Sharks, Turtles and… Spiders!

Last Sunday afternoon Cathal and I went to Sealife, an aquarium South of Dublin.

The Sharks were a major hit, we spent a long time watching them and commenting on them.




The turtles were also a favourite, we had to stop and admire them twice. But the second time was the best, as Cathal proved it is possible to play Hide and Seek with sea creatures.



And to finish it all, yesterday evening I got a recital of Incy Bitsy Spider. Lovely!





PS – Cathal’s speech is coming along so much at the moment. He is acquiring many words and expressions so quickly that I do not always understand what he is saying. I am the one who needs to catch up! ;-)

In their own time… whenever that may be

Cathal has never been a crawler, rather a bum-shuffler. He has developed his own very accurate and very fast style in this form of locomotion. Walking has not been that easy for him. Low muscle tones and weak ligaments in his ankles and knees have meant that standing and then walking were difficult for him. In the beginning his little legs simply could not position themselves well enough to carry his weight, and then they could not carry his weight with enough stability to enable him to walk on his own. Confidence to try and launch yourself unaided comes only if stability is there to some degree. Until now it has not been there for Cathal.

But it has not been for lack of trying. Remember this video taken around Christmas last, when Cathal was about 2 and a half months short of his third birthday? It was then such fun trying out this Walking Business.




A couple of weeks ago, after months of practising, and at the great age of 3 years and 6 & half months, encouraged by the Dad, Cathal very bravely took his first steps unaided. And it was all captured by the Mammy:

I am very VERY proud of him. It has been a long and difficult road for him to get there. Since then, as a matter of routine, he still much prefers to bum-shuffle his way around than to walk. But every so often, if in the right frame of mind, and coaxed properly, he may take off for a few steps. All in all, a major milestone for Cathal.


On the other side, Oisín seems to be a great student of his big brother. He may be only barely 7 months old, but sometimes he looks at Cathal with such intensity, you would think he is willing himself to follow him... and he is not that far. Because he is very clearly attempting to emulate the Big Bro in the house. For example, look at this, filmed only a few days ago by the Mammy, when the lure of Cathal’s garage was simply too much to resist, and when sitting still against the green pillow was not an option…




We have been wondering for a while now which of the two will be the first to walk and run around freely. And right now I still would not hazard a guess. But one thing is for sure, they are encouraging each other, and pulling each other along. God help their parents by the time both of them walk and run around!
;-)



One last little thing I wish to share here, two photos I took on Friday evening, after putting Cathal to bed (he fell asleep in my arms as I went through “our” ritual, singing him a French lullaby).

One very tired little boy, one very tired cat...

(hmmmm, no place like Mammy and Daddy's bed!)

... and one very tired big brother.

All so sweet!

Sleepover Snapshots

Snapshot no. 1 – Saturday morning
Cathal is brought over to me by the Mammy. He throws himself into my arms and holds on tight, so tight, for so long.
When the Mammy leaves, he waves at her with a big smile and shouts “Byyyyye”


Snapshot no. 2 – later Saturday morning
Me: “We are going shopping now Cathal. What we will get?”
Cathal: “Milk... Shoes... Apple... Banana”
Total score: 3 out of 4 – His accuracy is very impressive!
Apparently he suggested the first three items to the Mammy the previous day. I got the lone banana as a bonus!


Snapshot no. 3 – Saturday afternoon
Walking to the local playground during the afternoon, Cathal in the buggy, me pushing. Cathal is providing me with a non-stop running commentary on everything he sees:
- Car!... Bike!... Car!
- What colour is that car?
- Red!... Blue!... Red!... Boy!... Man!... Bike!
And all this in between various snippets of “Cathal Babble” which I cannot decipher.
When we turn off along the green that leads us to the playground, the lack of traffic brings a pause… quickly broken by signing. Old McDonald apparently has a tiger, a lion and a snake on his farm, as well as the more traditional cows, pigs, dogs, cats, ducks, horses, etc.

The return walk home is as talkative and musical.


