Thursday, June 3, 2010

Small steps, giant leaps

Noah simultaneously took a small step and a giant leap into the world today. How so you say? Well, today, Noah had his first afternoon in mainstream creche and despite some initial anxiety (on our part...), he got along great. Whilst this seemingly small exercise may not raise too many eyebrows in the rest of the world, to us it is a huge deal as it is the first time he is venturing out into the mainstream world on his own. To date, he has been attending his school regularly with his Mummy (and occasionally his Daddy) and working hard on his speech and language and his physical development. All this work has culminated in a walking; talking (in his inimitable style) almost two year old boy and as such he is ready to take those small steps into the giant world.

Are we proud of him? Absolutely bursting with the stuff. Were we nervous about doing this? Absolutely. We have found ourselves in this rather unique situation whereby the seemingly small things, sending your child into a creche/playgroup with other children for example, are manifested into giant deals which fuel our anxiety, nerve levels and general worry-ometers. Now I know that every parent will worry when dropping off their child for the first time into a new environment and I am in no way trying to garner sympathy or anything like that but we just find these things a bigger deal than perhaps we might have done in another lifetime. Maybe we wouldn't have but I suppose we will never know now. Our goals are quite simple for Noah, aim high and do everything in our power to give him the support he needs to get there. If he needs additional support along the way then so be it, it's no problem per se but personally speaking, is there any point in aiming for anything other than the top for him? Noah will dictate the path of his life himself, we'll just be there to give him all the tools he needs for the trip and today was one of those occasions.

As he took his first small step into the creche today, Noah was unaware of the giant leap he was actually taking. We hope there will be plenty of giant leaps in his life but even if there are just small steps, we'll be there right alongside because one small step for our little man, is one giant leap in our eyes.

Friday, April 9, 2010

Frank-ly Speaking

I first heard of this from Nick's blog (cheers Nick) and it has made the national press in the UK with the Guardian and the Daily Mail taking it by the horns. I commented on the Daily Mail website with the following:

"General theme for the Frankie supporters seems to be "you know what he's like so don't complain". I disagree completely. In my opinion the biggest gripe here and where it all stemmed from is not that he made jokes about people who have Down Syndrome, but rather he just rehashed tired old and outdated stereotypes in which to do so.

My baby son has Down Syndrome and I would have no issue if I saw a comedian making new original jokes about it as frankly would give me something to laugh about, I know others in my boat who would feel the same. What I would and do find offensive is, as the original blog states, lame jokes about people with DS having bad hair and talking funny, bad fashion etc. Frankly it's unoriginal and shows a lack of talent on behalf of the 'comic'. As some have stated here, it's just the playground bully mentality which has no place in the public adult arena. For such a 'risqué', 'intelligent' and 'edgy' comedian, you would think he could do better than this. no?"

At last look, I had an 'up' rating of 135, not too shabby I suppose but am frankly appalled by some of the attitudes of people. Whilst fully realising that the Daily Mail online message board is hardly a true reflection of our society as a whole, some people just really grind my gears with their blasé-ness. Incidentally, the above comment was my second attempt to get on the board, my first unpublished comment made criticism of the Daily Mail and its use of the terms "Vitcims" and "Sufferers" of Down Syndrome, I wonder why I wasn't published? Thankfully I have seen some people manage to force this issue through the moderators, they obviously know a way in that I don't.

I'd be interested to hear your take on the subject so let me know your thoughts...

Monday, January 11, 2010

Hello Again

We're back and with a great excuse for our absence. On the 18th October 2009, little Evan joined the family Muse and made Noah into a big brother all in the same day. Since then I've been suffering not so much from Writer's block but more a case of Writer's inability to find 5 spare minutes to get on the PC and write a blog. Well, this a whirlwind update as we have great news, Noah is up on his feet and taking his first steps unaided into the world with his 12 teeth (yes, 12!) firmly in tow. Whilst still waiting for his accreditation to be a fully fledged independent walker, he is making some really great progress for 18 months old and we couldn't be prouder of him. The below gives a quick example of his new found abilites, aptly backed by 'The Entertainer' music, ever twas it so...

I hope you're still all out there and I will be updating soon with hopefully longer walks, longer words and a longer blog on the last few months with my 2 wonderful little boys. Until then...

On a similar note, a big congratulations to Ava on becoming a big Sister to baby brother Dylan, well done Ciara and Dave too (mostly Ciara...).

Friday, September 18, 2009

Cruisin' and Chattin'...

Noah got fitted for his first ever pair of proper shoes yesterday, a momentous moment in the house of the Muse. He is now a proud wearer of some particularly snazzy Bobo Elephant cruising shoes in an impressive [size] 5G. This need for shoes stemmed from a visit to the Physio department in his school to assess his need for any orthopedic shoes given that he is now officially a crawler and well and truly on the move and up on his feet! The good news was that his upright stance is perfectly 'normal', his heels are properly aligned as he hauls himself up and so he got to have a visit to Clarks yesterday morning to get fitted and kitted out. Despite some initial wriggly toes with the tickly measuring tape, he performed perfectly and took to his new shoes like a duck to water proudly showing them off to all and sundry in Dundrum shopping centre, he likes the limelight it would appear....

After months and months of daily physio, Noah finally got to his feet via the sofa and the coffee table. With the aid of some Happy Straps, he then proceeded to bullet around the house on all fours. Give him a rabbit to chase, ideally a camera strap or his slinky, and he is off. I managed to capture him on one of his ventures so check him out below...

What more incentive could a young man need to crawl than a kiss from his beautiful Mummy...

Beyond his crawling and cruising, Noah is now also starting to put some words and Lámh signs together. Wordswise he can muster "up", "down", "more", "nice" and "again" and signswise he has started the motions of "fall down" and "finish", these are skills he will continue to work on every day and it is truly amazing how much he seems to absorb. Most impressively lately has been his adoption of his own name, check out the below for an example....

The other exciting piece of news from these shores is that Noah is set to be a big brother in the next 5 weeks, his little chum is due to arrive on 24th October so keep an eye out for the updates, as they say in Noah's favourite programme.....isn't that a pip!

Monday, July 20, 2009

Suffering? Really?

I was thoroughly disappointed to read the below in the Sunday Times this past weekend whilst enjoying a bowl of shreddies. I sought out the article online and was heartened somewhat to read the comments at the bottom which agreed with what I was thinking at the time of reading.

Have a read and let me know what you think yourselves...

As Mrs T rightly points out, why is the 'good' story tucked away at the bottom (bottom right corner on the printed copy)? It worries me that the Sunday Times would promote such an article so and I fear it is only going to pander to the negative stereotypes already out there, poor show from the Times.

Friday, May 29, 2009

My Noah, aged 11 months

Welcome to my adventures update. As you will see from the below, I have been keeping very busy with my Mummy and Daddy and learning all sorts of new things.


My first tooths have now broken through which was really sore but now I have two really sharp spikes to bite (my food and Daddy's finger) with!


I am trying to crawl and have managed to go backwards a few times. Each time I try to go frontways, I seem to go in reverse but they tell me I'm nearly there. In the meantime, I stay happy by shuffling around circleyways which confuses my Daddy lots!


I can now say "Dada" and "Mama" which seems to keep Mummy and Daddy smiley. There was one time when I said "more" and "bed" but it could have been a fluke, I'm not sure. My Mummy does lots of work with me every day and it is lots of fun, I even get to play splishy splashy with my ducks which makes a mess and I like it! I also did the Lámh sign for 'Fish' one day which my Granddad taught me to do, he is old but funny!

Some photopics of me...

I can now sit up on my own...

I have great fun with my silver foil cape...

I have been painting with my hands...

...and with my feet.

Check out my work...

I am very proud of this canvas...

