It’s Summer. Butterflies Everywhere!

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It has been quite a while since my last blog post.
I have had a few nudges and then a few downright slaps to get one done! So here we go;

Wonderful Carmel. cropped-banner-blog

We finally met Carmel Harrington. She puts it so well in her blog so I will put the link to her blog here. http://carmelharrington.com/2014/08/13/there-are-no-accidents-in-life/
Carmel is a special advocate for sick children despite all of her own work and family commitments.

Aunty Aishling & Uncle Conor. SONY DSC

Victoria’s special Aunty Aishling got married. She married a man who kept vigil with her at Victoria’s side many a weekend. This was after he travelled all the way from Cork! Somehow Conor stuck with his girlfriend giving all to a baby girl and putting their lives on hold for many months. Conor is one of those special souls who you just love. From when Victoria was born, he was there for her. I think Victoria had a special presence in their big day, so we felt close to her.

Angels.

I met a marvellous lady called Mary. Mary talked of angels and lots of other interesting things. Some people are sent to you -aren’t they?

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http://liamslodge.com/ http://www.bumbleance.com/

Then I got a phone call. Tony Heffernan from the Saoirse Foundation and Liam’s Lodge and Bumbleance fame. We met many moons ago at a conference when I was searching for answers. Tony is one of those charismatic men who gets things done. I am looking forward to meeting his wife Mary someday soon.
Tony and his wife Mary have asked me to be an ambassador for Bumbleance in the North West. Honoured is an understatement. Like the Heffernans and Jane McKenna there is no money for this role. They work for no pay. Tony is a mighty force and I am a little overwhelmed by his inspiring passion. He moves mountains and makes it sound like a breeze.
Tony and Mary lost both their precious children Saoirse and Liam to Battens Disease. A rare genetic degenerative disease and both are working tirelessly to ensure people don’t come up against the same obstacles as they have along the way. Please check out what they do.
Link here; http://liamslodge.com/

Their latest fundraiser is in Ballybofey tomorrow Saturday the 13th of Sept. http://www.donegalnow.com/article/5016

Please don’t forget Victoria and her magic. There are so many butterflies this summer, they make us smile. Thank you for helping us smile – while missing you every day Victoria. Xxx Love u.

When is it acceptable to give in to death?

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Yip I’m still on about dying. Yawn! I know. However a few things are on my mind…

Taking drugs seems like a cop out?
Some people and parents feel that giving in to medications is taking the easier option. In my opinion -It isn’t. Drugs have side-affects. Drugs don’t always work, but trying to get peace for your child/loved one, is not a cop out. Sometimes fighting with doctors to stop intervening is another issue. Understanding that your child is dying, is not a cop out.

Should you allow yourself to think that your child is dying?

People talk about fighting until the end. Not giving up. Not letting go. Not giving in. All very positive and understandable but.. It seems doctors can keep going, they can find plenty of alternative treatments. When there is no cure, these will maintain life and extend life. Doctors understandably go usually with the patient’s wishes. They don’t wish to point out or think of the inevitable. The questions, ‘how long is left? Or she is dying? Are all unanswerable, as it is all about – variables. It just depends. All depends on interventions, on the patient’s will, on the condition’s viciousness and of course on the treatment and how patients’ bodies cope with it etc. None of us ‘healthy’ folks know how long we have. Why then is it when we hear terminal illness – we all want to know how long? (I was obsessed with this question). I know now – it just depends.

Should we fight to the bitter end?

Long ago people died quickly, rapidly after a fairly mundane illness after days, maybe weeks. Medicine could do little to preserve lives or their suffering. Also there were rituals and a process to prepare people for the end. Now we can be around for a good deal longer, and must not consider giving in to death. This might seem like a good thing… Giving people extra time, might prepare them? There might be a miracle? It might help their loved ones understand? Mm ..Nope. It doesn’t. There are no fool proof processes to prepare anyone. Extra time needs to be quality time too. People talk about taking pills or doing away with themselves at ‘the end’. Yet we are also told to fight until the end. There are mixed philosophies about death. What’s yours?

