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!

Normal, Average, and Foxy Business

Or Coming out - Epilogue


February 2010 has started much milder than the end of 2009 and January 2010. I woke up yesterday morning to the sight of a pheasant going about his pheasanty business on the green that my bedroom window overlooks. Spring may be coming.

I often see pheasants there on weekend mornings, and more often than not I actually see several of them together, the most was last spring when seven of them (hens and cocks) were inspecting the green for over an hour. This is one reason I opted to live on the edge of a village rather than in the Big City: I looking at the spread of miles and miles of countryside from my sitting room, I like the sight of greenery, of fields, of trees as I commute morning and evening – during at least 8 months of the year, as in the dead of winter leaving and returning in the dark is unfortunately my lot.

But January did not want to let go of its reputation for coldest month ever. The last weekend of it offered nights with a sharpness that reminded us Winter was not gone or dead and buried yet! Thus Sunday morning found my village encased in a thick crust of frost that did not melt until well after noon.

Though I do not like mornings, I love weekend mornings, when I can laze in bed with a book and a large pot of coffee, leisurely feasting on both. So there I was mid-morning last Sunday when, as I refilled my jumbo cup, I looked out the window to check on the frost, and I saw this:

He took his time, patrolling the green in a seemingly systematic way, probably picking up scents, trails, and proof of various prey’s activities.


Being in the country, this should not have surprised me. Yet it did: though as I said I have often seen pheasants in this same spot, this is the first time I have witnessed a fox there. Because, contrary to what we may think, foxes do not particularly like the country. They much prefer cities. In fact the highest concentration of fox population in Ireland is in Dublin. In particular they are found in the greatest numbers in very specific areas of the city, where there is plenty of food to scavenge and lots of large gardens with hedges and bushes to hide in.

So what we think as “normal” (e.g. foxes live in the countryside, there is no wildlife in the cities) is very much a false premise. How many such thoughts of Normality are erroneous? Do we confuse “Normal” with “Expected”, or do we confuse “Normal” with “Average”?

Some months ago I found myself spending some time with a group of people with various types of disabilities, and we came to discuss the perception of Disability, and then moved on to what is a “normal” person. One man there reported on a simple study that for him had put a lot of things into perspective. I do not have all the precise details of this study, nor who carried it out, etc... So what follows does not purport to be highly scientific. However what I remember is this: the study took 100 “normal” people, e.g. representing a cross-section of society and not claiming to have any disability. They were asked 7 simple questions concerning daily tasks, such as for example “Can you read or drive without the assistance of aids such as glasses or contact lenses?” – meaning: do you have “normal” vision? Anyone who answered NO to any one of the seven questions was directed to one corner of the room, the others who answered YES to all seven questions were sent to another corner. Once all 100 people were thus questioned, the YES corner had an impressive total of... two.

Just two people were “normal”, the other 98 needed the aid or assistance of an implement or a devise of some sort to carrying out at least one daily task we all take for granted. This truly puts the notion of “normality” into perspective. And it brought me to wonder if what we call “normal” shouldn’t be redefined as “average”. Take vision: if we expect most people to have “normal” vision: e.g. to see near and far without the need for any assistance; If on average 50% of people can read without glasses, and if on average 50% of people can drive without them, how many require glasses in neither case? Logically, it could well be 25%. This minority becomes the norm. Our society is constructed on our perception of The Norm, on averages that we conveniently forget to combine.

The over-use of “the average person” has brought us such spread of aberrations as:
- exam marking-schemes (retaining zillions of one-liner facts and figures and regurgitating them at lighting writing-speed can favour only one type of student),
- fashion ideals (in reality, how many people look with those models?),
- slip-screen TV programmes - ask someone who is dyslexic to follow a news report while simultaneously reading the name of the interviewee with all his credentials in one corner of the screen and important facts bearing value to the interview at the bottom of it, both going at different speeds, and his or her reaction you may help you to understand what I am talking about.