I love story-time with Daddy...

I have been practicing on the swings...

And am getting really good at it!

I don't understand why Mummy and Daddy have those silly glasses on...

I like driving my new car...

I like it a lot...

I love standing up for a mummy cuddle...

This is my Formula 1 Debut, just call me Jenson "chocolate" Buttons...

Me and my pals playing in the park, it was BLOOMin' great fun!
(Ava was there too but we missed her in this photosnap).

Thanks for reading about my adventures, lots of cuddly smiles to you and see you next time!

Noah x

Tuesday, May 12, 2009

All You Need Is Lámh

This article can be seen at the following link:

When we think of communication, almost always our first impulse is to relate communication to speech and speaking. Conversation, dialogue, monologue and soliloquy are all means in which we can convey our message by using words and articulating them in a way that can be understood by our audience. To the majority of us, speech is a skill or facet that develops quite naturally and as a matter of course in our development as individuals.

We learn as children from those around us, initially our parents and siblings and then from friends, peers and ultimately our teachers as we progress on our educational path. To some, speech and language become essential tools in professional life, to others it is merely a means to an end but what is certain is that to all, speech is a vital component to maintaining a standard of living in accordance with individual circumstances. To imagine ones-self without the powers of natural speech and communicative delivery is a concept quite alien to most of us. We can understand, perhaps even empathise, but we will never truly grasp the reality of such a situation.

So then, what of those to whom speech does not come naturally and is something that is a constant source of struggle, conflict and hardship? What of those with developmental and learning difficulties? What of those like my Son?

My Son Noah has Down Syndrome and can potentially expect delays in his speech and language development. Potentially at this stage because, at ten months old, it is too early to be able to say with any certainty how his development will progress, however this area of development in children and adults with Down Syndrome can traditionally be one of the more common attributes associated with this Syndrome. Of course, the variance between individuals is vast, whilst some will certainly struggle, others will experience little to no significant delays in speech and language development, whilst many others will fill the expanse in between. As in every area of life, everyone is different and nobody conforms to the textbook.

Communication itself is a far wider spectrum than merely speech and speaking. As we are discovering with and through Noah, the ability to communicate goes way beyond merely the formation of words. Noah currently attends a Speech and Language therapist who prescribes a healthy dose of fun games and activities for him to work on each day, so as to give him the best possible chance to hone his communication skills. As an example, through stacking cups upon his vocal command, he learns about cause and effect. Banging toys together enhances his bilateral hand function and selecting one favourite toy over another improves and develops his choice-making abilities. None of these activities are purely focused on speech, but all are intrinsically bound up in Communication and will ultimately aid his speech and language skills. One of the major communicative means that is used with children who have learning difficulties is visual sign language, more commonly referred to as 'baby-signing' , in Ireland this is known as Lámh and this is something we practice with Noah.

Lámh was developed in Ireland in 1982 by Speech and Language therapists, Psychologists and Teachers and has evolved since that time by incorporating the specific needs of parents and family members. Lámh comprises some 500 individual signs ranging across Object signs (e.g. book, ball, apple), Action signs (e.g. eat, drink, wash), People signs (e.g. Boy, Mummy, Daddy), Social signs (e.g. Hello, Yes, Thank-You) and Modifier signs (e.g. good, bold, more). Lámh is based on Irish Sign Language (ISL) and many signs will be the same however a number of Lámh signs are simplified versions of ISL signs and do not involve as complex hand shapes and/or movements. When using Lámh signs with a person, the spoken word is always used in conjunction with the visual sign. This allows the person to both see and hear the message being portrayed and in turn can help them to understand and learn the word more clearly.
As people with learning difficulties can have difficulties in communicating their message through delayed speech development, this can lead to frustration as words are often required to be repeated until they are clearly understood. A medium such as Lámh minimises the need for second guessing what a person is trying to say as the sign can be immediately recognised if the spoken word is not so, ultimately allowing the person to become more relaxed in their communication, which in itself can often help in producing and pronouncing words more clearly.

When using Lámh with Noah, we have started with a few simple signs. Noah and Daddy play with the 'ball' on the floor, Mummy gives Noah something to 'eat' and 'drink' and Noah is a 'good' boy when he takes a mouthful of said food or drink. There are many rules to follow when using Lámh and firstly would be to attend a course given by a qualified Lámh teacher, it is not something that should be picked up from merely looking at the picture cards provided. It is very important when signing that you are facing the child and they can clearly see and hear the sign being made. Not correcting mistakes in the early stages is important, whilst keeping the signs used consistent and correct, even if the child makes it incorrectly themselves, is another important factor.

Lámh signs can be incorporated into songs and nursery rhymes too as Itsy-Bitsy Spider will attest to in our house, making it a fun activity encouraging the child to join in with. Further to the songs, we also try to incorporate Lámh signs into Noah's story books where we can prior to bedtime. Naturally at this early stage with Noah, we are not expecting him to start signing back to us, however our hope is that the messages we are sending him are slowly but surely infiltrating his understanding, so that, in time, he is able to communicate clearly with us, either through speech and language or through Lámh signing.

In contrast to the title of this article, Lámh is not 'all' you need but it certainly provides a good set of tools to get you started on the road to communicating with your child and, hopefully, for them to start to communicate back to you.

Thursday, March 26, 2009

I Heart You

You may be aware that The Muse has been noticeably quiet lately, well there is good reason for this. I have recently been asked to write an article for a new Irish website for Dads ( and so you can find my first offering at On top of this, myself and Mrs T have spent three of the last four weeks at St. Michael's House attending a Lámh course, I shall be blogging about this in my next post (it's in progress) so won't spoil it for you just yet...Finally, we have last week taken Noah back to Crumlin children's hospital for his 8 month cardiology checkup to see once and for all if the three holes (VSD, ASD and PDA) that were loitering with intent in his heart, had closed up.

Well the excellent news is that his biggest hole, the VSD, has completely closed up and he has only one tiny hole remaining at the top of his heart. Noah is not due back to the clinic for two years and just for a brucey bonus, we have had it confirmed that he will not require any surgical intervention based on the current state of his heart. The sheer cathartic relief of this news was an exceptional feeling, an almighty sigh and thankful look towards the heavens was offered and it brought to a close one of the darker clouds that had been hanging around since Noah was born. Good times all round.

Some quick updates on Noah's world at the moment; Noah has recently been to swimming lessons in what can only be described a simply marvellous swimming suit, Noah has been on his first trip to the playground and is a fan of the swings but still remains sceptical of the slide, Noah has watched Ireland win their first Grand Slam in 217 years and was also delighted to see England pull off a remarkable second place (no, we're still not sure how that happened, still could be worse, could be French. Or Welsh...), Noah has been to his first Paddys Day Parade whilst suffering from a nasty bout of the snuffles and Noah has been on his second aeroplane trip to England and is easily the most comfortable flyer in the family. Enjoy the below pictures of the man in question and stay tuned for the Lámh post coming soon....

"they want me to weart this to the pool? will have to give this some thought, hmmm...."

"now I like this, mind me hat...!"

"oh my lord, I think that kick is going over..."

"ha ha! never in doubt, oo-er...."

"very nice Daddy, but those men are wearing skirts and we haven't been to the pub yet..."