When is it acceptable to stop fighting death?

When is the end? Is it 6 months left? How do you know when it is the 6 month mark? No one can tell you – as it depends.

Should we give loved ones ‘permission’ to die?

I feel it is important for us to understand that people need ‘permission’, not to fight until the very end. Stopping treatments and interventions that prolong life, is a difficult decision. When is it best to do this? It is an impossible minefield of ‘what ifs’.

Accepting death is coming – is not a cop out. Is it?

Children especially must find this so hard. No matter how small, they must sense their loved ones willing them to fight. Willing them to live. It’s terribly difficult to say to your child that you give them permission to die. For me, it’s not a cop out. It is a love that surpasses your own needs and wants. It says, “you don’t need to be strong for me. I will be strong enough for us both. If you need to stop this fight and be at peace, that’s ok. When you are ready, we will understand.”
I know a few who have been in this position recently. In my opinion;
• It does not mean, they (or you) are not doing their best for their child.
• It does not mean, they have given in.
• This is not an issue of wanting peace for themselves. Nothing will ever bring proper peace to a parent who has lost a child.
• It does not mean, they will not keep fighting for their child to get the best care.
• Our will to fight for our children might also be our will to let them go when they are ready, if that’s the best thing for them. Many possibly wouldn’t agree.

Is it ever acceptable to give in to death? Could you tell your child, that it is ok to die?

Stop Waiting For Friday.

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Hold your hands up high, lean back into the breeze, feel the sun on your face and breathe. Let happiness sweep in a smile across your face. Sigh heavily, think of Victoria or something wonderful and…

Just be.

“Stop Waiting For Friday.”

Victoria taught me that there may be no tomorrow.

Somehow a mother, Carmel Harrington, a new Irish writer, found Victoria and my blog. Strangely, I didn’t register that she had a creative writing group online, until the time was right.

Imagine, Write, Inspire is Carmel’s bunch of ladies, who write. They took me in. We write every day. We post challenges on Carmel’s private Facebook page – writing challenges, big and small. Enjoyment, chitter chatter goes over and back and we – just be.

It’s great! I write naughty stuff, nonsense, fun things. I write what I want. It’s challenging, enjoyable and takes me away, every day on adventures. One adventure exploded recently, into an eBook. We wrote a short story of 2,500 words on the theme “Stop Waiting For Friday”. The reason behind the theme is of course to live in the moment, enjoy the here and now and live for the little things. Be inspired and be alive every day.

Well… I tried everything to write a funny, naughty story that fell into the comedy side of life. Nothing I wrote, was remotely appropriate.

Suddenly, Stevie appeared on my page one day and wouldn’t go away. Stevie is the little baby in my story, “Loving until there are no more Fridays”. He is not Victoria. Stevie is Stevie.

He is only 2 months old, he has no label of a diagnosis, he gets seizures, won’t suck and has multiple problems. He doesn’t have nursing care, none can be found. He is at home with his parents Edele and Phil, somewhere in Ireland. His story is not a true one, but what happens could be the truth. The reason Stevie got onto my page, I will never know. I didn’t want him there, as I wanted to write fun stories.

Stevie stayed. He got into the book. He’s there. http://smarturl.it/SWFF

The other 21 stories are from the group. We are a diverse bunch, so the stories are diverse too. In having a story about a life limited child in such a publication, I felt it would reach awareness to a wider audience.

If you like the book/story please write a review and pass the link along.

One last thing – In the post today, I got the nicest letter and draft CD of music. It was someone who is following their dream and making music because Victoria taught them how to “Stop Waiting For Friday.” The letter enclosed, told me it was music, for me to write by, it was inspired still, by a little, gentle spirit.

