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Let's make some memories

I think when anyone hears the word “hospice” it makes their body shudder and their stomach turn. They associate it with death. I had this preconceived idea of hospices as dreary places, where everyone talks in whispers while sitting on “wipeable” chairs in beige rooms. Everyone walks around in silence and keep their eyes locked on the floor. That isn’t what Martin House is. Yes, children do die there, but it is so much more than that.

I left my mums house with Evelyn and Penny in the car, and my parents following on in convoy. I cried as I drove there, doing my best to answer all Evelyn’s innocent questions. It had only been 2 and a half weeks since my Uncles funeral, so everything was still very fresh in her mind.

“Will we have to go to church?”

“No babe, we don’t go to church.”

“Will Pippa be buried?”

“No, I don’t think so.”

“When Pippa’s a crocodile, can we go and see her?”

“Well, we won’t know where she is, but we could try and find her.”

We’ll go into the whole “crocodile” thing at a later date, but in short, it’s Evelyn’s take on reincarnation.

As we arrived at Martin House, we were welcomed by our Nurse, Debbie. She gave us a very brief tour of the family area. Children were running round and playing, groups of parents sat around large dining tables, chatting happily away and in the open kitchen, the chefs were preparing the evening meal. We were walked down a corridor, to Pippa’s room. Every room was named after a colour of the rainbow, we were in Yellow. There was a large comfortable bed, a sofa, wardrobes. It was just like a bedroom like you’d find in any home.

Ian’s family were next to arrive, and Debbie kindly brought us all some dinner as she knew we probably wouldn’t feel like eating later on. It was such a strange feeling, us all sitting together, eating fish and chips, knowing that later that same day, Pippa would be taken away from us. How could we be doing something so normal when Pippa’s life was coming to an end? Evelyn had become restless and wanted to see what all the other kids were doing, so in came Fiona, one of the care team at Martin House, and she offered take Evelyn to play, and off she went. Evelyn went to play with the other children, we saw her outside our window exploring the grounds, and throughout the next couple of hours, she came and went into our room as she pleased. We didn’t want to force her to be there.

A short while later, Ian arrived in the ambulance with Pippa. One thing we wanted, was for all our family to have the option of one last cuddle with her, but we knew that as soon as she came off the oxygen provided by the ambulances incubator, that she would struggle to breathe. So, the ambulance crew stayed with us, and waited incredibly patiently while everyone cuddled her, stroked her hair, and kissed her head. When everyone had had their time with Pippa, Ian and I made ourselves comfortable on the bed, and she was passed to us, and had her breathing support removed. She instantly panicked as she gasped for breath, and I wanted more than anything in the world, for the crew to put her oxygen back on, she looked so frightened, but I knew this wasn’t possible. Debbie was on hand straight away and asked if we’d like to give her some medication to help calm her and help her relax. We agreed, the medicine was given, and she soon settled.

Pippa was breathing incredible slowly, maybe only a couple of gasping breaths a minute. Each one felt like a dagger to my heart. Only a short time ago, I had been willing for the oxygen support so she could live, and I found myself now doing a complete 180, and telling my daughter that it was OK to stop, she didn’t have to keep on fighting. I didn’t want her to live in pain anymore. What seemed to be an eternity, was actually only 2 hours. Pippa died at 5pm on December 30th 2017, in her parents arms, surrounded by her loving family.

Once Pippa’s death had been confirmed, we were given all the time we wanted to take it in. So, we all sat there, and mostly just cried. We were given a nice comfortable, clean moses basket for Pippa to lay in. Our family slowly decided that it was time to go and left us to be with Pippa. Debbie asked what we’d like to do. I said that I’d like to give her a bath, something that we’d not been given much of an opportunity to do in her last few weeks. Debbie wheeled in a baby bath and removed her last cannulas. The sense of peace I felt, giving my still baby her bath is something that I cling onto. She was wire and line free again, it was so easy to hold her, and the fluid had drained from her body, and she just looked like Pippa again. I dressed her in a sleepsuit that we had bought just that morning. It would be the last thing she ever wore, so it had to be perfect. Once she was dressed, I laid her in her moses basket, and tucked her in with her pink sheep blanket, her matching bunny to Penny’s and her superbear comforter.

After this, Debbie showed to the “Little Rooms”. Martin House has 2 rooms that are laid out as a bedroom, that have the air conditioning set to a very low temperature, so that the children that occupy them can stay there for a few days before the funeral homes facilities are needed. Only us, and our nurse would have a key to the room, and we could visit her as much or as little as we liked.

