The Last Days of Us

by Caroline Finnerty

  Once again, a part of me started to question my decision; what if I was wrong here? Was there a grain of truth in JP’s accusation; was I digging my heels in just to get back at him? But no… I would never do that to our daughter.

  Just then I was interrupted by the doorbell. I knew it would be Fiona. She was going to look after Robyn while I went to meet Geraldine once again.

  ‘How did you sleep?’ she asked, hugging me tightly as soon as she stepped inside the door.

  I shook my head. ‘Do you ever wish you could just go to bed and never wake up again?’

  ‘Don’t lose hope,’ Fiona said. ‘The judge has to listen to both sides – he wouldn’t be doing his job properly if he didn’t. That’s why he has ordered an independent medical report. And there’s no way JP will be able to get anyone to testify that travelling to Arizona is in Robyn’s best interests.’

  ‘But I’m so scared that he is going to find some batshit-crazy doctor that will, and he’ll twist the whole thing in his favour and what then? Do I have to consent to her being shipped off to the US knowing that it could kill her? And what if this independent medical witness asks for her to be subjected to more tests or they want to examine her, how could I put her through that?’

  ‘You have to have faith in the justice system, the judge will do his due diligence and if there is even a whiff of bullshit, he won’t entertain it, Sarah, he can’t.’

  ‘Yeah,’ I said, sighing, ‘you’re right.’ But secretly I was scared. ‘Have you seen what they’re saying about me?’ I asked her, jerking my elbow towards the TV as she followed me into the living room where the panel were still in deep discussion about Robyn’s case.

  She nodded. ‘I couldn’t avoid it, to be honest.’ She picked up the remote and turned off the TV. ‘Don’t listen to any more, Sarah,’ she urged. ‘They don’t know you, they don’t know what’s really going on. They only know the version that the media is painting to them. Anyone that does know you knows you’re a great mother – the best of the best. Robyn’s medical team are in agreement with you and that says it all.’

  ‘I love you, Fi,’ I said, throwing my arms around her. I was so glad to have her support right then.

  A while later, I kissed Robyn goodbye, then I set off to meet Geraldine. As I drove along the coast road towards Ballsbridge, they were even discussing it on the radio and, although Fiona had warned me not to, I couldn’t help but listen as callers rang in to the show to give their tuppence worth. I listened to their opinions of me and what they would do if Robyn was their daughter. It was torturous to hear them dissecting my life as if they knew my child and were medical experts themselves. Not once was Dr Sharma’s report mentioned or the fact that I had the backing of Robyn’s entire medical team. My dad’s old saying, ‘never let the truth stand in the way of a good story’, was never so apt. I felt my knuckles clench ever tighter around the steering wheel.

  Eventually, when I nearly ploughed into the back of a car that had stopped suddenly in front of me – because I was so enraged by a caller who professed that I was clearly a very selfish woman as any mother worth her salt would do whatever it took to cure their child’s cancer – I had to turn off the radio and drive the rest of the way in silence.

  I pulled up on a side street near Geraldine’s office and parked. Gulls loitered on a nearby rooftop, squawking as I walked down the footpath. I passed a newspaper kiosk, where ink screamed from the front pages at me. The headline from the Irish People read:

  MOTHER DENIES CHILD LIFESAVING TREATMENT

  and the Irish Daily News went with:

  MOTHER REFUSES TREATMENT FOR DYING DAUGHTER

  Even though I knew I shouldn’t look at them, I found myself lifting a copy off the stand and reading through it. I felt hot tears spring into my eyes reading such hurtful, hateful words.

  The parents, who cannot be named for legal reasons to protect the identity of their child, are on opposing sides…

  ‘Love, this isn’t a library.’ The seller stuck his head out through the hatch, interrupting my thoughts. ‘That’ll be two-twenty, please…’ He held out his hand for payment.

