Monday, January 20, 2014

With Only Months To Live, Rowena Planned Out How To Be There For Every Big Moment In Her Son Freddie's Life...

Teddy bears are awfully clever these days. Take three-year-old Freddie Darby's bear who, it seems, is not only good for a cuddle, but has special powers, too.
If ever the little boy wants to speak to his mother and she is not around, he whispers into teddy's ear and - as if by magic - Mummy can hear everything.
'I've told Freddie that his teddy bear has a hotline to Mummy for when I'm not there,' says Rowena, 33, who lives in Bolton, Lancashire, with Freddie and husband Phil, 34.
Made with love: Rowena shows three-year-old Freddie two of the cards she has made for him to remember her by
Made with love: Rowena shows three-year-old Freddie two of the cards she has made for him to remember her by
'So, he talks to him and can tell him anything he wants - and I've told him his teddy will pass it on to me, no matter where I am.'
It's a charmingly simple idea for any child experiencing separation anxiety when Mum or Dad is away from home. But there's an achingly poignant reason why Freddie is so attached to his stuffed bear. Rowena has only months to live. Diagnosed with bowel cancer shortly after Freddie was born, she knows that time with her little boy is running out.
 
Now, in a bid to ensure that he is as prepared as possible, she is spending her last moments dreaming up ever more imaginative ways in which he can remember her.
The clever trick with teddy is just one idea. She has also set up an email account in his name, which he can access it when he's old enough. He'll be able to read the emails she's written to him during her illness, giving him insights into her life.
Wedding day: Rowena and husband Phil on the day they tied the knot
Wedding day: Rowena and husband Phil on the day they tied the knot
She has also recorded a CD of her favourite songs and nursery rhymes for him and even plans to write some children's stories and film herself reading them.
Perhaps most personal of all, she has hand-made beautiful cards that Freddie will receive on each birthday and Christmas until he is 21. There are also cards for his first day at school, his graduation, even his wedding - events that, sadly, Rowena is unlikely to see.
Inside each card are simple messages. From prosaic pieces of advice such as 'If you can't say anything positive, don't say anything at all' to more lump-in-the-throat inducing expressions such as: 'Every time you look at the sky, remember that's how big my love is for you.'
It's a heartbreaking task. But Rowena says that preparing her little boy for life after her death is keeping her going.
'I can't waste any time crying,' she says. 'Of course, there have been tears and the last thing I want to do is leave Freddie. But I can't let my time be taken up by being upset because what good is it going to do? The important thing is to spend time with Freddie, give him lots of lovely memories and make sure he can cope when I'm no longer around.'
Rowena, an actuary, always wanted to be a mother. She met husband Phil, 34, a former financial adviser who is retraining to become a teacher, in their first term at York University in 1999. They married exactly ten years later.
'I always knew I wanted four children,' she says.
By September 2009, her plan was on track and Freddie was on the way.
But it was during her pregnancy that Rowena started suffering symptoms of bowel cancer.

