16 August 2008

Beyond the “Slanty Eyes”

The ability to see a person for WHO he or she IS, and not for WHAT he or she HAS, comes in various ways to each one of us. It may be instantaneous, it might take a long time. The important thing is that it comes.

I have been asked by a few people “in the know” (e.g. people who are closely associated in one way or the other with DS): “And how do you feel about your grandson having Downs Syndrome? ... How are you about it? … Because it can be an issue with some grand-parents, you know, older generation, different view on things…”

So let’s thrash this out.

The first thing I saw of Cathal was what I called his “Slanty Eyes” – a totally inappropriate description, I agree, but I make no apology for it, this was, at the time, the only way I could describe what I was seeing. Before I even came face-to-face (or should I say face-to-incubator?) with him, the first photos taken of him confirmed to me that yes, no doubt about it, this baby has Down Syndrome. End of! Next! Oh yes, his heart, far more important here, life threatening and all that, let’s cope with this first.

It might have been denial of the simple reality before me, it might have been the sheer shock I had (we all had) received.

When I went home later that night, I made all the calls to France to drop the bombshell that all was not well, that actually it was quite serious, and all that... I must confess that I did not know the French word for DS, it had never come up for me (and this is the language I grew up with???). The only way I could explain it was by using a word that I felt was totally inappropriate, yet I had nothing else, the “M” word! (turns out that DS in French is “Trisomie Vingt-et-un (21)”. Simple when you know!)

I then felt that I needed to “check things out” there and then. So in the early hours of the morning, I went on the net and researched Down Syndrome… Hmmm, a lot of info, too much info for me to process, and yet not enough. Along the path of life, I had acquired the over simplistic knowledge that DS = mental disability. That was about the sum of my education in this subject matter. And that night I found all kinds of stuff like deafness, poor eye sight, slow development, heart defects (HEART DEFECTS? Tick), weak muscle tone, thyroid issue (Oh! shite,this is serious! It goes beyond mental disability) and a description of notable physical features – and here come the “Slanty Eyes” again.

After the initial shock and a couple of days spent in Crumlin, trying to decipher this “heart defects” business, and relay the information to France as accurately as I could understand it, we all fell into a pattern. I was concerned about my daughter’s own health (after all, she had just given birth) and the Dad’s energy levels (after all, he had just been promoted to Dad-hood with a Bang), I offered to go to Crumlin early morning every day, to give the new parents a chance to catch up on sleep, and stay there until they were ready to come in late morning / noon. Then I could go to work and do my day’s contribution to “Ireland Inc.” – Here, a big Thank You is due to Mister Boss, who was superb and accommodated me so much! – And a big Thank You to the Mammy and the Dad for trusting me, and allowing me time alone with Cathal, those mornings were so precious.

So there I arrive one morning, around 7.30 am (to beat the bloody Dublin morning traffic!). Cathal at this stage is about 4 or 5 days old. He is sleeping nicely in his cot. I check the chart to see what happened during the night, I look at him, pick him up when he wakes up, feed him Mammy’s milk in a bottle, change him, hold him, hug him, sing to him . . . the usual bounding process. And suddenly I realise it: I had not seen the Slanty Eyes since I had come in. . . For the last few hours, I had seen Cathal, my beautiful Little Prince Cathal. Not DS and ITS features, but the child, with HIS individual features. This marks my total acceptance of who Cathal is, with among other things: DS, messed-up heart, gentle smiles, loud screams, soft skin, lovely smell of his head, kissable neck, bleu eyes, spiky hair, enquiring looks, peaceful sleepy breathing.

Just after Cathal’s birth, I rung a friend of mine to give her ALL the news. Coming to the end of the conversation, she said: “ just one little thing for you to bear in mind: don’t say that Cathal is a Down Syndrome baby, but rather that he has Down Syndrome”. I did not quite understand what she meant until that morning (thank you “Katecourt” for pointing me in this direction)

I have (kinda) gone back only once: when he started smiling, I pulled out one of the books I got on DS, and checked how much “off target” he was compared to “normal” children. I know that on the day I needed to reassure myself that it was not “too bad”! Now this has become totally irrelevant, and I naturally rejoice at every one of his exploits, just because my Little Prince cannot do anything but Great Things. He wins Gold for every one of his discoveries.

Life is so much simpler this way!

Eyes? What eyes? I am just a two week old Cutie-pie!

The eyes of a future Super Star - aged almost five months


Cathal's Mammy said...

"By the way, I have got the longest eyelashes in he entire world, while we are on the subject here" Cathal

Nan P. said...

Yes, Cathal, I agree.

You are just the most beautiful being ever.. well, with your mammy and uncle, of course!And I am not biased here!

Jeffrey Goble said...

Emma's eyes were the signal to me - I was videotaping her in the NICU and made my own diagnosis, before I was told. I certainly understand the post!
We were told, by a specialist in the field, about 12 hours after Emma was born, that "she is more like you than she's not." At the time, I thought it a rather backward way to put it, but the statement has proven true. Emma and Cathal are who they are - it's only our vision that changes. Great post.

Anonymous said...

He is beautiful, just beautiful.
You have a nice way with words and I can totally feel your love for him. I am sure he will bring you joy and happiness and teach you things about yourselves you never knew or suspected.