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 !

Please, oh please don’t!

I amended my last post with an afterthought, a little tongue-in-cheek to lift the mood. And I need to lift my mood. Because I have been feeling a bit down these last few weeks. Is it the reactions to the emotional trauma we went through two and three months ago? Is it the reality of the full blown harshness of life, as I witnessed it around me when Cathal was in hospital, just hitting me now?

I know that the revelations of the Ryan Commission on Child Abuse at the hand of so called religious institutions still have me reeling. The results of the local and European elections 10 days ago are also for me a symptom that there has been something very wrong with this country in the last few years, and that at last our eyes are opening.

But what a mess! What a sorry depressing mess!

Then today I read Cathal’s Mammy’s post about Crumlin Hospital. It stirred up all those emotions again that I felt when we were there, when I used to join her and the Dad by Cathal’s side, or by the door of ICU, in that lift lobby she describes. I suppose we all need to go through those feelings again until we can exorcise them and lay them to rest, finally.

But what has me really, deeply angry, and sad, is the situation in Crumlin Hospital. Please go and read her post for full details. I do not have the heart to go through it again here. And she says it all so eloquently – and I am not biased here, I swear!

I have seen the situation deteriorating over the last year and half. Not just in Crumlin, but across all the hospitals. My job takes me into them on a regular basis. My role and that of my colleagues is one of support to the Irish Voluntary Hospitals ,and Crumlin Hospital is one of those places where I have learned to locate the back doors, and walk the corridors more than a year before Cathal was rushed there the day he was born.

How can our Minister for Health say that no front-line services will be affected by the cuts? How can she affirm that no patient will suffer because of the slashing in funding? Every day I witness the palpable panic of those working in the health sector. How on earth can they keep providing the same level of service, keep on saving lives, when they have so little funds that anyone who is out sick, or on maternity leave, or on a (more than well deserved) holiday, is not even replaced? How they keep on working, and with the grace and patience they show patients and their families, is beyond me. And I know what I am talking about; I talk to these incredible people almost every day.

The thing is, our health system is becoming caught in a catch 22 situation. It’s simple logic: the more people become unemployed thanks to the collapse of our economy, the less contributions to the 2% Health Levy (which goes straight from our pay-package to the Department for Health, via the Revenue Commissioners) – hence the lesser the revenue for the hospitals. At the same time, the more people become unemployed, the lesser number of people maintaining their private medical insurance (which has often been paid by employers), the greater the numbers depending on the public health system. Hence the more resource needed, but with less money available. See what I mean? Catch-Twenty-Two!

If this is not depressing, I don’t know what is.

But there is something we can do. Actually two things, simple, maybe even over-simplistic, but it can add to the pressure on our current government. And maybe, just maybe, get them to reconsider the budget cuts imposed on Crumlin Hospital. After all, this is THE only cardiac paediatric centre in Ireland, one of those “Centres of Excellence” so dear to Ms. Harney and Prof. Drumm.

So to say to the powers that be “Please, oh please don’t put the lives of our children at risk” you can:

- One, sign the on-line petition to save Crumlin Hospital, it takes only a minute (don’t mind the donation request that follows your petition, once you click, after your name, you’re registered)
- Two, email all our Ministers, TD’s, Senators, and let them how you feel about these cut-backs.

Every extra voice adds up, until the whisper becomes a roar of dissent.

I don’t feel any better after typing this post. But at least, my conscience is clear, I know I am not putting the lives of children at risk…




By the way, has any one yet realised that our Minister for Health has no mandate anymore? The political party she is supposed to represent in this coalition government has been dissolved, hasn’t it? Will it not cease to exist in a few weeks? So what is she still doing at the helm of our health system? I suppose no one is willing to take on this “burning hot potato”. So better leave her there, isn’t that right? Typical Irish answer to an Irish problem…? It would be funny if it was not so tragic!

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.

GRANNY-CLUB = AN EMOTIONAL TRIPLE WHAMMY

Indeed, membership of the Granny-Club implies emotional triple whammies. If it is your turn soon, Be Warned! Let me explain:

But first, another little warning: this entry might get very emotional, tissues may be needed…! You have been foretold!

So there I was five months ago, all excited, so impatient for this first grand-child to be born. Then I was told that it was going to be “anytime now”, in a few hours like… Oooh, and there this funny business starts. I froze. Just simply emotionally froze. Suspended above myself, above any feeling, just waiting, and waiting, and waiting for the news. I thought: “Surely, once the birth is announced and confirmed, it will all burst out of me!” Well, actually, it didn’t really. Of course I was happy, of course I made all the calls to the frenchies (a lifetime away I started this immigration business that has become so popular in the last few years – all copycats! – and settled in Ireland from France, at a time when everyone was getting out of the country while a certain Charlie, wearing a Charvet shirt, was telling the Nation to tighten its belt – I must have been mad! But I am still here!), sent dozens of texts with the good news. Still the joy felt somewhat restrained, hampered… I needed to see this new little being, I had to see him, before the reality could hit me. It felt SO strange! Was it a forewarning? Maybe. Easy to think this in hindsight.

I finally got to the Coombe, after getting stuck in Dublin evening traffic, feeling increasingly anxious. Hugged my daughter, hugged the new Dad…
- Hey, where he is?
- Oh, he is upstairs, they are checking him out.
OOOKAY…
- Actually, hem…, we have something to tell you: there is the possibility he has Downs Syndrome, and also a heart murmur….
Outwardly, the practical me took over: Downs? We can see to that later. The main thing is that his heart is ok. Inwardly, panic was setting in, fast. Christ! What the hell?

