When you look at me first, what do you see?

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remembervictoria9:

Wonderful informative blog that is also light hearted at times with emotion peeking through. For anyone to read but especially those with skin conditions. Well written blog that will open you to how it feels to have psoriasis.

Originally posted on Lost in my skin:

Do you ever wonder what people ‘see’ when they look at you?  I do. Every so often I hear that question in my mind. What do they see when they look at me? Is it my hair? Crazy, dark brown and lots of it, highlighted with caramel tones. A hint of natural curl showing on a good day or a mass of frizz when time is scarce. If not my hair, maybe they are drawn to my eyes; big and blue; with a little brown speck in one and some mischief in the other?

Or do they notice and wonder how I got the scar over my right eye? Do they spot the tell tale sign of a piercing over my left eye, or are they drawn to the deep round scar beside my mouth, that stole the place of a Cindy Crawford mole?

Maybe they catch a glimpse of…

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Ebola’s a rare disease – isn’t it?

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pinky and brain

Ebola has got me thinking.

Many people are thinking about it, many people are dying. Horrendous deaths on a large scale. Children are being orphaned and are suffering. Adults are infecting each other and health care workers. It’s spreading.

Scary shit. No doubt about it.

So of course the world starts to ask questions and run for medicines. Everyone starts to talk about it, things get done (however well) and a cure is searched for rapidly.

Why?

Healthy adults might die through no fault of their own. The indiscriminate way this disease can inflict terrible pain, catastrophic symptoms and death – makes it something people wish to fight and eradicate.

Ebola was and still is pretty rare. It spreads and there is no cure.

Victoria’s and other rare conditions are indiscriminate in who they attack. They cause terrible pain, catastrophic symptoms and death – yet it’s not something people wish to fight and eradicate.

Why not?

Leukodystrophies are rare. They don’t spread easily. There is no cure, because no money will be made by finding one.

Like Ebola, seemingly healthy adults can develop rare conditions too. Healthy adults can develop all sorts of rare stuff, (including Victoria’s condition). But large numbers won’t get it all at once and it won’t spread through human contact. Ebola is important because it’s affecting a great number of people all at once. It might spread rapidly and it may affect people in power. Crucially a cure would also make people money, especially if it continues to spread.

So..

Diseases that make people care the most, will die first.

Victoria’s birthday. Reaching out.

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Today is Victoria’s birthday. Victoria should be 3 years old today.

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There are many who have lost children and we know we are not alone in trying to understand it all.

I just hate that we are without her. There is nothing I hate more.

It seems no time ago, that we were trying to get Victoria home. It was such a dilemma. Everyone was saying home was the best place. We knew it wasn’t.

Little has changed in that time other than many nurses have taken to doing Jack and Jill nursing. BUMBLEance is around too and at least there seems to an awareness that very sick children need supports. There is more information available and of course LauraLynn is a huge success.

But still –

Presently Donegal and Sligo are regions that do not have an outreach nurse. This is because we have a paediatric liaison nurse. This wonderful lady is based in Letterkenny and has mountains of children on her books from the sick to the dying. Her remit is huge and if she’s sick or on holiday, there is no cover for her. Due to her post Donegal/NW did not get an outreach nurse when the rest of the country did.

What is a paediatric outreach nurse?

She/He provides a link between home and hospice/hospitals for families.

Their role is to help families;

  • in planning care pathways,
  • supporting,
  • advocating,
  • helping with symptoms,
  • sourcing supplies,
  • liaising with services,
  • Planning appointments,
  • Home visits – listening.
  • Someone on the end of a phone that knows your child inside out.

Of course an outreach nurse does more than the above – but you get the general idea.

At present the Irish Hospice Foundation and HSE are evaluating the service provided by 8 outreach nurses in the rest of the country. The Irish Hospice Foundation funds 5 of these nurses and the HSE 3. I have spoken with some of the outreach nurses and they are just as their title suggests – Reaching out very far and are very over stretched. There is a huge need for their role.

I know that the paediatric liaison nurse is doing all she can for families. But – Donegal needs to be on the map for an outreach nurse before there are more appointed elsewhere in the county.

Charlie McConalogue and his team are questioning the minister and requesting strongly that Donegal is considered for an outreach nurse. As the Donegal Hospice have set aside €180,000 to treat children, I presume some or most of these funds will go to home care packages.

So this is all looking somewhat encouraging. Slow but encouraging.

Victoria if you were alive and well I wouldn’t be writing any of this. How we wish you were here and we didn’t know any of this.

We all love and miss you always and everyday. xx

Thank you to everyone for their lovely messages and help all the time. We are lucky to have to such wonderful friends and families.

Being a pain the ass.

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Being a pain in the ass becomes one of your roles, when you have a sick child. Many ordinary people find they become almost torturous people to get things to happen for their child. Parents who have sick children have to become fighters, grow a second skin and become almost militant to get basic things. This bothers already exhausted, wonderfully kind people.

Because I am still in contact with people who have very sick children, I still feel I should write on certain things as they ‘appear’.

When your child is sick, some medical personnel don’t want you to have an opinion. You become ‘different’ from your friends and if you can venture out, it is a struggle.

Basically you feel like a total pain in the ass. To get things done you have to be. To survive you have to be. Then afterwards to try to get all of this recognised for others, you definitely are a total pain in the arse.

A few parents have chatted about when people stare. Staring is understandable. I do it myself. If a child is having a moment, a seizure or is crying uncontrollably, it is hard not to stare. There has been a suggestion that parents should carry cards explaining their child’s condition so that they don’t have to explain something that is painful for them. Some have said they become upset and say hurtful things to those who have been staring. This is due to tiredness, frustration and this thick skin they have grown for themselves to survive.

Some have asked me to communicate, if you want to know anything – it is better to ask nicely. Kind enquiries rather than stares, makes people feel they are not on show, but cared about. Educate yourself by asking, but not with a face that says, ‘poor you’ or ‘I hope I don’t catch it’.

I have found also on my travels through all of this, that many children look serenely beautiful or handsome and yet harbour awful struggles to have a quality of life. Many look so ‘normal’ and yet are so sick. I always felt very sick children should look terrifying- but many don’t. It can be hard to tell unless a tube is visible etc.

This video about Mitochondrial diseases, like many horrid conditions it affects children’s insides mostly and leaves them so gorgeous and ‘perfect’ looking.

http://www.youtube.com/watch?v=8PApuJs_vPA. I know of quite a few special children with this condition in Ireland.

Rare conditions in Ireland are not rare enough and I am always grateful to those who read my blog.

I am doing online courses with EUPATI a European based organisation. We’ve been asked to speak occasionally. Still I am uncertain how effective it all is. I know that today I had thought Victoria might give me a day off – but no. Lots happened today. I might get a chance to tell you about it all later, when I know where things are headed.

Victoria is still doing her magic. We miss and love you always baby boo.

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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IWI cover

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.