I am walking, I am walking...

I got on so well last year with my first ever Mini Marathon that I decided to do it again this year: Bank Holiday Monday 7th June – Dublin – Women’s Mini Marathon – 10k – me and some 40,000 other women: the largest All Women’s event of this kind in the world! (And all happening in our little island of Ireland).

And for someone who drives everywhere, 10k is a long way! So I have been in full training for the last few weeks:
- I walk two to three times a week, steadily building up the distance (I am now up to 8km... nearly there!)
- I have increased the intensity of my efforts in my local Curves Gym during my thrice-weekly visits
- I have even started attending a weekly Zumba Fitness class – it’s a mixture of Latin dance and aerobics to cool Latino music. I’ll just say one thing for it: I though I was reasonably fit, but Oh - My - God! It is so energetic!

I must thank someone here who has been great at helping my training: Lorna, the manager of the Curves Gym in Ashbourne: apart from the encouragement, she gave me a loan of cardio music CD’s to download on my smart phone – it definitely upped my walking rhythm and it pulls me along as I lap around my little village – and she also entrusted me with a cardio recovery board (the ladies who have been in Curves will know what I am talking about) until D-Day, to help me warm up and cool down properly, as well as getting some exercise when rain discourages me from go out (I don’t like rain!). It’s great fun making a little fool of myself in my own living room!


If after all this exercise I don’t loose the couple of kilos those lovely white chocolate Easter eggs have left behind, I don’t know what will.


But I am not doing this just for fitness: this year I am walking (I don’t do running, and I don’t do jogging – dodgy knee since my teens!) for Heart Children Ireland.

Heart Children Ireland is a voluntary organisation set up about twenty years ago by parents of children born with Congenital Heart Defects (CHD), with the overall aim of providing a support mechanism in Ireland for all who are affected by CHD.

To put things into perspective, one baby in every hundred in born with CHD. As for babies with Down Syndrome, the “odds” rise to 45 to 50%. About half of all children born with CHD need heart surgery, and Our Lady’s Children’s Hospital (in Crumlin, Dublin) is the National Centre for Paediatric Cardiology in Ireland, carries out between 400 to 500 Open Heart Surgeries every year, on children from one day old to teenagers.

Heart Children Ireland started by offering support. To this day, they provide information, a forum for parents, counselling, a self-help group for bereaved parents. Their website has a section for 8 to 12 year olds who require hospitalisation (Hearts Play), and they are linked to the Down’s Heart Children.

They also work very closely with the Cardiac Unit of Our Lady’s Children’s Hospital, and the funds they have raised in the last few years have been used in such ways as:
- purchase of a new Heart/Lung Bypass machine – no open heart surgery can take place without it
- purchase of Digital Imaging Equipment, Echo Doppler Equipment, and equipment for the Cardiac Intensive Care Unit
- Funding of a Cardiac Liaison Nurse for 3 years
- Funding of a Cardiac Play Specialist for 3 years
- Fitting out of a playroom in St Brigid’s Ward (cardiac ward for the 1 to 16 year olds) and educational toys for St Theresa’s Ward (cardiac ward to the 0 to 12 months olds)
- Funding for the Pre-Admission Cardiac Programme
- Funding of a dedicated Cardiac Speech and Language Therapist and of a dedicated Cardiac Clinical Psychologist

Cathal’s Mammy and the Dad is better placed than I am to testify how this organisation has helped Cathal. However, there is no doubt in my mind that it contributes greatly in saving lives, and played a big part in saving Cathal’s. So I would find it hard to stay on the sideline and do nothing. Things look good for Cathal now, but so many other children can be saved with their help and contribution.

So if you wish to support my training efforts and the Big Walk on the day, and help me help Heart Children Ireland, just click on the donation link on the side of this post or here and donate on-line.
Now, isn’t that computer smart? So much for the “Silver Surfer” to quote but a certain TV3 lady presenter during a recent interview (see previous post) ;-)

Many thanks in advance for your support.

