We will miss you Helane

My very good friend Helane passed away yesterday. She fought the insidious disease that is cancer for 7 months, won a major battle last October when all the tumours vanished, only to reappear within a few weeks and spread with incredible speed (I have already posted about her here).

I understand that last weekend Helane made a list of all the things she wanted to do “to put her affairs in order” before she went. She got time for only one of them, the most important: despite being wheelchair bound for the last few weeks, last Monday she travelled straight from the hospital in Waterford to the Four Courts in Dublin to hear the appeal against the lenient sentencing of the young man who was driving the vehicle when her daughter Catherine was killed in 2006. She wanted justice to be done, and Catherine’s life to be valued at more than 240 hours of community service. On Monday, Catherine’s life was considered by the Court of Criminal Appeal to be worth 15 months custodial sentence, starting that very day. As Helane and her family travelled back down to the hospital in Waterford on Monday evening, the young man headed for jail. Justice had been served, at last.

The last conversation I had with Helane was on the phone on Sunday evening. I remarked to her that I though she was a very strong woman, to have the courage to travel and face the next day in her condition. With her usual good humour, she burst laughing and said: “No, I am not a brave woman, I am a very determined woman!”

It is as if this determination carried her through the last few months. As if, once she felt justice had been shown to be done for Catherine, she could let go and allow the cancer to take hold of her. And it did, and won within 3 days.

Although I have not stopped crying since last Tuesday night when I heard she was in her last moments – and I am not the only one of her friends to do so! – the Helane I want to remember is the person I heard laughing on Sunday: she was talking to me while puffing on her cigarette, after telling me yet again, as a joke: “Well, the doc’s have said it won’t make a difference at this stage, so I might as well enjoy the poison while I can”.

The Helane I want to remember is the person who always showed concern for and interest in others, no matter how difficult life was for her. I particularly noticed this since her cancer diagnostic last May, as every time we talked, after quickly answering my questions about her health, she would always ask me about Cathal, and insisted on all the details of his progress, health and otherwise. Even last Sunday at least half of our conversation was about him! She followed this blog and Cathal’s Mammy’s one (indeed she followed my footsteps into blogland just a year ago and I know she made great friends through it) and often rung me or texted me after seeing some of his photos. When he was very sick after his open heart surgery, she kept telling me not to worry, that “her Catherine” was looking after him, making sure we would enjoy him for a very long time. So sweet of her, when her own daughter was no longer there to be “enjoyed”!

The Helane I want to remember is the person who gave me one of the biggest, longest hug I ever received, last time we met only a few weeks ago. The person whom I dreaded seeing weak and sick, and who passed on to me some much of her strength and peace that I left her with an incredible feeling of reassurance, acceptance and serenity.

And I am so glad that on that occasion I got to thank her for her friendship over the years...

But most of all, the Helane I want to remember is this woman who went through what I can safely say was a very tough life, from the very moment she was born, and yet always looked on the positive, and kept going with grace and humour, despite it all. I want to remember our long walks together along Tramore beach before I moved up to Dublin, when we talked about anything and everything, and where one Saturday afternoon she told me her full life story. I was humbled by her trust in me, but also amazed by her attitude to life despite all the adversity. Catherine’s death the following year only reinforced my admiration for her.

Determined woman, indeed!

Helane, I hope you have found peace. And wherever you are now, I also hope you have found Catherine again. But we will miss you.

PS: My thoughts are also with her two other children, barely adults themselves, who have not only buried their younger sister three years ago, but face another funeral in the same church, the same cemetery this weekend, only a few days before Christmas. A reminder that the “Festive Season” is not always festive for everyone...!

Pre-Weekend Madness

Things have been quite depressing in Ireland these last few days.

The rain and the subsequent devastating floods in the West and South are beyond belief. Lush green rainy Ireland has surpassed itself this time – I heard earlier this week that the whole Shannon river system received in 3 weeks one third of the average annual rainfall. No wonder the rivers have spread themselves so far, wide and deep! It’s a national catastrophe. I am so grateful the little nest I call home is dry and warm…

Then the report yesterday on more child abuse at the end of the Catholic clergy, and this time the denunciation of systematic cover up by the so-called Princes of the Church, often aided by the Garda themselves. As with the Ryan report, I felt physically sick…

Do I need to mention the looming and dreaded Budget 2009, less than a couple of weeks away?

And I will not talk about this bloody French “handball” that denied Ireland a place in the Word Cup – and before you ask, Yes I ALWAYS cheer for Ireland, and Yes it was so, oh so unfair, and Yes I much prefer Rugby to Soccer ANY TIME, and NO I will not talk about it again. So there!

