Better not ask the reason why

Three years ago, on a beautiful Saturday evening on the 15th July, a young, vibrant, talented girl called Catherine, with nothing in front of her but Life, lost hers by the side of a country road near Waterford. She was killed as the 16 year old driver lost control of the car she was a passenger in.

Catherine was 13.

I will never forget the shock of the phone call I received the next morning. I was numb for days. Numb for the loss of such a young life in such a stupid and unnecessary way. Numb for her mother H., a dear friend of mine, as I vainly tried to comprehend a fraction of what she must have been feeling.

A few weeks ago I received another phone call from the same common friend who had rung me 3 years ago: H., Catherine’s mother had just been diagnosed with cancer. Without warning, without a hint that there could be something there...

The numbness took hold again. But it was slowly overshadowed by a question, creeping into the recesses of my mind: Why?

Why pile so much on the same person? On the same family? And how much can someone be expected to cope with?


I had to quickly set this aside. At the moment my friend does not need my questioning. She needs the support of all who love her. She needs our strength, our encouragement.

And to be fair to her, she has been so open about it, right from the start, that I admire her for her honesty and her courage. And here I want to publicly salute this in her.

I have felt so helpless since this news. Because, when all is considered, and said, and done, there is absolutely nothing I can do to fight this most insidious and sneaky disease and its onslaughts on her. So I did the only thing I could think of. I waited a couple of weeks for H. to get over the worst effects of the first round of treatment, and then went down to Waterford this weekend, just before she goes back to hospital tomorrow for the second round. I stayed with another friend, and three of us met up with H. on Saturday to spoil her rotten for the day. Unfortunately the weather did not cooperated – so much for the Sunny South-East! What should have been a beautiful touristy drive along the River Suir from Cheekpoint, to Passage East, and onwards to Dunmore East, with a stop in Woodstown for a walk on the beach, turned into a soggy drive with the occasional glimpse of scenery when the fog and the lashing rain abated somewhat. But we did spend hours together, chatting about this and that, from the most serious to the most frivolous of subjects, catching up on all our respective news. And we treated ourselves to a nice leisury meal in Dunmore East, though we got quite drenched running in from the car, and back out again several hours later. I suppose this was also part of the fun of the day.


Because it was a fun day, being together, laughing (and the odd time crying) together. And this was the most important thing of all. H. is not alone. She has people around her who care, even if some of them are not geographically as close to her as they would like at this time.



The reason “why” is not relevant at the moment. What is relevant is the support and love we can give her.


H., I know you follow this blog. So whenever you have a look at it again, and happen upon this post, think of this windy, rainy, yet oh so lovely day we had yesterday. Until the next time my friend, take good care... ;-)

Where did it all go?

From my first hand – and first time – experience of the Women’s Mini Marathon a week ago, I have been mulling over an impression I got on the day. I remarked on it to Cathal’s Mammy as we were making our way through the crowds, passing some, being passed over by others. And it is this: baring two exceptions, all the women I saw on the day were wearing T-shirts of organisations that provide support and care for what I would describe as “vulnerable” people. And all these are based in Ireland.

I did see two women walking for Amnesty International, and two others walking for an African aid organisation. But every other woman I saw was walking, jogging or running for:
either anyone of the three main paediatric hospitals in Dublin,
- or a specialised ward in a regional hospital (usually cancer),
- or Cancer research,
- or Breast Cancer – or a number of other organisations associated with this
- or their local hospice,
- or Heart Children
- or the Irish Heart Foundation
- or various Alzheimer foundations
- or Down Syndrome (DS Ireland and the Dublin branch seemed to be well represented),
- or special schools for Autism (Saplings and ABA in particular),
- or schools for other special needs
- or…

Do you get the picture? Basic needs, such as health, such as education, where the state should be providing in full. Basic needs that are in fact provided to the bare minimum, and for which ordinary people feel they have to take the matter into their own hands and ensure everyone gets the level of service they are entitled to. It is worth looking at the event website, and in particular at the list of charities that have used the marathon in previous years to raise funds. The numbers are staggering.

I was watching a programme on Setanta Sport last week, all about this mini-marathon (in fact I did not get to watch it all, but most of it at least) and my unease was confirmed when one of the event organisers said that they estimated over € 14 m was raised last year by charities through this one afternoon alone. Personally, I think I could be more. Quick maths: 40,374 women completed the race this year. If everyone of them raises an average of € 500 each (it’s do-able, I am pleased to say that I am well over this figure by now) this bring us to over € 20 m ! ! !