Friday, February 13, 2009

Today's the Day

What does today mean to you? I don't mean 'today' as in a carpe diem 'oh captain my captain' style moment, but literally today, February 13th, what does it mean to you? In all likelihood, it probably doesn't have any particular resonance but today is a most explosive date in the most literal of senses. It was 64 years ago on this date that the Allied forces bombed Germany and in doing so, made a ghost town of Dresden, it was 44 years ago on this date that the American's bombed North Vietnam under the guise of Operation Rolling Thunder and in an unnerving series of coincidence, it was 18 years ago on this date that the Allies bombed Baghdad in the first installment of 'Bush goes abroad'. For me, this date usually instills the annual Valentines inspired panic, the one most men can relate to, that being when she said "we won't bother getting presents", did she mean it or do I still have to actually buy a present because despite what she said, she has gone off and bought me something regardless, beautiful lunacy at it's most pertinent. Beyond the commercially enforced romantic ideals, this date was much like any other to me, dutifully turning up once a year for 24 hours of regular daily life. Last year however, on this date, our own personal bomb was dropped into our lives and the aftershock that Down Syndrome was now a part of our lives rebounded through us again and again as we came to terms with the new life emerging forth as the chaos settled around us.

The first blog I composed spoke of the infamous phonecall, as I scribe here today it is hard to comprehend that that phonecall was precisely one year ago. It doesn't just feel like a different age ago, it feels like it happened to a different person. The bloke that took the call one year ago is not the same bloke that sits here today. This is not meant to be taken negatively, nor is it a despairing call for pity, it is just the stark reality of the situation. I am glad the last year has changed me so convincingly, I am glad for the new perspectives I have on life, for the new skills I have learnt through Noah and for the almost encyclopaedic banks of information I now have on Down Syndrome and Special Needs. I am almost embarrased when I think about the unerring ignorance I existed in prior to Noah and the multifarious talents he has brought to our table. I know I shouldn't be embarrased by this, but it does feel like that sometimes, it actually gives me a sly smile when I think about it to be honest. By no means am I asserting that I am now a 'complete' person or any other holistic related mumbo jumbo but it certainly feels like there is more of me now than perhaps there ever was before if you can make sense of that. Allow me to elaborate...

When Noah arrived into our lives, something was triggered within me. I don't know and cannot articulate exactly what this was, but I do know that for the first time I felt that I was exactly where I supposed to be, both physically and spiritually. Was I always destined to be a Daddy? Is it that factor that will define my life? Was I purposefully sent down the fatherhood track without realising it or is there more still undiscovered within me that will require another monumental shift in my appreciations? I hope so, but one thing I have come to appreciate over this past year is that the unexpected is the only stable aspect of my life. We cannot rely on that which we already know as we are merely constrained by these knowledge boundaries, in order to fully perceive our existence we must embrace the unknown and realise that it is the instantaneous that defines us and emboldens our future. I never knew I would be a Daddy, I hope I would be but I never knew for sure. I certainly never knew that I would be a 'Special Needs Daddy' but this is who I am today. The old, childless version of me is gone and in his place I now stand looking to the future and waiting for the unknowns to define my next chapter.

Today's the day the bombs went off, today's the day the smoke cleared and today's the day it all started to make some semblance of sense. I hope you find your today as I have found mine, it is a great way to spend the day once you finally get there.

Happy Valentines to you all, I hope your love is chocolately and heart-shaped.


Noah visited Crumlin Children's hospital on Monday for his detailed eye exams. I am delighted to be able to say that he passed with flying colours, shapes and sounds on all counts. We shared the exam with Bob The Builder (can we see it? yes we can!) and Barney the dinosaur (still annoying as an inanimate plastic toy) and Noah was on top form following all the stimuli around the room. Our doctor requested to see Noah again in a year and a halfs time for a status update but was confident that he wouldn't discover any change (turns, squints etc) in Noah's eyes based on this weeks review. Great news all round and well done to Noah's peepers, now I know he can definitely see me and is actively choosing to ignore me most of the time....the little rascal.

Monday, January 26, 2009

Eye Eye Captain

Erasmus once said, "In the land of the blind, the one eyed man is king", well, I am as blind as a doorpost and so was holding out much hope at Noah's recent eye test at St.Michael's House that he would at least be one-eyed and as such, the King of all around me. Noah is due in Crumlin Children's hospital in the next two weeks for a more detailed eye exam so this preliminary check-up would serve as an hors d'oeuvre for us to establish whether there were any major problems with Noah's eyes and as such, his sight.

The first task was for the doctor to apply some magic drops into each of Noah's peepers. They may have looked like ordinary eye drops, but the magic of this particular potion was that within a matter of minutes, they turned Noah's headlamps into something resembling the below...

After fifteen or so minutes and a rapidly expanding waiting room of overly wide-eyed children, we were taken back in for the assesment. Seeing the handheld light that the doctor was wielding and directing in his eyes, Noah clearly mistook this for a Vogue fashion shoot (or other such popular magazine, I'm not entirely down with what the kids are reading these days...) and duly posed over each shoulder much to the amusement of the doctor and particularly his Mummy and Daddy. To say he was a little charmer in the doctor's office would be to understate the sheer astonishing levels of flirting he managed to reach, Daddy was proud... ;o)

The doctor was pleased with how his eyes looked which was good news, she noted that there was the possibility of a slight turn in his right eye but only to come back in (earlier than his next appoinment in six months time) if we deemed it to be significantly noticeable. Having never noticed it in the first place, we were not overly concerned by this but will dutifully keep an eye on it so to speak. We both fully anticipate Noah having to wear glasses when he is older as the pair of us have to scrabble around for our specs first thing in the morning and so Noah will be doing considerably well to escape the clutches of our short-sightedness. Having Down Syndrome merely increases his already likely chances of having problems with his sight but in this instance, I personally think that he will be facing the same challenges as an extremely high majority of the population. Look around you at your peers, friends, family, colleagues etc and see who amongst them has perfect vision? Yes, some people are blessed with a perfect set of mince pies and all power to them but in a world where plain glass glasses (i.e. non-prescription glasses) are worn as fashion accessories, I don't think that poor eyesight carries the same social stigma that it perhaps once did. Maybe I'm wrong and just justifiying it for myself I don't know, but assuming that Noah has nothing more than short/long sightednesses to worry about I think we'll be ok on this one. On that note, I have included below a few links to some further information on the potential issues that persons with Down Syndrome may have with their vision, I would encourage you to take a few minutes out to browse through to see that there's potentially a lot more to it than reading letters off a chart on the wall...

Stay tuned for the update from the Crumlin check-up and as they say round these parts, "I'll be talkin' to ya..."

Tuesday, January 13, 2009

"We'll take a cup of kindness yet...

...for auld lang syne." Happy New Year to one and all, welcome to 2009 and here's hoping that the turbulence of 2008 rescinds somewhat this year. Ching ching to that.

The festive season brought Noah into contact with those magnificent men in their flying machines en route to England for a Christmas at Granny and Granddad T's. Something I was dreading to be honest (the flying experience that is, not Granny and Granddad...) actually turned out as well as we could have hoped for, reasonably quiet airports, no screaming on the plane and no delays of any significant note (excluding Granddad T's attempts to get out of the car-park but that's for another day...) lead to a relatively stressless experience. A wonderful Christmas was had by all and similarly the New Year's jollies down in Co. Clare were also excellent. Most were enraptured by little Noah and his unbelievable growth in size, hair and reaction which we were delighted with. He is now at the charming stage of smiling on cue, laughing at Daddy (someone should be...) and generally being a whole bag o' cuteness. The below clip is taken from Christmas and shows Noah at his most delighted, in his Mummy's arms having a good old chuckle...

I have captured a few of the Christmas / New Year moments in the third volume of The Gallery, which can be accessed via the below link. Enjoy the pictures...

