A Busy Day and Some Wishes

Une Journée Chargée et des Souhaits.

This was Cathal’s first Christmas. And even though he was not feeling his best on the day, he was still the star attraction, displaying all his talents.
C’était le premier Noël de Cathal. Et bien qu’il n’était pas en grande forme ce jour-là, il était quand même la vedette, faisant démonstration de tous ses talents.



He played music to accompany our meal.
Il jouât de la musique pour accompagner notre repas.

He had a long chat with his Nan on the metaphysical meaning of Christmas day.
Il a tenu une grande discussion avec sa Nan sur la signification métaphysique du jour de Noël.

Then he kept her busy with a demonstration of one of his new musical toys.
Ensuite il l’a occupée avec une démonstration d’un de ses nouveaux jouets à musique.

After that, it was time to turn his attention to Super-Grand-Mother, and play with her on the mat.
Après cela, il était l’heure de s’occuper de Super-Grand-Mère, et de jouer avec elle sur le tapis.

Then on the couch.
Ensuite sur le divan.

Even pretend-fight with her over the control of the bib.
Même faire semblant de se disputer le bavoir.

Finally Super-Grand-Dad joined in the fun.
Finalement Super-Grand-Père s’est joint au jeu.

As you can see, intense concentration on all sides!
Comme vous pouvez le constater, concentration intense de la part de tous!



Now I simply want to wish every one (family, friends, and all my readers) a Very Good New Year 2009.
Maintenant je veux simplement souhaiter à tous (famille, amis, et tous mes lecteurs) une Très Bonne Année 2009.

Personally, all I wish for is a mended heart for my Little Prince.
Personnellement, je souhaite seulement un coeur réparé pour mon Petit Prince.


Somehow, I have the feeling we are not going to be bored with this little man during the coming year!
J’ai comme l’impression que nous n’allons pas nous ennuyer avec ce petit homme pendant l’année à venir!

;-)

T’is the Season to be Jolly…

Or so we are told.

I have learnt over time that this season and all its merriment can actually be quite “un-jolly”, if not dam right difficult for some.

It can be due to money (or lack of), health, and a range of other concerns that weigh heavier on the mind and heart than the seasonal hype. In fact, I have come across so many people who put on a brave smile around this time of the year, pretend to be all “happy-happy”, just not to have to answer awkward questions, or look like sour party-spoilers.

It can also be due to the people we miss, who will not be with us at this special family time.

In particular, I am thinking of my good friend Catherine’s Mum, who recently joined the Blogworld. You see, Catherine will not be with her family this Christmas as she was killed in a car crash in July 2006, aged only 14.

I am also thinking of Cathal’s other grand-mother, whose presence I miss along my Journey into Grand-motherhood. Her experience would have been of great help to Cathal and his family.

So I will not be so pretentious, or even so dam condescending, as to wish anyone a “Happy” Christmas. Instead, I want to wish my fellow bloggers:

A Peaceful

And Serene

Christmas 2008

And if happiness and joy come your way, then it’s a bonus. ;-)

Super-Grand-Parents!

Cathal’s great-grand-parents arrived from France yesterday to spend Christmas and the New Year with him!
Les arrière-grand-parents de Cathal sont arrivés de France hier pour passer Noël et le Nouvel An avec lui.

The plane got in right on time so that they could be driven from the airport straight to Cathal’s school Christmas Party!
L’avion est arrive à l’heure si bien qu’ils ont pu aller directement de l’aéroport à la fête de Noël de l’école de Cathal!

Even Santa Claus was there! And he was very impressed to meet four generations!
Même le Père Noël était là et il était très content de rencontrer quatre générations!

1- Cathal
2- Cathal’s Mammy – La Maman de Cathal
3- Grand-Dad J. (Cathal’s Daddy’s Daddy – le Papa du Papa de Cathal) + Nan P (Cathal’s Mammy’s Mammy – la Maman de la Maman de Cathal)
4- Grand-Père + Grand-Mère (Cathal’s Mammy’s Mammy’s parents – les parents de la Maman de la Maman de Cathal)


! ! !

After all, Cathal knows he is worth all the attention, he is so beautiful, if he may say so himself!
Après tout, Cathal sait qu’il a droit à toute cette attention, il est si beau, même qu’il le pense lui-même !

Bureaucratic Wastage

This could be also called “Mad Update on the Update”.


We are told that we live beyond our means.

That the State is short of money, that the Government needs to save everywhere it can.

To this effect, last October, our new Finance Minister, supported by various colleagues, proposed a range of cutbacks for the next year. Following on the announcement made regarding the Disability Allowance, I had taken my cue from Down Syndrome Ireland and joined in the protest with a volley of emails. As we know, the Government did a somersault on this proposal, it was rescinded, things went back to where they were. In short, the matter was closed, as if it never happened – except for the psychological impact left with people with disability and their families, but this is another story…

Image my surprise when, late last week, a full 7 weeks after my original email, I received an email from the office of our Minister for Social & Family Affairs.

Quote:

“Mary Hanafin T.D. Minister for Social & Family Affairs has asked me to acknowledge receipt of your recent e-mail regarding Disability Allowance and to say that the matter is receiving attention.”

Unquote.

… OKAYYYYY. A bit late, wouldn’t you say?

Has the proposal not been reversed?

Imagine my surprise when I got home this evening and found in my letterbox a note from… yes, you guessed right: the same minister’s office! And it told me the following:

Quote

“Mary Hanafin T.D. Minister for Social & Family Affairs has asked me to acknowledge receipt of your recent e-mail, which was forwarded to her by Brian Lenihan T.D. Minister for Finance, regarding Disability Allowance and to say that the matter is receiving attention.”

Unquote.

OOOOKAYYYYY! Again!

Let’s think a second.

Someone found my email to Mary, and took the time to respond, not quite a mail shot, my full name is on it. Say that took about 3 minutes of a civil servant’s time.

Then someone found my email to Brian and passed it on to Mary – let’s say another 1 minute.

Then someone in Mary’s office personalised the standard answer, printed it (using headed paper, include the cost of that page), put it in an envelop (include the cost of the envelop), franked it (54 cent, as it’s 1 cent cheaper if franked rather than with an actual stamp – Woa! 1 cent saved! That will help!) and dropped it in the mail bag – for argument sake, let’s say 8 minutes.

Total: cost of 1 envelop, of 1 headed page, of franking, and of 12 minutes of a (probably junior) civil servant.

Multiply that by the thousands of complaints regarding the 3 main reversed and now defunct budget proposals… Mind Boggling!

Whereas all that was needed, once the proposal was reversed, was:
READ THE HEADING OF MY EMAIL AND HIT THE “FILE” BUTTON
(= bureaucratic lingo for DELETE).

Estimated time: 5 seconds


My question is: is the extra 1% income tax I am going to pay from next January meant to be financing this kind of waste???

Mr Lenihan, if ever you come across this post (though unlikely, stranger things have happened), please respond.

Hibernation

Winter is upon us. Temperatures below zero at night mean that, as I set off to work in the early hours of the morning, well before dawn, roads are white with frost, my fingers feel like icicles, my mind is doubly numb with sleep and freezing fog.