But my unease is heightened by the fact that women felt the need to raise € 14m LAST YEAR, when the going was good, when the economy had only barely starting to slip, when we were still enjoying the roar of our Celtic Tiger. And they also did it throughout the previous years, when the money was flowing around, when for several years the tax intake far exceeded the state spending needs, giving our nation a budgetary surplus for the first time in its history.

For god sake’s, for two years running, Grafton Street in Dublin had the privilege of boasting the highest retail rent rates IN THE WORD, after 5th Avenue, New York! Is this being rich, or is this being “rich”? Ireland was no longer the poor relation at the edge of Europe.

Where did the money go? Where did this surplus end up? Like the huge downpour of a thunderstorm, has it been sucked away into the bowels of the earth? Or into the sewers of our insolvent banking system?

And now that the Tiger is only tiny little kittie, what is going to happen? How will all these organisations that CARE for the less healthy, the less able, the less strong, find their funding? In fact, why do these organisations exist? Should not the surplus share of tax euros over the last few years have been used to eliminate the need for them, and enable the state to do its job and CARE?

Ireland as a nation is well used to survive hardship. The Great Famine and its long felt consequences made sure of that. The Irish have the reputation of being the most generous people in the world, contributing more per capita to charitable organisations than any other nation. But are we being taken for granted, simply because this is what we do?

And the irony is that women will walk, jog and run for charities again next year, and I already know I want to be with them.

I do love this country, I have been here for over 30 years, by choice, I have made my nest here. I have adopted it and I think it has adopted me. But sometimes, things just don’t make sense.




Having said all this, you too can contribute to a local charity, all to do with Autism, if you need to change your phone and are in the market for a “smart” one. Check out Autism Action: for the month of June only € 10 of your purchase could help make a difference. Mean corporations giving money away…? Yes, it’s true!

Update on this post:

I had not meant for this post to be “party” political. And our local and European Elections last weekend had no influence on it. However, it is political, of course!

In a weird coincidence, a few minutes after reading Lisa’s comment, I heard a song on the radio, one I particularly like. But today it just seemed so appropriate! Replace Lily Allen by the Irish Nation, and “her man” by the current government, and what do you get?


“ It’s not fair, I think you’re really mean, I think you’re really mean…

Oh it’s not fair, it’s really not ok, it’s really not ok, it’s really not ok…
Oh you’re suppose to care, but all you do is take, yea all you do is take…”

;-)

Bubbles, bubbles everywhere…

Des bulles, des bulles partout…

Cathal is recovering, very very slowly but very very surely. His parents keep a vigil by his side in ICU, and I keep a vigil by the phone. It’s been a long few days, but all the messages we have received have been so heart-warming, and of great help.

Cathal se remet, très très doucement mais très très sûrement. Ses parents veillent à ses cotés en Soins Intensifs, et je veille près du téléphone. Ces derniers jours ont été longs, mais tous les messages que nous avons reçus nous ont fait chaud au cœur et ont beaucoup aidé.

It is amazing to think that people around the world, who have never met him andonly know about him through the medium of the internet, have been thinking of him so much.

C’est incroyable de penser que des gens autour du monde, qui ne l’ont jamais rencontré et ne le connaissent que par le biais de l’Internet, ont tant pensé à lui.

In particular I want to mention the French side of the family, who have been so supportive. All the Super-grand uncles and aunts, all the 3rd and 4th cousins (is that what they are? I get mixed up!) who have not met him yet, and have emailed me so much in the last few days. Some party we will have when they finally get to see him!

En particulier je veux faire mention du côté français de la famille, qui a fait preuve de tant de soutient. Tous les Super-grand oncles et tantes, tous les grand-grand cousins (est-ce bien ça ? c’est si compliqué !) qui ne l’ont pas encore rencontré, et qui m’ont envoyé tant d’emails ces derniers jours. Quelle fête nous ferons quand vous pourrez enfin faire sa connaissance !

So, as a thank you all, here is a video clip of the Little Prince himself.

Donc, pour vous remercier tous, voici un clip vidéo du Petit Prince lui-même.



Last Saturday, a week ago, the day before Cathal went into hospital, we had a quiet little celebration: early birthday presents, cake and singing. And a fun game with bubbles!

