The Gift I couldn’t Keep: Part 4 – The End

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Welcome to my story of me and my daughter, who suffered from Tay Sachs Disease. You can catch up here on:

Part 1, Part 2, Part 3.

**Warning – some people may find some of my words distressing.**

At some point after Amy turned 2, she got her first chest infection. She had a tendency to sound crackly at times so I wasn’t sure when I needed to go to the GP. Of course, when she took a turn for the worse it was a weekend, so we had to go to the out of hours GP which was held in our old friend the A & E department at our local hospital. I remember sitting there in the waiting area, Amy’s chest crackling away and people looking at me, like why wasn’t I holding her or comforting her? The truth is I knew it wouldn’t make a difference. I held her hand so she knew I was there. We saw the GP, he took one look at her, did a quick exam and we were taken round to the emergency side and she was put on oxygen. I was on my own for some reason. I felt very strongly that we shouldn’t prolong her life unnecessarily, I believed she was suffering somewhat and I didn’t want to extend that, there was no cure, not even a hope of one. I didn’t want her to have antibiotics, certainly not IV. At some point with the help of her specialist medical team, we’d signed a ‘Do Not Resuscitate’ order for her. I made this clear, but somehow I still got talked into giving her IV antibiotics. That was the only time, and after a day I said no more, they gave them orally after that (via her feeding tube).

After a couple of days in hospital I’d had enough – no sleep, pointless medical interventions. We asked to be transferred to Demelza house, the children’s hospice. We got transferred and the minute we stepped through the doors I relaxed. It felt like a second home. We’d only been for respite before so this was different, but it was so much nicer than the hospital.

I knew the end was coming but I didn’t know when, I knew a chest infection would be the most likely trigger for her dying. I didn’t know whether it would be this time, the next or the next. That time she recovered, and we went home. I must admit, I was relieved, but also part of me had wanted her to die, because the whole waiting for it was hard to bear too. I was paranoid that I’d go into her one morning to find her gone – I don’t know why that would have been so bad, but I didn’t want it to happen nevertheless. I also didn’t want her dying in hospital, or when I wasn’t there. I felt very strongly that I saw her into the world, therefore I should see her out. I planned her funeral – something you should never have to do for your child. When I say planned, I thought about music, photos I would show; I prepared photos for a slide show. I figured I was never going to see her wedding, so I’d give her a good funeral.

During the run up to Halloween I planned a little Halloween party, nothing fancy, just her cousins coming over and some games. My mum had bought her a gorgeous fiery fairy outfit – we loved to get her beautiful clothes and hair accessories (she had the most beautiful ringlets) as it was all we could buy for her. When I had Phoebe I hoped she’d have curly hair like Amy but hers is as straight as mine! She’s still gorgeous though. Another chest infection came. This time we didn’t bother with the hospital, we went straight to Demelza. When we told them about the Halloween party they said we could have it there – they were so nice to us, we strung up decorations and had games and sweets. I remember one time saying how I wanted to watch Disney films with her and they wheeled in a TV with a video on it and we watched Beauty and the Beast.

That Christmas was pretty dark for me. Amy was ashen, she looked beautiful but was pretty much asleep the whole time. Again, I wondered would it be her last? I felt pressure to enjoy it, but what was there to enjoy?

Of course over this time I smiled, I laughed, I carried on with life too, we still had sex, we got drunk, we had hobbies, we had to go on living or go insane – I started amateur dramatics and starred in several plays which helped me focus on other things. We took her places, more for us than anything, we went on the London Eye, and to Farming World, which is great for disabled children, they have a sensory garden, and wheelchair friendly play. We were also trying for another baby through IVF, and in the January of 2009, I got pregnant.

I was always hesitant to plan things too far in advance, in case Amy died. We went on a holiday together, Amy stayed at Demelza, but I was nervous of going too far. It was if my life was held in suspension. In the run up to her birthday in June 2009, I didn’t want to go mad with presents and planning. We planned a family party for the weekend of her birthday. Two weeks before her birthday she got ill. By then we had a home nebuliser, and a suction machine to help her. I was doing my best to manage her symptoms at home. We also had strong painkillers to give her. I phoned Demelza to get her in – they had no space! I explained how ill she was, but they couldn’t turf someone out of their planned respite without a Doctor saying that they thought she was at the end of her life – how did I know when that was? I called the GP, a young boy of a Doctor came out. He looked horrified when he saw Amy, lying on the sofa, unresponsive, crackling chest, me with the suction machine. He said if it was up to him she’d be in intensive care at the hospital, but when I explained a bit more, he was OK. He agreed that she was likely to be at the end of her life and did the necessary, we got a bed at Demelza. Once there, she seemed to improve. A couple of my friends came to visit, took her for a walk in the garden. I felt bad for taking someone’s place, but I felt safe and supported there. I refused the antibiotics for her. I’d been embroidering a cross stitch picture for her since before she was born and still hadn’t finished it, I spent time by her bedside, stitching away.