And we are getting into the heart of winter, getting up at night, leaving home in the (so- called) morning in the dark, getting home without having seen sunlight. I do not like winter.

Added to all this Doom and Gloom, I have a sinking feeling that my addictive remission is slowly but very surely slipping away from me: you see, I am “a bit” of a perfectionist, and over time this has turned into the very dangerous disease of Workaholism. I had been very good for the last few years, but for almost a year now, as I enjoy what I do more and more, and see more and more good results from it, I am allowing myself to be sucked in… Let’s just say that very long days, and fiddling with ideas, and documents, and spreadsheets on my work laptop over the weekend are becoming the norm. The ensuing stress signs are pocking their little spikes at my brain and they are not nice.



So this morning I was not happy about tearing myself from my warm bed. Why couldn’t it be Saturday instead of Friday? My body was doing all it could to fight it, my brain was not much better, a totally fuzz. Even the scolding hot shower did not jolt me – I take Very Hot, not cold showers, I HATE COLD! Even the taste of my Xtra Strong coffee in the Xtra size cup, the smell of which should be enough to shake anyone, could not do it.

So there I was, trying desperately to focus and apply my make-up, and to do it in the proper order (… I kid you not!) when a strange sound came from the radio. By the time the DJ had explained what it was, I had laughed so much my stomach hurt, and I was not only awake, but my natural optimism had been returned, the day ahead looked bright, indeed the whole weekend looked promising.

This “sound” came from a clip available on You Tube. I later found it and watched it several times…


And I am still laughing.


PURE GENIUS!


So, in the happy sharing spirit I now feel, here it is. Enjoy, and Happy Cheerful Weekend.

Friends!

Amis!


It’s official. We are friends. And I am not the one saying it!

C’est officiel. Nous sommes amis. Et ce n’est pas moi qui le dis!


The younger we are, the easier it is to show our emotions. It is when we grow older that we learn to hide them (for all kinds of reasons) or to minimize them. However expressing our feelings at a young age can be a difficult task. Emotions are felt, where as feelings, to be expressed, imply conceptualisation. That is in itself a complex process.

Plus nous sommes jeunes, plus il nous est facile de montrer nos émotions. C’est quand nous grandissons que nous apprenons à les cacher (pour toutes sortes de raisons) ou à les minimiser. Par contre exprimer nos sentiments à un jeune age peut être difficile. Les émotions sont ressenties, alors que les sentiments, pour être exprimés, doivent être conceptualisés. Ceci est en soit un processus compliqué.


I spent some time in Cathal’s home yesterday. At one stage he and I were taking a well deserved little break from all the playing and “messing around” we had been immersed in. Cathal was sitting on my lap facing me. We were both silent, just quietly looking at each other. And then, very gently, Cathal’s right hand took hold of his left and shook it firmly once – the Lámh sign for “friends”!

J’étais chez Cathal hier. A un certain moment lui et moi faisions une petite pause bien méritée après nous être immergés dans pleins de jeux et de chahutages. Cathal était assis sur mes genoux, tourné vers moi. Nous étions tous les deux silencieux, nous regardant calmement. Et alors, tout doucement, la main droite de Cathal a pris sa main gauche et l’a secouée une fois fermement - en langage par signes qu’il apprend c’est le signe pour «amis»!


The important thing for all communication to be effective is that the message must be received and understood as it is meant when it is transmitted. So I decided to carry out my own check on this. I asked Cathal, refraining from signing to ensure I did not influence him, “Are you and I friends? Are we friends?”

L’important pour que toute communication soit effective est que le message soit reçu et compris comme il est destiné l’être au moment de la transmission. Donc j’ai décidé de faire ma propre vérification. J’ai demandé à Cathal, en faisant bien attention de ne pas faire de gestes pour ne pas l’influencer, « Toi et moi sommes amis ? Nous sommes amis ? »


And there was the sign again, right hand holding left hand, shook firmly once, but this time accompanied with a beautiful wide smile…. We are friends! We are friends! And Cathal has shown me yesterday that he can not only give his opinion on our relationship, but he knows exactly what he is talking about, because it was perfectly in context, as a conclusion of a very nice time spent together.

Et re-voici le signe, main droite tenant main gauche, secouée une fois fermement, mais accompagné cette fois d’un radieux sourire… Nous sommes amis ! Nous sommes amis ! Et Cathal m’a démonté hier que non seulement il peut exprimer son opinion sur notre relation, mais il sait exactement de quoi il parle, parce que c’était parfaitement en contexte, à la fin d’un bon moment passé ensemble.