The New Year to date has brought with it a stockpile of snuffles for Noah who is now sleeping in a Karvol paradise, a viral infection which had lead to three daily administrations of his whopper-sized inhaler (regular puffer with top Gun pilot style face mask and accompanying tube) and quite simply the runniest nose in Western Europe. Despite all this nasal-based unpleasantness, Noah has been in great form and can always be relied upon for a smile and a cuddle which are so desperately craved amidst the January blues. His physio is progressing well; he is now sitting up by himself, admittedly holding himself up with his arms but still some great progress. He is mastering the press-ups despite his protestations when he is put on the floor mat for his daily workout in the gym. Next stage is to master the crawling motions and see if he can propel his little frame across the floor unaided, we are realistically expecting a good few more months before this happens but if you're not optimistic yourself then who else is going to be for you? For my own part, I am resolving to writing a blog post at least every two to three weeks so you are fully entitled to hold me to that and lambaste me if I should not hold my end of the bargain. I will wrap up this post in the same manner in which it began, with the always relevant words of Robert Burns.

We two have run about the slopes,
and picked the daisies fine;
but we’ve wandered many a weary foot,
since auld lang syne.

For auld lang syne, my dear,
For auld lang syne,
We’ll take a cup of kindness yet,
For auld lang syne.

We two have paddled in the stream,
from morning sun till dine;
But seas between us broad have roared,
since auld lang syne.

For auld lang syne, my dear,
For auld lang syne,
We’ll take a cup of kindness yet,
For auld lang syne.

And there’s a hand my trusty friend!
And give us a hand o’ thine!
And we’ll take a right good-will draught,
for auld lang syne.

For auld lang syne, my dear,
For auld lang syne,
We’ll take a cup of kindness yet,
For auld lang syne

Tuesday, December 30, 2008

One for Granny and Granddad

"Nobody can do for little children what grandparents do. Grandparents sort of sprinkle stardust over the lives of little children. - Alex Haley"

Having spent this yuletide season with my own parents and Noah's grandparents, and spending the new year festivities with Mrs T's parents, conveniently enough also Noah's grandparents, I am delighted to post the below advertisement for the upcoming Grandparents Information Day hosted by Down Syndrome Ireland after some sterling work from the tireless and ever-excellent Nan P.

I was fortunate enough to visit my own Grandmother over Christmas and introduce her to little Noah. As my sole surviving grandparent, it was a special moment when at 92 of your finest years old, she was able to hold my little boy and remarkably quieten his incessant snoring up to that point. The quote at the top of this page alludes to the stardust that Grandparents sprinkle and, maybe it is the Christmas cheer lingering in my system, but I am warmed greatly by that allusion. Christmas has a slight shadow chez The Muse as we sadly lost my own Granddad Mac at Christmas time many years ago now and Nanny Mac too during December but in Noah, we now see new Granny and Granddad memories being forged and this is a delighful thing to behold. Too often grandparents are overlooked but with events like the below-mentioned starting to take shape, this should happily no longer be the case. If you only make one New Year resolution this year, be sure to think more of your own grandparents and make that extra effort where you can. Our own parents too need us in the hard times as we have so often needed and relied on them, and as they take the new path into Grandparent-hood, let us all help them along this most unknown of journeys. Fair tidings to all and to all a good night.


14th January 2009, 10.30am - 3.30pm, The Trinity Room. The Gresham Hotel, O’Connell St, Dublin 1.

Facilitated By: May Gannon - Counsellor. Joan Murphy - Clinical Co-ordinator. Grainne Murphy - Independence Officer. Pascale Claes - Grandmother.


Phone the National Office on 01 4266500or email to confirm your place!

Monday, November 3, 2008

Can you hear me, Major Tom? Part II.

Well, that was one of the toughest and most stressful days I have put down in a considerable amount of time. Results-wise, it went fine, it wasn't spectacular but it wasn't a disaster, more of which in a while but it transpires that Noah's right ear is perfect whilst the left-most fella is not quite breaking any hearing records but has some definite levels of hearing and nothing to raise any alarm bells. The slight discrepancy between arising from a suspicion of congestion based fluid in some part of his ear system (the science escapes me). Everything aside from the result though, was an unmitigated stress-fest.

From the time we arrived in the hospital to the time we finally departed was a cool six hours. Upon arrival we bumped into some friends we had met at St.Michaels House as they were in for their little chap's heart operation, we haven't heard how they got on and so we are wishing all the best to little James and we hope everything went well. We made our way to the appointment area with the instructions ringing in our minds that Noah should be "sleepy but awake upon arrival". Now, in my admittedly limited experience as a Daddy, I have seen two distinct phases of Noah alertness, wide-awake and fast asleep. This concept of "sleepy but awake" was a new one on me and so with some trepidation we checked ourselves in. The doctor came out to us in the corridor to assess Noah's sleepiness levels and basically prep him for the test which involved a sticker on his forehead and one behind each ear (see images at the bottom of this post for examples). Essentially, when the test was ready to begin, we were to snap our fingers and he was to drift unassailably off to sleep for the duration of the test without stirring once. As the mockneys from my area would say, "you're 'avin a giraffe ain't ya?". What happened in practice was that after some serious walking up and down the halls with accompanied giggling and swooshing noises, an asleep Noah was bought in in my arms and was ready to be hooked up to the various computers and machines. As each crocodile clip was applied to his triumvirate of head stickers, he flinched aggressively and more worryingly, his one eye was starting to creep awake. Pretending I couldn't see this happening, I attempted to hold him in place whilst giant cotton buds were inserted into each ear and sounds waves sent down them. Net result was one awake baby right there in the sound proof room. A miserly attempt to get him back to sleep was as successful as a government budget policy and so we were sent back out with the instruction to return a couple of hours later. We were rapidly realising that the odds were heavily against us and if he didn't sleep through the next attempt, we would have to leave and come back another day. Now, when you have specifically taken a sparse holiday day off work to get this done, the prospect of having to come back, circumnavigate Crumlin for a parking space and do it all over again, was about as appealing as the food choices on that I'm a Celebrity nonsense blah blah whatever...

It was midday and we were faced with returning at 3pm with an asleep Noah. Ok, battle stations. If we could keep him awake, we reasoned, for 2 and a half hours we should be fine and given his fondness for wide-eyed awakery this should be a relative breeze. Ah, but he needs to be fed. Ok so, give him the bottle but keep him entertained whilst he chugs it down. Bottle finished and he's still awake, good good. Back to the waiting room to sing songs and generally stimulate him enough to distract him from the looming tiredness that was rolling its way towards him. It's now 1:30pm and we are again pretending that we can't see his eyes starting to hang heavy, the wheels on the bus were going round again as was the boat being row rowed gently down the stream. At 1:45pm we are consigned to the fact that we would have to spend a second day here as he finally beat off the wakey-wakeys and succumbed to the cuddly slumbers. A valiant effort from the young warrior but he just couldn't man the trenches any longer. As he snoozed soundly, we looked for the doctor to inform that we would come back another day.

A lifeline! The little twins who were booked in until 3pm could only half finish the test with one of them waking halfway through and refusing to return to the sleepy confines of the soundless room. Boo for them but a mighty hurrah for us if we acted quickly. Within a matter of seconds we had Noah back in the test room in his chair hooked up to the necessary and basically implied to the doctor it was now or never through a series of SAS-esque call signs and hand gestures. I watched the clock tick the seconds by and each audible click of the hand forced another bead of sweat to escape my brow and trickle painstakingly down the side of my face. Every movement by us seemed to be amplified tenfold and I recall the thumping heartbeats as the doctor tweaked and readjusted the inner ear buds and the various wires. Please don't wake up, please don't wake up, another five minutes down, please don't wake up, another...30 seconds are you joking? Please don't wake up., please don't wake up. Now, I have to hand it to Noah, when you gets into a sleep he certainly makes the most of it and his little snores pierced the silence of the room. After an undetermined amount of time and sweating, we got the thumbs up form the doctor that it was all over. Praise. The. Lord.