We had the option of staying overnight but we preferred to go and sleep in our own bed, we were only 20 minutes away. About the third or fourth night we went home as usual. It was around this time that we knew she’d get over this one. At 2am I got a phonecall. Amy had stopped breathing twice, we needed to go in. I quickly woke my husband, we got dressed and drove to the hospice, in silence. No one was on the road. When we got there I saw one of the nurses in the entrance porch, I knew what it meant. She said, ‘I’m so sorry, she’s already gone.’ I’d been waiting for that moment since the diagnosis. I didn’t know how I’d react, I thought I’d be stoic, hadn’t I been waiting, sometimes wishing it would come? I burst into tears, hugged her, turned round and hugged my husband, crying hard. We were led through to the lounge. Pretty quick I jumped up and said I wanted to see her. She was still in her room, in her bed. She looked asleep. I kissed and hugged her. I was sad I hadn’t been there, and wished I hadn’t gone home. They said it was peaceful, she stopped breathing, started again and stopped, started and stopped. One of them held her they said. I’m glad she wasn’t alone. I had bought her a dress for her birthday, I brought it with me. I was going to dress her in it, but in the end we decided to leave her in what she was wearing, a pretty, comfortable tracksuit. I brushed her hair and made it neat around her face. We called our parents, and they both came to sit with us. As the birds began to sing their dawn chorus, the staff gently told us that they needed to move her to the special room. I knew about this room, the Hop Garden I think it was called, it was by the chapel, it’s a room for the children who’ve died stay in, it’s kept cold for obvious reasons. I was always a bit frightened of it – it turns out it’s great in this situation, it means she didn’t leave Demelza at all, no funeral home, just an extension of her bedroom. We brought in her bits and pieces from home, her cuddly toys, pictures and books. I was suddenly aware of my hunger. I was 20 weeks pregnant with twins by this point, so I asked for some toast. In typical Demelza style they gave us several rounds; I ate it, ravenously, towards the end I suddenly stopped – here I was chatting away to my family scoffing toast while my daughter lay dead in the next room – I nearly choked on it.

Over the next couple of days I thought I’d said goodbye. I was actually surprised at how devastated I felt. Yes there was an element of relief, but mostly I was gutted. I wanted one more cuddle, I wanted to preserve her body, keep her in a glass coffin like in Snow White so I could just go and see her once in a while. I thought about killing myself to be with her even though I wouldn’t, I just wanted this awful pain to stop. She died on a Friday, just over a week before her third birthday.

On the Wednesday night I woke up my husband and said I needed to see her. We phoned up Demelza and they said we could come whenever we needed to. We stayed for a while that night. There was no one else in the room. She was still the same. I told her I was sorry, for what I’m not sure, but I told her anyway. I told her I would live my life for her, that I wouldn’t hold back, I’d do the things she wouldn’t get to do. Eventually, I felt more at peace. I didn’t see her again until the Friday, when it was her funeral. My family and friends said I shouldn’t see her again, but I wanted to make sure she was settled in her coffin, that her duvet was tucked in right, that she had the right toys in with her. I don’t regret that at all. I took photos of her in the room, in her coffin – I’ve never looked at them since I got them back, maybe once, but I know I have them. Maybe it’s the mothering instinct, I needed to make sure she was ok that last time.

Demelza helped arrange the funeral, and somehow all the costs were met, we just paid for the coffin. We used the refund from the child trust fund. We picked out a white one with a rainbow over the top, she had pink roses everywhere, and we all threw rose petals in the grave. My slide show was a success and I made a cake. I don’t think I cried during the funeral, I was busy making sure she had the right send off. I had broken down in the florists during the week because the florist didn’t understand what I wanted, plus I didn’t think she was sympathetic to me. My mother in law saved the day. I am so thankful to be surrounded by strong matriarchal figures like my mother in law and my mum, my sisters in law and my friends. We told people not to wear black, to wear bright colours in celebration of life – I wore hot pink. I realised during the last 2 years I’d been subconsciously mourning, wearing dark and black colours most of the time.

So now, I grab every opportunity, I don’t hesitate, I wear bright colours, I live life to the full (where possible!). I also try not to sweat the small stuff – of course I still do, and stress about things I shouldn’t, but on the whole, I think if I got through that I can get through anything! I’m so grateful for my three hard won healthy little miracles even if they do drive me crazy!

In memory of Amelia Rosie 10/06/06 – 30/05/09

Next in the series – read our journey to get our three healthy babies, not as straightforward as it sounds.

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