Snapshot no. 4 – Sunday morning
5.40 am
- NaaaaNaaaa

5.45 am (standing against my bed)
- Nana wake.
- No.
- Nana! Wake!
- No.
- NANA! WAKE!
- Nooooo...
But I did! No choice...


Snapshot no. 5 – 30 minutes later – on my bed
Cathal decides to get another book for me to read to him in bed. Positioning himself at the edge of the bed, he is talking to himself in almost a whisper:
“Careful... Careful... Ready, steady, go.”
And he slides down off the bed, ever so slowly, ever so cautiously, obtaining a perfect slow-motion landing.


Snapshot no. 6 – Sunday 8.10 am
Cathal insists that I sit next to him on the couch to watch Cbeebies. As I over bring my bowl of cereal, he asks for the rest of his own cereals he did not want to finish earlier on.
So we sit, side by side, watching TV, eating. Every so often he looks at me and smiles. No words needed.

Snapshot no. 7 – Sunday 8.35 am
I feel sorry for my neighbours: Cathal is in the bath, and exercising his vocal cords to the max, testing the match between the acoustics of the bathroom and his musical talents. And when I tell him he is very noisy he burst laughing.


Snapshot no. 8 – Sunday 9.45 am
We are on the motorway, driving to Imaginosity. The radio is on. Cathal has resumed his singing, adding some very cool dance moves I catch in the rear-view mirror. As quickly as he started singing he falls asleep: no wonder! But I don’t have this luxury, I am driving, aren’t I?


Snapshot no. 9 – Sunday late morning – Imaginosity
Cathal is totally taken by the foam bricks: first we rebuild the wall we have knocked down. As the top rows are out of his reach, he uses the remainder of the bricks to build a series of little walls around the room, each with a different pattern, yet each almost perfectly aligned. Of course, the running commentary has resumed.


Snapshot no. 10 – Sunday lunch time
As we are nearing his house, he suddenly shouts: “Daddy Mammy! Yay!”
Quickly followed by “Oisín! Yay!”


I am aware that people with Down Syndrome are said to be very affectionate and always happy. I pay no heed to such generalisations. Every single person has his or her own individual personality. If this includes a penchant for affection and positivity, as with any one else all the better, as it makes everyone’s life more pleasant.

But I must say that having Cathal for a sleepover is always a pleasure, not just because of the fun we have, but mainly because of his own, and very personal, cheerfulness, his almost constant joy, his easy excitement at everything that is proposed to him. As with many 3 year olds trying to affirm their own individuality, his favourite word is “NO!” - always delivered in a forceful manner. Yet his face usually lights up again within seconds of expressing this negativity.

If we all took a leaf out of Cathal’s Happy Book, we would have a much more pleasant day. Every day.

Phone Conversation

Since Cathal has been about 4 months old, I have often spoken to him on the phone. It’s a nice way to keep in contact between the times I can see him, and can hold him, hug him, kiss him, and play with him.

In the very beginnings, Cathal heard my voice but had no idea where it was coming from and generally ignored it. Then came several stages when:
- he licked the phone - must have tasted nice!
- played with it - pressing the difference buttons is such fun
- eventually listened attentively, without a sound
- listened and answered with little baby gurgling sounds
- gave the phone a broad smile - though I could not see him, but his intentions where in the right place.

Until Cathal started giggling after every sentence I said, every question I asked. Obviously, this was highly entertaining.

And this giggling communication went on for quite some time. About a year and a half in fact.

Until last Friday lunch time.

I needed to make a quick call to the Mammy. And during our conversation I could hear Cathal in the background so I suggested that she gives him the phone once we had finished our own conversation. It went like something like this:

- Hello Cathal!
- . . . NANA!
- How are you Cathal?
- Nana!
- Are you well?
- Yeshhh!
- Are you good?
- Yeshhh!
- Did you have your lunch?
- Yeshhh!
- What did you have?
- . . . .
- Was it a nice lunch?
- Yeshhh!
- Did you go to school this morning?
- NO!
- Did you go swimming?
- Yeshhh!
- Was it nice?
- Yeshhh!
- Cathal, I must go now. Will you give me a kiss?
- *sound of kissing coming down the line*
- And here is a kiss for you Cathal.
*sound of kissing on my side, echoed by Cathal*
- Bye Bye Cathal
- BYE NANA!

