28 September 2008

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!

24 September 2008

For all to see!

I would describe myself as something of a perfectionist – when it comes to something that has to be done, it has to be done right. If it needs to be presented to someone else, if it is going to be circulated, it has to be just perfect… perfect presentation, perfect layout, perfect grammar and spelling, perfect logic of thoughts. Anyone should be able to follow what I am putting forwarded, easily, so that my message gets across, with all the relevant information. In other words, when I am working, I pride myself as being the “ultimate professional” – I know, I know, it’s kind of sad. :-(

But having said this, you should see my desk at work; or better still, what I call my “study” at home… a spare bedroom with the pc and a mess of papers, files, stacks of stuff… it can be quite a frightening sight! It balances things out I suppose.

I organised a small conference for work last week: Theme, programme, venue, invitations and confirmation of attendees, guest speakers, refreshments… I was also doing one of the presentations, and worked at it for hours (Powerpoint is my “Pet Hate” - I find the whole thing so illogical). On the morning itself, I arrived very early to set up, connected my laptop to the massive overhead screen – yes, a full screen, integrated into the wall, not just your small flimsy rollout portable screen. I was making the 1st presentation, then the 2 guests speakers were going to follow with theirs.

I hate it when you are in a work situation, in the middle of a discussion with someone, looking on their laptop at support material, and there pops a family picture! It can be cute, but also very distracting… I have always thought this is so “unprofessional”. To avoid all possibilities of this happening, I cancelled my screensaver sequence – I did not want the magnificent (at least I think they are) photos of my 2007 dream holiday popping up in the middle of a presentation, or the during the Q&A session - who wants to see Sri Lankan elephants and Maldives coral reefs while trying to follow a debate? I cross-checked twice to be sure it was off!

I then loaded the guest speakers’ presentations next to my own, opened the three of them in sequence, and left each one on the 1st page – my idea was simple: no need to go back to the desk top, we could easily flick from one presentation to the next, seamlessly. Remember, everything I looked at on my laptop screen was projected onto the massive screen on the wall of the auditorium…

And yes, it was seamless. The morning went very well, my presentation had no hitch. At the end of it, I clicked on the next one for the first guest speaker; after that one I went back over to switch to the third one. Q&A session followed. All well! Our chairman closed the session, every body stood up, and started talking, chatting, networking. I was one of them, totally absorbed in the discussions around me. The “ultimate professional”.

Then I turned around...

And looked up...

And this is what I saw....

For all to see, Cathal looking down at us from the Big Screen!

It seems that while we were all chatting, someone (I still don’t know who) had very kindly gone to my laptop and closed the last presentation, also closing down Powerpoint in the process, and thus revealing my desk top with “my” baby – photo high-jacked from his Mammy’s PC last month (if it looks familiar, that’s because she had it on her own blog for a while).

After my initial and very loud “Oh!” … I tried to gather my wits, and I explained: “The new man in my life…”, while smiling to all around.

Back in the office, some of my colleagues who had witnessed this remarked that they had wondered at the time…

Goes to show two things:
- This child never leaves me! He has invaded every aspect of my life!
- And you can never prepare for every eventuality!

21 September 2008

A Little Bit Weepy

It never ceases to amaze me how little things can trigger emotions and reactions. There you are, going along nicely, not thinking much about much, dealing with everyday life. Then a conversation, or a few words read, or seeing a photo, and Wallop! You are thrown back to a place that is not so warm and cosy.

This has happened to me this week. It all started on Monday with a conversation regarding Cathal’s next heart surgery – a.k.a. The Big One – and the latest news from the cardiologist. Old forgotten fears rose through me during this little chat, and when I say “old” fears, I mean those experienced only 5 or 6 months ago. They were accompanied by an inner nervousness that I had not felt since Cathal came home after his first surgery. This was a sharp reminder of what is to come. I know this is going to be part of our family’s life for the next few years, but logic does not come into play when your feelings decide to wake up and engage each other in an inner rugby match.

Then I got confirmation that I was accepted as a member of the DS Ireland Forum. So went in, said hello, and then started to browse through the posts and comments. The “Brags” section is the one that ambushed me. Don’t misunderstand me here, I am the first one to talk about Cathal’s prowesses. You know the way, when you have friends who just had a new baby, and ALL their conversations are about their new child? Nothing else matters anymore. Then you have your own child and, though you swore NEVER to turn into one of those “baby-junkies”, hey presto, you ARE one! All communications consumed with baby-talk! Well, let me tell you something: in the last 6 months, I have gone through this transformation for the third time in my entire life. Ask any of my friends, or work colleagues, people I meet on a regular basis. I talk about almost nothing else but “Cathal-related-topics”. It’s just Nuts!

