, and you got a little better. And while it was always probably at the back of my mind that things might not work out, I ignored them thoughts, because there’s no room for negativity in my mind. I did talk to Patricia about it once or twice, while under the influence, about my fears and worries, but the following day it would be wiped out, and back to living in the bubble. On the day you got the call for your transplant, I had come home from spending a weekend with Caroline in London. I still get a chill down my spine when I remember the colour of your face that day. Since, I had left you on the Friday(this was Monday), you seemed to have taken a rapid turn downhill. We agreed that you would go into hospital on the Tuesday. But that night the call from the UK came, that was to change all our lives forever. You got the call at 10.30pm, and at 3.30am we were in Newcastle. It was a cold, stormy night, which wasn’t ideal for flying. You never let go of my hand on the flight over, and to this day, Im not sure who was comforting who?!

It was all a bit surreal, and I remember thinking, I only left the UK less than 24 hours ago, and here I am back with Billy, for his transplant??!! At 5 o clock in the morning I was brought out into the corridor and that lovely doctor Gerry Meitre woke me up from the surrealism I was in. They had taken a sample of your sputum and an xray of your lungs. He very bluntly told me that if the transplant didn’t go ahead, you would not live past a few days. Your lungs were finished. Now we had been told from the minute you got the call, and by everyone we had met so far that night, that transplants normally don’t go ahead on the first call. So now in my mind you are really dying. He was asking me to face the one thing I didn’t want! I went back into the room in a complete state of shock, but had to act normal. You asked me what the doctor said. I lied and told you that he had just gone through some basic questions with me. You fell asleep, and I stared at you for the next 4 hours, until 9 am when they told us the transplant would be going ahead. I completely broke down, unable to hold in the tears any longer. And yet again you silenced me with your words……………..you turned to me and said “What’s for me won’t pass me Martina, I’m ready for whatever is ahead”! And at that you were whisked away in a wheelchair. For 9 long hours I walked every corridor in that hospital, prayed every prayer I had ever learnt, and even made some up during the day. 5 hours into the operation they told me that they had real difficulty getting the first lung in, and linked up to your heart. You weren’t making this easy!! Caroline arrived at 6 that evening, I was never as happy to see anyone in my life.

It’s now 4.45am Billy, and I’m up for work in 3 hours so you will have to wait until tomorrow night for my next post, which will go through post-transplant, swine flu, our health service, and of course Brain Injury

Lots of Love, Martina, Your Sister ,Godmother, and General pain in the ass xxxx