We love and miss you always Victoria. xx

Ps If you don’t have a kindle – you don’t need one. Download the kindle app for your computer or device here http://www.amazon.co.uk/gp/feature.html?docId=1000425503 Even if you don’t download our book, you will have a kindle on your own device. Handy.

A safe death.

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Victoria died on the 27th of June 2012, that’s two years ago. Two years!

Staring at her photo I think of her perfection at birth. The joy she brought to everyone, and then … the torment she suffered.

For many hospice care and palliative care is not something they want to consider. I read the wonderful book by Marie Fleming recently “An Act of Love.” Strong, wonderful Marie had MS. She had an amazing life. Near the end of the book she was dying. With MS it was a slow, painful death. She wanted for there to be a ‘right to die’ in circumstances like hers. As an adult, she wanted the right to choose the time of her death and how it would be. As she was incapacitated there was no way she could die without help. This worried her and her partner Tom a great deal. They won her case but never used the right to end Marie’s life. Marie and Tom highlighted a ‘need’ for choice about dying safely.

In the book she seems to not be in favour of the concept of palliative care for herself (I felt so anyhow). It had negative conations for her. I didn’t think of LauraLynn as hospice care. To me it was a beautiful place with nurses and doctors to care for our baby Victoria.

Marie became passionate about her right to die with dignity, and like her we became passionate about Victoria’s right to die with dignity. It is a case of having the options.

Euthanasia is a controversial topic. Marie Fleming and her partner Tom made Ireland think and talk about it. This in itself was ground breaking. They also took on a hugely controversial court case and dealt with a deteriorating condition for Marie. Amazing people. 

When Victoria was diagnosed I looked at her often and thought, ‘if only I could end your suffering.’ I did not end her suffering. I wanted Victoria to live. She couldn’t see, she wasn’t awake, she was in constant pain with terrible side effects to drugs and feeding. She had no quality of life. Still, she was beautiful and she was Victoria and our daughter – so I wanted her live. Selfishly, I wanted her to live for us. For her – I wanted her suffering to end. Most of all I wanted her death to be a safe one, free from as much suffering as possible. For so long it seemed like we couldn’t even give Victoria a safe death. This seemed so impossible for us to achieve.

People talk constantly about their rights. Do people ever think about their right to die safely?

When I say ‘safely’ – I mean die with as little suffering as is possible. To die peacefully. We talk a lot about ‘The Right to Life’. What about the right to a safe death? When Victoria received palliative care in the hospice her quality of life increased as much as it could. When we found LauraLynn, I realised Victoria now had the possibility of a ‘safe death’. Before this, it seemed impossible. The quality of life is one thing, but what about the quality of death?

When does life become so intolerable, so painful, so in need of being ended? Is there such a time? I suppose again it’s all about choices. It’s about living and dying with dignity and what that means to each family or person.

If we can provide truly great palliative care for all citizen regardless of age, condition, financial status etc (with supports for the family), then the issue of euthanasia decreases slightly. The fear of going ‘it’ alone, the management of pain and other horrendous symptoms is planned for, medical expertise is at hand, nursing respite is the norm. People have stimulus, company and love. If all of this is present – at least the quality of life until death is increased. The dignity of life is increased and death is hopefully a ‘safe’ one. I know that thanks to children’s hospice care Victoria progressed to her death in safety. Although dying, she had a life that was the best as it could be. Dying isn’t pleasant but sometimes we need a safe place and way to die.

When I hear the screams at the beginning of Victoria’s condition and then remember how she slipped away with a sigh – I cry… but I am thankful that Victoria had a safe death. When we know death is coming, why is it wrong to want a safe death for the ones we love most?

We love and miss you always Victoria. xxxx

 

 

 

 

Wrong eh?

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It has been a good while since the last blog post. Strange how days flit past and time doesn’t stand still when you want it too. I don’t want to be without Victoria for days, months or years. But – it happens.

For those who are interested, she still is doing little bits of magic. I smile when I think of it. I have been told to stop saying about her magic – I sound cuckoo apparently. Don’t care!