I never considered myself “abnormal”. However I no longer consider myself “normal”. I see me as me. I still would not advertise in a working environment my reading / writing / sequencing / retaining-information peculiarities, but I have been much more at ease with them in the last year or so. And when it comes down to it, Dyslexia is only one aspect, along with other facets of myself, of what makes me... me ;-)

As Elbog mentioned in his comment to my last post, Cathal’s diagnostic has certainly shifted my perceptive on what I may view as The Norm, to an extent that I often stop myself, as I am about to utter what I would have previously thought of as the truth, and soften my thought by rephrasing it. In fact, the word “normal” is on the endangered-words list of my vocabulary. When trying to “educate” people around me I never say “normal children do this, or have that, where as children with DS...” Instead I say “Children with DS tend to... and children who do not have DS tend to...”


Shift.

Like foxes thriving in cities.

Coming Out? Chapter Two

I recently learnt that John Chambers, CEO of Cisco, e.g. one of the world top business people, belongs to my club as me, and has apparently been very open about it. This got me thinking. A little research later, and I realised that a large number of business people are also members, such as, but to name a few, Richard Branson (of the Virgin Airline and Virgin TV fame), the Naked Chef himself Jamie Oliver, and Ingvar Kamprad (who?... actually, he is the founder of Ikea). In short, people we would consider to be successful.

But this club is not only for business people. “Great” thinkers, writers and painters can also be found: Hans Christian Anderson, Leonardo Da Vinci, Pablo Picasso. Quite a lot of artists and media people of all types as well – ok, I’ll drop names again, all in a tumble: Anthony Hopkins, John Irving, John de Lancie, Cher, Whoopi Goldberg, Noel Gallagher, Jay Leno, Ozzy Osbourne, Keanu Reeves, Guy Ritchie. And sports people as well, for example Jackie Stewart (had to slip in someone connected with Formula One here, could not resist). And I remember hearing a couple of years ago an interview with one of our Boyz, namely Shane Lynch, where he said he is one of us too.

I am not saying that I feel proud to be associated with every one of these people, some I would certainly not describe myself as a fan of. However this list is interesting as it shows that our club encompasses all walks of life, all levels of intellect, both genders, and overall between 5 to 7% of the population. Our club is Dyslexia.



The Dyslexia Association of Ireland defines dyslexia as follows:

Dyslexia is manifested in a continuum of specific learning difficulties related to the acquisition of basic skills in reading, spelling and/or writing, such difficulties being unexplained in relation to an individual's other abilities and educational experiences. Dyslexia can be described at the neurological, cognitive and behavioural levels. It is typically characterised by inefficient information processing, including difficulties in phonological processing, working memory, rapid naming and automaticity of basic skills. Difficulties in organisation, sequencing and motor skills may also be present.


Another definition I found states:

Specific developmental dyslexia is a disorder manifested by difficulty learning to read despite conventional instruction, adequate intelligence, and adequate sociocultural opportunity... Dyslexia is diagnosed in people of all levels of intelligence.



So how did it manifest itself for me?

As a child learning to read and write, the first problem I remember (I may have encountered others before this, but I simply do not remember) was not understanding why my teacher kept giving out to me while pointing out mistakes in my spelling: I simply could not see them. Even though I knew the difference between b and d, between m and n, between p and q, when I read them as part of a printed word, each pair got all mixed up when it came to writing them down, and then reading back what I had written. I simply could not see the difference. Similarly, I could correctly write a c or an s, a g or a j, but could not “speak” the difference within each pair when spelling out aloud – this is still with me now, I always have to stop and think; the fact that the sounds of the letters g and j are inverted between English and French makes it even harder for me. The other thing that caused me major difficulties was reading aloud. Even though I remember learning to read fairly quickly, it was fine as long as it was “in my head”. This to a point that by the age of 8 I used to go down to the public library several times a week, and take out the maximum number of books allowed, all the while reading my own books at home over and over again. But once asked to do read aloud, stumbling or coming up with different words than those on paper were the norm. I remember my frustration as I knew I could read but could not prove it, and the sense of ridicule as I was forced to struggle in front of the class in school.

Apart from my appallingly bad hand writing (described as “spider-feet” while in primary school, and it is still pretty awful), my spelling remained incredibly messy, and uneven; by this I mean that I would rarely repeat the same mistake twice, it just seemed to strike at random. While I was growing up, the French education system had a great scoring system for spelling: the children were given a dictation, marked over 20 points, and either one point or half a point was deducted for every mistake, depending on its “severity” (I kid you not!). I remember my mother being told by a teacher, in front of me – I was by then in secondary school so probably about 11 or 12 – that I had achieved her overall record of minus 25 over 20! How about that for confidence-building? Would not consistently reaching zero have been enough to show there was a problem?