Marital bliss: Rowena and Phil on their honeymoon in 2009
Marital bliss: Rowena and Phil on their honeymoon in 2009
'I was passing blood when I went to the toilet, but at the time, the doctors said it was normal and pregnancy-related,' she says.
'I don't blame them. It's rare for a young woman to have bowel cancer and there's no history of it in my family. But if I'd known then what I know now, I'd have asked for more tests.'
Freddie was born in June 2010 weighing a whopping 10lb 13oz.
'He looked like a three-month-old,' laughs Rowena. 'I was exhausted, but Phil and I were over the moon.
'I loved the birth, I thought it was brilliant and, with hindsight, knowing that I'll never do it again, I'm so grateful I experienced it.'
But it was in October of that year when Rowena began experiencing pain. 'It was constant and underlying, 24 hours a day,' she says. 'The doctors still said it was piles or a fissure and gave me strong painkillers.
All according to plan: Rowena, who gave birth in September 2009, is grateful to have experienced pregnancy
All according to plan: Rowena, who gave birth in September 2009, is grateful to have experienced pregnancy
Abnormal: It was a month after Rowena gave birth, here pictured with one-month-old Freddie, that she started experiencing pain
Abnormal: It was a month after Rowena gave birth, here pictured with one-month-old Freddie, that she started experiencing pain
'Six months later, I had an internal investigation that found nothing, but I was still in pain. Then in May 2011, I had a colonoscopy (an examination of the colon) and I knew immediately that something was wrong because it was really painful. More scans followed.
'In June 2011 - a week before Freddie's first birthday - I was told I had cancer.'
Faced with such a shocking  diagnosis, most people would immediately grieve for the life they were to leave behind.
But not Rowena. She was already thinking of the future.
'I know it sounds odd, but I really wasn't shocked or devastated because I'd already suspected it, so I'd had time to process it,' she says. 'My main priority was to find out what treatment I could have to beat it.
'My first thought wasn't about dying or Freddie, but about whether I could have more children. But I was told that  the cancer treatment would make it impossible.
'Phil felt exactly the same. Because I'd waited so long for a diagnosis, we'd had all the difficult conversations already. We'd talked about what would  happen if I died; we'd been angry, upset and devastated and got through all that.
'So, when the doctor's confirmed it, it was almost simple to cope with. We were both like: “Right, OK ... what do we have to do?”
'By complete chance, the following day I was at the right point in my cycle to start IVF injections if I wanted my eggs frozen. We went for it. Phil wanted children in the future, too.
'They managed to collect 11 eggs. It means that - if I am able to live for much longer - we could have another child by a surrogate. I know that it's incredibly unlikely, but you can't live without hope.' Rowena began radiotherapy treatment followed by chemotherapy tablets and an operation to remove the tumour.
In January 2012, she was rushed into A&E with bowel cramps and it was then that the doctors discovered a cyst on her ovaries, which she was told was probably cancer.
Birthday boy: One-year-old Freddie unwrapping his presents
Birthday boy: One-year-old Freddie unwrapping his presents
Happier times: For Rowena, the most important thing is to give Freddie lots of lovely memories of their time together
Happier times: For Rowena, the most important thing is to give Freddie lots of lovely memories of their time together
'I knew at that point that it was terminal without them even having to tell me,' she says matter-of-factly.
'I'm an intelligent person. I had read up on it and I knew my odds. It might  sound strange that we didn't crumple up, but neither of us are overly  emotional - I think that's why  we're so good together. We're pragmatic and practical.
'But the doctors were still hopeful that surgery might help, so in April 2012 I had a full pelvic clearance.
'They took everything - my ovaries, uterus, part of my bowel and abdomen. I didn't care. It's what I had to do to live longer and be with Freddie and Phil. I was like: “Get rid of it if it means more time to live!” '
But just four months later, Rowena was given the devastating news that the cancer had spread to her lungs, liver and pelvis.
'It broke me,' she says. 'The one thought flashing through my mind was Freddie and what I needed to do in terms of getting things ready for when Phil is alone with him. I was so sad at the thought of leaving them.
'But I made up my mind early on that I needed to accept what was happening. If I was angry and crying and stressed, it wouldn't help me at all. I needed to be at peace with it.'
Family bonding: Freddie doesn't know that his mother is going to die because he doesn't understand death yet
Family bonding: Freddie doesn't know that his mother is going to die because he doesn't understand death yet
Family vacation: The Darbys went on holiday at EuroDisney this year
Family vacation: The Darbys went on holiday at EuroDisney this year
The couple went into overdrive sorting out practicalities for when Rowena passed away. They made wills, set up a joint account, started planning the funeral. But it was also around this time that Rowena began thinking about ways in which she could help her little boy cope with life after she'd gone.
'Freddie is so young. Is he going to remember me?' she asks. 'And are they going to be real memories?
'He doesn't know I'm going to die because he doesn't understand what dying is yet. But the other day he said: “Mummy I don't like it when you go into hospital because I miss you.” It broke my heart.'
Rowena began making her selection of cards while she was in hospital undergoing chemotherapy. They will be presented to him on various special occasions, up to and including his 21st birthday.
'It's so hard to imagine him at 21,' she says. 'I was watching a film yesterday where a young boy finds his first love and I thought: “Gosh, Freddie's going to be doing that one day and I'm not going to be around to see it.”
'I'm not going to be here to chat to him if it all goes wrong and give him cuddles. That's what's hard about all this. But that's why I want to be able to give him these cards - so he can look at them when he wants to feel me near to him and know just how much I love him.'
Tragic: Freddie with Rowena, pictured getting treatment for her bowel cancer
Tragic: Freddie with Rowena, pictured getting treatment for her bowel cancer
She has thought long and hard about the messages she has included in each of the cards.
'I knew I couldn't handwrite personal messages on 50 cards - it would have  been too hard, practically and emotionally,' she says. 'Instead, I've looked up inspiring quotes and printed them out on little credit card sized notes that he can carry with him.
'At his next birthday - which I hope I might live to see - he will receive one with the message: 'The prime purpose of being four is to enjoy being four. Of secondary importance is to prepare for being five.'
'When he's ten, he'll get one that says: “Life is ten per cent what happens to us and 90 per cent how we react to it,” because by that stage, he might be struggling to deal with the fact that I'm not there.
'On his wedding day, he has one that says: “Love is a symbol of eternity. It wipes out all sense of time, destroying all memory of a beginning and all fear of an end.” I know it's not the same as me being there in person, but I hope it helps him know how much I love him.'