So looking at the “Brags” section on the DSI forum was a natural thing for me to do. I brag about Cathal and I have discovered that I love hearing (or reading) others bragging about the child in their life. But I became very sad while reading these, even a little weepy.

My rational (I can even call it Cartesian – after all, this is what was instilled into me at birth) thinking took over in the form of “… What the hell?”

“What” is happening is simply called grieving. For a long time, I thought that grieving was simply for people we had lost along life’s path. At some stage, I discovered that grieving also exists in relation to the loss of relationships. Then I learned that it can also be in relation to the loss what we never had – a life we hoped for, a life we “thought” we had (I painfully learned that this last aspect if very potent).

After Cathal’s birth and diagnostic, I went through this grieving process. The sadness at time was almost unbearable: sadness for him, and what he was going to miss out on. Sadness for his parents, and the fact they were being deprived of a “normal” child, with all the “normal” pleasures of bringing him up. I know this is just over simplistic, but I make no apologies for it. This is the way I felt in those early days.

The night following Cathal’s birth, I was talking to my sister in France, explaining about him having DS, and his heart condition (as we knew it at the time, very sketchy in those first hours). I was crying my eyes out, and all I could say in the end was: “We are going to have to love him even more, to love him so much”. As if this could make up for anything!

I know that grieving is a normal process, even necessary. It helps the transition between what we had (or thought we had) and what we now have. And then it passes, and we get on with things, in the here and now. But every so often it comes back, when you don’t expect it, and tugs at you. As if to say: “Hey! Don’t forget your hopes and dreams. Put things into context.”

This little ambush reoccurs almost every time I see or hear about the exploit of a child with DS. These kids just pull at my heart. I get all weepy.

But most importantly I find myself feeling so much love, not only for Cathal, but for all the children I read or hear about (my contacts have been restricted to children so far… it’s a fast learning curve, give me a chance, I’ll get to the teenagers and adults soon, I am sure). It’s as if something in me has been liberated… strange!

I also find myself feeling a lot of gratitude. For having been pointed in this direction that I had barely heard about only 6 months ago. For having been invited to a place of such beauty and pride.

This is what I have felt in the last week. A little bit weepy.

And how was Your week?

09 September 2008

Happy Six Months!

On the 10th September 2008
A very “Happy Six Months” to my Little Prince Cathal

En ce 10 septembre 2008
Un très Joyeux Six Mois à mon Petit Prince Cathal

Thank you for coming into our lives. Thank you for the love you have brought.
*** Merci d’être venu dans nos vies. Merci pour l’amour que tu y as apporté.

Thank you for allowing me to share so much fun with you.
*** Merci de me laisser partager autant de jeux avec toi.

And also thank you for all the changes and “education” you have triggered…!
*** Et aussi merci pour tous les changements et « l’éducation » que tu as provoqués… !

Prince Cathal in his throne, with his Giraffe-Sceptre
Prince Cathal dans son trône avec son Sceptre - Girafe

And a very “Happy Six Months” to Mammy and the Dad. I salute your courage and energy.
*** Et un très “Joyeux Six Mois” à Mammy et le Dad. Je salut votre courage et énergie.

Sending the three of you a big “Monkey Kiss” – demonstrated below:
(sorry about the fuzzy picture, but like a true Celeb, Cathal will not wait for the paparazzi !)
*** Vous envoyant à tous les trois un gros “Baiser Singe” – démonstration ci-dessous: (la photo est un peu floue, mais comme toute vraie Célébrité, Cathal n’attend pas le paparazzi !)

Celebrations… Celebrations… ♫

07 September 2008

Are We Being Looked After?

I have come to believe that we are. Without a doubt!

A little preamble to this post: be warned that what follows is a little Metaphysical Musing. I blame this kind of deep thinking on my classical, philosophy-laden original education (e.g. secondary school). That French schooling system has a lot to answer for! My last two posts were light-hearted (this was needed after the soul searching, heavily-emotional expressions at the start of this blog). Time now to go back to more serious, existentialist matters…!

I had been thinking over this topic for a while when, in a recent post, Hammie stated that she believed “that there is NO guardian angel watching over you”. Following on this, I HAD no choice but to put on cyber paper where my thoughts had taken me.

I believe that life events do not happen in a random fashion, but that there is a reason for everything. We might not always see it, understand it, but when are occasionally privileged enough to see the Bigger Picture, all is revealed!