Retaining information, learning texts by heart, or dates, or names, or simply learning my “tables” (multiplication, etc...) were particularly difficult – there goes the sequencing bit. The written and the oral did not connect. A link was missing somewhere. When I was 12 or 13 years old, I was finally diagnosed and directed toward a lovely woman who taught me to read, to write, to spell, to manage numbers, from scratch. She gave me little tricks, so simple yet so valuable that I have totally integrated them. She did her job so well that I could not actually explain now what most of these tricks are or how they work, because they have become part of my way of thinking and of handling written language. What I know is that reading aloud has been, and still is, a major problem, especially if I have not seen the text before – and by this I mean not seen EVER, or not seen in the last 10 minutes, depending on the day. This can be a great source of anxiety, striking at the most unexpected time. Yet I know that, if I slow down, if I breathe in and out as I read, if I focus on each word instead of the whole sentence, I’ll do it, and no one will ever know. And if I trip, well, I trip and that is that!

The other thing is that the advent of computers, word processors, spell-check, etc… has greatly helped my writing. I am not sure how or why, but I know that I find it much easier to type than to write long-hand, and that it easier for me to spot where things go wrong when it’s on a screen or a printout than my long hand. To a point where I came to wonder if I was “still” dyslexic. Until I took a very simple (even simplistic) little test I found on the Dyslexia Association of Ireland website, a test directed at adults. Here it is, with my answers:


“The following is a list of questions for any adult who thinks she/he may be dyslexic.

• Do you dislike reading aloud? YES, YES, YES.
• Is reading new material difficult? YES.
• Does it take you a long time to read a book? YES, though I do read a lot.
• Do you sometimes pronounce words incorrectly? YES, YES, YES. In both languages!
• Do you have problems with spelling? YES, though it’s not as bad for me in English as it is in French. But when one word is similar in both languages but not quite, I struggle, big time, and can end up with a new word combining both spellings.
• Did you have difficulty at school and did you do less well in written exams than you feel you should have? OH YES, oral exams were always so much easier... as long as I did not have to read aloud, of course!
• Do you find it hard to write letters, reports, or even to take phone messages clearly? LETTERS AND REPORTS NO, BUT PHONE MESSAGES: YES! If given a name or phone number, I always need to get the person to slow down, I repeat the letters or digits as they are given to me, to buy me time to process (one of my little tricks, apparently). But if someone leaves a message on my voice mail with a number, I have found myself listening 6, 7 or even 8 times to ensure I have it, and have it right, because I can take down only a couple of digits at a time… bloody nuisance!
• Do you have problems with sentence construction and punctuation? NO! Hmmm! ;-)
• Do you get phone numbers wrong? YES, YES, YES.
• Do you confuse 'left' and 'right'? YES, AND TUESDAY WITH THURSDAY, AND WEDNESDAY WITH FRIDAY, ETC… (Different days in French!)
• Is your handwriting hard to read? That is an understatement. If I do not focus on my writing, not only others can’t read me, but I can barely read myself at times!
• Do you find it hard to see the mistakes you have made in written work? OH YES, especially if hand-written!
• Do you have 'good' days and 'bad' days? DEFINITELY! Some days are a real struggle. And tiredness makes it worse because of lack of focus.
• Do you find it hard to remember things in sequence? YES!
• Do you find it hard to remember new facts, names, etc? YES, YES, YES.
• Do you get confused with times and dates? BIG TIME! ;-)
• Did you find it hard to learn by 'ordinary' teaching methods? NOT SURE WHAT IS MEANT HERE. What I know is that I must write down EVERY THING, every scrap of information that I know I need to retain. Then I know where I have filed the document it’s rewritten on (hard or soft copy), and can retrieve it easily when needed, again and again until it sinks in – another little trick!
• Do you forget quickly rather than learn slowly? ABSOLUTELY! This is probably why I could never cram for any exam I took, and God knows I sat quite a few over the years! Learning has always been a long haul process, with a lot of repetition, a lot of going over things, until things do sink in and stay there. And I am taking about facts to be learnt and retained here, rather than logical processes or cause-and-consequence type of information (these have never been a problem). Last minute of scanning through something has always been useless, as the information is gone almost as soon as it came in. To this day, I prepare for important things like meetings, presentations, etc... as far in advance as I can, to go back over as much as possible.
• Does someone else in your family have similar learning problems? APPARENTLY YES.

