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!


Cathal's Mammy said...

ba dom chhhhhhhh!

South Dublin Dad said...

Love your blog!

Lisamaree said...

aye curumba! I thought it was only us auties who have to deal with Denial.
For your friend; to quote Mr Hammie in his more eloquent moments "FECK EM" Their loss. Being a DS granny is part of who you are now. Take it or leave it brother.

The USA family
*dueling banjos" dang a dang dang dang dang dang dang Dang

Your mother.
There isnt enough therapy in the world to get me over what she did at diagnosis. Now they both (+DAD) try to be supportive, long distance and sound proud. But I will never darken their doorstep with the two kids in tow needing help again. Their loss x 2!

Just focus on the generation that can change and you will change the world. Cathal chose a great Mammy, and Nan. Why not just trust his choices?

Anonymous said...

quand j'ai su le probable diagnostic de Cathal, puis la confirmation, il y a eu un décalage entre le "évidemment on accepte et on vous soutient" théorique et le "on accepte et vous soutient" affectif. C'est difficile à exprimer : il était évident que vous aviez notre soutien mais en même temps je ne comprenais pas trop ce que cela voulait dire concrètement pour les heures à venir, les jours à venir et les années à venir. Et puis, comme toi, je l'ai dit à tout mes proches : famille, belle famille et amis. Et plus je le disais plus je ressentais dans mon affectif et mon cœur ce que cela voulait dire : plus d'amour à vous manifester , plus d'affection à transmettre, plus de nouvelles à prendre... plus de tout pour montre que même long on était encore plus proche qu'avant (et oui pascale, c'est possible de t"'envahir " encore plus!!!:-)). et puis le décale entre le "théorique" et "l'affectif" s'est gommé. Ce sont des discutions avec mon entourage confronté aux mêmes situations il y a peu ou depuis plusieurs années qui m'ont permis de mieux comprendre, de moins redouter (redouter un truc inexplicable, irrationnel, une sorte de peur mais on ne sais de quoi).
Je comprend que parfois tu es envi de réagir aux remarques "déplacer" de certains, mais comme eux j'avais cette maladresse avant d'être confronter à cette situation. Ils pêchent par méconnaissance et idées pré-conçues, sans penser à mal. MAis oui c'est énervant. Ais c'est peut être à nous d'être plus compréhensif qu'eux et de leur donner une autre vision des choses, éloignées des apriori.
sur cette longue prose, tout mon amour