Samedi dernier, il y a une semaine, la veille de l’entrée de Cathal à l’hôpital, nous avons eu une petite célébration tranquille: cadeaux, gâteau et chanson d’anniversaire en avance. Et un jeu sympa avec des bulles !

The Mammy blew the bubbles with a special little gun, the Dad took photos (warming: flash photography on the clip!), Unkie Ro spoke in a funny voice about Cathal’s first tooth, and Nan shot the whole scene.

La Maman faisait les bulles avec un petit pistolet spécial, le Papa prenait des photos (attention: des éclats de flashe sur le clip!), Tonton Ro parlait de la première dent de Cathal avec une drôle de voix, et Nan enregistrait la scène.

Calling All Grandparents

Becoming a grandparent is quite an experience. First you realise that you are passing into another “generation”. For someone like myself who has always felt that, despite an apparently responsible outlook, I never really “grew up” (whatever that is supposed to mean, I’m still wondering), it feels very strange indeed.

Then there is the exciting prospect of being able to do with this child all the things you might have missed out on with your own children (because of constraints of time, money, and generally speaking day-to-day life). Then there is the temptation of spoiling the kid absolutely rotten, while not having to deal with the consequences, as the child is nicely but firmly given back to his or her parents to sort out – it’s their job after all, I have already given to this role, thanks very much!

The whole thing definitely appealed to me, and I found my daughter’s pregnancy almost too long to wait… and when Cathal was born, everything was brought into a focus none of us had any idea about what so ever. Personally my knowledge of Down Syndrome was scant. As for his heart condition, I had to take a major refresher course in biology at lighting speed.

Two things struck me most at the time, and are still valid today, almost 10 months later (yes, only 10 months, and what a journey it has been!): My thirst for information, to understand, to comprehend. And my feeling of utter powerlessness, as I had no idea what I could do to help and support, not only Cathal, but also his parents. I also needed to talk to someone who was “in the know” and who understood. Being the person I am, never letting leaves lie for too long on the ground before kicking them up to see what may be underneath, I got information where I could find it, I searched for support for me to be able to support Cathal’s Mammy and the Dad, and I made contact with an excellent listening ear…

My experience so far has shown me that Grandparents have a role to play in their grandchild’s life, especially if that child is so precious as to be 101% perfect (to quote Cathal’s Mammy). But they too need information and support in their special role.

To this effect, Down Syndrome Ireland are absolutely brilliant to organise the following event:

DOWN SYNDROME IRELAND
GRANDPARENTS INFORMATION DAY

Where? The Trinity Room, The Gresham Hotel, O’Connell St, Dublin 1.

When? On 14th January 2009 - from 10.30am to 3.30pm

Facilitated by:
May Gannon - Counsellor (DSI)
Joan Murphy - Clinical Co-ordinator (DSI)
Grainne Murphy - Independence Officer (DSI)
Pascale Claes - Grandmother ;-)

DSI tell us that: “ALL GRANDPARENTS WHO HAVE A GRANDCHILD WITH DOWN SYNDROME ARE WELCOME”


So please pass the word around, encourage your parents to come (even come with them yourself if you want…)

Just a little reminder: DSI also ask that you “please phone the National Office on 01 4266500 or email info@downsyndrome.ie to confirm your place”


Hoping to see great crowds there on the day! :-)

Ps: Many thanks to three great dads who plugged this event on their blogs, each in his own inimitable way. In no particular order, I refer to: Jacob’s Dad, Ava’s Dad and Noah’s Dad.

The Iamonly Syndrome… Take no. 2

Most of us know someone afflicted by the Itsonlyme Syndrome. You know: the phone rings, you answer, and you hear this lovely voice saying: “Hi. It’s only me!” I am related to such a person. My standard answer has been: “actually, it’s not only you, it’s you. And hello there!”

It is amazing how human beings can minimize their own worth, and present themselves as lesser than. And this is particularly true in this country, where the once all powerful Church made sure of that! – Note: I am not passing judgement here, just stating what I see as a fact.

To my horror, I have discovered that I too am afflicted, by a variant breed of the disease, the Iamonly Syndrome.

It started to manifest itself when Cathal was in hospital the first time, just after his birth. After the first two days, we all fell into a routine, and I went in very early in the morning to “look after him” while Mammy and the Dad were trying to catch up on much needed sleep and get “sorted”. I used to meet Cathal’s day nurse soon after arriving. She would introduce herself, and I would do the same: “Hi, I am P. I am only Cathal’s grandmother.”