When we were ready, we were given a full tour of the house. We had a large comfortable bedroom of our own upstairs, with its own bathroom, and a shared kitchen and living room for all the families. Downstairs there was a large living area, with sofas, a TV and an endless supply of DVDs. We were welcome to use the kitchen as much as we’d like, but there were chefs there to prepare all our meals. There was a playroom, a music room, filled with hundreds of instruments, a craft room that seemed to have a constant twinkle of glitter and sequins, and a rainbow room. This room had a large rainbow painted on the wall, with pictures of all the children who had died within Martin House filling the colourful arches.

As we sat on a sofa, another parent began talking to us, and asked about our children. It was the first time we’d had to say that she had passed, and to my utter surprise, the other parent just nodded and smiled a knowing smile as we spoke. Their child was alive but with a life limiting condition and they were there for respite care, but they knew that one day, they would be in our shoes. The most comforting thing about being at Martin House, was knowing that nothing was a taboo subject. You could talk freely about how shit everything was, and everyone just got it. No one avoided talking to us, or tried to steer clear of talking about Pippa, because they understood what it was like.

The following day, our Nurse was Georgie. She sat with us on the sofa as soon as we arrived for breakfast and presented us with tea and toast. She went through all our options with us, what did we want to do? We could do some fingerprint craft with Pippa, we could sit in the Chapel or explore the grounds if we liked. She gave me a leaflet for a lady who made silver jewellery with finger prints of loved ones on, and she took details for any one we needed to contact about Pippa’s passing, so we wouldn’t have to receive any letters etc addressed to her. She contacted the funeral directors for us to make initial contact, who promptly came to the house the same day to start getting some details from us about our little Pipsqueak. Is this really happening? Yes, it really was, we were planning a funeral for our baby girl.

It happened to be New Years Eve that day, a day where everyone gets together to see in the New Year. It was this day where we shared with the world that Pippa had lost her battle. Ian and I had chatted at length about whether or not we should continue to share our family journey. But we knew how important this was, our story had already helped other people, that’s the whole reason we started it. It’s same reason we decided to share the news, in the hope that one family may read it and see our life and our struggles, so if they found themselves in similar situations, they know they’re not alone. We quickly found out how far and wide Pippa was known, we received so many messages from people all over the world. It was so heart-warming to know that our tiny little warrior had had such an impact on so many people.

As the night came, I didn’t want to see it in. I wanted to close my eyes and wake up next year and realise this was all a horrible dream. We all went to bed and fell asleep before any festivities had begun. Ian woke up not long before midnight, he decided he wanted to be with Pippa so she wasn’t alone for the New Year. He played some songs and sang to her for a short while before walking back through the house and up to the shared kitchen and living room near our bedroom. He spent hours in there alone, chatting with his Dad who was 8 hours behind us, with his own New Year still to come.

Over the next couple of days we had some keepsakes made from Pippa’s hand and footprints. We had some Christmas baubles made, a family tree which has all of our hand prints on, and some decorative dishes made up with Pippa’s finger prints for decoration. I spoke to the lady who made the silver jewellery and she took a scan of Pip’s hand and footprints away to make them. Ian doesn’t really wear jewellery except for his wedding ring, so he decided he would get Pippa’s hand print tattooed on his chest over his heart.

Pippa’s body needed to leave the house sooner rather than later. Her body wasn’t cold enough, and would have to go to the funeral directors. We asked the funeral directors to come later in the day so we had time to say our goodbyes, and time to explain to Evelyn that we may not be able to see her again now. Unfortunately, they arrived only a short while later and had to take Pippa straight away. So we picked Evelyn up from the crafts she was doing and went down to see Pip. Evelyn had spent more time with Pippa in the last few days than she had Pippa’s entire life, and when she realised she’d never be able to see her sister again really upset her. I’d never seen her like this and it broke me knowing there’s nothing I can do to make it better. For the rest of that day we were once again just feeling numb. Pippa was no longer with us, and we couldn’t see her anymore.

After 4 days at the house, we decided that we needed to step out of this safety bubble that had been created for us. We needed to go back in to the mean horrible world outside and attempt to take a step forward. Our time at Martin House was very sad but left us with some beautiful memories that we’ll keep forever. Evelyn attends sibling sessions, where she’s with other girls and boys who have lost a brother or sister, our parents are invited along to grandparent groups, and Ian and I continue to get bereavement support from Jo, who is part of the bereavement care team at Martin House.

Martin House is a very special place indeed and we thank them wholeheartedly for all the love and care you have given to our family this year.

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