Why do we spend so much energy at this time of the year, more energy than at any other time? Just when we need to conserve all the calories we have to fend off the cold. Even our brains seem to switch to a lower gear – mine does at any rate. My body often has this tremendous longing for my beloved bed, and usually at the most inopportune moments of the day.


So when I arrived in Cathal’s house the other evening, and found my Little Prince soundly asleep on the couch, a theory I have held for many years was confirmed to me: From mid November to mid February (at least!), we should all hibernate. Most mammals do it, to varying degrees, so why can’t we?

That evening, all I wanted to do was to snuggle up to him and share his rest. Pity there was not enough room for the two of us!

Thankfully

Thanksgiving is very much an American celebration. In Ireland, turkeys need to wait until Christmas before they are deemed fat and juicy enough to adorn the family table, alongside all the traditional trimmings of ham, mash and roast potatoes, cranberry sauce, and of course the dreaded Brussels sprouts.

I have just read today's post on Angela’s blog where she describe how The Tribe, this English family now living in New Zealand, have a tradition of celebrating this day by giving thanks for the parents of the children they have adopted and the parents of the children they foster. How incredibly nice and appropriate is that?

It got me thinking. And the conclusion of my mental meanderings is that, yes, I am thankful.

I am thankful for the little man who came into my life eight and half months ago, and opened so many doors for me. Doors inside the big house that is the society I live in, doors to the (until then) undiscovered wings of Special Needs. I keep pushing these doors open, I keep stepping in. What a discovery, and it’s only the start of it.

I am thankful to this little man who also put his hand on the handles of doors deep inside me, revealing hidden corners, recesses, secret passages. There again a new inner journey has been started. And some of those places are quite interesting!

And all because of one extra tiny little chromosome.



But I cannot let this day pass without acknowledging the people who make this blog so worth writing. I am thankful for all of you who keep coming back to it. And especially to those I tickle enough to prompt a comment.

About two weeks ago, Google Analytics showed me that my little blog had got over 1000 visits – it actually happened earlier than this but, due a little "techie" mix-up at the beginning, I have no data for the first two weeks of my virtual existence, so I don’t count them.

So to all of you who keep coming back, I say THANK YOU.

All of you in such places as - in no particular order… actually, let’s put them in alphabetical order, no jealousy that way!

Australia

Canada (who are you???)

France

Germany

Ireland

Luxembourg (and you, who are you???)

New Zealand

The UK (and you???)

The USA - especially California


Now, you can all sit down around my virtual table, and dig into my lovely virtually roast turkey dinner! Bon appétit!

So Do-able!

Often times we think of something we would like to do, but then refrain from taking action, because, well, we couldn’t really, could we? I mean, most of these things are done by a special kind of people, aren’t they?

Take giving blood, for example. I have thought about doing it for years. And for years, I thought it really was not for me. I am SO squeamish for one thing. And my pain threshold is low. And 470ml? That’s a lot! And my blood group is O+, the most common one, so it’s not really needed, is it? And the donation clinics are not at a time that suits me.

So every time I heard the ads on radio, saw the posters in the streets, or the appeals in the papers, I thought about it and concluded that it was a brilliant idea, but not for me. You see, I could not picture myself as one of those very special people who give their blood for others. Those people are almost holy, they must have with a whiff of sainthood floating around them.

And That is Definitely Not Me!

Last spring, as Cathal was recovering in hospital following his heart operation, one evening on my way home from visiting him, I saw a poster: A Blood Donation Clinic was going to be held only a few kilometres away the following Sunday. This time, I could not dismiss it. If Cathal had needed blood the previous weekend, someone would have had to give it a few days before. Cathal is going to need very serious surgery next year, and, if it’s needed, someone will need to step in and give.

Blood does not keep more than 35 days. The supply needs to be constantly renewed.

So I could not give him my blood, but maybe, just maybe I could conjure up the courage to try and donate for someone else, just because someone else might donate for him. Just in case he needs it!

So the following Sunday, I found myself driving over to that clinic. I did not allow myself to think about it, I just told myself I was going, and that was that!

What I did not know was that, for people like myself who were born outside of Ireland, you cannot donate on that first day: your blood needs to be tested, so only what is needed for the tests is taken... still 300ml! It’s understandable really, we are talking about very sick people needing the blood, and patients are the prime concern, they need to be protected. Then you get a letter telling you: “yes, you are good to go! And by the way, here are the dates and times of the next clinic near you”. And in case you forget, they text you the morning itself! Just a gentle reminder.

Anyway, after all the fears, all the excuses, the end result is: it’s totally do-able!

It’s not comfortable.

It’s not pleasant.

But it’s do-able.

And the people going in are just ordinary people, not a hit of a whiff of sainthood about the place! There is tea and fruit juice and biscuits and chocolate bars afterwards. There are relaxed people chatting away, smiling, reading the papers, surrounded by children busy with the lovely “Give Blood” pens and pencils. So normal. So ordinary. So simple!

And so needed!

It’s worth a thought. If I can do it, anyone can.

For more info, click here.

Holidays are great!

Yes, holidays are great. I am enjoying mine at home this week. I have been able to take time to laze in bed in the morning, entertain Cathal (and his mammy) for lunch, do a spot of shopping, finally figure out this video recording thingie and loading on my pc, then on the blog.

Oui, c’est super les vacances. J’apprécie les miennes chez moi cette semaine. J’ai pu prendre le temps de faire la grasse matinée, recevoir Cathal (et sa maman) pour déjeuner, faire les magasins, enfin comprendre comment utiliser ma caméra, et charger mes vidéos sur mon ordinateur, puis sur mon blog.

I also met Cathal’s little play buddies (and their mammies) today, and here they are:
J’ai aussi rencontré les petits copains de jeux de Cathal (et leur mamans) aujourd’hui, et les voici :

From left to right, "Cutie-pie" Ava, "Big-Eyes" Noah and Little Prince Cathal – De gauche à droite, Mignonne et Adorable Ava, Noah « aux Grands Yeux » et Petit Prince Cathal

NB: Thank you to the Mammies for allowing me to post this photo!

And I am going with him (and his mammy) to his “school” tomorrow!
Et demain je vais avec lui (et sa maman) à son «école » !


So here is a taste of Cathal’s activities, the same as any 8 month old really – donc voici un exemple des activités de Cathal, en fait comme pour tout enfant de 8 mois :



He likes keeping his mammy entertained, just in case she might get bored…
Il aime faire s’amuser sa maman, au cas où elle s’ennuierait…

He is training his mammy for the Irish X Factor, with Lámh Signing choreography if you please!
Il s’est chargé de l’entraînement de sa maman pour la Nouvelle Star Irlandaise, avec une chorégraphie via langage par geste s’il vous plait !

He gets her to read aloud… But the hell is this dinosaur gone?
Il lui fait faire la lecture à voix haute… Mais où est donc passé ce dinosaure ?

Yes, my holiday week is great!
Oui, ma semaine de vacances est super !