And the Mammy came back on the phone.

Nearly three years on, and I had just had my first two-way phone conversation with Cathal.

Score!


Signed: A Nana who got very emotional after this phone call.

Where is...?

“Where is?” is a great game, with so many levels of complexity.

As for any child, Cathal started playing it when he was very small. In the first version, we would ask him: “Where – is – yourrrr... NOSE?” and then point at it. And then we would repeat the question about an increasing number of body parts. After a while he did all the pointing himself.

As Cathal got a little older, we moved on to the next level and started asking about objects around us, and people. And then he took the game into his own hands, adding a sprinkle of imagination to spice it up. His favourite version works like this:

- Take a small object (one of his socks freshly pulled from his foot is a favourite) and put it behind your back, look around with a bewildered expression and shout “Oh! Oh! Where!”
- The adult / older child present pretends to look around, querying if the sock is here or there, underneath this or inside that.
- Then pull the object from behind your back, shout as loud as you can “THERE!” and burst laughing.

NB: for added fun, before taking the object from behind your back, do a “roly-poly” motion with your hands pretending this is a magic trick. Adults find this irresistible.



Such fun!

No matter how old we are, we all love games. They entertain us, they make us feel good, they absorb our attention. And we often forget that they are the best medium of education and learning ever devised. “Where is?” is not only fun, it helps with visualising the concept of what is missing.



Last week I was looking after Cathal in his own home for a few hours. During the afternoon Cathal asked me “Mammy! Where?” I explained she was gone to a wedding. He repeated “Eddin” and seemed satisfied with this.

After a while he asked “Daddy! Where?” So I explained he was gone with Mammy to a wedding. Again he repeated the word “Eddin” and continued his activities.

During the course of the afternoon he talked a few times about Mammy and then Daddy, always happy with the explanations.

But when we were having dinner (pasta, his favourite!) disaster struck. He suddenly became very quiet. I asked him if he was alright. He looked around, then at me, and with a panic look on his face said: “Oishhhin! Where?” I told him that Oisín was with Mammy and Daddy at the wedding.

“Noooo! Oishhhin!” followed by uncontrollable heavy sobbing. Forget about pasta dinners, this was serious. Cathal had just realised that his little brother was not there. And that he was missing him.

And I suddenly understood that, though Cathal is well used to doing things without his brother (he goes to Montessori every morning), though he is well used to being on his own with me (he is no stranger to sleepovers in my house), this was the first time that, since the birth of his little brother three and a half months ago, he was in his own home without his parents AND Oisín. I witnessed the strength of love he has for his brother, the importance his sibling has taken in his life.


I hope that in the future, when Cathal asks the question “Oisín! Where?” he is always able to then shout with delight “There!”And that when in his own time Oisín asks the same question, he too can count on his big brother to be there for him.

As easy as putting one foot in front of the other

It seems simple doesn’t it? At age 16, I found myself standing holding the hands of the physiotherapist who was in front of me, and wondering “how in the name of God did I do this before?” Following an accident, several months of immobilisation, and eventually extensive knee surgery, I simply did not know how to walk. My brain could not tell my wasted muscles to move. I had managed to stand up with a lot of pulling and prompting, I had enough balance to remain standing on my own, but the mechanics of “lift foot - move forward – put down foot” had become alien to me. It took several sessions to reconnect the brain-nerves-muscle communication flow and eventually walk again. And several months before I could run again – which I eventually did with the help of my father who held my hand and pulled me along a beach every day of a month summer vacation… Oh the teenage embarrassment of this!