It’s all good!

The most important news,

the BIG ONE,

the one we have been waiting for, hoping for,

is very, very good indeed.

Cathal’s Mammy has the scoop here.


Thinking of only this time last year, it’s a big sigh of relief all around.

Little skip and dance, please.




And then, there is the smaller news, of the “day-to-day” type. Actually, it’s not news as such, just nice progression, but it has me absolutely delighted. Over the last few weeks, Cathal seems to have decided that I am IT. Or, as I keep saying, I am “flavour of the month”. Up to then, when I would meet up with him, he would do the “shy little boy” bit for a while: head on the side, half of a smile on his lips, looking at me tentatively and then away. A little game of hard to get. Eventually he would come into my arms, and hug, and we could talk, and play, and sing. But he needed a little time to start with.

It all changed two weeks ago or so. On that occasion, I was welcomed by a big smile on a happy face, a cheerfully hello sign, and even a Nana sign addressed to the nearest parent present. This was immediately followed by arms up, and the biggest tightest hug ever. We have not looked back since. Every time, the broad smile, the hello sign, the arms up, the strong hug... I just love it.

But most importantly, once this new little ritual is gone through, Cathal decides that his parents barely exist. Who does he want to talk to, play with, or sing with...? Who is to push the swing, put on the Lámh DVD, read the book...? Who is to feed him, change his nappy, bathe him, put him to bed, dress him...?

I just love it, love it, love it.

It’s not all easy, as I often need an interpreter for the sounds or signs he uses - they are more and more of them than I can keep up with, so Mammy or the Dad need to be in the background to assist. And sometimes, even they are not sure. But it does not matter too much, we are together, and enjoying ourselves. It’s all good.

Simple moment, but a job well done!

Moment simple, mais un travail bien accompli!



Cathal adores emptying the clothes basket when his Mammy brings in the washing from the line. They need to be folded and put away, don’t they?

Cathal adore vider le panier à linge quand sa Maman rentre la lessive de dehors. Le linge doit être plié et rangé, n’est-ce pas ?

I love these simple moments, they are so precious simply because we are together. But mixed emotions these last few days: the pure happiness of seeing Cathal in such good health and so happy, and the pain of remembering what he went through barely a year ago. Oh! How much I love my Little Prince!

J’aime ces moments simples, ils sont si précieux simplement parce que nous sommes ensembles. Mais émotions mixes ces derniers jours: le pur bonheur de voir Cathal en si bonne santé et si heureux, et la douleur du souvenir de ce qu’il a enduré il y a à peine un an. Oh ! Combien j’aime mon Petit Prince !

I AM ANGRY, VERY ANGRY!

I am indeed so angry that I have decided to take action. In conscience, I can no longer remain silent. My sense of injustice has reached it’s tolerable limit. I have cried at listening to some of the stories in the last few weeks, or reading about them in the media, or on the Down Syndrome Ireland Forum website.

So today I emailed our Minister for Health and Children, and then forwarded this to my three locally elected representatives (including the “chancer” who assured himself last year that I would never vote for him – click here and then here if you are interested in the details) asking them to acknowledge my correspondence and take action on the strength of it. I have also forwarded it to the editors of four newspapers: the Irish Times, the Irish Independent, the Irish Examiner, and the Harold (simply because this paper seems to have been at the forefront of the campaign against the budget cutbacks in Crumlin).

I am not very hopeful of any feedback, and even less of any action.

But DAM IT, my anger had to be expressed.

I know that different groups have taken and continue to take different types of action to raise awareness of this intolerable situation, and try to bring about change. At the end of the day, the more of us express our concerns, in whichever form suits us best, the more chances we may have to be heard.

Because CHILDREN’S LIVES ARE AT RISK HERE!

I let you all decide for yourself what, if anything, you may wish to do on this topic. But if you can do something, thank you.