Le Pourquoi et le Comment (Why & How)

I have recently thought that it might be a good idea to do some kind of summary of what awaits, or might await Cathal, and this specifically for those who, like myself only a few months ago, might not have much knowledge on the Why and the How of Down Syndrome. And since Cathal’s Mammy recently did a big Health update on her blog (Part 1 and Part 2), I am going concentrate on the more general facts, but all in French, especially for the Frenchy side of my readers.

So if you are not interested in revising your French lesson, or in trying to decipher what is below, you might just skip to the pictures and then move on… I’ll understand! ;-)


J’ai pensé récemment qu’il serait peut-être bon de faire une sorte de récapitulatif de ce qui attend, ou risque d’attendre Cathal, et cela à l’intension de ceux qui, comme moi-même il y a quelques mois, n’ont peut-être pas beaucoup de connaissances du Pourquoi et du Comment de la Trisomie 21. Comme la maman de Cathal a récemment expliqué beaucoup de ces choses sur son propre blog, en anglais, ceci est tout spécialement à l’intention des français – et si je fais des cafouillages de langue, pardonnez-moi, mais je n’écris pas souvent en français… je n’ai plus l’habitude !

Et si j’oublie ou fais des erreurs sur certains faits, que ceux qui « savent » me fassent signe. Merci !


LE « POURQUOI »

Très simplement : chaque cellule humaines a 23 paires de chromosomes = 46 chromosomes au total. Sauf pour les cellules reproductives (ovule et spermatozoïde) qui ont 23 demi paires. Quand ils se rencontrent au moment de la conception, les demi paires de l’ovule et les demi paires du spermatozoïde s’assemblent pour faire une jolie nouvelle cellule de 23 paires = 46 chromosomes. Mais parfois, soit chez l’ovule, soit chez le spermatozoïde, la paire no. 21 ne se divise pas comme prévu, et reste intacte. Quand elle rencontre l’autre demi paire, elles créent un « ménage à trois » pour le no. 21, c'est-à-dire 23 paires et demi = 47 chromosomes. Résultat : mon Petit Prince Cathal.

Il y a deux autres types de Trisomie 21, mais ce qui est expliqué ci-dessus arrive dans 95% des cas, y compris pour Cathal.

Petite annotation ici : le dépistage n’est pas fait automatiquement dans tous les pays. En Europe en particulier, c’est le cas pour l’Irlande et la Pologne. Les Etats-Unis et la Nouvelle Zélande ne l’ont introduit que ces derniers mois.


LE « COMMENT »

Je ne vais pas passer en revue l’apparence physique de Cathal, il est LUI : un peu de sa maman, un peu de son papa, un peu des familles de sa maman, un peu des familles de son papa, et aussi un peu du chromosome supplémentaire…. Adorable ! Voyez vous-même :

Je préfère parler de certaines des difficultés possibles liées à la T21. La chose la plus important à se souvenir ici est que tout est traitable, peut être soigné ou géré. L’évolution de la médecine est telle que l’espérance de vie pour les personnes ayant la T21 est passé de 5 à 6 ans il y a une cinquantaine d’années, à plus de 65 ans à l’heure actuelle. Le temps que Cathal arrive à cet age, les choses auront encore évoluées.


Le Cœur

Environ 45 à 50% des personnes avec T21 naissent avec des problèmes cardiaques. C’est comme si le cœur n’avait pas tout à fait effectué sa finition. Dans le cas de Cathal, il a fait dans le mille, avec trois problèmes, chacun courant dans les cas de T21, mais chacun sérieux :
- des parois non fermées entre les quatre compartiments différents, avec grand mélange de sang « bleu » et sang « rouge » (le problème cardiaque le plus courant lié à la T21),
- une artère pulmonaire sous-développée, et la valve pulmonaire trop serrée, ce qui fait que le sang a du mal à quitter le cœur pour aller vers les poumons (là aussi assez courant),
- une aorte partant du côté droit au lieu du gauche du cœur, dans son cas située jusque à côté de l’artère pulmonaire (ça c’est plutôt rare).
A l’âge de six semaines il a été opéré à cœur fermé, pour mettre une déviation en place, un petit tube artificiel qui re-dirige le sang revenant au cœur directement vers les poumons sans passer par la pompe, et évitant ainsi la valve pulmonaire qui ne faisait pas son travail. C’est une mesure intermédiaire, une opération à cœur ouvert est prévue au printemps pour mettre un peu d’ordre là-dedans… ! En fait, tout est à reconstruire. Suivant ce que les chirurgiens feront au printemps, il est aussi probable qu’il ait besoin d’une 2ème opération à cœur ouvert dans quelques années, et peut-être une troisième à la fin de l’adolescence, quand son cœur aura atteint sa taille adulte. Mais nous n’en sommes pas encore là…

Problèmes Gastro-Intestinaux

Comme pour le cœur, il arrive dans environ 15% des cas que le système gastro-intestinal ne soit pas complètement formé. Ces problèmes sont détectés à la naissance et heureusement Cathal a échappé à cela. Dans la plupart des cas, une intervention chirurgicale est nécessaire. Certains enfants ont de grandes difficultés à manger, à avaler ou à digérer, et certains doivent être nourris pas une sonde naso-gastrique pendant plusieurs années.
Pour les plus grands, même sans les difficultés ci-dessus, la constipation chronique peut devenir un problème sérieux qui nécessite une régulière intervention médicale.


Poumons et Système Respiratoire

Les enfants qui naissent avec la T21 ont plus de chance d’attraper des infections pulmonaires ou respiratoires, parce que leur système immunitaire est moins vigoureux, ou à cause de différents aspects liés à la T21, entre autre des passages respiratoires plus étroits que la moyenne. La moindre infection doit être immédiatement traitée. Dans le cas de Cathal, il a échappé jusqu’à à ces infections, mais du fait qu’il est en attente d’intervention à cœur ouvert, il est sous traitement de prévention pour renforcer son immunité pulmonaire : une piqûre (douloureuse) dans chaque cuisse toutes les trois semaines depuis début octobre et jusqu’à l’intervention.

Muscles et Ligaments

Toutes les personnes ayant la T21 ont une tonicité musculaire plus faible que les autres. Egalement les ligaments ont tendance à être plus relâchés. Un des signes les plus apparent mais sans inconvénient est la langue qui semble ressortir de la bouche. Les autres aspects sont une stature en générale plus trapue, des difficultés pour franchir les différentes étapes du développement moteur : maintien de la tête pour le nouveau né, les roulades, s’asseoir, aller à quatre pattes, marcher. Par exemple, certains enfants marchent à un an, d’autres seulement après 3 ans. Environ 10% ont des problèmes d’instabilité au niveau de la colonne vertébrale qui peuvent être assez sérieux.

Plus l’enfant est pris en charge de bonne heure, plus il a la possibilité de renforcer ses muscles et ligaments. Cathal rencontre régulièrement une kinésie depuis sa naissance. Les exercices que lui font faire ses parents aident, Monsieur se tient seul assis depuis l’age de 7 mois, et actuellement s’exerce à rouler, rouler, rouler sur son tapis.