I was reminded of this recently watching a video of Mark Pollock on the internet, and then again during his recent interview on the Late Late Show, where in the Project Walk Gym he is on a treadmill, held up right but a strange contraption, and two people, one on each side, are lifting his feet and mimicking the walking movement. Of course, in Mark’s case, paralysis is the issue, and his condition is severe. But this goes to show that for some people putting one foot in front of the other is not as easy as it seems.

A couple of weeks ago, I witnessed for the first time Cathal’s attempt at a “one-hand-holding-only” walk. His knees and ankles joints have weak ligaments, and at 3 years of age walking is still a major challenge for him. Standing up if fine, walking holding with 2 hands for a short distance is just alright, but any thing else is a major effort of balance, and requires great focus. And courage: I would not like to find myself attempting a room-crossing feeling all wobbly. It must be similar to trying to walk on a tight rope, even if only a few inches from the floor. So when I saw him holding on to his dad’s hand, and slowly, gingerly, purposefully, crossing the sitting room, going down the hall, negotiating the length of the front garden, crossing the road and finally reaching the car, I felt quite emotional.

Because in those few minutes I was reminded of Cathal’s difference: Nothing is simple for him, nothing is easy, nothing can be taken for granted. But I was also struck by his determination and that of his parents. It may take time, but with therapy, love and hard work, Cathal will walk, and run, on his own, like any other child. He just needs a little more time.

Ironically I took up walking after Cathal’s birth, and because of him will do my third Mini Marathon on June 6th. Unlike Cathal, my training this year has gone haywire through a series of uncontrollable circumstances. But, like Cathal, I am determined to do it and pass the finish line. I will not beat my own personal World Record this year, but I will get that medal. And the Down Syndrome Centre will get a few Euros as a result. All I need to do on the day is put one foot in front of the other.




NB: If you would like to sponsor me as I attempt to jog-walk-crawl the Women’s Mini Marathon on the 6th June, and give some much needed fund to the the wonderful organisation that is the Down Syndrome Centre, you can do so here.

Thank you.

So Little and So Huge

Up to three years ago, I was living in a very cosy little life. Of course I knew that my environment was going to change because grand-motherhood was approaching, but how different could that be from the “same-old same-old” habitat I had known for so long. I had lived through many experiences, acquired a wide ranging knowledge, seen and heard a lot, taking on board some ideas and putting others aside. In my mind, I thought I was “wise” and all I now needed to do was enjoy this wisdom.


And then, on the 10th March 2008, Cathal joined our family. On that day, our lives took a little boat trip, but we did not reach the shores we had anticipated. Instead, we stumbled onto a new world, stepping on shaky ground, in total shock, in tears, in pain, in anguish. To say that Cathal’s diagnosis of Down Syndrome and of Congenital Heart Defects took us totally by surprise would be an understatement.


Personally I knew next to nothing about Down Syndrome. My initial reaction was more of concern regarding the immediacy of Cathal’s heart condition. And the following 16 months had many traumatic moments that I will never forget. But the under-lying presence of Down Syndrome gave me the springboard for a shift in my life priorities.


Yes, Cathal has Down Syndrome. So? He may take more time than other children his age to understand some things. His little body may not be ready at the same time as other children’s to acquire some skills. But he will understand them, he will acquire them, in his own time, at his own pace.

Cathal is teaching me patience, because I cannot rush him.


Yes, Cathal has Down Syndrome. So? He has it in him to do whatever he is capable of doing. I is simply a question of giving him extra opportunities to discover his abilities than with other children: creating an environment, promoting a potential to allow him to grow as far as he can.

Cathal is teaching me faith, faith in him as an individual, faith in his own, personal, abilities.


Yes, Cathal has Down Syndrome. So? He may need to work a little harder than most to achieve, but when he does achieve, no matter how small this achievement may be, the joy we feel is all the greater.

Cathal is teaching me appreciation, of simple joy in the smallest things.


Yes, Cathal has Down Syndrome. So? He has his own strong personality, full of goodness, full of love, full of tenderness and gentleness, full of strong opinions, full of courage, perseverance and determination.

Cathal has taught me that he IS not Down Syndrome, he IS himself, and just happens to have Down Syndrome, just as I have green-brown eyes. He is him, as much as I am me.