  I fumbled in my purse for the change, then I continued on towards Geraldine’s office clutching my newspaper. I climbed the steps and walked into the reception and when I was eventually shown into her office, I went in without saying a word and placed the headline face up on her desk. She took it up and read it.

  ‘This is just one of many,’ I said. ‘I can’t escape it. I’m being portrayed as a monster, like what kind of parent would just let their child die?’

  ‘I did see it on the news last night,’ Geraldine admitted.

  ‘But what they’re saying isn’t true. It’s being twisted – they’re only giving one side of the story. I love her more than anyone will ever be able to put into words.’

  ‘We can seek an injunction against media coverage?’ Geraldine suggested.

  I sat down in the chair opposite her and held my head in my hands. That just felt like getting more entrenched and I was already in far deeper than I ever wanted to be. All these meetings about the case and all the space in my head that was being taken up by these legal proceedings, they were all robbing me of something far greater than my sanity – they were stealing time. I could withstand the vicious portrayal of me by the media, I could deal with the stress, I could deal with the worries for the future, I could even deal with bloody JP, but I could not deal with any more time being stolen away from me, time that I could be spending with Robyn. The whole thing was a mess and what was awful was that while we were scoring legal points, my daughter was growing sicker by the day. ‘No,’ I said, ‘I just want to get this whole thing over with as soon as possible.’

  When I got home that afternoon. I put my bag down quickly and followed Fiona into the living room where Robyn was watching TV.

  ‘How was she?’ I asked, sitting down beside her. I lifted her up onto my knee, drinking her in. ‘Come here, Robby-Roo, I need a cuddle.’

  She smiled her gorgeous smile at me. Even though now only the right side of her face moved, that smile could make my heart explode in my chest. I cradled her in my arms. I breathed in the heavenly smell of velvet-soft skin on the back of her neck combined with the strawberry shampoo that we used on her hair.

  ‘Actually, she’s only just woken up,’ Fiona said. ‘She was asleep for most of the afternoon.’

  My heart sank. She was sleeping so much lately, and I didn’t like to think what this meant for us. We had an appointment with Dr Sharma later that week to get the results on her latest MRI, and although my legal battles were terrifying enough, I was far more petrified of what lay ahead of us when we met him.

  The Irish News Online Edition

  The Daily Opinion

  What happens when parents can’t agree?

  The topic being discussed across dinner tables and at workplace water coolers all over Ireland this week is that of a four-year-old girl who is at the centre of a landmark case that has gripped the country.

  The child, who cannot be named for legal reasons, is suffering from a DIPG (diffuse intrinsic pontine glioma), a rare type of brain tumour usually only found in young children. The child has been given a terminal diagnosis from her medical team in the Dublin children’s hospital and has undergone extensive palliative radiotherapy, which can sometimes give DIPG patients more time, but it was unsuccessful, and it is believed that the child hasn’t long left to live.

  However, the child’s father has found new hope in the form of a clinic in Arizona, where doctors have shown they can extend the lifespan of children with this very disease. Although the treatment is still in its infancy, the father argues that they are seeing good success rates and have even managed to extend the life of several of the patients who have travelled from around the world to be treated there. He believes the team in Arizona are close to a breakthrough in curing this disease and wants his daughter to travel there for urgent treatment. The mother of the child in que
stion will not give her consent and instead wishes the child to live out the short time that she has left in the comfort of her own home surrounded by those who love her. It is believed that the couple, who are estranged, also have an older child.

  The father has issued proceedings seeking a court order to allow him to take his daughter to the US against the wishes of his wife, but Judge Williams has requested the father present medical evidence supporting his application that the clinic in Arizona offers real hope for the child and he has also sought an independent medical witness report. The case has been adjourned for seven days. Nobody was available for comment.