Un des effets les plus immédiats de cette faible tonicité musculaire est la difficulté à s’alimenter : chez le nouveau né, apprendre à téter prend plus longtemps. De ce fait, un bébé avec la T21 ne retrouve son poids de naissance qu’au bout d’un mois au lieu d’une dizaine de jours pour les autres. Cela est encore plus vrai si, comme Cathal, il y a des problèmes cardiaques qui fatiguent le bébé d’autant plus vite. Plus tard, apprendre à mâcher risque aussi d’être plus long, car de nouveaux muscles entrent en jeu pour la première fois.

La Vue

Les problèmes de vision sont les même que dans le reste de la population, mais en moyenne plus répandu, environ 50% des gens avec la T21 ont besoin de correction. Le strabisme est plus fréquent, à cause de la faible tonicité musculaire. Ici, pour l’instant, Cathal a passé tous les tests avec succès.


L’Ouie

Entre 40 et 60 % des personnes avec la T21 ont des difficultés d’audition. Cela va d’une toute petite perte de sons à la surdité totale. Il y a différentes raisons pour cela, mais en général c’est dû à des passages auditifs plus étroits. Pour l’instant, là aussi Cathal a passé son premier test avec succès, nous savons qu’il entend, que les sons arrivent à son cerveau, donc il n’est pas sourd. Il sera testé à nouveau dans quelques mois.


La Thyroïde

La thyroïde aide le corps à gérer les sucres, les lipides et les vitamines. Environ 40% des personnes avec la T21 ont une thyroïde qui ne travaille pas assez. Pour environ 10%, elle est trop active. Le résultat peut être un manque d’énergie, fatigue chronique, un ralentissement du développement physique et mental, une prise de poids excessive, constipation, épaississement de la peau. Les tous petits comme Cathal sont testés tous les mois (analyse de sang), les plus grands au moins une fois par an.

Les Dents

Les problèmes dentaires ne sont pas sérieux, mais ils existent. Entre autre : apparition des dents sans « ordre », c'est-à-dire qu’elles ne suivent pas l’ordre normal. Certaines ne viennent jamais, ou après plusieurs années. Certaines sont malformées. La plupart des personnes avec la T21 souffrent de maladie des gencives.

Le Poids et la Taille

En général les personnes avec la T21 ont tendance à être plus petits que la moyenne, et plus trapus, et à grandir plus lentement. Cathal est pesé et mesurés tous les mois, et cela est enregistré sur un tableau spécial pour les petits garçons ayant la T21. Pour l’instant, il reste dans la courbe moyenne. Ce qui est important est qu’il n’y ai ni ralentissement, ni prise soudaine de poids, car cela serait le signe d’autres problèmes (thyroïde, etc).

Leucémie

Environ 1% des personnes avec la T21 contractent une forme ou une autre de leucémie – cela est environ 20 fois plus que dans le reste de la population. Mais aussi le taux de guérison complète est plus élevé que pour le reste de la population. Jusqu’à maintenant, Cathal n’a de soucis de ce côté.

Développement Général

En terme général, le développement physique d’une personne avec la T21 est plus lent. Mais deux facteurs sont importants : no. 1. chaque personne est unique, chaque individu progresse à son rythme. Et no. 2. plus l’enfant est pris en charge jeune, et suivi régulièrement, plus son développement sera stimulé. De ce côté, Cathal ne manque pas de stimulation !

Aptitudes Mentales

Là, c’est la grande inconnue. C’est Cathal qui nous montrera au fur et à mesure ce qu’il est capable de faire. En attendant, depuis l’age de 3 mois, il va à « l’école » tous les vendredis matins, dans un centre spécialisé qui suit un programme de stimulation sensorielle, activité moteur, langage et communication.

A ce sujet, la communication parlée est une des activités les plus complexes du cerveau humain, et beaucoup d’enfants avec la T21 (même sans difficultés auditives) ont du mal à s’exprimer verbalement. Pour les aider, ils apprennent, avec leurs parents, un langage par signes (très simplifiés) qui supporte et complémente les mots parlés. Donc nous aussi allons á l’école. ;-) Et il est certain que quand nous parlons à Cathal, il regarde les gestes autant qu’il écoute la voix. Cela semble beaucoup l’amuser, mais tant que son attention est soutenue, tout est possible.



En Conclusion

Tout d’abord, je répète, tout ce que j’ai expliqué ci-dessus est traitable ou gérable. Mais il est évident que ses parents (et les autres membres de la famille) ne vont pas s’ennuyer avec Cathal !

Quoique qu’il arrive, quelques soient les chapitres que Cathal écrira au fil de sa vie, l’important est que tous ceux qui l’entourent l’aide à attraper toutes les occasions, pour lui permettre d’atteindre le maximum de son potentiel. Cela est vrai pour lui, comme pour toute autre personne, T21 ou pas.

En attendant, il profite de la vie !

PS: Si vous avez lu jusqu’au bout, désolée si c’était un peu long, mais maintenant vous en savez presque autant que moi ! J’espère que cela était intéressant ;-)

The Love Elastic

Love is a strange thing. Like an elastic, it can be very tight fitting and compress you in, or it can stretch itself to almost infinity.

I have come across some people who have decided not to have children. And most of them are quite open about their reasons:
- They are too busy in their career to “fit in” the time consuming occupation of looking after another person for the next twenty odd years or so.
- They have done their sums and found that they cannot financially afford providing for another person for the next twenty odd years or so.
- They are having too good a time with their current life and want to experience more of it, without any strings or responsibilities pulling them back.
- They are very cosy in their current relationship and do not want to offset the balance by introducing another element.
- They are terrified of the responsibilities of looking after another person for the next twenty odd years or so.
- They simply do not feel the compulsion to procreate.

For these people, the Love Elastic is very tight fitting.

Though I am the first one to advocate freedom of speech and opinion and to defend the basic respect due to any one’s opinion, even if – especially if – I don’t agree with it, I must say I find these reasons hard to comprehend.

Then there are people who view having children as a natural progression in life, as an extension of the love they share as a couple, as a basic need to filled, as an essential part of what they are. Financial, career and time considerations are put aside, the emotional wealth children may bring to them is brought to the fore.

For these people, the Love Elastic stretches out, a little more as each child comes along, as each child adds more love into the equation.

Cathal’s Mammy was born when I was in my early twenties, followed three years later by her brother. Both of them were very much wanted, even needed. Once I passed 20, the yearning for them took hold of me, and had to be satisfied. Every other aspect of my life was relegated to the back stage, they became the main reason for my life, the explanation, the goal, the fulfilment. Lover just grew and grew with our family.

My most recent discovery is that my own Love Elastic extends to my children’s children, it can keep stretching as it grows stronger. Cathal has made sure of this!

And when the child is born with a little bit extra, like a small chromosome, love seems to strengthen that little bit extra too.

Then they are people who do start the process of having children, but when told before the birth that there may be, or is, a difficulty (such as DS), they balk and decide not to continue. I feel this is a decision that no one can judge, or even comment on, it is too personal. Is it a case that the Love Elastic seem a little too tight, that they fear it might break if stretched that little bit more?