Here is an exact copy of my email to Ms Harney:


Dear Minister Harney,

I am writing to you today as a very concerned citizen, regarding the current waiting list for heart surgery in our Lady’s Children’s Hospital, Crumlin.

I expect that you will at a minimum acknowledge receipt of this correspondence, and hopefully confirm to me your position in this regards.

First allow me to tell you a little story: I am the grandmother of Cathal, who was diagnosed at birth in March 2008 with three severe congenital heart defects. I remember thinking at the time that, had he been born in a less developed country, or in Ireland but 20 years earlier, he would not have had any chance to survive pass a few weeks. But this is Ireland in the 21st century, and Our Lady’s Children’s Hospital in Crumlin boasts some of the finest paediatric cardiac surgeons in Europe. So he was lucky! Indeed, he had his first heart surgery in April 2008, but we quickly realised he was not so “lucky”: even though he was considered a high priority case, he had to be put on a waiting list as there was no room in the Cardiac Intensive Care Unit for him to go post surgery. After two weeks of a wait, he deteriorated so much that he became critical, another child who was not as critical as him had to leave ICU, and he had his life saving surgery early one Sunday morning.

This is not the end of the story for Cathal: this surgery was only an intermediate measure, to allow him to grow stronger for his vital open heart surgery. He was finally called for it in March 2009, and until he was actually taken into theatre, there was no assurance the surgery would be carried out – again, a lack of ICU beds was the problem.

In the last few weeks, increasing reports have come into the media of so many children whose open heart surgery has been delayed because of a lack of ICU beds, that I realise, once again, that Cathal was indeed lucky earlier this year! Long term, he may require further surgery. Will his luck hold out then?


As Minister for Health and Children, you are ultimately responsible for ensuring that every person in this country, including every child, has access to the care he or she needs. So how can you justify that life saving operations cannot be performed, when the staff is available and the equipment is in place and waiting?

How can you justify that “luck” decide whether a child lives or dies?

How can you justify that Our Lady’s Children’s Hospital, being the only paediatric cardiac centre in the country and as such a Centre of Excellence – a concept you have been championing so vehemently – cannot do what it is designed to do because of a lack of ICU beds?

How can you justify that, although about 400 heart surgeries are performed there every year, and although every child in the country with a heart condition is referred to this hospital, there are only eight cardiac ICU beds?

I understand that the waiting list for heart surgery is currently over 100. How can you justify putting the life of these 100 or so children at risk? The decision to operate on someone’s heart is never taken lightly, and if the consultants decide on it, it must be done.

How can you justify the mental and emotional anguish this is causing parents and other family members?

And if you wish to bring it back to budgets and financials issues, how can you justify the mismanagement of public finances these delays in treatment are causing the state? Because, in the long term, the financial cost to the state of treating increasingly sick children is going to grow. My taxes are paying for this, and I much prefer them to be used for the funding of surgery of these children now, that the extra funding of additional treatment in the future, should the majority of these children be “lucky” enough to survive.

Minister, you have been in your current position for over five years. You have had the will to effect a lot of changes during this time. Do you now have the will to ensure that the lives of children are preserved? If you have, please communicate to me, as a very concerned citizen and to the country at large that, within the next few weeks, cardiac ICU beds will be made available in Crumlin. Space for these can be found within the hospital itself; Equipment and machinery can be purchased on a priority basis as soon as funds are made available, and the extra staff recruited by simply lifting the embargo on recruitment for this particular instance. If there is a will, there is a way.

I understand that more cardiac ICU beds will be available in 18 months time. This is 18 months too late! So please answer this: do you have the will to effect a change now? If not, your position as Minister for Health and Children is no longer tenable, and you are expected to step down and let someone else, who has the will and competence, take your place.

Finally, consider this: if your own child, or a niece or nephew, was on the waiting list, would you not do all in your power to ensure they live? I am asking nothing less here.

I am sending you a printed copy of this email by registered post. As an elected representative, it is your duty to acknowledge this correspondence and reply to it.