After the results summary and a referral to the Ear Nose and Throat department to check the congestion levels, we were free to go. I can understand the need for a child to be asleep during the test but seriously, whoever designed this test has clearly never come into contact with a child, maybe even another human as lets face it, who can honestly just drop off to sleep at the behest of a doctor in a strange room with a rather peculiar smell if we are being honest? If the test was conducted in your own home fair enough, but I just cannot see that it is feasible for this to work every time and surely there is a cost loss element here if doctors, equipment and space time is being used for unsuccessful testing? Maybe not I don't know, but it just seems a mad way of doing things if you ask me (which, I realise you are not but there you go).

So there you have it, our big day out at the hospital. I was sorely tempted to see if there were any spare beds going where we could grab a recovery lie down but if you are in any way aware of the available resources in the hospitals currently, you will appreciate the futility of such a request. We returned home thoroughly knackered to put it bluntly, reassured by Noah's ears but questioning our own sanity after the day we had put down. Hopefully now Noah's congestion is nothing too serious and nothing that a drop of snuffle babe won't sort out, it just mean's there will be another appointment on the horizon that will bring with it a new set of worries and concerns, likely high levels of hospital related stress and hopefully a healthy little boy on the other side. Nobody said it was going to be easy and for once, I am in agreement with the masses.

Wednesday, October 29, 2008

Can you hear me, Major Tom? Part I.

This week brought with it some outstandingly cold weather, more turmoil in the global markets, a new England rugby captain (go on Steve) and what looks to be the next President of the United States, but most importantly it brought little Noah's first hearing examinations at Our Lady's Children's Hospital, Crumlin. I am writing this post in two parts, the first is written on the eve of Noah's appointment and the second shall be written post-op as it were.

The Day Before
I am sure it's going to be fine. Why do I think this I hear you probably not asking yourselves? Well, based on my restricted abilities in the field of audio-examination, I think Noah can hear just dandy. When I rattle Conor the Crab or Freddie the Frog, he seems to react to them, his eyes certainly follow them as they dance their merry jig around him. So what is this niggling doubt hibernating in a corner of my mind, what am I basing it on and how worried am I about it? There is one aspect that I cannot escape from at the moment in matters Noah and that is the exaggeration of anything other than perfection and the consequent attribution to Down Syndrome. Allow me to illustrate this for you, I rattle Freddie the Frog at Noah's right ear and he reacts, however I then move Mr Frog to the left ear and repeat the rattle, no reaction. My mind instantly divides like the Jedi force, the Obi Wan Kenobi Muse says that Noah is either bored or tired of this game or simply didn't react for any number of rational reasons whereas the Darth Vader Muse starts to panic that he can't hear in that ear because he has Down Syndrome. Similarly when he drops his toy to the floor (that inicidentally he has held impressively for a good minute or so in his tiny but fearsome grasp), the dark side overpower the rebel alliance by forcing me to wonder if his strength and muscle tone is ok because of the Down Syndrome. Having just re-read my words, I realise how senseless it appears. I like to consider myself a rational man and am not generally one to suffer paranoia, am not overly-reactionary and can usually be relied upon to make a measured decision when required so why are these thoughts allowed to creep in? I have been giving this some serious thought of late and I believe it can be boiled down to two very simplistic points.

1. I am a new Dad who is worried for his little boy.
2. I am assuming that Down Syndrome is a negative thing.

Allow me to expand on these points. Firstly, if the Doctor had told me at Noah's birth that he had a blocked nose or sore throat, I would have worried everytime he sneezed or coughed in case it was hurting him and causing him distress. Noah is still egglike in his baldness and as such, I worry every time the front door opens that the cold will be getting to him. If he hasn't brought up any burps after his bottle, I worry that he may have a pain in his tummy. If he hasn't wee'd on my arm during a nappy change for a while, I worry that the top to bottom highway is congested and traffic is not flowing freely through. Basically, I worry at the exact same level as all newbie parents about things that our own parent's would probably scoff at with a raised eyebrow and a "this generation" type remark. None of these worries are founded in Down Syndrome but I have found that this does cause an exaggeration of the worry where it is probably not warranted.

This brings me neatly around to my second point, that being the assumption that Down Syndrome is a negative thing that should be worried about instead of in fact being celebrated. Why are there such negative connotations attached to 'special needs' or so-called 'disabilities' in society? Is it stemming from looks? Within an image-obsessed society (don't believe me? check out the magazine shelf in your local shop next time you are in there) , the fact that our children look 'different' and don't conform to the 'norm', I truly believe frightens people and this manifests itself negatively into the attitudes of the masses. Does negativity stem from some sort of intellectual snobbery? Perhaps it does. Do the results of an IQ test make you less or more of a person, not a logical thinking machine mind, but a person? In the course of a regular day, it is more than likely that you will encounter people spanning the entire spectrum of intellectual ability, do you register this or only when the person has so called special-needs? When I look at Noah, I see the cutest little boy, not the cutest little 'down syndrome boy'. I don't see slanted eyes, I see Noah's eyes. It is amazing that only when I am away from him do I start thinking about Down Syndrome and the challenges that brings. Principally, the challenges we face are all medically-based and we of course wish we didnt have to go through these nerve-inducing tests but I wonder is it any different for any parent out there? I have never heard of the child who was never ill, who never had to go the doctor and who was able to excel in every facet of life so why are we always measured against an apparently mythical persona? Since Down Syndrome has become a part of my life, I have found myself swimming against the tide in terms of attitude and perceptions well it is time to change that and I am starting now. Any person who has Down Syndrome or any condition under the bracket of 'disability' should be celebrated for who they are and what they can bring to the table, not derided for what they will never achieve nor pitied for how they look or act. I personally see that we as a society have no right to make these kinds of judgement calls about others. I am worried about Noah's hearing exam, I hope he can hear perfectly but if it transpires that he does have some issues in that department then quite simply, so what? We will deal with it like every parent deals with grazed knees, bumped foreheads and streaming noses, we will deal with it because he is our little boy and we love him, we love him because he is himself and whatever else he brings with him is ours to revel in and celebrate. Take it away Ziggy...

This is Major Tom to ground control
I'm stepping through the door
And I'm floating in a most peculiar way
And the stars look very different today

For here
Am I sitting in a tin can
Far above the world
Planet earth is blue
And there's nothing I can do...

Tuesday, October 14, 2008

Gettin' by with a little help from my friends

For a chap who has only graced the earth for just under four months, Noah has certainly made an idelible impression on the Dublin social scene. Quite the little groover, he mixes it up with his equally cool chums on a weekly basis.

The Crew

Noah's gang of buddies that play together on a weekly basis whilst their respective mummies set new records for tea drinking.

A splendid set of young 'uns if ever there was one, greatly encouraged and enthused by the below rabble whom I have assigned the rather grandeur title of "The Blogger Alliance".
More Windows XP than X-Wing Fighters but a formidable outfit nonetheless.

Ava's Dad

Awards should be showered on this blog for quite possibly the greatest passport photo in living memory, an excellent blog from a fellow dad.

Putting The Muse to shame quite frankly with a wealth of information available on this, my favourite mummy blog.

Un autre blog fantastique qui offre un regard différent à la vie d'une perspective d'une grand-mère. (excuse mon francais Nan P...)