And then there are people who seem to stretch the Love Elastic to what seems improbable infinity. Some weeks back I came across a blog from New Zealand that exemplifies this so well. Picture this:

A couple, Paul and Angela, have child no 1, then no 2, then no 3, “born to them”.
Then they adopt child no. 4, then aged 4 ½ .
Then they adopt child no. 5, Lily, then aged 5 months. Lily has Down Syndrome. Lily is now 20 years old.
Then they have child no. 6, “born to them”.
Then they have child no. 7, Noah, “born to them”. And Noah has Down Syndrome. He is now 9 years old.
And then they adopt child no. 8, Isaac, then aged 9 weeks. And yes, you have guessed it, Isaac has Down Syndrome. He is now 3 years old.


And as if this Super Love Elastic was not stretched enough, this couple also open their home to foster children!

Angela’s blog, Trisomy Tribe, is a day to day record of activities, hopes, fun and general events in this extraordinary family. The accompanying website tells about Lily’s and Isaac adoption, Angela and Lily’s venture into signing at a time where there was not much support for it, and about Noah’s challenges. What strikes me the most is how easy and “normal” day to day life seems to be, how much fun this family has, how loved those children are.



When I read this blog, I always ask myself: now much more love can a human being give? And give so unconditionally?



It seems that the more the Love Elastic is stretched, the stronger it gets. Weird physics!

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!

Updates on a “Wonderful Job”

2 updates indeed!

Both regarding my previous post.



The first (smaller) one:

Apart from the email I ranted about (at length) on Sunday, I received a few “semi-automatically” generated emails, acknowledging my correspondence and assuring me that the matter would be brought to the various Ministers' attention…

But I did get another email, from another TD for Meath-East, but one sitting on the opposition benches of the Oireachtas – in this case, the Dáil – or “parliament” in “English” English, instead of Irish… ;-) The tone was so different, almost concerned, and in no way condescending, nor patronising.

So two answers out of 20, not bad for a first time. Never know, I could turn into a professional lobbyist to supplement my Old Age Pension when I eventually reach that stage of life…

The second (bigger) update:

I heard on the way home this evening that Ms Hanafin confirmed today the Government’s decision to row back (it has been qualified as a “U-Turn” by some, and a “Flip-Flop” by others), saying that “the existing arrangements would continue, pending the completion of a full review of the scheme”.

And my reaction to this: Does Democracy actually work?

Quoting from my Oxford dictionary, Democracy is “ 1. a system of government by the whole population, usually through elected representatives”.

So if the elected representatives “get it wrong”, the “whole population” can remind them so. We tend to forget this, don’t we? We give out, we complain, but we do not act. And sometimes, when we do, it works! It’s exactly what has happened over the last two weeks: with the over 70’s, with the Disability Allowance.

In a democratic system, the few are supposed to be working for the welfare of the many: Saving only €4.3 million per annum to the detriment of vulnerable 16 and 17 years olds was not “WELFARE”.

The second part of the definition of Democracy caught my attention: “ 2. a classless and tolerant form of society” Mr. TD Meath-East of last Sunday did not show much tolerance in my view.



Oh Yes, an email was waiting for me when I got home today: from “guess who?” Yes, Mr. TD Meath-East of last Sunday. Again a little “beauty”, see for yourself:

“Hi P.

I assume you will have heard the Minister's announcement. I said in my previous email that I would be confident of a positive conclusion.

I hope this assures you.

T.”

- No, you didn’t say that.

- And yes, you are a chancer!

“Probably Doing a Wonderful Job”

Warning: This is a letting-off-steam-because-I-am-incensed-at-the-stupidity-of-some-people kind of a post. Remember, I am French born and raised, and not known for my submissive nature! Blowing off steam is my way of controlling the “Frenchie Temper” side of me ;-)

I received an email today that quite blew me by its cheer audacity and its condescending tone. Let’s just say that I am quite enraged about it.

Ok, wind back a few steps to explain:

First, I have never in my voting life (since the age of 18) written to any politician or elected representative. I just never have had the need nor the inclination for it. There was a time, in a different life, when I did write to quite a number of Heads of State, Ministers for Justice and Chiefs of Police in various countries around the world – snail-mail at the time – on behalf of prisoners of conscience who had been adopted by Amnesty International, to which I belonged for a good number of years. But in Ireland, I have never done it, until today.

Second, I am quite cynical about politicians in general. Though I always exercise what I consider not only a fundamental right - the right to vote - but a public and civic duty, I often end up voting “against” rather than for, e.g. voting for a candidate to keep another, or a party, out. Not the best way, I know, but I feel it’s better than not voting at all.

Third, Cathal’s birth has brought me into contact with a world I knew virtually nothing about, the world of Special Needs. And there, to my very naïve dismay, I find that all is not well (I know, I know, I should have realised, I am enough of a news-addict to have copped on, but I had not really got the full picture). So little Cathal is the source of my new found education.

A few months ago, I joined the Louth/Meath branch of Down Syndrome Ireland (I live in Meath) and I regularly get emails from the branch Secretary. I also joined DSI Forum. Between the two, I became aware of the proposed changes in the Budget for 2009 for payments of Disability Allowance for 16 to 18 year olds. A call for action came by email on Friday, and I decided to email various ministers, my 3 TD’s, all the Greens elected to the oireachtas (after all, they hold the balance of power) and a few independent TD’s (they too might hold that balance!) – and yes, Hammie, I did contact your newly independent Joe Sixpack! – as well as leaders of the opposition parties. After all, it’s as good a way as any to spend a bank holiday Sunday morning!

I carefully crafted my email, drawing from the statements posted on DSI website, and adapting my template to each recipient with regards to his / her position in or out of government. Nice, polite, stating facts, and using my democratic right to voice my opinion on what I see as a totally misguided and unjust proposal. I did mentioned I was writing as a concerned grand-mother of a child with DS, not mentioning his age, which is irrelevant here, a principal is at stake after all. In total, about 20 emails went out. Not bad for a first time! And nothing like the enthusiasm of the “newly converted” ;-)

To my surprise, I got an answer during the afternoon, from one of my own TD’s. The contents blew me. I will not name him, it would not be fair, though if you want to know more, my email address is in my profile.... Here is most of the email he sent me:

He started by thanking me for my email and went on to say:

“I take a strong view in welfare issues. My wife is a nurse specialising in disability.”

The cynic in me start saying; “So….? What has your wife got to do with anything?”

But let’s give him the benefit of the doubt and read on:

“This is a difficult one because I actually don't think it was designed as a revenue saving exercise. I know people who are inappropriately in my view (but legally) on disability when they could quite easily get a job or go into training of some kind. I know two people who left school because of this provision.”

What? . . . Double take here, read it again. Yes, he did write this!

Ok, what’s next?

“ But I take your point - a reform like this shouldn't be introduced without a corresponding increase in education or training. The National Federation of Voluntary Bodies - who initially recommended this course of action - are meeting Minister Hanafin on Tuesday and I would be confident of a positive outcome.”

True, they did, along with a whole range of other suggested measures what were totally ignored. That WAS my point, if you had read my email properly! Let’s continue:

"However, notwithstanding that we must do everything to ensure no extra family burden financially, surely age 16 is too young to write off all young disabled people as unfit for work or training? Accepting that some are of course, through no fault of their own.”

Double take again…What???? – By the way, the word “all” was highlighted in the email, I did not stress it.

Read on:

“I will be talking to the Minister during the week and will keep you informed.”