Before Cathal joined our family, I thought that I did respect all people. I have since realised this was very much a generalisation, on the surface. The way his parents faced the events following his birth, the courage and determination they showed so quickly to do everything in their power to fight for him, courage and determination that is now manifest daily in all the small but necessary gestures they do for him, make me feel very proud of my daughter and the Dad.

And because of Cathal, I have in the last three years come to know so many people from the wonderful world of Special Needs and Disability, some of whom I now call my friends. Every one of them is Special in his or her own way, but most of all they are special to me because I can in confidence accept them and respect them simply for who they are.

Cathal has taught me the true sense of Respect for others.


3 - 21: On this World Down Syndrome Day, I am celebrating the huge and fundamental changes an extra little chromosome made to my life. I am celebrating my love for a most wonderful human being. Cathal, I would not change you in anyway, you are the most perfect grandson I could have ever wished for. Thank you for being you.

5 Words Make Such a Difference

Our lives descended into emotional turmoil following Cathal’s birth. This new member of our family burst onto the scene with five little words:

Down

Syndrome

Congenital

Heart

Defects

And nothing was the same again.

Huge sadness. Gripping fear. Unbearable pain. Sense of Loss. Un-comprehension. Overwhelming powerlessness. Most of all, for the days and weeks that followed his arrival, the constant worry, relentlessly occupying the mind, physically gripping the body during the day, invading dreams during troubled sleep.

I first saw Cathal in the Intensive Care Unit of the maternity hospital. He was only a few hours old, waiting for his transfer to the Neonate Cardiac Unit of Our Lady’s Children’s Hospital. I was standing by the incubator with the Mammy, and we both agreed he looked perfect. Simply perfect. Yet by then we knew our lives had taken a turn onto a road so less than perfect! And the following 18 months indeed turned out to be so tough!

A few hours after meeting my first grandchild, once back home and talking to my sister on the phone very late that night, I remember saying to her: “He is going to need a lot of love, so much love.... All I can do is love him so much... I can’t do anything else....”


Down
Syndrome
Congenital
Heart
Defects

These words were absent from our vocabulary last Friday morning when Oisín joined our family. When I asked the Mammy “What is he like?” she said “He is perfect!” With a laugh I reminded her that Cathal was perfect too when he was born. “Of course he was. But Oisín IS PERFECT!” Joke aside, I knew what she meant.

Strangely, I did not have any sense of relief at the confirmation that Oisín was as we had been told to expect. Somehow, I was not worried, and even though all the signs pointed to a “no diagnostic needed here”, the shock of Cathal’s own diagnostic had prepared me for accepting anything that may come our way. All I felt was joy. Joy of the anticipation of loving and spoiling another little being, joy for the joy my own daughter was experiencing.

Oisín and his Mammy went home the next day. I had been looking after Cathal and we waited another 24 hours to allow parents and new baby some time on their own before introducing Big Brother to Little Brother. This introduction went very well, and all signs are that Cathal is very accepting, and mindful, of Oisín. I am so proud of him!

But two things struck me on that day: The first was the atmosphere of serenity and joyous contentment in the house. Relaxed faces. Happy voices. Ease of interaction, where no one was afraid of saying the wrong thing, or letting their own angst spill out. Also the ease of looking after a newborn who is in good health, who can feed so easily, who does not have weak muscle tone hampering his sucking, who is not exhausted after a few seconds because his little heart cannot keep up the pace. It all felt ordinary, even (dare I say it?) “normal”.

And then, I noticed how grown up Cathal suddenly seemed. Even though he was the same child as the little boy who had been playing in my house earlier that day, or cuddling up to me in bed that morning, he was no longer the baby. Rather he simply looked older, responsible. He radiated with knowledge, ideas and imagination.

Oisín has no idea yet of how lucky he is to have a big bother like Cathal. Deep inside me is the certainty that I will truly enjoy watching the two of them growing up together.