Jacob's Dad

The first daddy blog I came across when the news broke for us. The inspiring words of Nick and the excellent and amusing pictures of little Jacob provided great support in the early days. A great blog from an adoring dad, a thoroughly nice chap in real life too.
Noah is kept regularly entertained by his ever-growing set of toys, ever-growing in that we just cannot resist buying him a new fellow whenever we see one. Great for Noah, not-so great for my ever-straining bank balance. The core of this band of comrades are, what I like to term, The Rat[tle] Pack. Introduce yourself to them below:

(from the left)
Sammy the Snail
Percy the Penguin
Billy the Butterfly
Squeaky the Pig
Olly the Octopus
Conor the Crab

Honorary Shoutouts

To all the parents we met at St.Michaels House. Back in early 2008 when our lives were mapped out for us so, I could never have conceived of how such a seeming adversity would bring myself and Mrs T to meet some truly outstanding individuals. Through St. Michaels House, we were fortunate enough to meet a wondeful group of parents, who, like ourselves were raising babies who have Down Syndrome. I was particularly encouraged by the manner that each parent was beginning to come to terms with their life's new direction and it instilled a hope certainly in myself that everything was going to be ok. It sounds somewhat dramatic but the sheer unknown hand that we were suddenly dealt by life's croupier did leave us in an emotional wilderness for a while but, having spoken to all the new Mums and Dads as we did and seeing their determination to provide the best lives possible for their children, the said wilderness is now filled with laughter, hope and confidence. Thanks to all we met and see you at the Christmas do for a mince pie and a small port.

Tuesday, October 7, 2008

The Gallery vol. 2

Another six weeks are up so it is time for the latest installment of The Gallery.

As before, The Muse has provided some mood music for you to enjoy whilst browsing the gallery so follow the below links and say hello to the little man.

The Gallery mood music...

Browse The Gallery...

Whenever you fancy taking a trip out of the box, come by, say hello and we'll always be here to welcome you...

Friday, September 12, 2008

Headlamps and Wigglepants

Noah is 3 months old now. In stark contrast to his excellent progress, I am acutley aware I have neglected my blogging duties of late and for that I offer my apologies to the loyal fans of The Muse (I'll buy both of you a pint when I'm next on the ramble in town...).

To detail the last 2 months or so into one post will require a whistle-stop tour at breakneck speed so I hope you're paying attention because, as Henry Kelly used to say, you're playing catch-up*.

Location: Coombe Baby Clinic
No. of Visits: 2
Injections Administered: 4
Outcomes: Initial low thyroid level, subsequently restored to 'normal' level. Umbilical hernia detected (impressive 'outy' belly-button to you and I), to be monitored over the coming months.Good physical display on the Physio's benchClean bill of health so far, hurrah!

Location: Crumlin Children's Hospital
No. of Visits: 1
Examinations: 3
Outcomes:3 holes in his wee heart detected, 1 x ASD at 4mm, 1 x VSD at 2mm, 1 x PDA at 2mm. Nothing major to worry about apparently and not due back in Crumlin until March 2009 so fingers and toes crossed the holes will close naturally.

Location: Local GP
No. of Visits: 2
Injections Administered: 2
Outcomes: No major reactions to the 2 month injections aside from a few wails and tears, a rather impressive plaster on each thigh and a squirt of Calpol to ward off the demons.

Location: Coombe Physio
No. of Visits: 2
Outcomes: An A+ in gym class for Noah, he is quote "defying the odds" with his physical progress. Marvellous news and a new workout regime for him to get busy with.

That about covers it from a medical perspective, it may seem like I have down-played this but to be honest it is not really an area that I want to be focussing solely on. Noah is really thriving and I would prefer just for now to talk about Noah the little boy instead of Noah, the little boy who has Down's Syndrome. I don't want this to read like denial (or any other big rivers in Egypt) about his syndrome, its just that at this moment in time it is not wholly relevant as he seems to be in very good shape. He is very alert and has made some great friends in Billy the Butterfly, Percy the Penguin, Sammy the Snail and a whole posse of rattly toys. Billy, Percy, Sammy and the gang all keep Noah heartily entertained and he is more than able to track their movements through the Fisher Price jungle, stalking their every [mummy and daddy generated] moves and strengthening up his neck muscles.

This brings me nicely to the title of this particular blog. Daddy has a habit of conjuring up nicknames for the little man and the first was Headlamps. When Noah first began to open his eyes, we were enraptured by the saucer-like eyes staring back at us, he wasn't the rabbit caught in the headlamps but rather the headlamps themselves. The defence presents exhibit A in support of this assertion:

A penchant for wiggling and not being able to sit still for more than say 8 seconds at a time lead me to coin the monikor of 'Mr. Wigglepants', or just 'Wigglepants' for familiarity. I have also determined that Mr. Noah is the King of the Wiggles and his adventures as such shall be published in due course. These stories shall document the adventures of Noah as he meets such luminairies as the Sneezy Tishoos, the Wakey-Wakeys and the Sleepy Bye-Byes but all in good time dear reader, all in good time. Back to the Wigglepants. Ever since Noah was born, he was like a jellied eel when you held in your arms and instilled the fear of a thousand warlords in me in the early days that I was going to drop him or he would somehow miraculously leap from my arms across the room like a Russian floor gymnast but without the big hoop and inexplicable ribbon on a stick. This wiggliness (its a word, look it up...) has manifested itself in the most wonderful fashion though and has enable Noah to bulk up impressivley in his quest for glory in the Fisher Price jungle floorshow. The below show Noah at his utmost wiggly and I hope you can share in the enthusiam so audible by his doting parents.

What a legend I think you will agree (bear in mind too that he is only 10 weeks old in the above). Apparently, because he has Down's Syndrome, he will have lower muscle tone and it will take him longer to begin rolling, crawling and walking. Ok Mr. Medicine, you have cast your die and I see your pessimism and raise you a Noah. We shall see my learned friend PhD, we shall see...

The second volume of The Muse Gallery shall follow very shortly as well as an honorary shoutout post to the newest friends of The Muse, Mrs T and Mr. Noah. Again, I bow my head in repose and ask for your redemption for my literary absenteeism of late, it won't happen again Sir, the dog ate my homework...

*A virtual prize and online big-up to the first reader to correctly spot the reference...

Saturday, August 16, 2008

The Gallery vol. 1

I am using this post to publish a link to one of my Facebook photo albums showing pictures of Noah taken from his birth to six weeks old.

For all childhood Tony Hart fans, play the Gallery music first by clicking on the first link below, this will take you away from The Muse so use the back button on your browser (once the music is playing) to return and then open the gallery link (2nd link below).

The Gallery mood music...

Another post is on the way shortly so drop in on your worldwide web travels and say hello (just like Morph...).

Wednesday, July 16, 2008

Hello Noah

After 2 weeks now, I think I can say that my mind has calmed somewhat from the spinning whirlwind I was in and I am able to think reasonably straight enough for another blog post. To say we were caught by surprise would be understating the fact that 12 days ahead of his expected arrival, little Noah decided enough was enough in his womby residence and started knocking on the proverbial door to be let out into the world. I may have previously mentioned that one of my biggest fears for the birth was to be either stuck at work or stuck in traffic once the call came through that the time was upon us, thankfully this passed without incident and I was able to drive Mrs T through the city to the hospital in the relative calm of 8pm traffic. With the exception of the Garda checkpoint literally 100 yards from the hospital (cue lots of frantic pointing to the pregnant belly and shouting from me to the bemused Garda), we made it in good time and were admitted into the Labour ward before you could say "stone me, we're having a baby". Having had a false alarm the previous week, we were both not fully compus mentus that this was really it until the Midwife gave us the reassurance that yes, you have just begun labour. Being a professional novice at this arena, I retreated into the background as the midwives went about the necessary business and tried my best to live up to my primary objective of staying out of the way and not getting on Mrs T's nerves.