Then the new Dad showed us (me the novice, Grandad J who has been around this “Grand-hood” block several times before, and my son, the newly promoted Unkie Ro) the first photos taken. And from the height of my experience with Downs (e.g. seeing people with “slanty eyes” and slightly strange features while walking around shops and supermarkets), I just Knew – Yes, it’s Downs alright!

After a while it was time for all of us to troop up to ICU, for news. What happened next is etched in slow motion in my memory, what you might call a Defining Moment. The new Mammy and Dad were shown into a room, the door was closed, Grandad J, Unkie Ro and Nan P stayed standing in the corridor, waiting, waiting. And then a sound came through that door that broke my heart, turned my life. My daughter was crying, sobbing so loud, too loud! I turned to Grandad J, and whispered “It doesn’t sound good!” and tears started coming. Grandad J just shook his head. Unkie Ro, quite unlike himself, but none of us were ourselves at that stage, did the best thing my child could do for me. He simply said “I think you need a hug” and took me in his arms… I never hugged him so hard since he grew up into the strapping young man he is now. I was hugging him, me, my daughter, the world!

And during that time, I discovered the Emotional Triple-Whammy that has brought me here: my heart was quickening, physically hurting, almost exploding, with fear, anxiety, grief, pain. While a hand was reaching into the centre of me, grabbing my guts and twisting them so tight.

And I knew I was feeling this because my own baby was hurting, and I was powerless to make it all go away – WHAMMY NO. 1.

And I knew that she was feeling exactly the same thing for her own child, and that made it even so, oh so much worse! – WHAMMY NO. 2.

But, and this was a surprise, I knew I was also feeling this because this new little being I had not even met yet was in some way a part of me, and the panic, the fear, the pain was also there for him. I was as powerless to make it all better for him, as I was for my own child, and that was killing me – WHAMMY NO. 3.

I don’t know if this happens to all grand-mothers. On this I would love feedback. I know that the birth of most babies is full of joy, with none of the shock that we all received that day. Still, this Grand-motherhood business is tough on the old feelings!

After a while, we were allowed into the room, and I could finally take my daughter in my arms, trying in such a futile way to comfort her, feeling the pain of her pain. I NEVER, EVER want to feel this again! I hugged the new Dad too, held his hand. So helpless! We were eventually allowed to go and see Cathal, in groups of two, until he was transferred to Crumlin (and for this I am grateful to the ICU staff of the Coombe for their understanding and gentleness in such a difficult moment). I could at last see him, touch his skin. He was resting nice and comfy in the incubator, he looked So Perfect, So Beautiful. Surely, surely the doc’s were wrong!

It has turned out that Cathal does have Downs, and that his heart is quite messed up. I have tried to explain to him that the Great Engineer drew a blue print for the human heart that has been tried and tested over zillions of people, and that Cathal did not need to bring in not one, not two, but three considerably important amendments to the design. On that occasion Cathal just looked at me blankly. OK, he was only a few days old at the time, but children always think they know better, don’t they?

PROMOTION TO GRAND-MOTHERHOOD

This “grand-motherhood” business is not as easy as it seems. I certainly was not prepared for the emotional, intellectual and (dare I say it?) spiritual implications of this new position in life.

In my innocence, I simply thought that I would have a new family member to love, cherish and spoil, that he probably would be “just a little bit special”, e.g. dearer to me than say my little nephews - as this new child would be “closer” in linage than they are. In other words, my thinking was all logic, and I did not have a bloody clue! Nothing to prepare me, no one told me otherwise – though I have friends who are already grand-parents, but I was not pointed in the right direction. . . BY THE WAY, thanks for that guys, you could have warmed me!

Of course, when Cathal’s parents told me he was on the way, I have overjoyed, so excited, I could not wait for the birth! I wanted everybody to know, I told whoever would stop long enough to listen that my daughter was expecting MY first grand-child – don’t mind that this was HER first child, the important thing was that this was a new adventure FOR ME. Selfish, I know, but what can you do? That should have been a clue to what was to come, but I did not really see it, did I?

I put a couple of conditions to the “Promotion to the Granny Club” (as I called it). The main one (and I sent an email to this effect to Cathal’s Mammy to make the whole thing official) was that I was not going to change, and would not be your “bespectacled-white-hair-in-a-bun, sit-by-the-fire-knitting” type of granny (not that there is anything wrong with bespectacled-white-hair-in-a-bun, sitting-by-the-fire-knitting grannies, just not my type). I was not going to change and “grown up”, “slow down”, stop enjoying life and going on little adventures anytime I can.

LITTLE DID I KNOW!

The promotion brought with it changes that I never imagined, so subtle, yet so powerful! I have changed my perspective on so many things - to name just a few:


- Grandchildren – they are not just new family members! They are so much more, as important as your own children.


- “Mental Disability” – I had never thought about it, never had to. A new world has been opened up to me by that little extra chromosome.


- The relativity of what is “Normal” – bringing such metaphysic question as “What is Normal?” and “Am I normal?” etc. . . etc. .. etc. . . Head-wrecking!


- Love as an un-exhaustible resource - I had not realised I still had so much of it in me!


- The miracle workers that keep our children’s hospitals going.


And so much more, I better stop here, I could be typing this entry all night!

Over the next entries on my blog I aim to explore what I have lived through in the last 5 months since Cathal’s birth, and update it with any new event.

I hope that it might be interesting to any grand-parent who reads it, but also to parents, as it might give them an insight into their own parents’ reaction (…. Am I being very presumptuous here? For you to tell me). And if Cathal ever comes across it, he will see how much I love him, how special he is to me. . . . Dam you, Little Prince, you have changed my life!