Yours respectfully,


Name and address.


Now let’s wait and see.

Home!

Yes, at last, after 6 long weeks, Cathal went home this evening...!

HOORAY!!!!

What an adventure this has been! His Mammy will soon pick up the threads on her blog, I am sure, and I will be able to resume my “Grand” position.

In the mean time, I want to say a few “thank you’s” to several people – sorry if I sound like some recipient of an Oscar, a Bafta or some other award:

- All of you who read this blog over the last 6 weeks, and came back, and back again.
- All of you who left comments, or emailed me directly – it was hard to keep up-beat and positive all the time, and these helped oh! so much!
- All of you who said prayers, lit candle, did little “get well dances”, sent positive thoughts and good vibes into the ether and around the word, and tried some magicking (crossed fingers, winks and clicking of red shoes included).

It is amazing the level of support felt through this little blog, and very much appreciated.

And then, to family and friends who emailed, texted and phoned… thank you too!

Last but not least, I want to thank my agnostic god (or should I say Goddess? As for a long time this power higher than me has felt like a “Mother”) for helping Cathal through this and out the other side safe and well; and for looking after my own child and the Dad, and giving them the incredible strength they have demonstrated.

Now Cathal, his Mammy and the Dad can take a deep breath, and finally get back to normal life.

Ok, time for some virtual champagne – I think there’s one bottle left, that we didn’t drink it all. Isn’t that right Jazzy? ;-)

Looking Good…?

Last Monday, Cathal started “eating” – meaning that food and nutrients entered his body via his mouth, not the IV tube, for the first time in over 3 weeks. Though we are not sure he appreciates the hospital’s particular delicacies, his mammy’s cuisine is so much nicer! But still...

On Thursday, the pesky NG tube was pulled out, for good – and this time Cathal did not take care of this delicate operation himself, he allowed his nurse to do it!

Yesterday (Friday) he had a quick visit to theatre, for removal under general anaesthetic of the central line. He was very woozy afterwards, and appreciated hugs and cuddles even more than before - I made sure I stepped in, any opportunity and I am there...

So no more tubes sticking into him or out of him. Hooray!

If all goes well over the weekend, he could be going home early next week... even very early next week... I am not saying any more, not to jinx anything.



So I am keeping my fingers crossed all weekend...

and my toes...

and my eyes...

just for good measure...

.

Early Easter Sunday Morning

Tôt le matin, dimanche de Pâques


I have not seen Cathal in such a good form since the surgery as when I arrived early this morning in the hospital. Later on, he even started flirting with his nurse… That is our Cathal! A really pleasure to see him like this.

Je n’ai pas vu Cathal d'aussi bonne forme depuis l’opération que quand je suis arrivée à l’hôpital de bonne heure ce matin. Plus tard, il a même commencé à flirter avec son infirmière… Ca c’est notre Cathal ! Un vrai plaisir de le voir ainsi.

And yes, we do speak a lot of French! And we admire the new bigger room Cathal is now in, away from the nurses station… It’s a good sign, no need for as much close supervision!

Et oui, nous parlons beaucoup en français! Et nous admirons la nouvelle chambre plus grande où Cathal est maintenant, plus loin que l’autre de la station des infirmières… C’est bon signe, plus besoin d’autant de surveillance !

Message for Reid: I told Cathal about you, and he says “Hi, Buddy!” – well, at least I think that’s what he meant by “Ah ta!”

One Month On

Un Mois après

It is a month since Cathal’s little “pump” has been repaired. A very good job has been done, and everyone is happy with it. It’s pumping away nicely, almost as completely as it should do. The little monitor by his bed tells the story, the heart beat count is “normal” and the oxygen saturation levels are top of the range - 100%. We had never seen figures like this during his previous stays!