  It’s hard not to empathise with both sides at the heart of this tragic story; it doesn’t get more tense than a case where it’s Mother v. Father and the stakes are your child. Doctors deal with these devastating choices every day, they advise their patients in their expert opinion, but it is only an opinion and ultimately the hard choices are made by loved ones when the patient can’t use their own voice. These are difficult decisions for any loving parent – when do you say stop? When is enough treatment enough? When do you turn off a life support machine? When is it time to switch from curative to palliative care? When does the right to quality of life trump the right to life? This is real life, there is no clear cut-off point or rule book. These are decisions of the heart.

  Nobody can predict how Judge Williams will rule at the upcoming hearing but as this child’s life hangs in the balance, one thing is certain: a nation holds its breath.

  So, we ask the question, would you take any hope offered, no matter how small, or allow your child to die peacefully?

  Comments:

  Rosemary Lavelle: What kind of a mother would give up on her child? The child needs medical treatment to save her life, and it beggars belief that a mother wouldn’t want to do that! I hope she gets the treatment she needs. Poor innocent little girl stuck in the middle of all this madness. She calls herself a mother – she doesn’t know the meaning of unconditional love.

  JuliaMcKeown: Even if it was a 0.00000000000001 per cent chance to save my child, I’d take it.

  MamOf5: A mother knows her child best. Let her spend her final days at home with her family. Leave these people alone, their suffering enough.

  Anonymous: Sum ppl arent fit 2b parents. Karma will get u bitch!

  John Doe: Maybe the mother has good reason. We don’t know the full story. Maybe if it’s the choice between spending her last months in a foreign hospital or in her loving care at home, then she could be right. Nobody has the right to judge without knowing the full facts.

  Mona Lisa: Well if it was my child, I’d take any bit of hope I could get.

  PugLove: Well said @JohnDoe.

  The Real Truth: The dad is right. Big pharma companies hold all the power. The doctors in this country are all corupt, pharma companies are lining there pockets and they don’t want to cure there patients – less €€€ in it for them.

  EDSHEERAN: @The Real Truth *Yawn* More conspiracy theory bullshit.

  Florian Jones: @EDSHEERAN @The Real Truth is right, you should educate yourself on the corruption of big pharma. Read The Great Corporate Secret.

  EDSHEERAN: @Florian Jones Get Real!

  SDP: @EDSHEERAN Uh-oh here come the tinfoil hat brigade …

  Kelly O’Farrell: My Mam had stage 4 cancer and was given no hope by her doctors so she went to a homeopathist and was cured. People need to try alternatives instead of just the traditional treatments. Doctors aren’t always right.

  Liam Donovan: Once again the rights of the mother supersede the rights of the father in this country.

  PhoebeBuffay: @Liam Donovan Says who? The judge hasn’t even made a decision yet!!!!

  KatieG: God Bless them.

  Peter Piper: Having lost a loved one to a brain tumour there has to be a point you stop fighting and accept what is happening. I’ve seen what a brain tumour does, it takes your personality, your movement, everything. Its a sad situation, but let them spend her last days peacefully.

  SomewhereOverTheRainbow: My sister had a brain tumour when she was seven. She is now 34, married with two kids. Give the child the treatment.

  Pigeon: That poor child, her life is in her mother’s hands, a mother who doesn’t love her enough to fight for her. Good luck to her daddy, your in my prayers.

  32

  The rain was teeming down and, on the patio outside, puddles joined together to make increasingly larger ones. It was the kind of summer’s day that, in a previous life, we would have spent holed up inside the house playing board games, but instead, JP, Harry, Robyn and I were all sitting around the table looking awkward. JP was cuddling Robyn on his knee at one end of the table, while I sat beside Harry at the other end.

  JP had contacted me by text message after our court hearing to ask if he could come to see Robyn and I had told him that he was welcome to see her any time he wanted. I meant it; I would never use our daughter as a pawn. Her whole face lit up whenever he came through the door and I knew she needed her dad too. No matter how much I resented him right then, he didn’t deserve to miss out on these last days with her. I could never, and would never, deprive either of them of such a basic need.