Many people will say yes to some of these questions. Some people will say yes to many of them. Counting up, my answers are “YES” to 18 out of 19 questions. I am not saying this is an absolute diagnostic, but… I would call it confirmation of an earlier one. Any doubt I may have harboured has been dispelled, I “still” am!



I have generally not publicised my dyslexia. Since my bag of tricks has enabled me to function pretty well for years, there is no need to highlight it. I get by very well without revealing it, especially in a work situation. It is probably also due to the fact that I feel I would appear “different”, that people may not understand that I can do every thing I am supposed to do, that it does not “handicap” me. Down to the point, I feel that the perception others have of me would change if they knew. In short, I am probably prejudiced against myself.

Learning of the numerous members of my club as I listed above, some of whom I do truly admire (but I won’t name them, that would be telling too much for today!), showed me it is one diagnostic, like another, it does not reflect on me as a person, or on what I can or cannot do. So reading and spelling may be a difficulty for me? This does not stop me from having a love of words, a love of the written form of language. So remembering names and numbers, facts and figures may cause me a little hassle? This does not stop me from being pretty good at what I do, no matter what it is, if I may say so myself (blowing my own trumpet, etc...). So reading aloud is not my forte? Ah, but a lot of other things are...! The big question is: How do people see Dyslexia? How would an employer consider a prospective employee if it is written on the CV as one of the “talents” or “achievements”? Because I consider my adapting to a world so dominated by the written word, and adapting so well, as one of my biggest achievements. Do we talk enough about it, dispel the myths? I am very conscious that my own silence has been contributing to maintaining them all these years.

Having said this, I find reassuring the fact that it is a spectrum, it confirms they are variations between people, and even within me from day to day. Strangely enough, doing the little test above, researching Dyslexia in the last while, has actually got me thinking that someone working with me may also be on this spectrum, as some signs are unquestionably and repeatedly showing. So I have been wondering if I should start stepping out a little, at least with this person. You know, recognition and all that. Something to ponder upon...

Because every one of us is different. We each have our own way of processing information, of processing our thoughts, and of using the talents we have and the skills we have acquired. As long as we can communicate, in an effective manner (e.g. the message I send is received as intended, and vis-versa), then the way we do it is in essence not relevant.



Just one thing in conclusion: if I leave a comment on a blog every now and then, as I know I have done, where the words don’t seem to make much sense, where “typos” go a little over the top, please do not think that I was typing while under the influence of some alcoholic beverage or some funny pills. No! No such luck!

Just be patient with me. It simply means that I am having a bad day, or a bad hour, and that I did not use my “safety net”: I rushed in and typed the comment straight into the comment box, instead of taking time to draft it on a Word document first, checking it out thoroughly, and then copying and pasting... Goodness! All my secrets are out now!

It’s Contagious!

A few days ago, I came across the quote below on the net. When I first starting to read, I though it was one of those sick “jokes” about DS, or another piece of tripe written by people who have negative opinions on everything they fear and yet know nothing about.

But I kept reading… I leave it to you all to judge for yourselves...

“
Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual.

Recently, science has discovered that this cellular abnormality is highly contagious.

As a result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level.

These changes manifest themselves in a number of ways. Something extra in the visual cortex results in parents who view the world differently.

In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important.

Spontaneous appearance of tears of joy have also been confirmed. The section of the brain used in logical thought undergoes dramatic changes.

Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD,VSD and PDA. Familiarity with G-tubes, Pic lines and the NICU is another side effect.

Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classrooms of medical students and educate the population at large about issues they are passionate about. These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators.

The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon.

One mother reported that her heart skipped a beat when her son smiled at her for the first time.

The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load.

Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain.

Apparently, the presence of a little "something extra" enhances the lives of individuals fortunate enough to be infected.

”

Originally written by Wendy Holden (the British journalist…? I am not sure!)

;-)

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

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

But sometimes, I just can’t stay quiet!

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

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

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

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

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

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

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

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

Face the facts, there is no point in hiding.

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

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


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