Cela fait un mois que la petite « pompe » de Cathal a été réparée. Un très bon travail a été fait, et tout le monde en est content. Cela pompe bien, presque complètement comme cela doit le faire. L’appareil de surveillance près de son lit en donne la preuve, le nombre de battements du cœur est « normal » et le niveau de saturation en oxygène est au plus haut - 100%. Nous n’avions jamais vu de chiffres pareils durant ces séjours précédents.

Internal healing issues are still present, poor Cathal is still fed by IV (it has been two and half weeks now!), he still does not like nurses or doctors touching him, even talking to him. But the horrible chest drain has not gone back in, so it is much easier now to pick him up and give him long hugs. But he is in much better form to play.

Les problèmes de cicatrisation internes sont toujours là, pauvre Cathal est toujours nourrit par intraveineuse (cela fait deux semaines et demi que ça dure!), il n’aime toujours pas que les infirmières et les docteurs le touchent, ou même lui parlent. Mais l’horrible drain thoracique n’a pas eu à être réinséré, donc il est pus facile maintenant de le prendre dans les bras et lui faire de gros câlins. Mais il est en meilleure forme pour jouer.

Thank you Ava for the balloon.

So we are bidding our time, patiently - or should I say impatiently???? It is going to be another 10 to 15 days at least before he sees the front door of his house. Patience is a virtue, or so they say!

Donc nous attendons, patiemment – ou devrais-je dire impatiemment ??? Il faut attendre au moins 10 à 15 jours avant qu’il ne voit la porte d’entrée de sa maison. Patience est une vertu, dit-on !

In the mean time, during our quite one-to-one moments, I have kept Cathal updated on all the messages I have received for him, and he tanks everyone for them. He wishes you all a Happy Easter!

En attendant, pendant nos moments seul à seul, j’ai régulièrement transmis à Cathal tous les messages que j’ai reçu pour lui, et il remercie tout le monde. Il vous souhaite tous de Joyeuses Pâques !

A Kinda Miracle

After a weekend of wondering if the healing process had finally taken hold in the one part of Cathal's body that was still resisting, of hoping that the cardio-surgical team would not have to resort to the extreme measure that would be sure of success but bring more pain to this poor tiny boy (see last post), we now know.

It has kinda, and no they did not.

The miracle we hoped for has kinda hapened, the healing seems indeed under way, though not as obvious as it looked for a while. And the cardio-surgical team decided that it was now preferable to let well alone and allow nature to finish what it started. So the last chest drain has come out, he is going to be monitored very closely, tested and examined every day for the next week. If any negative sign, a drain goes back in. If all positive, he will drop the IV feeding and go back to the more normal gastric system of ingesting food we are all familiar with – Hey! Just on time for Easter! Though I imagine Easter Chocolate Eggs won’t be on the menu for a while... Ah sure, the Dad can step in and deal with those...

So Praise Be Given to my Great Agnostic God! I must say it is such a relief, just to know that he is not going to be put through more agony.

And the poor little mite has told me in person that he is fed up with the whole thing. After a trip to the X-ray department yesterday – being wheeled just like a true prince sitting up in his bed from one floor to another, with IV stand, two smiling and chatting nurses and his Nan in tow – Cathal expressed himself very clearly. As pure a temper tantrum as I have seen in quite a while erupted, and anyone looking in got a piece of it... I don’t want to brag, but I think he has inherited That gene from me! And if I was in his position, after these kinds of experience over the last 4 weeks, I would let it rip too!

The other good news is that the Mammy was forced to take a rest this weekend, ordered to sleep in for a change, and let others entertain, consol and watch over Cathal. She looks so much better for it.

In all this, the saving grace is that when the Mammy and the Dad decided to buy their little nest some two years ago, they set their eyes on a cosy little house only a few minutes drive from Our Lady’s Children Hospital, Crumlin, Dublin... Little did they know that this would be a god-send, enabling them to go back to their own bed every night for a full night sleep once Cathal has dropped off - I suspect the morphine and other components in his nightly cocktail help him settle for the night!

So there you have it. Another week of waiting, and observing. But hopeful this is the beginning of the end of this chapter in Cathal’s adventure. It better be...