Sure you will!...

And the conclusion – priceless:

“My best regards to your family who are probably doing a wonderful job.”

What (again!)??? Do you think his parents have a choice? Would you not do a wonderful job for your own children, special needs or not? So condescending!

Let’s just say that I will not be voting for him at the next General Election – didn’t last time, but definitely not next time!

I did answer him, very nicely, very politely, stating facts as listed on the DSI website, and bringing into play the principals of protection of the most vulnerable members of our society – my professional negotiating skills were strongly called upon here!

In conclusion, am I being “thick” here? Over-reacting just a tad?

In any case, the Political Cynic in me had a field day today! Thank you Mr. TD for Meath-East! You just confirmed what I always thought!





PS - As I have been typing this, I have been listening to Paul McCartney’s Ecce Cor Meum (yes, the former Beatle, a brilliant piece of “new classical” choral music). I was hoping it would help me cool down a bit. Not sure it’s worked! Dam it, I am still mad!

Text a SHOUT!

"The best spokespersons for people with Down syndrome are people with Down syndrome! The "Shout Programme" is designed to train and develop adults with Down syndrome to speak for themselves. If we don't 'Shout' how can we be heard?”

Though Cathal is a little young to speak on his own behalf, I think it is a very good idea that a programme like this will enable him to speak for himself in later years. So I am supporting, and promoting it, in my own little way.

The first step of this new programme is to train a group of adults to act as ambassadors at the Word Down Syndrome Congress in Dublin in August 2009. For full details of the programme, click here.

From the comfort of your own home, you can text-donate to “SHOUT”. Simply text SHOUT to 57502 - It will cost you a measly € 2 and 10 seconds of your time! (and you can even receive a Bizzy Bee screensaver as a thank you).

So please, Text a SHOUT, and ask others to do the same.

Eleven day-to-day things

As Hammie so “kindly” tagged me to share eleven things I like, here is my list (I’ll try to keep it to the day-to-day stuff, otherwise I’d need several posts, and bore everyone to death!).

In alphabetical order (so no jealousy among the mentioned):

Breakfast in Bed:

At weekends, or during holidays, with the breakfast tray across my lap, pot of strong coffee (see “Hot Drink” below), my mega cup (no half measures here), warm French baguette or nice toasts and jam, and a good book. Pure simple pleasurable “me” time.

Clothes Shop: Armand Thierry

A French chain of really nice cloths, situated in some very good Shopping Centres. The cloths are classy, trendy, and what I would term “different”: a unique mix of materials, a play on the asymmetric, and beautiful yet discrete embroidery. When I need to power-dress, the suits in particular serve me right, being stylishly subtle, I look and feel like a pro! I could spend a fortune in these shops. In fact, I have!

Cold Drink: Champagne

What else?
And yes, I do have expensive taste. So…?

Dawn Skies:

I hate mornings. I hate getting up early. I don’t “get” the need for mornings. Mornings are depressing – in other words, I am more an evening / night person.
But I do need to get up in the morning, and very early at that, as for the last 2 years or so I have been commuting into Dublin city centre. And here is the redeeming features of these mornings: the incredible beauty of dawn-breaking skies I see on my way, especially at this time of the year, or in spring time. The streaks of colours, promises of a glorious sunny day, are breath-taking. This would almost reconcile me with “mornings”!

Flowers:

They don’t need to be on my weekly shopping list, they jump into the trolley by themselves. I have had a pink cyclamen on my bedroom window for the last 5 years (it followed me during my moves without any complaint); by some miracle it is in constant bloom, and it delicately greets me with its scent every time I close or open the curtains.

Food – in general:

I love finding out new flavours, textures. I’ll try almost any thing. And I absolutely love savouring food, taking hours if needed for a nice dinner, especially if with nice people and good conversation.

Hot drink: Coffee

Black, rich, but not bitter. My favourite for several year has been “Café Direct” Rich Roast, the red pack (and it’s Fair Trade, so I feel I am doing “my bit”), it’s perfect for my cafetière, though I have been told I do make it very strong… And I need to watch myself, this is so addictive!

Rhythm:

I love rhythm. So I love music, virtually all types: Pop, Rock, Classical, Jazz, Hip-hop, R&B, Latino – the only type I generally don’t get: Country & Western. Apart from that, anything goes.
And with that, dancing. I’m not much good, but, if there is any possibility, nothing will stop me, I am the first to hit the floor, and last to leave.
Two examples will illustrate:
1. I have been known to get “funny” looks from pedestrians on the street as, while stopped in traffic, I have been caught hitting my car steering wheel, hopping on my seat, bass-volume full on.
2. When I got up the day after the Red Hot Chilli Peppers concert in Phoenix Park about 4 years ago (the excuse was to take my son there as a birthday present… Yey, right!): I found I could hardly walk, the soles of my feet were so raw from the previous day jumping around.
Hemmmm. How old am I supposed to be?

TV series:

They are a number of series I have enjoyed over the years: ER (since the very beginning), Lost, Twin Peaks, Desperate Housewives, The X Files, The Clinic.
But my overall favourite…. This could be so embarrassing, but here goes: Star Trek, and especially Star Trek Voyager… I could sit through re-runs for ever!

White Chocolate:

Oh God! This is my major downfall. Especially Butler’s White Chocolate bar, with the soft gooey centre. Or Leonidas white chocolates with the butter cream inside… Heaven!

Workout: In Curves

It’s only 30 minutes a session, it’s a complete exercise, they are constant new ways of motivating me to come back. I always feel great coming out, no matter how tired I am going in. I aim (and usually succeed) for 3 sessions a week.

So now you know what makes me tick day-to-day.

And I am not tagging or asking anybody to do the same. But if anyone is so inclined, it's fun!

It All Makes Sense

If you have ever wondered what being a Grandparent is all about, check this out here.




I could not have put it better myself.



;-)

I Am Only… (Take no. 1)

I had been cogitating on this topic for a few days, when this morning Hammie very kindly torpedoed my train of thoughts on this very subject, by giving me this award:


So nice of her! Especially considering:
A. that I read a blog for the very first time only about 4 months ago, and that was Cathal’s Mammy’s. From there, I started clicking on a few others, and then went on to follow them, eventually daring to post the odd comment (it’s hard for me to stay silent, as you might have noticed!),
and B. That I started my own little rambling blog less than 2 months ago.

So to be given this “I ♥ Your Blog” award makes me feel so nice and warm....


I will come back to this topic at a later stage, but for now I want to explain just one thing: I entered Blogland hesitantly: though I started it because I felt I had a lot of things to say, ironically I felt a little “different” talking about DS / Disability et al., simply because I am not a Parent of a Special Needs Child, but a Grand-Parent.

In other words… I am Only the grand-mother.

I hoped I would not be seen as an intruder. Instead I found a welcoming that has been very heart warming. The comments on my post are the best, they make me smile, laugh, and think… Dam it! I am doing so much thinking!!!

The rules of this award are simple – Hammie, I am lifting directly from your own post here, hope you don’t mind!
1. The nominated is allowed to put the picture on their blogs.
2. Link to the person who awarded you.
3. Nominate seven other people and link to them.
4. Leave a message on those people's blog to make them aware that they're nominated.