'I'm jealous of all those people who are going to carry on living and spend time with Freddie. I need to have something there so he won't forget me, too.'


While Rowena hopes that these messages from beyond the grave will provide comfort for her son when she is gone, she is acutely aware that they might have the opposite effect.
'Early on, a friend said: “Don't let Freddie have to live up to you. Don't be this person who is put on a pedestal. He needs to know that you have faults and are not perfect, too.”
'That really hit home to me so that's when I started emailing Freddie and I'm honest with him about who I am. I tell him that I can be quite abrasive with people and that I often say things before thinking about it and have to apologise.
'I tell him about rows I've had with Phil, so he can see that I wasn't always right.
'There would be so much pressure on Freddie to think I'm perfect.'
Rowena adds: 'People always say that about the dead and I don't want him to think I'm perfect when I'm not.'
As if to illustrate this, she acknowledges that her mementos aren't completely altruistic gestures either - she has a selfish motive, too.
'My aunt died a few weeks ago and people's reaction to it was: “It's sad, but death happens and you've got to move on.” In the back of my mind, I was thinking: “Don't say that! I want you all to be mourning me for months!”
'Now, obviously, I don't really want people to be sad for months on end. But there's a little part of me that does.
18th birthday card
21st birthday card
A mother's love: Rowena has handmade beautiful cards that Freddie will receive on each birthday and Christmas until he is 21
Heartbreaking task: Rowena looked up inspiring quotations and printed them out on little notes Freddie can carry around
Heartbreaking task: Rowena looked up inspiring quotations and printed them out on little notes Freddie can carry around
'I'm jealous of all those people who are going to carry on living and spend time with Freddie. I need to have something there so he won't forget me, too.'
She and Phil have talked about the future and while she finds it hard to imagine him with someone else, she says she wouldn't want him to be alone.
'There's every chance that one day Freddie will have another mummy and, of course, that's hard to think about,' she says. 'I don't want to be the “first wife” always in the shadows, but at the same time, I don't want Phil or Freddie to forget me either.'
To that end, Rowena has a tree and a bench dedicated to her son and her husband.
Family time: 'Every hour that I get to spend with Freddie is one extra precious hour'
Family time: 'Every hour that I get to spend with Freddie is one extra precious hour'
The plaque reads: 'To Phil and Freddie ... there is no death. People only die when we forget them. If you can remember me, I will be with you always.'
It's the sort of memorial that the living usually put up for the dead. But with characteristic pragmatism, Rowena didn't want to wait until she had passed away before she could tell the world how much she loved her family.
For now, Rowena is doing everything she can to extend her life. She has undergone an exhausting 27 rounds of chemotherapy, multiple operations and radiotherapy.
'Lots of people with a terminal illness talk about quality of life over quantity, but I couldn't disagree more,' she says. 'Every hour that I get to spend with Freddie is one extra precious hour. I treasure every one.'

Rowena has only months to live. Diagnosed with bowel cancer shortly after her son Freddie was born, she knows that spending time with her little boy is running out.

She is spending her last moments dreaming up imaginative ways in which he can remember her.
She set up an email account in his name, which he can access it when he's old enough. He'll be able to read the emails she's written to him during her illness, giving him insights into her life.
She recorded a CD of her favorite songs and nursery rhymes for him and plans to write some children's stories and film herself reading them.
She hand-made beautiful cards that Freddie will receive on each birthday and Christmas until he is 21. There are also cards for his first day at school, his graduation, even his wedding - events that, sadly, Rowena will not get to see.
Inside each card are messages such as "If you can't say anything positive, don't say anything at all" and "Every time you look at the sky, remember that's how big my love is for you."
Rowena has a tree and a bench dedicated to her son and her husband. The plaque reads: "To Phil and Freddie... there is no death. People only die when we forget them. If you can remember me, I will be with you always."
"Lots of people with a terminal illness talk about quality of life over quantity, but I couldn't disagree more," she says. "Every hour that I get to spend with Freddie is one extra precious hour. I treasure every one."

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