  He wouldn’t look me in the eye when I opened the door to him. We never talked – it was as if we were beyond words now. I usually left the house during his visits; sometimes Fiona and I would go for a walk or I’d take Harry for an ice cream or just go to a supermarket and browse the aisles to kill time because I couldn’t bear to be anywhere near him, but on this particular day, the torrential downpour outside had rendered me housebound. Every time I looked at him, my anger burned inside so hard that it felt like a physical pain in my chest. I resented him so much because he didn’t have to do this; he could stop it at any time, and yet he chose to plough on regardless, sending shrapnel flying in his wake. I couldn’t believe that this man I had once loved so much was putting me through hell, but I would keep walking over the hot coals for Robyn if that’s what I had to do.

  We were just days away from our next court hearing where it would be decided whether Robyn should travel to the US like JP desired or whether she would live out her last days peacefully in the comfort of her own home as was my wish. I wasn’t sleeping or eating. My stomach was permanently knotted, anxiety gnawed through me like an earthworm through soil. As I looked across the table at JP, I guessed from the dark circles hanging beneath his eyes, he wasn’t faring much better. What would I do if the judge granted him permission to take Robyn to Arizona? How could I, as her mother, who loved her right down to the marrow of my bones, let her board a flight knowing that a gruelling regime awaited her? I imagined myself running across the tarmac and lying down in front of the plane if that’s what it took to stop JP. Or if he lost, would he be capable of doing something crazy, like snatching her and taking her abroad anyway? These were the worries that kept me awake at night.

  ‘So, how’s school going?’ JP asked Harry, cutting through the quiet.

  ‘S’okay.’

  ‘Only two more weeks until you’re finished for the whole summer,’ I remarked.

  Harry shrugged his shoulders.

  ‘Where are you going on your tour this year?’ JP tried again.

  ‘Urrrrgh,’ Harry groaned eventually, as we continued to drag word after word from him. ‘Why won’t you just talk to each other?’

  ‘Sorry?’

  ‘You both keep talking to me, but you’re not talking to one another and it’s really weird.’

  JP and I shifted awkwardly. I knew that despite our differences neither of us wanted Harry getting upset about what was happening between us.

  ‘Would you like a cuppa?’ I offered JP for Harry’s sake. It was the first time I had spoken directly to him since the day I had learnt about the court proceedings.

  ‘That would be great, thanks,’ he mumbled.

  I stood up from the table, boiled the kettle and began making two mugs of tea.

  ‘A spoonful o
f sugar and a dash of milk,’ I said, putting the mug in front of him when it was made. For as long as I had known JP, he had always drunk his tea the same way.

  ‘Thanks, Sarah.’ He half-smiled at me.

  We both fell quiet again and sat there in charged silence staring at our mugs until Harry sighed heavily. ‘You’re doing it again!’ he cried in frustration. ‘Jeez, you’re both acting so strange, just stop it already and talk to one another!’

  I pushed back my chair and stood up from the table. ‘Look, Robyn needs a bath and I could use a hand,’ I said for the sake of something to do. In recent weeks, as her mobility had declined, bathing Robyn had become a two-person job. Usually, I got Fiona to help me.

  ‘Sure,’ JP said, jumping up after me, relieved to have something to do.

  JP cradled Robyn’s body while I sloshed the water gently around her. She was smiling and I knew she was enjoying the sensation of bathing in the warm water. She couldn’t tell me how her body was feeling, but I hoped it was soothing away any aches or pains that she might have. I couldn’t help but remember the day Robyn was born, JP had offered to give her her first bath because I had been too weak after my caesarean section. With great confidence, he had taken her to the nursery and begun to wash her, until he remembered just how slippery a new baby was in water. He had had to call out to a passing nurse to intervene. An ashen-faced and suitably chastised JP had returned to my bedside afterwards. We had laughed so hard about it at the time.