All those who love her know what I mean. Lately, I have been doing some talks to schools and on medical study days. Lectures really. All about Victoria. These make me remember and that’s good. I hope they make a difference. Explaining and highlighting rare disease is one aim. Also trying to articulate the pain and the loneliness in hospitals to nurses and doctors is another. Good thing too – is they kinda have to listen!

Online lately there’s still lots happening with websites and promoting palliative care for kids. The All Ireland Palliative Care ‘Hub’ is being produced. A website with information for families. It should be a great resource. It features Victoria and also some documents I have put together. LauraLynn is still to the fore too and god love them they still are in touch regularly.

Ray D’arcy’s Half Million Half Marathon saw my brother and his friends going to Dublin. They raised almost 3,000 too and met Ray himself. Well chuffed! Again special people rallied behind Victoria and spread the word and raised so much.

In relation to Donegal and Sligo perhaps getting more services, I have more hope. The study day I spoke at gave me this hope. Medical professionals showed great interest in children’s palliative care. Over 60 attended. Constantly Donegal and the NW show great willing and interest in making a difference in short lives. We need to be next on the list for more community and home care packages. If we in Donegal wait until they reach us – we will be last!
It maddens me when people who should know better say, ‘Well only a few children die in Donegal every year.’
Really? Are there no other very ill children? And why do one or two children not deserve the very best care opportunities too?

We might never get a full hospice. Inpatient care in hospices is too expensive ( I know! This makes me mad too!) but we might get more nursing hours, more connection to expertise, more co-ordinated care with hospice back-up? Politicians are showing interest.

Hospice care is not about end of life. If we could get that across it would help. Hospice should help people from the beginning of a diagnosis of a life limiting illness. Families can and do manage but we should have help for them too, in the darkest days of their lives. We cannot imagine there being no adult hospice care now – yet we don’t push for our children to have access to hospice? Adult and children hospice are different but… should have the same standing.

We don’t expect parents to give birth to their children without medical help, yet it is expected that parents will watch their children die without proper supports.

Wrong eh?

Is there a shelf life for grief?

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Is there a shelf life for grief? I don’t think there is an answer to this question.

When does it become burdensome and annoying to mention a loved one that’s gone? I am curious about this. Genuinely, does it become a, ‘Oh no! Is she still harping on about that?’

Are people ok with the ‘odd’ mention? Then, how ‘odd’ is the ‘odd’ mention? Is it ok every time you meet someone? Every day?

Mainly the worry is for the person who has gone. The balance is difficult. You want them remembered but – you don’t want to annoy people with their memory. The memory of them is precious. It’s difficult. What is acceptable?
In days gone by, a dead person was briefly mentioned with a, ’God rest’em’. Mostly these were people with full lives. I never heard of dead children too often. Maybe I did?

It comes maybe from wanting to do everything right. You want to do right by your loved one, right by yourself and family and right by the people around you.

You will never seem to do the right thing by everyone. So why try at all?

I can sense every time I post, that some analyse me. Sometimes it bothers me, mostly it doesn’t. I know some read it to knock me. I have actually found people connected to palliative care professionally, to be the most hurtful about me blogging. (This is possibly because they don’t read the posts and don’t mean to be hurtful.) There seems to be a sense of, “Why are you still wanting to help? It is not healthy for you to still immerse yourself in this world of dying. You should get on with other things.”

I get that.

They don’t seem to ‘get’ though, if I get on with other things, something pulls me back. It’s all very strange. Also I am told not to say certain things as it makes me sound – well like I have a screw loose! Don’t we all, in some way – not conform to the norm?

We tell children to express how they feel. We ask people how they are? Yet- we don’t really want either. Adults should not bother others with their feelings. We really don’t want to hear anything other than – ‘I am grand. How are you?’ to our greetings.

I get that too.

Everyone has their own grief, troubles etc and maybe that’s enough for them.