A mostly sleepness night passed (well, mostly for me, unfortunately completely sleepless for Mrs T) and the morning found us still sans baby with the indication being the afternoon to meet and greet the little one. For the purposes of weak stomachs and nervous dispositions everywhere, I will fast forward to 12:46pm on 2nd July 2008 when I first saw the face and heard the first cry emit from my son. Actually, I am going to use the powers of retrospective thinking to rewind about 3 minutes prior to that when I first saw the tiniest most perfect little ear emerge which turned me into the blubbering mess I continued to be for the ensuing few minutes. As Noah was handed over to meet Mrs T, to say the sheer enormity of the moment overwhelmed me would be to understate the quite frankly, superhuman efforts displayed by Mrs T up to that point. I remember reflecting that nothing I could potentially go on to achieve in my life would be a fraction as impressive as what I had just witnessed, Mrs T has one-upmanship on me forever it would appear (no gloating if you're reading...). I had spoken to fellow Dads about the moment their respective children arrived and the common theme was one of "there is nothing quite like that moment in the world", this is a hard assertion to quantify but I can now appreciate where they are coming from. I am still at a loss to fully describe the feelings I had as I looked at the first few seconds of life for little Noah but, being the eminent wordsmith I pretend to be, I will have a go so hold your breath and read on...

Imagine a balloon if you will, just a regular party balloon. Now imagine that balloon is released into the sky with a thousand other balloons. Imagine each individual ballon is then filled with so many feelings of joy and ecstasy, the sort of head-exploding, uncontrollable, delirious joy, joy as defined by Marco Tardelli in 1982, joy that consumes your very being, joy that touches the core of your essence and envelopes you in its gloriousness. Imagine each balloon is literally straining to contain these feelings, now imagine every one of the balloons crammed into your head and burst at the same time. Your mind is overpowered by the joy, you cannot think straight, you have tunnel-vision focused entirely on your new baby, everyone else in the room appears to be operating in slow-motion and in a distant blur, you are aware of talk but all you can hear are the cries of your baby, the wails emitting from their tiny lungs in synch with the tears rolling down your face. You attempt to speak but you are drunk with the joy and make little coherent sense. You realised you havent breathed in what seems like a lifetime and with one almighty gasp you are brought crashing back into the reality of the room. Your head is still soaring but you can now interpret the joy in your mind and the first hug, the first kiss, the first hold engross your soul so entirely that you know things will never be the same again. .

The above goes some way to describing the emotions I experienced but there is still a large portion I simply cannot transcribe. It is a surreal image in my head that can only be understood by those that have also seen it. It is Ulysses meets Dali, backwards in a foreign tongue, written in code that is incomprehensible to the nescient but unequivocally clear to the learned. What I can say with confidence is that it is an extraordinary feeling and one that will always stay with me and for that, I am eternally grateful. The ensuing days getting to know our new addition were superb, from learning how to hold and feed him without fear to dressing him in under 40 minutes with steady hands, each little task was strengthening the bond with him. I can now hear his cry in my head and this little sound carries me through my working day and leaves me with an aching to rush home and see him again. To see what is new that day, if he has any new hairs on his head, any new scratches on his face (where are those nail clippers again...?), any new noises he has learnt to vocalise, to see him breathing in the world around him with such curiosity in his eyes makes everything worthwhile. Yes, I am tired...No, I don't care. Life revolves on a new pivot now and the pivot is Noah. My little boy.

There are 2 words I have purposefully omitted from this post so far and, just for this post, I am going to keep it that way. To see Noah in all his newborn glory gleefully swamping down his first bottle and announcing himself to the world with the finest burp I have ever heard, all the stresses of the last few month vanished in an instant and we were able to look at this tiny marvellous creation and appreciate him for just that. We have been through enough up until now, and, with hospital visits scheduled for next week, there is plenty more ahead but just for now allow us this blissful unspoilt joy. For now.

Sunday, July 6, 2008

My Son

Noah William Thompson

Born 2nd July 2008 at 12:46pm

Weight of 9lbs 3oz

Wednesday, June 18, 2008

Instant Farmer

I have been watching it grow for weeks now. Watching the bare soil transform into a wonderful waving field of wheat. Armed with my rather alarming lack of agricultural nous, I initially thought that is was grass that was poking up through the soil and as I am currently engaged in battle with my own lawn, I kept a keener eye on the field than most probably did on the way to and from the train station. It was not until fairly recently that I noticed the grass was sprouting some rather un-grasslike heads and the field was looking more and more like a cereal box (minus the giant bowl and spoon in the foreground obviously). Wheat, of spanner Thompson, of course its a field of wheat. Why would a farmer grow a field of grass when there are no cattle to be seen for miles? In my defence, I am not a farmer, have no real experience of how the countryside works and have never been witness to watching a field of crops (crops?) grow. Why, you might be wondering am I am rambling on about farming and fields of wheat? Well, as I have been watching the wheat grow from seemingly nothing into a magnificent looking field (seriously, I think it looks astonishing as all the plants sway lazily in unison in the breeze like a bunch of teenagers at an Indie gig - I'm odd I know...), I have been drawing comparisons with the growth of my own little baby and watching the bump grow steadily bigger.

The 36 week scan last weekend (incidentally, an honorable mention to The Coombe and Siobhan for weekend scanning - an excellent service) revealed that BabyT is weighing in at a remarkable 7lb 4oz already. Estimates are putting a delivery weight of circa 9lb so we are elated that the wee one is going to be a healthy size at birth. They will need to draw on all their tiny resources until the feeding process beds down (the usual weight-loss will occur perfectly naturally we are assured) so should be more than well-equipped enough to be able to handle it. We spent a great afternoon in the hospital and it is not too often we have been able to say that so for that we are absurdly thankful. We saw tiny feet and toes quickstepping through the womb, we saw tiny fingers playing a tiny imaginary piano, unbelievably we saw a fine mane of hair floating in the fluid like the most beautiful ocean coral, we saw the little ears that hear our words and songs (poor little ears says you...) and we saw the little eyes that will gaze on at us in wonderment and bewilderment as we (read "I") attempt to change the first nappy or succesfully administer the first feed. From my own personal opinion, the feeling of closeness this created between myself and the little one was exceptional. All the recent fears momentarily vanished and, even though the room was far from magical, I felt so touched during the scan I was desperately hoping that neither the midwife or Mrs T looked in my direction until both the lump that had decided to establish itself in my throat, and the water that was encircling my left eye had diminished. I have no idea how I am going to cope at the birth itself, hopefully no-one will be taking much notice of me and my inability to remain non-tearful, and nor should they be in all honesty. Who cares though? It'll all be worth it.

So as we roll towards week 37, my heart momentarily jumps when I see the phone ringing at work from home, the bag is packed and the booze has been suspended. It really could happen at any time now (please Lord, let it happen when I am at home and not tearing through town like a man possessed to get to the hospital) so the batphone is on constant standby. It may sound obvious, but an event such as this provides a level of perspective I have never previously imagined. Daily worries are dwarfed in comparison to the arrival of BabyT, life will stop, change and then continue in a completely new mould in one glorious day. As I see the wheat standing proud and tall clutching ever closer to the low rumbling clouds, I know that it's day of reckoning is almost upon it. One morning it will be there as I pass and when I pass again, it will be gone, destined for a new life, a new form and a new journey. Bring it on...

Friday, May 16, 2008

Heart to Heart

Only old people go to see a Cardiologist, don't they? Old people or people who eat more fried food than perhaps would be advised by one's local general practioner. Or so I had previously thought. Those who visit a cardiologist will almost always be aware of the fact that they are going to get the old ticker checked out and in a number of cases will probably carry with them a mixture of emotions; fear - quite probably, guilt - perhaps (see afore-mentioned fast food warriors), nervous anticipation - almost certainly, but above all perhaps, a mild sense of panic as they comes to terms with the reality that they are indeed mortal, non-indestructible, inevitably destined for the great golden arches in the sky as it were. How one deals with this realisation is uniquely personal and, to my admittedly under-resourced knowledge bank, there is no maunal or user guide to explain this to you. There are no workshops held where a representative in a sharp suit and a nice tie that you could never tie yourself no matter how hard you try, presents a well documented Powerpoint slideshow neatly detailing at what stage you should deal with your emotion [Stage 1 - Acceptance], tick the box and move onto the next set [Stages 2 - 6, Anger through to Contentment via Frustration then coffee break, ] until you reach the finish post [Stage 7 - Confidence] and walk away with a smile and a nicely framed certificate of your achievements. [incidentally if anyone knows of such a course, please email me details]. The very fact that such people get to deal with the storming torrent of emotions that goes with such an experience is the crux of this matter.

