27 November 2008

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!

23 November 2008

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.

13 November 2008

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…

video



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 !


video




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 ?


video




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



10 November 2008

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 ;-)

07 November 2008

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!

01 November 2008

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!
 
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