Eulogy spoken by Dad (Denis O'Regan) - 6 Jan 2012
Who watches X Factor? My betting is you fall into one of two camps - You're either an avid fan following the stories of each contestant week by week or I know some of you are sitting here thinking it a load of old cods wallop.
Well it doesn't seem that long ago Aisling queued for hours and hours at the Emirates stadium with Mum where the X Factor production machine let 14,000 people into the stadium. The first round consisted of whittling down 14,000 hopefuls to a neat 1,000. If you visit the little table of memorabilia in the refectory afterwards you will see that Aisling was successful in being chosen as one of those 1,000. What was significant and typical of Aisling was that she was adamant that there was to be no mention of her fight with Cystic Fibrosis. She knew that the X Factor system would love to create some schmaltzy tear-jerking story about her but Aisling was never one to play the sympathy vote.
To Aisling Cystic Fibrosis was just an annoying thorn in her side and she didn't want CF to be centre stage - even when we bashed her lungs just before she delighted people with her Irish dancing and then stepped off stage smiling only to put up with prolonged coughing fits from the exertion out of sight.
You will see at the end of your booklets that we have started the Aisling Charitable Trust. Rather than using this as a fund raising channel for Cystic Fibrosis research we felt in the true spirit of Aisling we would pay no heed to this cruel disease and instead plan to encourage young talent with some kind of annual song writing prize at St Edmunds.
Should funds allow - we have also been granted permission to install a bench for walkers to rest in St John's Pelham a lovely peaceful place Aisling and I had a picnic last summer.
So yes even though I'm one of the cynics that found X Factor annoying I found myself watching the last 3 finalists of the American X Factor with Aisling in her room at the London Chest Hospital, Bethnal Green on Thursday 22 December. My plan was to go into work on Friday morning to tie up Easykey bits. We were on day 54 of this her latest admission which had been a roller-coaster ride of good days and really bad days. However she was so determined to get on that transplant list and having undergone most of the tests required for Harefield was still hopeful of her new lease of life.
It was late and I was too tired to drive home safely, so I texted Carol to tell her that I was going to stay the night and grab a mattress and sleep at the foot of Aisling's bed. She had a fairly broken night occasionally coughing through her BiPap mask and at 6:30am the next morning I heard her nebuliser start up - so she was obviously a little tight. She went back to sleep until 8:15 when she woke up struggling to breathe. This was typical of most of the recent mornings where she would face the struggles of getting going for the day and usually brighten up by about 3:00pm.
I asked Aisling if she would like me to work her ribs. She nodded and I sat on the bed behind her firmly squeezing her ribs together on the breath out. Eventually this eased her breathing and Aisling asked me to massage her back and shoulder muscles - apparently according to her she reckoned I was the best at this.
Around 9:00am her breathing became hard work again. Aisling decided she wanted the Physio so I went to get her. I sensed Aisling's disappointment when the new trainee Physio (the only one on duty at the time) entered her room. After performing some percussion on her chest Aisling asked her to stop. Working hard to pull air from the mask she wrote the following note "it's just not moving at all" meaning her sputum. Then she wrote two extremely rare words for Aisling "I'm scared". Personally I hope I don’t offend anyone when I liken this to a Christ-like Gethsemane moment.
I asked her if we should get Pam one of her trusted physios who has nurtured and encouraged her out of many dips before - she nodded.
By the time Pam arrived Aisling had asked us not to touch her, or speak to her but just to be with her. As always, Pam empowered Aisling with choices and she set about her battle plans - Aisling wanted the overnight feed removing from her stomach, she agreed to Intra-venous steroids and a tiny shot of morphine to help her keep calm and focused. So by 10:45 she had the people she most trusted around her, Pam the Physio, Mark the CF nurse, and Sagel her psychologist. Aisling now focussed all her attention on working with Sagel on keeping calm, sat up and propped forward on her elbows and concentrating on breathing.
Carol had been forced to stay at home for a few days with a nasty chest cold - so I texted her to see how she was. I then decided to pop out of the room into the corridor to preserve the calm atmosphere in the room for Aisling and phone Carol to let her know of Aisling's rough morning and our plan of action. Within minutes Mark the CF nurse came out to tell me that Aisling needed me. Whilst trying to finish my conversation with Carol, Mark insisted that Aisling needed me now, so I told Carol I had to go. Sagel told me later that as soon as I left the room Aisling had said to her "I'm dying - what do I do?". Sagel told her that it's OK to die, she then passed out and Mark went to fetch me.
I entered back into the room to find Aisling slumped unconscious onto her front. I sat on the bed next to her and gently stroked her back to which she responded by indicating with a hand gesture to sit her upright.
Aisling looked straight at me with her beautiful eyes which seemed to say "I'm so glad you're here". She pawed at her BiPap mask mouthing the words "off, off"
At this point I thought she had some sputum to spit out but when I removed her mask I could see this was not the case. As I held her in my arms she looked at me, took a couple of gulps as I reassured her saying "It's OK" and with a deep soul touching look that I shall never forget she took one big last breath and passed away - just like that. I told Aisling “It’s over, no more pain” Again for me personally I can’t help thinking of the words of Jesus just before he gave up his life on the cross “It is finished”.
I wanted to share this with you all not for sentimental reasons but to share the privilege Aisling gave me. Aisling was a warrior. Her battle was CF. In all of her 20 years she rarely complained about her lot. And in the last 18 months we have witnessed her immense grit, determination, hope and refusal to give in.
Aisling was also well aware of others taking on that battle along her side:
Abbey - Sister Warrior of True Grit and bridesmaid to be
Chris - the Breastplate of love with your big heart - her hope and her inspiration
Brendan - the Helmet of logic and reason "not emotional at all" according to Aisling yet she knew you loved her
Declan - the piercing sword of humour which lit up any hints of negativity or darkness
Carol - Aisling's Foundation Rock and Queen of Advocacy - woe betide any medic, teacher or any bureaucratic paperwork that stood in her way! Aisling describes you as 'so caring and loving' and she thinks the world of you.
And Dad - not really sure what part I played in the battle - Aisling describes me as a 'bit mental sometimes'! She also said I have an open heart and mind. But to me the most valuable thing she said about both Carol and me is 'she can talk to either of us about anything' and considered us her friends. To me I reckon as parents we did OK.
And even right at the end when the enemy Cystic Fibrosis could have cruelly tortured her - making her suffer for days or even weeks - it seems to me and indeed the medical team were quite astonished - that warrior Aisling was having none of it! With the greatest courage and bravery she took control and decided to throw in the towel when she was ready and on her terms - with exactly the right people around her and in the arms of her dad. No pain, no anguish, no suffering and in fact with a peaceful smile on her face.
Aisling - your amazing courage, tenacity, humour and humility that evidently touches so many people here and even around the world easily qualifies you to possess that certain intangible spirit or charismata – I might even call it the winning X Factor
Aisling, I have no more words for you - where words fail, music can say so much more - so I would like to dedicate this little piece of music to you...