My little one (hereafter referred to as BabyT - am not giving away the sex in this Blog...) was quite happy growing away and blissfully unaware of the implication that their little engine was causing in the outside world. I sometimes feel a sense of envy of that state of ignorance, imagine if you will, living in a state where there was no worry, no fear and no panic, a nirvana of perpetual calm almost. It is something we all strive for, count the number of aromatic candles in your current abode for a brief and almost crass example of this, but in all honesty, rarely achieve. I have been attempting to leverage off that envy and turn it into something positive, BabyT is not aware of their heart and the possible problems, therefore they are not worried about it, ergo they are happy still concerning themselves primarily with putting on some more fat. Children with Down's Syndrome are susceptible to heart 'problems'. I use the inverted commas to simply capture the intensly broad range of issues that could potentially occur, there are too many to simply list here so please see here for further details. Due to the dignosis that we had received previously, it was necessary to go through more scans and tests to either confirm the presence of a heart problem or not. This was a particularly damoclean situation to find ourselves in, on the one hand it could absolve the panic and worries we were experiencing and allow us the briefest of respites, whilst on the other hand it could confirm our worst and most tortuous fears. First scan up...

We were forewarned that because BabyT was still very young and the heart was the size of a fingernail (unbelievable, just think about that for a second.....a lifeforce so very very small, incredible), anything that showed up might not be anything after all, it was just a matter of waiting it out. True to form, they left us hanging at the end with the possibility that one of the heart walls was thicker than the other side, "come back in four weeks when we'll be able to get a better view". Oh terrific. Four weeks came and went and we received encouraging news that in fact, BabyT's heart was looking good and pumping vigourously away, all chambers and valves and associated articles were all present and correct and ready for action. This was the point the Cardiologist came in.

The afternoon of the appointment with the Cardiologist is the day I fell further out of amore with Dublin city traffic. I detest it as much as the next frustrated driver but I will never forgive it for making me miss the most important and significant appointment in the little one's life up to that point. For the lovely Mrs T to go through that on her own is something I'll never forgive myself for. The good news was delivered to me as I frantically bowled into the hospital (it had to be the only hospital appointment in history to run on time of course) but not, by all accounts, before BabyT gave us yet another scare. A "raggedy looking valve" turned out to be fine but I swear, sometimes I think the wee one is just messing with our heads, (perhaps something for me to recall upon when pocket money time comes in circa ten years from now....) for their own antenatal amusement.

So all looks good, the chances of having an issue were in and around the 50% mark so we were delighted. There has been a lot of talk recently about the challenges that BabyT will face in their life, well I am taking extreme comfort and confidence from the fact that, when faced with the first real challenge of their short little life so far, they passed with an A+ and left us positively reeling in the wake of this news. It gives me an almost wry smile to think of BabyT in the belly, steadily gaining weight and wondering what all the fuss is about on the outside. Well, this is a personal memo to you BabyT, you just keep doing what you're doing in there and we will have the most amount of fun when you arrive. I am not going to pretend that we are out of the woods yet, there will be a lot more to come and to be honest, I am not sure if we have even entered the woods yet let alone got out of them. To be frank, we haven't even yet been warned to stay away from the woods, perhaps by a scary old-man Withers from the amusement park type character (for further reference see the literary offerings of Doo, Scooby. The Adventures Of...) so this is the start of a very long road. But it is a road that we will travel together, all three of us and I can't wait for that journey.

32 weeks are up on Sunday so a daunting realisation that this is really happening has crept in. It might sound obvious but life begins again in and around a couple of months. Lots more to say, but for now I doff my cap and carry on my way...

Sunday, April 20, 2008

Ups and Down's

It's the phonecall that will always stay with me. I often hear people remark that certain things will always stay or be with them, usually some 'life-defining' moment or another, and being the cynic that I generally am, I usually dismiss them privately as the product of the Dawson's Creek / Friends generation where every happening must be accorded a public degree of emotional outpouring and be shared with other folk desperate to define their feelings in a public forum. This has never sat well with me, primarily because I am the aforementioned cynic and, if truth be told, don't generally often ask for the sympathetic ear of friends and family, its not quite the 'stiff upper lip' syndrome of the archetypal Englishman, but you are in the right ball park as our American friends might happen to say. So here I am now, blogging, social-networking, publicly-sharing my private thoughts, the antithesis to my former cynicism you might say, but why? Well, its because of the phonecall. Ay, there's the rub. The phonecall is the rub. The phonecall that will always be me. The phonecall changed my life. [Dawson exits stage left].

The pre-cursor to the phonecall was November 2007 when we found out we were having a baby. We were thrilled by the news and this joy was offset by an overwhelming sense of terror that I was going to be a Dad and had not the first idea about what to do, what I was supposed to and when I was supposed to be doing it. Pregnancy is a funny old fish really, all of a sudden portions of time are no longer refered to in months and everything is now calculated by weeks. When you are not used to using weeks a measurement of time, as I am sure you are not because let's face it, the only other time that weeks are used to significantly measure time is the old six weeks school holidays which seemed far longer than the month and a half it in reality actually was, life takes on a certain distortion but in a tremendous capacity. To slowly see our baby growing and listening to the most perfect heartbeat I ever heard, is an astonishing feeling and allayed the terror somewhat replacing it with a nervous excitement and anticipation. The thought that anything could ever disrupt this picture was frankly never even considered.

Down's Syndrome is not something I knew an awful lot about, in all honesty I was quite happy with that situation. I am not afraid to admit that if something didn't affect me directly, I didn't generally go out of my way to research it. This may sound selfish and in some ways it is, but I think most of us would subscribe to the same if it came down to it, turn the other cheek as it were. To hear the Doctor say the words to me on the phone is not a situation I ever realised I didn't want to find out about. "The news isn't good, your baby has Down's Syndrome - I am sorry." And that's when my life changed. [Dawson looks pensively across the creek].

With twelve weeks (!) to go now, life is good, changed granted, but oh so good. It has been very interesting to reflect on the feedback we have received to the news, the clinical scientific viewpoint from the Medics, the shocked and almost desperate optimism of some and the overwhelming support of all. We have talked to a counsellor that allowed us to slay some of the demons that were plaguing us, it was comforting to know that the selfish thoughts we were experiencing were ok, it was almost as if we were being given permission to grieve the loss of the life we thought we were going to have and start to build for the life ahead of us. We are now members of Down Syndrome Ireland and a whole new world has opened up in front of us. A friend of mine put it best when he said its just about adjusting to a new paradigm which, apart from being remarkably articulate for him, really shows how little of a deal this really is. I am at peace with it now, there are still sad moments of course, the 'why me' and 'its not fair' and all that but there are far more 'up' moments now. Sitting in the newly decorated baby room really hammers home that the little one will be just like all other babies, will need to be changed (must fix the wobbly leg on the changing table while I think of it...), will need lots of colouful plastic things to stay amused and will need it's Mummy and Daddy to be on hand with a regular supply of food, pillows and cuddles. There is plenty more to come, but that's enough for now I think. Twelve weeks and counting....