I need a little time to award to seven people, and reserve the right to award again later… (I’ve been at this only a couple of months, so please give me a break!).

And today the winners are:

- Cathal’s Mammy, of Cathal’s Big Adventure – shhhh at the back, I know she is my own daughter, but let me tell you why before you start complaining of favouritism: I thought I knew her, but I have discovered facets of her through her blog that have amazed me. She is a Super Mammy. She can write so well. She is funny. She is entertaining. She is thought-provoking. She has made me cry. All get a tick from me.

- Next, Hammie herself, of Hammiesblog – and you over there, stop shouting “Unfair!” it won’t change my choice - Yes, girl, you never specified in the rules that a reciptient could not get this twice, nor from the person you gave it to. So there! Take it! No matter what she writes about, Hammie ticks all my boxes. But most of all, she has contributed so much to my “Special Needs” education, I consider her more a teacher than an adopted virtual grand-daughter ;-) By the way, I think we are closer in age to be of a mother/daughter generation, than of a grand-mother/grand-daughter generation, but I have gratefully accepted the title you gave me because I realise it is an honour to belong to the Granny-Club.

- My next two go to Dads who also tick many boxes for me: they make me laugh (always a winner in my books); they make me think, and often hard; they often bring up a lot of emotions in me; also, on some very different levels which I will not explore here, I fell I “get” these dads, even when the topic has nothing to do with the DS world. So step up and take a bow please Nick, of Our Jacob, and Elbog, of Bittersweet – and no sniggering Nick, this is DEAD serious! Your blog was the second one I started following after Cathal's Mammy's, I got hooked on the first click!

To all four of you: I Do Love Your Blogs.

And I thank you for accepting me into your world.


Now, get to work people, and award away.

Pour les français ;-)

À six mois et demi, Cathal se tient assis presque sans soutien.

Il a les yeux bleus comme sa maman, et ses cheveux (hérissés) ont des reflets auburn… comme une certaine arrière – arrière - grand-mère bourguignonne ?

I apologise to my English-speaking readers, but the "Frenchies" need to be updated from time to time ;-)

Hey?

Oh!

Hi hi hi (translation: hee hee hee)

Haaaa…

Viens ici que je te dise… (translation: Come here till I tell you...)

A boire! (translation: Drink!)

Encore, encore! (translation: More, more!)

Telling It Like It Is (or Acceptance - part 2)

I know that I should not judge anybody. As the Chinese proverb says: “do not judge a man until you have walked in his moccasins”. I know that the views expressed by people on their blog is their own, and that I should show as much respect for these as I expect them to show for mine… I know that parents have the very basic right to bring up their children the way they see fit, and how they handle the various challenges sent their way is their business, not mine.

But sometimes, I just can’t stay quiet!

During my browsings on the internet, I recently came across a blog from a dad of a DS child. From what I could see, this is “professional” blog, but with the odd personal entry. I must say I did a double take when I read the first post relating to the child in question. It tells how the little boy has just been diagnosed with DS, on his first birthday… To put things into context, it turns out that the child was born at home (this was planned), the couple’s eighth child, and the midwife thought he had some of the features of DS, but told the parents they “should not worry about it but keep an eye on him” (quote – unquote from the blog … I kid you not!). To continue quoting: “So we watched and waited and all we saw was a precious little baby growing properly but his little eyes never lost their almond shape. We became more suspicious when (he) didn’t begin to crawl, or make any attempt to crawl, by the time our other kids were doing it. I guess the straw that tipped the balance was a lady who came up to my wife to offer her sympathy for our “special needs” child.”

And to give a final flavour on the content of that blog, the dad goes on to explain that the child indeed has the “affliction”…

I just simply cannot understand how this child could go undiagnosed for so long, in our 21st century. It is not that he lives in a country that lacks resources (he is in the USA), or that he has inexperienced parents (remember, he is number eight in the family), or that his parents lack the education to research what they had to do to assess the situation (from the blog the dad at least seems to be a very educated “professional”). From the height of my own education (all of six months old or so!) I would have been pestering the medics to get a diagnosis if I thought there was the slightest possibility… I also cannot understand the midwife’s reaction, and the fact that no doctor during those first 12 months noticed anything. From further posts on this topic, it seems that the little boy has a hole in the heart that thankfully does not require surgery, but his thyroid is a major problem. I just hope that he gets all the medical attention he needs from now on. But when we think of the importance of “early” intervention, this story makes me wonder!

This brought me into a train of thought relating to how people react to the diagnosis. Following on the example from Cathal’s parents, I made the whole situation very public right from the start. This was my way of facing the situation full on, and asking all around me to do the same. I suppose that, in some way, I hoped my acceptance would become infectious.

Overall the response was very positive, in fact generally very supportive. Of course, I heard on a couple of occasions what I understand is the common “ah, but they are very affectionate children” – I felt each time like asking: “and WHO are THEY?” but I refrained…

As I have said in another post, my friends were (and still are) of great support. Bar one (but there is always one isn’t there?) who has not been in contact since I announced both Cathal’s birth and his medical conditions (DS + heart). I am sad over it, but if this person is uncomfortable, this is not my problem - I have enough things to worry about as it is.

Also, the family’s reactions have also been very positive. Just to mention but the “French side”, between the exchanges of emails, the phone calls, as well as the discussions I had during a large family get-together during the summer, all have expressed concern for Cathal’s health, but also total acceptance. For the occasion, one of my uncles had put together a very detailed Family Tree, and Cathal’s name and date of birth had the place of choice: the first born of his generation, in a direct line of five successive first born (no wonder I call him my Little Prince, if we were royalty, he would be in direct line for the throne). Some of the “Frenchies” are talking of coming over to meet him in the next few months – God help me! I could be invaded ;-) Others have repeatedly expressed the hope that he can travel over soon to meet the whole gang.

The only little slice of resistance has come from my own mother – it’s ok, I am safe, she does not understand English, and looks at this blog only when I “tip” my parents of bilingual posts with photos. Granted, she is 77, another generation. I know that she got quite a shock when she was told she was going to be a great-grand-mother only a few months after becoming a grand-mother for the fifth time – as for my dad, he seem to take it all in his stride, as usual. But I must say I got quite annoyed with her on a few occasions during our regular telephone calls. The first time was during the first week or so after the birth. At the time, we were talking every day, even several times a day. She mentioned on several occasions that a lot of newborns have “these” eyes, that we should not say Cathal had DS until the results of the genetic testing were confirmed... True! But eventually I had to step in and “tell it as it is”: all the signs were there, all the medics were certain, the genetic testing was there to confirm “which type”, not “whether or not”. I know I was forceful in the way I expressed it, probably even hurtful, but I did not have the energy at that time to be tactful.

Face the facts, there is no point in hiding.

I have had a few other discussions since, in almost the same vein. These usually center around me bragging about Cathal’s latest exploit, her responding either that all children do this at that age, or that it’s never easy for any child to go thought which ever stage we are talking about. In other words, she minimizes everything. I always end up putting her straight, trying to make her face Cathal's reality, and possible (or probable) challenges. And all the while my dad is usually also at the end of the same phone – they put me on speaker – and simply rejoices with me at how well Cathal is doing.