Yikes! It did not feel right, yet it blurted out, uncontrollably.

And day after day, every time I met a new nurse, the symptoms flared up again.

The same thing happened when I met the Cardiac nurse. Cathal’s Mammy had pointed her out to me the day before. On this occasion, seeing that she did not seem too busy, I approached her, and heard myself uttering the dreaded words: “Hello, I wonder if I could have a quick word with you. My name is P. I am only Cathal’s grandmother, but I would like to talk to you about…”

The amazing thing was that every one of these people completely ignored the symptoms, and responded to me as if I was important. They seemed to be actually happy to take the time to talk, and even came back to finish a conversation that may have been interrupted by another patient needing attention. Every one of them seemed to give value to my presence there, to encourage it. I was made feel that, only was I not a nuisance after all, but I was welcome.

The start of my recovery was the morning the news came that Cathal could go home. There I was in his room, holding my Little Prince fast asleep in my arms. In comes Mr Consultant Cardiologist himself, who introduces himself, hand extended to shake mine, does not ask who I am, but blurts out: “Good news, Cathal can go home today!” He then proceeded to explain to me what could face Cathal once he got home, and how to react if he turned blue (… meaning bring his knees to his chin, to force his lungs and heart to react, and then bundle him into the car and drive like hell back to the hospital!) “Don’t even call for an ambulance, no time, just bring him in”. I had to interrupt him and make him realise that this was only the grandmother he was talking to, and that it might be wise to wait for Cathal’s parents to arrive and explain all this to them. “I know who you are” says he with a smile, “and they have already been told what to do. In any case the Cardiac Nurse will talk to them before Cathal goes today. But it is important that you too know what to do. This could happen when you are on your own with him.”

This is when I realised that I could actually find myself involved in such a situation. The fact that Mr Consultant Cardiologist would:
a. trust me with the good “ok to go home” news, and
b. trust me with knowing what to do “just in case”
was a great boost. At that moment, I was not only the grandmother, I was the grandmother.

Since then, my illness has been in remission, most of the time. But the symptoms have slipped out on a few occasions, usually while meeting people “in the know”, when I feel such a novice (especially people from DSI).

At the end of the day, I do have a role to play in Cathal’s life. And that role has its own importance. Anything that can enable him to discover the very best of himself is worth my time with him, and my love for him. And anything that can be a support to his parents, to enable them in turn to support him, and to give them respite when they need it, is worth my time too.

In fact that respite is quite selfish on my part too. I just love time alone with him, I treasure these moments so much. Because Cathal is “booby fed” they are not yet that numerous, but I am waiting in the wings, ready to bounce in…

And what better thing than to have a child fighting sleep in your arms, listing to your voice, little hand resting on your face, sleepy eyes lost in yours. Total trust and abandon.

I am learning that as a grandparent I am entitled to talk to the “professionals”, those “in the know”, in order to better understand what Cathal and his parents are facing, or might have to face. I am entitled to sign up as a member of DSI, and to join the DSI Forum. I am entitled to go to Lámh classes and learn to sign. I am entitled to contact and meet other parents and children with DS, to broaden my experience, my understanding.

I have done all these things, and am being enriched by them. Also I am being reassured; myths, doubts and uncertainties are being dispelled; hope is being reinforced.

I recently attended a very informative meeting organised by the Louth/Meath branch of DSI. About fifty people were present; from my discussions before and after, I think I can safely say that I was probably the only “non-parent” there. I found this disappointing in a way, but I can understand that everyone’s reaction might be different. Mine is simple: I need the contact, I need to be involved in some way.

While finding the balance and respecting Cathal and his parent’s boundaries of course.

I recently started the Lámh course with the Mammy, and was so glad to see that, out of 10 participants, 4 are “non-parents”: one aunt, one uncle, one godmother, and then yours truly. Not bad! This is a great demonstration of “action support” for the people we love.

People with DS need a little extra help because of their little extra chromosome, and this is before all else the responsibility of their parents. But it is also the responsibility of the whole family. Every thing in life begins at home in the family unit, then continues in the extended family, before it can flow onto society at large.

My point is: all of us family members can show “action support”. It is so well worth it.

And we are all worth it!