I suppose that’s why all to do with her memory is forward moving and positive. When we mention her, it is usually in a way that mentions all that is being done in her memory. I have to say no one has given the impression I should not talk about Victoria. Everyone is very supportive, but sometimes, I want to say, I miss Victoria and leave it at that. We don’t always want to be positive. Time has passed.

I hate the feeling that they may be a ‘shelf life for grief’.

We love and miss you always Victoria. XXxx

Victoria’s Ruby Rouge Ball 28th March 2014

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Rubbing my ruby red nails I try to find a way to write our next post. Tapping out meaningful words might be hard to do today.

Lead on little one…

 

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Remembering Victoria clearly can be harder these days. Images blur and muddle and feeling her close is more difficult. I know you are there baby boo but sometimes …

When your baby girl is gone almost 22 months, you would think that she may be forgotten by many. Yet, last Friday we walked into a black tie ball of 146 people decorated with her name. Victoria’s memory and legacy lives on. It is with massive pride and gratitude we thank Brian & Collette for this special support.

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Butterflies fluttered from the walls, on the tables and in the dim light from the chandeliers. Balloons and graphics on tables and the podium told of our princess – whom it was all for. Moving me to a butterflied tummy and tears often, the night took off in a pink spotlight from the stage as Collette welcomed the stylish guests. The wine bottles were adorned with Victoria’s Ruby Rouge Ball labels, sweets were contained in lighted butterfly boxes attached to gold coloured balloons.

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Dean Martin and Frank Sinatra were in the room with us all as we ate our meal, through the tones of the a male singer.
The mystery prize draw, the ballot prizes and the atmosphere were electric. The pop of balloons and the squeals of winning the prizes inside, made us all feel the night was in full swing. The thought of having to speak in front of so many strangers made me nervous. The fear of crying, the fear of saying too much and of not making sense, sloshed together with an odd good sip of gin.

The little video clip of the Northern children’s hospice Horizon House and wonderful Jayden’s mum Janine was first. Standing in the wings of the stage, watching the video clip, Jayden’s mother Janine and I clung to each other. Both of us passionate to do our children and the hospices proud. We both are so in love with hospice for what it did for us and we both wanted to do our might to make others understand this.
Collette, Janine and I hugged together as we watched the videos we hoped would make a difference. Janine spoke bravely for the first time. We didn’t really overlap in what we said which was not planned at all. Being me, I wanted to say so, so much and tried to keep it brief.

Victoria was the centre of it all. It was Victoria’s Ruby Rouge Ball. This is really her third black tie ball. Collette and Brian Kielt’s generosity of spirit and commitment to children’s hospice knows no bounds. Their spectacular night raised £16,690! For those new to her story, Victoria’s legacy is rather huge. Fundraising in her memory is reaching well over the €200,000 mark.

The entertainers lifted the mood and had everyone dancing and enjoying themselves. Happiness in the midst of sadness.

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Victoria lead the way for us all to be at the Ball, for us all to know there is nothing much for children like her. Victoria gave me the words and she gave Collette and friends, the passion to help in such a fabulous way. I hope she is happy where she is these days with what she has achieved.

I beamed on Mother’s Day, as I felt our little one has touched so many. Yet of course inside my heartbreaks a little more each day. People have asked me does it get easier? I simply say – no.

Victoria is not here. In one heartbeat, I would take her place, wherever she is and let her live and be healthy. I hope where she is, is the most spectacular place. Victoria and children like her deserve the best. I day dream that herself Leo and Katie are up to mischief poking us all who love them, into ways in life that will protect and help.

I think of children’s hospice as a school for butterflies. Some children need a safe place to learn how to turn into butterflies so that they can fly, fly higher than us all.

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Victoria’s Ruby Rouge Ball in memory of all, was simply the best. Thank you one and all from the bottom of our hearts. Thanks to all, our fragile Butterflies are safe for a little longer.
Even though life moves on …. We love and miss you always Victoria. xxxx