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Monday, March 5, 2012

Celebrating life in the face of death -True Story of a Lovely Father -Gulf News

Celebrating life in the face of death -True Story of a Lovely Father
Leave your tears at the door. That was the message to family and friends as they came together at a party for Karen Brace's husband Nick, a much-loved father who knew he was dying of cancer
As told to Karen Pasquali Jones, Editor, Friday
Karen Brace
Nick was the heart of the family, and the family's grief does not go away, but they are coping one day at a time.

Glancing over my daughter’s shoulder, I had to smile. The childish writing was sloping wildly to the right and I’d had to help with the spelling. But it was the best card my five-year-old daughter Faye had ever made.
“Do you like it, Mummy?” she asked, and I nodded, struggling not to cry. She’d spent hours on it, and now, among the splodges and squiggles was the most beautiful message I’d ever read: “I love you, Daddy.” She’d signed it from herself and her baby brother, Ewan.
“Can I give it to him now?” Faye begged and I watched her scamper over to my husband Nick.
“That’s fantastic, darling,” he said, kissing her. I could see he loved the card as much as I did, with its messy colours and simple, heartfelt words.
I glanced at my watch. 10.45am. We needed to get a move on. We didn’t want to be late. Not for such an important event.
Karen Brace
Nick’s last Father's Day was spent with family and close friends.
We’d all spent days getting everything organised for Nick’s party. It was being held on Father’s Day but that wasn’t what made it so special.
There was only this card from the kids and no presents. After all, what do you buy a man who has only a few weeks to live?
“Are you ready?” I asked Nick, smiling at his version of ‘dressed up’ – a pair of jeans and a T-shirt.
“Ready as I’ll ever be,” he said. And off we went to his goodbye party.