I would describe myself as an agnostic. I was brought up as a catholic, but the religious side of spirituality has not “done” anything for me since my teens. Instead, I have slowly come to the belief that someone – call it God, an Angel, Life, the “Force” (as in “May the Force be with you” J ) Mother Nature, Higher Power, it does not matter what label we put on it - has brought certain options along the path of my life to prepare me for Bigger Events. Cathal’s birth and the ensuing discovery of the Syndrome and his heart conditions have been the final proof for me. But, even though I have now acquired this conviction, it has not been easy along the way.

I will wind back the clock a little bit to explain my own journey, keeping it just to the last three years or so. Some years back, I found myself somewhat disillusioned with my career, and needed a change. Both my children had flown the nest, fending for themselves in the big bad world, so I seriously considered all options, even if they meant relocating from near Waterford where I then lived… as long as it was not Dublin. I do not like living in cities, been there, done that, thanks but no thanks any more. I went on several interviews over a period of about 8 to 9 months, always ending up one of the last two candidates, only to be told “you are great, we would love to have you, but….” Every time. Crushing! So I decided to give up for a while and see what would happen. Almost immediately, I was “head-hunted” (lovely feeling) by a multinational: without much fuss, I was given an offer I could not refuse – and not in a Godfather way either. Only problem: I needed to move to Dublin. AAAAH! I simply could not resist. This WAS my opportunity, I had struggled too much, I took it, sold the house, and joined the mad race for housing in the greater Dublin area. A big thanks here to Cathal’s Mammy and The Dad for allowing me to squat with them for close to 8 months! Not easy having the “mother-in-law” breathing down your neck…!

I did not know it at the time, but this irresistible attraction was there simply to make sure I moved to the right location, the one I had always resisted, Dublin. STRIKE 1.

Also during those few months, I had had to travel a lot, including to France (knowledge of the language was essential for the job) and renewed a lot of contacts with uncles, aunts, and cousins. This later proved to be STRIKE 2.

After barely 7 months in the job, the bubble had burst, my department was being out-sourced, and there I was, waiting for the keys of my new nest, and committed to a “lovely” new mortgage, and no job!

Then STRIKE 3 happened: fortunately for me, my skills and experience were in demand, and within a very short time, I had 4 job offers: 3 multinationals, but I was still shell-shocked and very weary of these. And another, with terms not as advantageous as the others, but something in it that made me feel good: Not-for-profit, working very closely with hospital staff…. It was different, it just appealed to me. And I went for it.

My point is this: after Cathal was born, I realised that, had I been still living near Waterford, a 3 hours drive away, I would have found it extremely difficult to cope with the whole situation, especially his hospitalisation. I needed to be close to him, to see him and hold every day. I also needed to be close to my daughter, simply to be with her, to be there. The move to Dublin had been crucial.

And working with people in hospitals, including Crumlin, meant that I was able to talk freely to anyone I met about Cathal. The reaction I received was tremendous, because they work in that “environment” people understood why sometimes my “head” was not exactly in the right place. They also offered so much support, and still do. And I know that when the next surgery comes around, they will also understand and support, because that is what they do, everyday. Also, the “personal touch” of the organisation I work for is such, that my boss and colleagues have been a great source of strength to me. I do not believe I would have received this to the same extend in a “faceless” organisation.

Finally, having renewed contacts with family members meant that I had all their up-to-date email addresses, and could correspond easily, keeping them all informed, sending them photos, and receiving so much back. This support carried me, and hopefully helped Cathal’s parents. This support is still there, and will be through the next hurdle.

So I WAS looked after, the ground was prepared for me over 3 years, to give me the tools to cope with the situation, as well as the support I needed.

And now, let’s talk about my Little Prince, Cathal. He too is being looked after, and so well! I heard once that children chose their parents. This made me think a lot at the time. My objection to this statement was that this would imply some children would chose parents who abuse them or neglect them! This did not rest easy with me. Yet I could not let go of this idea.

Nearly six months after Cathal’s birth, I am thinking that, Yes, Cathal did choose his parents, and Yes, he made a very good choice. And for an innocent little soul like him to make such a choice, he had to be guided, “looked after”. His parents are true heroes in my eyes, they have shown so much dignity and courage. Their energy and determination, not only in wanting the best for him, but in actively pursuing the best, are awe inspiring. Their love is boundless, their acceptance total. Cathal could not have made a better choice.

As a conclusion to this musing, all I can say is that I have absolute faith in the future. I do not know why Cathal has Down Syndrome, and a messed up heart. In a way, this is irrelevant. What is relevant is that, no matter what comes, Cathal will be safe, and so will his parents. They are all looked after.

And now, I throw this question:
- Do you feel that you are “Looked After”?
- Or is it just Luck - good, bad or indifferent?
How do YOU see it?