Do not tell the Mammy and the Dad this, but I secretly hope that the two of them will quickly gang up together and drive their parents demented... You know: “grandchildren are parents’ revenge over their own children”.... ;-)

Oh! The fun they will have!

A second Little Prince!

Un deuxième Petit Prince!

Meet Oisín, Cathal’s little brother, born this morning. Isn’t he beautiful?

Voici Oisín, le petit frère de Cathal, né ce matin. N’est-il pas beau?

Because of restrictions on visits in maternity hospitals at the moment (related to Swine Flu) neither Cathal nor myself have seen him yet “Face to Cuddles”, but Cathal is not too impressed by the photos.... Though to be fair he asked to look at the “baby” again this evening.... Small steps....

A cause des restrictions des visites en maternité en ce moment (à cause de la grippe A) ni Cathal ni moi n’avons encore pu le voir « pour de vrai avec câlins », mais Cathal n’est pas trop sur de ce qu’il en pense en voyant les photos.... Mais pour être juste, il a demandé à regarder de nouveau le « bébé » ce soir.... A petits pas....

One Two Three… Five!

Our Little Genius!

The Wheel of Life

It ended almost the same way it started, very cold, and very white. Almost right up to the last few days of December, snow paralysed our little isle, just as it did at the start of the previous January. Never had we seen the likes of it before. Down to minus 17.5 Celsius! Unheard of in our usually very tempered Atlantic climate.

Also unheard of were the events that brought us where the country now is: in such an economic and financial Arctic winter that my great-great-grand-children might have to pay the final cost it!

I got very angry during the year. The revelations kept coming, some criminal in my view, but who am I to judge, when I am only a taxpayer? An invisible fog kept lifting on the increasing ineptitude of a government which was found to have as much back-bone as an over-cooked spaghetti. Being the person I am, I tried to rationalise the situation, to understand how it all came to pass: I read the articles, I listened to the experts, I watched the documentaries, I followed the debates. And then I sat back and to paraphrase the great Miley Byrne, all I could say was: “Well Holy God!”

I don’t know what 2011 will bring us. But there is one thing I am certain of: I am not going to be bored. The mess has been made, we just have to accept it, and then find new ways not only to clean it up, but to improve, to progress. It is always in times of crises that ideas germinate best. History has taught us this, it’s in our nature, as human beings, to go around in cycles. The Wheel of Life is such a good analogy: it turns and turns, everything is repeated, going up, and down, and up... and yet humanity moves forward, with each turn. On a personnel point, if what is afoot comes to fruition in the next few weeks, I will really look forward to the challenge of doing my little part in the mess-clearing and improvement-setting. Fingers crossed...

And yes, the wheel is turning, on every level. Our own family is moving at its own pace. My own boy has “grown up” a little more in 2010 – though he will probably hate me for saying this. But he has chosen well, she is so nice! My own girl is “growing”, literally, and I can’t wait for this second grandchild to arrive in about 7 weeks’ time. Cathal is an absolute charmer: I was on the phone to him only yesterday, and, as always, he did not say much, but kept chuckling every time I spoke, and then sending me kisses... Major melt on this side, as always.

All in all, 2010 finished on a few good notes, all brought about by very simple pleasures.

Pleasures like Santa Claus bringing Cathal the third character in a series that is now complete for him. He was so thrilled.

Pleasures like ripping open lots of presents on Christmas morning:

NB: Cathal’s Mammy – who has never been much of a morning person – was the one most anxious to get up to see what had been delivered, and had the whole household downstairs around the tree by 7.30 am!

Pleasures like having Daddy pulling you up the hill in an ingeniously-thought-of-by-Mammy sleigh to make sure we could all have a scrumptious family Christmas dinner:

I'm ready, let's go!

Here we come...

Ho ho ho!

Pleasures like teaching Daddy how to use your very first laptop:

NB: You may need to turn the sound up on your pc

And finally the very simple pleasure of walking-walking-walking, especially when Mammy is there for stability and Nana is there to record it all:

Wishing you all the best you can have in 2011.