What Are the Odds?

As I watch helplessly Cathal going through the various stages of his recovery from open heart surgery, I have been wandering what odds he has beaten to be where he is and have what he has.

Statistics are not my forte, but I had to dabble in them at one stage. I don’t remember much, however I think I can still remember how to calculate the odds of a series of events happening. So if any statistician wants to correct any mistake I make along the way, please do so. And I must explain one thing: as the percentages I found vary greatly from one source to another, they are a lot of assumptions here. As the results will show, we come to a stage where the details don’t matter much any more.

Odds of Cathal being born with DS with a mother aged 28: 1/755

Odds of him having a congenital heart defect: 45% - so odds brought to 1/1,678

Odds of defect being Complete Atrio-Ventricular Septal Defect (AVSD): no exact figures, but most common with DS, so let’s say 50% = 1/3,356

Odds of having Pulmonary Stenosis (PS): again no exact figures, but quite common with DS as well, so let’s say 40% = 1/4,195

Odds of having Double Outlet Right Ventricle (DORV): not so common, major assumption here, let’s say 20% = 1/8,390

Add them up together, total so far = 1/15,941

Odds of having all three conditions at the same time? Hummmmm. I am making a call here, from the height of my non-existent knowledge in this field, and I say 10% - we are now reaching the dizzying heights of 1/79,705

So there we have it: 1 chance in close to 80,000.

And now for the little block on the recovery road. As a side issue of the surgery, a little part of his body has not been healing as expected. My little prince has had his fair share of misery in the last couple of weeks, all relating to attempts to stimulate this healing process. On Thursday last, as no lasting improvement had been observed, the cardio-surgical team called it: if no miracle occurs over the weekend, we will proceed with a more drastic action that has a great success rate, but is going to be very painful for Cathal…

Oh no, not again, no more pain, please, no more pain. It is so horrible to see such a young child in pain, despite the morphine and other drugs, to stand by his bed and feel so helpless, to wonder how you could take some of this on you and relieve him…

And he has been pocked, picked, tested, and what have you, so often at this stage, he does not trust the intentions of any of the clinicians: any one crossing the door into his room who is not either of his parents or a familiar face from “the outside” gets a strong telling off. And if this person touches him, cries and screams ensue… Who can blame him! I would do the same.

And guess what? The odds of this type of “hick-up” after open hear surgery is … 5%. So unless my calculator is deceiving me, the overall odds of Cathal being at the stage he is at are 1 chance in over 1.5 million!

Gosh! How lucky is my little prince?

I do not know if it is his luck coming around again. I do not know if it is my telling him that Enough Is Enough, that he has proven he can get a bull’s eye every time, that his Mammy and the Dad are quite exhausted and need a break, and that now we need some proper recovery... I do not know what is doing it, but, it seems, and I am very careful here, I do not want to jinks anything, but indeed it seems there have been definite signs of improvement in the last two days. As if the team’s decision on a plan of action had been enough to prove this might not be necessary after all.

So let’s all cross our fingers…

Having said all this, I have not even spoken about the incredible luck of Cathal being born in this era and this country, where a total repair of all three defects not only can be carried out, but is carried out, even on children with DS. It has not always been the case, and there are places on this planet where it is not the case.

And then he has also the incredible luck of having the parents he has, and the love they pour on him. And that cannot be taken for granted either!

In the mean time, looking at these odds, I am thinking that Cathal is very VERY precious indeed. Of course, I did not need any figures to prove this to me. I have known it since he was born.

First Official Interview Since…

Première Interview Officielle depuis…

Prince Cathal has been feeling increasingly better these last few days and decided yesterday, to statisfy all his fans, to allow the international press into his hospital room for the first photos since his Big Op.

Prince Cathal se sent de mieux en mieux ces derniers jours et a décidé hier, pour satisfaire tous ses fans, d’autoriser la presse internationale dans sa chambre d’hôpital pour les premières photos depuis sa Grande Opération.

