30 August 2008

All the way from Alaska! Ca vient d'Alaska!

Drum-rolls please for my two favourite boys... - Roulement de tambours s'il vous plait, pour mes deux gars préférés...

Unkie Ro came back this weekend from his caving expedition in Alaska, with 2 presents for Cathal - Tonton Ro est revenu ce week-end de son expédition de spéléo en Alaska, avec 2 cadeaux pour Cathal:

A Polar Bear and his Alaskan Friends "touchy-feely" book
Un livre « tout-doux-à-toucher » sur un Ours Polaire et ses Amis d’Alaska

A baby grizzly bear (with a blue ribon saying "Alaska" just to be sure)
Un ourson grizzly (avec un ruban bleu disant « Alaska » pour être vraiment sûr)

I have three comments on this - trois commentaires:
  • For those who know Unkie Ro, don't you think that the beard suits him? Apparently, there is no option but to grow one when you spend 12 days in the wilderness, over 100km away from all civilisation - Ne pensez-vous pas que la barbe va bien à Tonton Ro ? Apparemment, on n’a pas le choix quand on passe 12 jours en pleine nature, à plus de 100km de toute civilisation, mais que de la laisser pousser.
  • I have been assured that the T-shirt is not a political statement, nor an attempt at indoctrinating Cathal, simply it is a souvenir with a difference (please Ro, correct me if I am wrong here!). On m’a assuré que le T-shirt n’est ni une déclaration politique, ni une tentative d’endoctrinement de Cathal, mais simplement un souvenir un peu différent.
  • Aren't they cute? - Ne sont-ils pas mignons?

23 August 2008

Visiting – La Visite

What better thing to do on a wet Saturday afternoon but to visit Nan – Il n’y a rien de mieux à faire un samedi après-midi pluvieux mais que de rendre visite à Nan.

NB 1: Because “we” speak two languages, this is a bi-lingual post
NB 2: Parce que “nous” parlons deux langues, ceci est bilingue.

The Brrrrr competition – La compétition de Brrrrr

Such fun! – Trop marrant !

I am the Champ! – Je suis le Champion !

It tickles… - Ca chatouille…

That was Exhausting, I need a snooze before going home –

Ceci était Epuisant, laisse-moi faire une petite sieste avant de rentrer


21 August 2008

What a difference a year makes…

As Little Prince Cathal was kind enough to publicise today’s significance for me (see today’s post from Cathal’s Mammy in Cathal's Big Adventure ), I started to reflect on the last year and its effects on my life - I won’t go too deep, promise!

Overall impression: what a steep learning curve! I have done more growing up (about time, I know!) in the last 5 months in particular than I have in the last 10 years or so.

Parenthesis opened here: Funny the way life happens in cycles? Early 20’s, major change, joined the Mammy-Club. Early 40’s, major change, re-joined the Singles-Club. Early 50’s, major change, joined the Granny-Club…. Which Club is next? Parenthesis now closed.

Key lessons learned:
- Anything can happen, to anybody, at any time. So enjoy what is presented to you today, just for the pure pleasure of it. Never refuse the cake. Don’t bitch about the taste, it could always be worse.
- What I experience every day is only a little slice of this Reality Cake. They are so many other slices in it, so many situations to be dealt with, coped with, but also enjoyed. My discovery of the world of DS and other “disability” slices has sobered up and humbled my taste buds. And I have barely passed the outer layer of icing? Bring it on!
- My slice had been quite comfortable until last March, until it got very eerie, and then re-settled itself at the edge of the comfort zone. The cake will be cut again (Cathal’s next Op) but this time I know that it’s coming. So I enjoy today’s cream and sponge, and put the hard bits to come on the side of the plate, until they need be picked up again, in their own time. No point dwelling on them now.

Scoring: 90% for sweetness and taste-bud titillating + 10% for the almost unbearable vinegar-bitterness of the difficult moments.

Conclusion: this new slice has my approval, I want more!

By way, how did a metaphoric cake join this post, today of all days??? I wonder!

Enough philosophical digression. Enough seriousness. I’m going to sit back and enjoy my special evening right now.

Here is to the next year! Cheers.

16 August 2008

Beyond the “Slanty Eyes”

The ability to see a person for WHO he or she IS, and not for WHAT he or she HAS, comes in various ways to each one of us. It may be instantaneous, it might take a long time. The important thing is that it comes.