This feels like an ongoing battle against denial. As I see it, the only victory is through presenting things as they are. But sometimes, it’s exhausting! May be I should not engage with her for a while. On the other hand, my French background means I have a tendency not to leave things alone but argue them out…!


After all, Denial is not just a river in Egypt!

For all to see!

I would describe myself as something of a perfectionist – when it comes to something that has to be done, it has to be done right. If it needs to be presented to someone else, if it is going to be circulated, it has to be just perfect… perfect presentation, perfect layout, perfect grammar and spelling, perfect logic of thoughts. Anyone should be able to follow what I am putting forwarded, easily, so that my message gets across, with all the relevant information. In other words, when I am working, I pride myself as being the “ultimate professional” – I know, I know, it’s kind of sad. :-(

But having said this, you should see my desk at work; or better still, what I call my “study” at home… a spare bedroom with the pc and a mess of papers, files, stacks of stuff… it can be quite a frightening sight! It balances things out I suppose.

I organised a small conference for work last week: Theme, programme, venue, invitations and confirmation of attendees, guest speakers, refreshments… I was also doing one of the presentations, and worked at it for hours (Powerpoint is my “Pet Hate” - I find the whole thing so illogical). On the morning itself, I arrived very early to set up, connected my laptop to the massive overhead screen – yes, a full screen, integrated into the wall, not just your small flimsy rollout portable screen. I was making the 1st presentation, then the 2 guests speakers were going to follow with theirs.

I hate it when you are in a work situation, in the middle of a discussion with someone, looking on their laptop at support material, and there pops a family picture! It can be cute, but also very distracting… I have always thought this is so “unprofessional”. To avoid all possibilities of this happening, I cancelled my screensaver sequence – I did not want the magnificent (at least I think they are) photos of my 2007 dream holiday popping up in the middle of a presentation, or the during the Q&A session - who wants to see Sri Lankan elephants and Maldives coral reefs while trying to follow a debate? I cross-checked twice to be sure it was off!

I then loaded the guest speakers’ presentations next to my own, opened the three of them in sequence, and left each one on the 1st page – my idea was simple: no need to go back to the desk top, we could easily flick from one presentation to the next, seamlessly. Remember, everything I looked at on my laptop screen was projected onto the massive screen on the wall of the auditorium…

And yes, it was seamless. The morning went very well, my presentation had no hitch. At the end of it, I clicked on the next one for the first guest speaker; after that one I went back over to switch to the third one. Q&A session followed. All well! Our chairman closed the session, every body stood up, and started talking, chatting, networking. I was one of them, totally absorbed in the discussions around me. The “ultimate professional”.

Then I turned around...

And looked up...

And this is what I saw....

For all to see, Cathal looking down at us from the Big Screen!

It seems that while we were all chatting, someone (I still don’t know who) had very kindly gone to my laptop and closed the last presentation, also closing down Powerpoint in the process, and thus revealing my desk top with “my” baby – photo high-jacked from his Mammy’s PC last month (if it looks familiar, that’s because she had it on her own blog for a while).


After my initial and very loud “Oh!” … I tried to gather my wits, and I explained: “The new man in my life…”, while smiling to all around.


Back in the office, some of my colleagues who had witnessed this remarked that they had wondered at the time…

Goes to show two things:
- This child never leaves me! He has invaded every aspect of my life!
- And you can never prepare for every eventuality!
;-)

A Little Bit Weepy

It never ceases to amaze me how little things can trigger emotions and reactions. There you are, going along nicely, not thinking much about much, dealing with everyday life. Then a conversation, or a few words read, or seeing a photo, and Wallop! You are thrown back to a place that is not so warm and cosy.

This has happened to me this week. It all started on Monday with a conversation regarding Cathal’s next heart surgery – a.k.a. The Big One – and the latest news from the cardiologist. Old forgotten fears rose through me during this little chat, and when I say “old” fears, I mean those experienced only 5 or 6 months ago. They were accompanied by an inner nervousness that I had not felt since Cathal came home after his first surgery. This was a sharp reminder of what is to come. I know this is going to be part of our family’s life for the next few years, but logic does not come into play when your feelings decide to wake up and engage each other in an inner rugby match.


Then I got confirmation that I was accepted as a member of the DS Ireland Forum. So went in, said hello, and then started to browse through the posts and comments. The “Brags” section is the one that ambushed me. Don’t misunderstand me here, I am the first one to talk about Cathal’s prowesses. You know the way, when you have friends who just had a new baby, and ALL their conversations are about their new child? Nothing else matters anymore. Then you have your own child and, though you swore NEVER to turn into one of those “baby-junkies”, hey presto, you ARE one! All communications consumed with baby-talk! Well, let me tell you something: in the last 6 months, I have gone through this transformation for the third time in my entire life. Ask any of my friends, or work colleagues, people I meet on a regular basis. I talk about almost nothing else but “Cathal-related-topics”. It’s just Nuts!

So looking at the “Brags” section on the DSI forum was a natural thing for me to do. I brag about Cathal and I have discovered that I love hearing (or reading) others bragging about the child in their life. But I became very sad while reading these, even a little weepy.

My rational (I can even call it Cartesian – after all, this is what was instilled into me at birth) thinking took over in the form of “… What the hell?”

“What” is happening is simply called grieving. For a long time, I thought that grieving was simply for people we had lost along life’s path. At some stage, I discovered that grieving also exists in relation to the loss of relationships. Then I learned that it can also be in relation to the loss what we never had – a life we hoped for, a life we “thought” we had (I painfully learned that this last aspect if very potent).

After Cathal’s birth and diagnostic, I went through this grieving process. The sadness at time was almost unbearable: sadness for him, and what he was going to miss out on. Sadness for his parents, and the fact they were being deprived of a “normal” child, with all the “normal” pleasures of bringing him up. I know this is just over simplistic, but I make no apologies for it. This is the way I felt in those early days.

The night following Cathal’s birth, I was talking to my sister in France, explaining about him having DS, and his heart condition (as we knew it at the time, very sketchy in those first hours). I was crying my eyes out, and all I could say in the end was: “We are going to have to love him even more, to love him so much”. As if this could make up for anything!

I know that grieving is a normal process, even necessary. It helps the transition between what we had (or thought we had) and what we now have. And then it passes, and we get on with things, in the here and now. But every so often it comes back, when you don’t expect it, and tugs at you. As if to say: “Hey! Don’t forget your hopes and dreams. Put things into context.”

This little ambush reoccurs almost every time I see or hear about the exploit of a child with DS. These kids just pull at my heart. I get all weepy.

But most importantly I find myself feeling so much love, not only for Cathal, but for all the children I read or hear about (my contacts have been restricted to children so far… it’s a fast learning curve, give me a chance, I’ll get to the teenagers and adults soon, I am sure). It’s as if something in me has been liberated… strange!

I also find myself feeling a lot of gratitude. For having been pointed in this direction that I had barely heard about only 6 months ago. For having been invited to a place of such beauty and pride.

This is what I have felt in the last week. A little bit weepy.

And how was Your week?