The prince, sitting up in bed
Le prince, assis dans son lit

With Mr Strong (thank you Noah). But who is who?
Avec Monsieur Fort. Mais qui est qui?

Yes, he is bruised, even on his hand!
Oui, il a des bleus, même sur la main !

So Prince, how would you describe your experience?

Donc Prince, pouvez-vous nous décrire votre expérience?

“Mammy, I need a hug!”
« Maman, J’ai besoin d’un câlin !”

“That’s better”
« C’est mieux »

Anything else you want to tell your fans?
Voulez-vous dire autre chose à vos fans?

“Enough for today, I am tired…”
« Assez pour aujourd’hui, je suis fatigué… »

Smiles were given to this journalist only once the camera was turned off. Typical Celeb behaviour!
Les sourires ne furent offerts à cette journaliste qu’une fois l’appareil éteint. C’est bien l’attitude d’une célébrité !

PS – Following my last post, I did not see any magic wand appearing. However Lisa-Hammie’s Jeannie-flicking-of-the-ponytail-with-*blink*, Jazzy’s twitching-her-nose-while-clicking-her-red-shoe-heels-3-times, and all the other comments seems to have helped, as you can see. These comments were like virtual hugs. Thank you all ;-)

In and Out

Poor little Cathal has been having it rough. It’s not surprising after the kind of surgery he has had. He has been pricked, poked, jabbed, cut. Cannulas, drains, and leads have been inserted. He has been given morphine, pain killers, antibiotics, drugs for speeding this up and drugs for slowing that down, more drugs for assisting this and other drugs for preventing that. And I am not even mentioning the surgery itself!

Apart from the surgery scar – which looks quite neat and is healing nicely – he is full of marks of all shapes and sizes, not to mention bruises.

The poor little thing needed another short visit to theatre yesterday, a quick In and Out job, to sort out a side issue. He was back in his room and fully awake within 2 hours. But it will be several days before we know if this is working and get confirmation that his recovery is definitely on the right road.

No wonder he is Mr Grumpy most of the time! An adult would not put up with this kind of treatment. Life can be tough, and this barely one year old has had more than his fair share.

Having said this, since the weekend, he has been sitting up for increasing periods of time and has again started taking an interest in toys around him. Not only his own, but toys belonging to the ward as well. Seeing him repeatedly knocking down a stack of cubes made me feel very good.

I am not the most patient person (and believe me, this is a big understatement!). At this stage, I feel that Cathal and his parents have gone through too much, enough is enough, I want him all recovered right now, so that they can all go home and get on with life.

If only this were possible! Has any one got a magic wand to lend me?


Yet I must remember that the magic has already happened: his little ticker is ticking very well.

And THAT is the main thing...

To the Mammies

Because of the day that is in it, I want to salute the Mammies.

Being a Mammy is not an easy task, at the best of times. I will not go so low as to expand in the vein of the sickly sugary-coated way the cards being given this Sunday are written. I simply want to acknowledge that, though the rewards, and the joys, and the love received back, are beyond the comprehension of those who are not Mammies themselves, being a Mammy can be tough.

Even tougher for the Special Mammies. I have had a little glimpse of this through Cathal’s Mammy for the last year. And I take my hat off to her!

Even tougher if your little one has to go to hospital for surgery. And when it’s serious surgery as Cathal’s, Oh My God! How can a Mammy get through this?

So I salute all Mammies, all Special Mammies, and all those Mammies that have sat by their child’s hospital bedside. I hope you all have a nice Mother’s Day – and if you are a Mammy reading this outside of Ireland or the UK, this is for you too, as you all deserve recognition... ;-)

As for the Dads, they will have to wait their turn, won’t they?

Update on Cathal: his recovery is a question of “nice and slow”. He is taking his time through it, but considering what he has gone through, he is well entitled to this. I cannot imagine how sore he must be, and just wish I could do something for him... We are so powerless, aren’t we?