To come back to the subject of emotions, I am always struck by the speed at which Cathal’s face can change: within a few seconds, every emotion, everything he is thinking can show, and there is no half measure. Here are some examples taken recently, in the order the photos were taken, and all within 2 minutes:

Pour en revenir au sujet des émotions, je suis toujours étonnée de la rapidité avec laquelle les expressions de visage de Cathal peuvent changer : en quelques secondes, chaque émotion, chaque pensée s’y affiche, et il n’y a pas de demi-mesure. Voici quelques exemples pris récemment, dans l’ordre où les photos furent prisent, et tout cela en moins de deux minutes :


Pretending to sulk, yet finding it hard not to let out the fun side of things at the same time (I recognise another family member in this little face…) – Faisant semblant de bouder, mais ayant des difficultés à ne pas laisser échapper le côté drôle de la situation (je reconnais un autre membre de la famille dans ce petit visage…)

Protest – Protestation

Oh, I am so cute! – Oh, je suis si adorable !

Interest – Intérêt

Joy – Joie

Sulking again (When will you ever stop taking those photos?) – Boudant de nouveau (Quand vas-tu arrêter de prendre des photos ?)

My favourite of the series – Ma préférée de la série

PS
Cathal has shown enormous progress in the last two weeks, and yesterday I could barely believe my eyes as I was watching him playing by himself or interacting with us. There is no doubt that lately a lot of things have suddenly clicked into place in his little head. Most importantly, I can see that the enormous work, time and energy spend by his Mammy daily (and the Dad) are really bearing fruit. Bravo!

Cathal fait démonstration d’un énorme progrès ces deux dernières semaines, et hier j’avais du mal à croire ce que je voyais en l’observant jouant seul ou communiquant avec nous. Il n’y a pas de doute que récemment beaucoup de choses se sont mises en place dans sa petite tête. Mais le plus important est que je peux constater que le travail énorme accompli, le temps passé et l’énergie dépensée tous les jours par la Maman (et le Papa) portent vraiment des fruits. Bravo !

Precious Moments

Moments précieux


Every Wednesday night Cathal’s Mammy and the Dad go back to school (apparently all to do with Cathal, and communications, and all that…) so Cathal and I can spend some time together, without the parents around… Yeah!

Tous les mercredis soir, la Maman et le Papa de Cathal retournent à l’école (apparemment cela à pour sujet Cathal, la communication, et tout ça…) et Cathal et moi pouvons donc passer des moments ensembles, sans les parents… Youpi !


We take this opportunity to catch up on all the news of the last few days, on all the gossip, on all each other’s exploits. We continue chatting over diner, after which Cathal demonstrates to me his latest discoveries. Then it’s bath time, followed by a story read and commented upon, one or two lullabies (in French), a big hug, and bed… preferably before the parents come back, but this is not always the case! ;-)

Nous en profitons donc pour faire le point des nouvelles depuis les derniers jours, des racontars, des exploits de l’un et de l’autre. Nous continuons la conversation pendant le dîner, après quoi Cathal me fait démonstration de ses dernières découvertes. Puis c’est l’heure du bain, suivi d’une histoire lue et commentée, une berceuse ou deux (en français), un gros câlin, et le lit … de préférence avant que les parents ne reviennent, mais ce n’est pas toujours le cas ! ;-)

Pure pleasure!

Un vrai plaisir !

You talking to me? Tu me parles ?

Reading to Marvin, the cat. Lecture à Marvin, le chat.

So, you listening to me? Alors, tu m'écoutes ?

Pretend sleep. Faire semblant de dormir.

I AM ANGRY, VERY ANGRY!

I am indeed so angry that I have decided to take action. In conscience, I can no longer remain silent. My sense of injustice has reached it’s tolerable limit. I have cried at listening to some of the stories in the last few weeks, or reading about them in the media, or on the Down Syndrome Ireland Forum website.

So today I emailed our Minister for Health and Children, and then forwarded this to my three locally elected representatives (including the “chancer” who assured himself last year that I would never vote for him – click here and then here if you are interested in the details) asking them to acknowledge my correspondence and take action on the strength of it. I have also forwarded it to the editors of four newspapers: the Irish Times, the Irish Independent, the Irish Examiner, and the Harold (simply because this paper seems to have been at the forefront of the campaign against the budget cutbacks in Crumlin).