A final chance to say, ‘I love you’
This was his chance to be surrounded by everyone who loved him and wanted to tell him just how much one last time. Because none of us knew exactly how many more days he had left. We just knew it wasn’t many. My beautiful, big, strong, Nick was being ravaged by acute myeloid leukaemia.
We’d tried everything – chemo, a bone marrow transplant, every drug and treatment possible. But none of it had worked. Doctors had told us he only had weeks left. And here we were now, walking into his sister Julia’s house, in the sunshine, to greet everyone who loved him as much as me and the kids did.
“Can I go swimming?” Faye begged, rushing over to join her cousins in the pool. 
I jiggled Ewan on my hip. He was two and into everything. “Come here, Nipper,” Nick said, swooping him up into his arms, and walking over to greet his family and friends.
Karen Brace
The party was a celebration of his life, a chance to create happy memories to see the family through the tough times ahead.
The children didn’t know he was dying. Ewan was too young to understand but Faye was close to her dad. I didn’t want her to worry, I thought she was too young to cope. But watching her splash in the water, oblivious now, I panicked I’d done the wrong thing.
How would she react when she understood later the real reason she was here? Why, if you looked closely, everyone had tears in their eyes even though they were forcing 
a smile.
Creating memories
There were 30 of us in Julia’s garden – our closest family and best friends. 
Today had been her idea. “Why don’t we have a party?” she’d suggested, choked.
“We can create some memories.” She didn’t say it but we all knew what she meant – and say goodbye.
“It’s a fantastic idea,” Nick had agreed, his eyes shining through the pain. So we’d thrown ourselves into the details.
Julia had booked a photographer, sorted the invitations, and we’d all pitched in with food.
“Leave your fears and tears at the door,” I’d told everyone we invited. “Please just come and enjoy yourselves.”
Now sausages and burgers were sizzling on the barbecue, and everyone was chatting, and laughing. If I didn’t look at Nick, it was easy to forget the real reason for the get-together.
But then I’d see his gaunt face, his former 82kg frame all skin and bone, and despair would clutch at my chest.
Nick was eyeing up a bowl of strawberries. “One of these could kill me,” he said, picking up a fruit. He was on a special diet to stave off infections – to buy us more time – and strawberries were banned. “But I think I’ll risk it,” he grinned, popping one into his mouth.
I watched Nick, talking easily with everyone. No one cried. There were sounds of laughter coming from the pool.
“It’s surreal,” I thought. “This can’t really be the last time we’ll all see Nick like this.” 
Maybe the doctors had made a mistake. Maybe he had more time than we’d been told. 
A hand touched me on the shoulder, making me jump. “I don’t want to die,” Nick said, choked. “I don’t want to say goodbye, Karen.”
I held him then, surrounded by our friends and family and knew there’d been no mistake.
My gentle, kind, husband – who’d held down two jobs as a fisherman and builder – was losing this battle against cancer. Precious time was running out.
He was flagging before my eyes, and just before 5pm, I knew he was exhausted.
“Let’s go, love,” I said as his sister handed him a letter telling him how much she loved having him as her big brother.
He put it in his pocket for later, knowing it would be too hard to read here. 
Nick kissed everyone goodbye, then we left, me too overwhelmed to say much. Nick was shattered but was smiling.
“It was a good party,” he said.
Precious time rushed by so quickly
He went rapidly downhill after that. My strong Nick began to disappear as the cancer took over. We had to face up to what was happening, make cruel decisions – no resuscitation when he became too ill, a hospice at the end rather than hospital.
Time was rushing by too fast. Nick battled to spend time awake with me and the children, chatting, playing, or cuddling up in front of the TV when he was tired. 
Just three weeks after the party, he became confused and distressed.
I’d been warned this could happen if the cancer reached his brain. He’d become disorientated then lapse into a coma. “Let’s take you to the hospice,” I said. I just wanted him to be in as little pain as possible. It was a Sunday and the next day I took Faye to school.
Nick was weak, barely talking but he wasn’t in a coma – he was battling even that. But I knew we were near the end. “Let’s go and see daddy,” I told Faye when I picked her up from school. Her eyes lit up.
I’d arranged for Ewan to come too and there were cakes and juice in Nick’s room as a treat. “Hello, Daddy,” Faye said, taking off her shoes and jumping up onto Nick’s bed to cuddle him.
She stayed like that for ages while Ewan drank and ate, oblivious to what was happening. Then she kissed her dad and went out into the hospice’s garden to play.
“Come on kids, home time,” I said. I didn’t really want to leave but I needed to pick up my nightie, shower then I’d spend the night with Nick at the hospice.
“Back in a minute, love,” I said, kissing Nick. He was too weak to answer. I hurried back, not wanting to miss any time with him.
I hadn’t been gone long when the hospice called. “We think you should come now,” a nurse said.
I drove back, numb, refusing to think about anything other than moving the steering wheel, and manoeuvring the car along the road.
The nurse was waiting. “He’s gone,” she said gently. “He spared you and the kids.” 
Nick had waited for me to leave so I wouldn’t see him die.
“I want to be with him,” I whispered, even though I was scared. I hesitated outside his door. I didn’t know what I was going to see. But it was just my Nick there, looking as if he was asleep. “You can go wherever you want now,” I said, kissing him. “Go fishing out to sea.”
I don’t know how long I stayed with him, and then I felt arms around me, lifting me up. The room was filled with our families.
I couldn’t speak, just allowed myself to be taken home.
I didn’t think, couldn’t speak. My heart pumped blood around my body, my lungs filled with air. But I didn’t feel alive. I didn’t feel anything.
The children were asleep, so I sat with everyone drinking scalding tea and pretending to eat pizza. I was dreading what I had to do next – tell the children.
Ewan wouldn’t understand but Faye was big enough. I couldn’t face it the next morning though. This was the worst possible news she could hear and I had to get the words right. I wasn’t ready yet so I dropped her off at school.
I spent the day in a blur, seeing the vicar, making the funeral arrangements. Then I went to pick up Faye.
“Can I have an ice lolly?” she asked, jumping in the car. My stomach flipped over. “Yes, love, but first I want to talk to you about something.”
At home, I took her into the living room, and sat her down. “You know Daddy’s been ill, darling?” I began as she gazed up at me. She nodded. “Well, he woke up and then he died.”
I didn’t want to say he’d died in his sleep as I didn’t want her to be scared of going to bed at night. She scowled at me then and slowly she opened her mouth. “No,” she screamed. “No it’s not true.” She began to run off and I had to grab her and hold her to me, sobbing.
I clung on tightly as the grief pounded her tiny body. I could feel her heart galloping in her chest. Then, finally, I felt her slump. Her face wet with tears, she pulled away from me. “Can I have my ice lolly now?” she asked. I kissed her. “Of course, love.”
I wanted to celebrate Nick’s life
I didn’t take the children to Nick’s funeral. I didn’t want them to see us all that upset. But I wanted them at the service where we would intern Nick’s ashes in his grandparents’ grave. Faye, Ewan and their cousins made flower baskets for Nick, decorated them with ribbon.
“This is for my Daddy,” Faye said, proudly showing hers. I dressed them in bright clothes. I wanted to celebrate Nick, not mourn him in black.
It was still hard watching him laid to rest, but at exactly the right time Faye stepped forward with her flower basket and placed it next to his grave. Then, one by one, Ewan and the other children followed, a tiny procession of flower children.
We went back to the house, where I’d laid on a spread of food and hired a bouncy castle. I watched Faye and Ewan playing with the other children, and knew I had to love them enough for me and Nick now.
It was hard without him. I’d visit his grave with the children and put pictures of him around the house, but it didn’t stop Faye crying.
“I want my Daddy,” she’d sob. “Bring him back, it’s not fair.” She was so little but her grief was huge. I was worried. I didn’t want this to overwhelm her life, but I didn’t know how to help her. One night I sat her and Ewan down to eat fishfingers. Ewan tucked in but Faye stared at me. “Do you think God would let Daddy come down from his star so he can have tea with me?” she asked.
I blinked away the hot tears stinging my ears. “No,” I said, hating having to be so hard. But I couldn’t give her false hope. I wanted Nick back as much as she did. But there was a hole in the family now where Nick had been and I didn’t know how to make this better. 
Then a friend told me about a group in Southampton for bereaved children, called Simon Says. It held monthly meetings for children as young as Faye to talk about their feelings and their grief.
It was a struggle to get there as it was a 45-minute drive each way, but I made the effort. It was a place for us all to go, and for Faye to talk about her Daddy.
The group would listen, and find ways of exploring different themes like loneliness or anger through play and puppet shows.
“I like it,” Faye said after the first session.
The other children had lost a parent or sibling too. For once, she didn’t feel different, the odd one out.
It’s really helped. It’s four years since Nick died now, and her grief is just as raw. She’s nine and still cries for her Daddy. Lots of people think we should all be over it by now, but grief doesn’t work like that. It’s not a scar that can just heal, it’ll always be part of us. Nick was the heart of our family. He can’t be replaced.
But thanks to Simon Says, Faye is stronger. It’s hard to put into words what an impact it’s had on all of our lives. We’ll never get over losing Nick, but Simon Says helps us all cope one day at a time. Faye is so brave – Nick would be proud of her.
Karen Brace, of New Milton, Hampshire, UK
Faye says: “I like going to Simon Says because I can talk about my Daddy. He was kind and funny. I have friends here who are nice to me and then I can play and feel better.
“I miss him so the group suggested sending a helium balloon up to heaven. I wrote a message on mine. It said, ‘I love you Daddy and I hope you are happy with God. I miss you.’ 
“Afterwards I gave Mummy and Ewan a hug and felt happier.”

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