Oh Yeah, Yeah, Yeah!

Forget about toying with the idea of doing the Fat Monica Dance… We are way passed this stage!

Cathal was transferred out of ICU this evening. He is nicely tucked away in his little room in St Theresa’s Ward in Crumlin Hospital, all warm and comfy (well, kind of, the poor little thing) with his Mammy and the Dad by his side.

I was able to see him, talk to him, touch him and kiss him. He gave me a glimmer of a smile, just to prove how brave he is.

So now we can all do the dance.


Oh Yeah, Yeah, Yeah!

Oh Yeah!

Seven days after his open heart surgery, Brave Little Prince Cathal is giving us an excuse to celebrate. Oh Yeah!


The pacemaker has been switched off all day, his little heart is doing ALL the work ALL by itself. Oh Yeah!


The Ventilator has been completely switched off this afternoon and the tracheal tube removed. Oh Yeah!


Cathal is still all doped out – he will need some detox when this is all over, the poor thing! – but he is awake enough to look at his Mammy and the Dad, to try to smile at them, and, though his voice is not in working order yet, to try to give out. Oh Yeah!


So today has been a good day, with lots of progress.


There is a funny little music in my head this evening, and my mind is toying with a little dance that looks like this…




But where are my celebratory doughnuts???

Bubbles, bubbles everywhere…

Des bulles, des bulles partout…

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

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

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

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

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

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

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

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



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

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

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

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

Easy does it…

Indeed, “very” easy does it.

Or “little by little”…

And when a “little” precedes the word “progress”, then we have a “little progress”. And THAT little progress is much better than no progress at all.

So there we are, with Cathal making one little progress at a time, a tube removed here, 2ml of his mammy’s milk (a drop!) ingested there, a breath taken on his own. All progress!

Isn’t Time the great Healer? So, one day at a time, one hour at a time, we are all learning patience.

And if Patience is a saintly Virtue, we might soon see a halo appearing behind his parents…
;-)

Update

Following Cathal’s heart surgery on Monday (aka: The Big One), our little man is stable, but his recovery is very, very slow.

So any spare positive thoughts, good vibes and even prayers that can be sent his way are more than welcome.

;-)

What a Ride!

Day 1 (10th March 2008) started with the knowledge that a brand new little person was going to join our family that day.

Day 365 (9th March 2009) ended with this little person lying in Intensive Care recovering from open hear surgery that very afternoon.

What a ride it has been during these 365 days!

My little Prince Cathal, today, on your 1st birthday, while you are enjoying the relative comfort of full sedation and the care of the incredible staff of Crumlin Hospital, I want to thank you for coming into our lives, and making everything so differently meaningful.

On a personal note, I want to thank you for introducing me to a world I had heard of, but knew so little about, and educating me through it. I look forward to continuing this road with you.

Thank you for pushing me to explore hidden aspects of my being. Hey, you even got me to donate blood, me the squeamish one! And to consider walking the Dublin Mini-Marathon in June in aid of the Dublin branch of Down Syndrome Ireland (yes, I said walk, let’s not push it, and 10k will be more than enough!). You got me to learn all kinds of medical terms, to sign as I speak - and thus slow down my speech, some feat!

Thank you for the laughs we share, the hugs (oh, the massive hug you gave me yesterday morning as we were waiting for you to go in surgery), the big wet slobbery kisses (my face has not quite recovered from the one you gave me last Saturday as I picked you up after your afternoon nap), the absolute trust when you fall asleep in my arms, the great games and songs I have had to learn all over again!

I salute your joy, your strength, your courage, your energy.

I also salute the strength, courage and energy of your parents. Cathal, you have chosen well – I am so proud of them, of the beautiful transformation you triggered in them.

Little Cathal, keep recovering, so that your newly fixed little heart serves you for another 99 years – since I intend on reaching the grand old age of 100, so should you! ;-)

With all my love.

PS: Surgery went well. So far so good…