I have been asked by a few people “in the know” (e.g. people who are closely associated in one way or the other with DS): “And how do you feel about your grandson having Downs Syndrome? ... How are you about it? … Because it can be an issue with some grand-parents, you know, older generation, different view on things…”

So let’s thrash this out.

The first thing I saw of Cathal was what I called his “Slanty Eyes” – a totally inappropriate description, I agree, but I make no apology for it, this was, at the time, the only way I could describe what I was seeing. Before I even came face-to-face (or should I say face-to-incubator?) with him, the first photos taken of him confirmed to me that yes, no doubt about it, this baby has Down Syndrome. End of! Next! Oh yes, his heart, far more important here, life threatening and all that, let’s cope with this first.

It might have been denial of the simple reality before me, it might have been the sheer shock I had (we all had) received.

When I went home later that night, I made all the calls to France to drop the bombshell that all was not well, that actually it was quite serious, and all that... I must confess that I did not know the French word for DS, it had never come up for me (and this is the language I grew up with???). The only way I could explain it was by using a word that I felt was totally inappropriate, yet I had nothing else, the “M” word! (turns out that DS in French is “Trisomie Vingt-et-un (21)”. Simple when you know!)

I then felt that I needed to “check things out” there and then. So in the early hours of the morning, I went on the net and researched Down Syndrome… Hmmm, a lot of info, too much info for me to process, and yet not enough. Along the path of life, I had acquired the over simplistic knowledge that DS = mental disability. That was about the sum of my education in this subject matter. And that night I found all kinds of stuff like deafness, poor eye sight, slow development, heart defects (HEART DEFECTS? Tick), weak muscle tone, thyroid issue (Oh! shite,this is serious! It goes beyond mental disability) and a description of notable physical features – and here come the “Slanty Eyes” again.

After the initial shock and a couple of days spent in Crumlin, trying to decipher this “heart defects” business, and relay the information to France as accurately as I could understand it, we all fell into a pattern. I was concerned about my daughter’s own health (after all, she had just given birth) and the Dad’s energy levels (after all, he had just been promoted to Dad-hood with a Bang), I offered to go to Crumlin early morning every day, to give the new parents a chance to catch up on sleep, and stay there until they were ready to come in late morning / noon. Then I could go to work and do my day’s contribution to “Ireland Inc.” – Here, a big Thank You is due to Mister Boss, who was superb and accommodated me so much! – And a big Thank You to the Mammy and the Dad for trusting me, and allowing me time alone with Cathal, those mornings were so precious.

So there I arrive one morning, around 7.30 am (to beat the bloody Dublin morning traffic!). Cathal at this stage is about 4 or 5 days old. He is sleeping nicely in his cot. I check the chart to see what happened during the night, I look at him, pick him up when he wakes up, feed him Mammy’s milk in a bottle, change him, hold him, hug him, sing to him . . . the usual bounding process. And suddenly I realise it: I had not seen the Slanty Eyes since I had come in. . . For the last few hours, I had seen Cathal, my beautiful Little Prince Cathal. Not DS and ITS features, but the child, with HIS individual features. This marks my total acceptance of who Cathal is, with among other things: DS, messed-up heart, gentle smiles, loud screams, soft skin, lovely smell of his head, kissable neck, bleu eyes, spiky hair, enquiring looks, peaceful sleepy breathing.

Just after Cathal’s birth, I rung a friend of mine to give her ALL the news. Coming to the end of the conversation, she said: “ just one little thing for you to bear in mind: don’t say that Cathal is a Down Syndrome baby, but rather that he has Down Syndrome”. I did not quite understand what she meant until that morning (thank you “Katecourt” for pointing me in this direction)

I have (kinda) gone back only once: when he started smiling, I pulled out one of the books I got on DS, and checked how much “off target” he was compared to “normal” children. I know that on the day I needed to reassure myself that it was not “too bad”! Now this has become totally irrelevant, and I naturally rejoice at every one of his exploits, just because my Little Prince cannot do anything but Great Things. He wins Gold for every one of his discoveries.

Life is so much simpler this way!

Eyes? What eyes? I am just a two week old Cutie-pie!

The eyes of a future Super Star - aged almost five months

10 August 2008


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.
- 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?

09 August 2008


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.


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!