I am not very hopeful of any feedback, and even less of any action.

But DAM IT, my anger had to be expressed.

I know that different groups have taken and continue to take different types of action to raise awareness of this intolerable situation, and try to bring about change. At the end of the day, the more of us express our concerns, in whichever form suits us best, the more chances we may have to be heard.

Because CHILDREN’S LIVES ARE AT RISK HERE!

I let you all decide for yourself what, if anything, you may wish to do on this topic. But if you can do something, thank you.

Here is an exact copy of my email to Ms Harney:


Dear Minister Harney,

I am writing to you today as a very concerned citizen, regarding the current waiting list for heart surgery in our Lady’s Children’s Hospital, Crumlin.

I expect that you will at a minimum acknowledge receipt of this correspondence, and hopefully confirm to me your position in this regards.

First allow me to tell you a little story: I am the grandmother of Cathal, who was diagnosed at birth in March 2008 with three severe congenital heart defects. I remember thinking at the time that, had he been born in a less developed country, or in Ireland but 20 years earlier, he would not have had any chance to survive pass a few weeks. But this is Ireland in the 21st century, and Our Lady’s Children’s Hospital in Crumlin boasts some of the finest paediatric cardiac surgeons in Europe. So he was lucky! Indeed, he had his first heart surgery in April 2008, but we quickly realised he was not so “lucky”: even though he was considered a high priority case, he had to be put on a waiting list as there was no room in the Cardiac Intensive Care Unit for him to go post surgery. After two weeks of a wait, he deteriorated so much that he became critical, another child who was not as critical as him had to leave ICU, and he had his life saving surgery early one Sunday morning.

This is not the end of the story for Cathal: this surgery was only an intermediate measure, to allow him to grow stronger for his vital open heart surgery. He was finally called for it in March 2009, and until he was actually taken into theatre, there was no assurance the surgery would be carried out – again, a lack of ICU beds was the problem.

In the last few weeks, increasing reports have come into the media of so many children whose open heart surgery has been delayed because of a lack of ICU beds, that I realise, once again, that Cathal was indeed lucky earlier this year! Long term, he may require further surgery. Will his luck hold out then?


As Minister for Health and Children, you are ultimately responsible for ensuring that every person in this country, including every child, has access to the care he or she needs. So how can you justify that life saving operations cannot be performed, when the staff is available and the equipment is in place and waiting?

How can you justify that “luck” decide whether a child lives or dies?

How can you justify that Our Lady’s Children’s Hospital, being the only paediatric cardiac centre in the country and as such a Centre of Excellence – a concept you have been championing so vehemently – cannot do what it is designed to do because of a lack of ICU beds?

How can you justify that, although about 400 heart surgeries are performed there every year, and although every child in the country with a heart condition is referred to this hospital, there are only eight cardiac ICU beds?

I understand that the waiting list for heart surgery is currently over 100. How can you justify putting the life of these 100 or so children at risk? The decision to operate on someone’s heart is never taken lightly, and if the consultants decide on it, it must be done.

How can you justify the mental and emotional anguish this is causing parents and other family members?

And if you wish to bring it back to budgets and financials issues, how can you justify the mismanagement of public finances these delays in treatment are causing the state? Because, in the long term, the financial cost to the state of treating increasingly sick children is going to grow. My taxes are paying for this, and I much prefer them to be used for the funding of surgery of these children now, that the extra funding of additional treatment in the future, should the majority of these children be “lucky” enough to survive.

Minister, you have been in your current position for over five years. You have had the will to effect a lot of changes during this time. Do you now have the will to ensure that the lives of children are preserved? If you have, please communicate to me, as a very concerned citizen and to the country at large that, within the next few weeks, cardiac ICU beds will be made available in Crumlin. Space for these can be found within the hospital itself; Equipment and machinery can be purchased on a priority basis as soon as funds are made available, and the extra staff recruited by simply lifting the embargo on recruitment for this particular instance. If there is a will, there is a way.

I understand that more cardiac ICU beds will be available in 18 months time. This is 18 months too late! So please answer this: do you have the will to effect a change now? If not, your position as Minister for Health and Children is no longer tenable, and you are expected to step down and let someone else, who has the will and competence, take your place.

Finally, consider this: if your own child, or a niece or nephew, was on the waiting list, would you not do all in your power to ensure they live? I am asking nothing less here.

I am sending you a printed copy of this email by registered post. As an elected representative, it is your duty to acknowledge this correspondence and reply to it.

Yours respectfully,


Name and address.


Now let’s wait and see.