01 November 2008

The Iamonly Syndrome… Take no. 2

Most of us know someone afflicted by the Itsonlyme Syndrome. You know: the phone rings, you answer, and you hear this lovely voice saying: “Hi. It’s only me!” I am related to such a person. My standard answer has been: “actually, it’s not only you, it’s you. And hello there!”

It is amazing how human beings can minimize their own worth, and present themselves as lesser than. And this is particularly true in this country, where the once all powerful Church made sure of that! – Note: I am not passing judgement here, just stating what I see as a fact.

To my horror, I have discovered that I too am afflicted, by a variant breed of the disease, the Iamonly Syndrome.

It started to manifest itself when Cathal was in hospital the first time, just after his birth. After the first two days, we all fell into a routine, and I went in very early in the morning to “look after him” while Mammy and the Dad were trying to catch up on much needed sleep and get “sorted”. I used to meet Cathal’s day nurse soon after arriving. She would introduce herself, and I would do the same: “Hi, I am P. I am only Cathal’s grandmother.”

Yikes! It did not feel right, yet it blurted out, uncontrollably.

And day after day, every time I met a new nurse, the symptoms flared up again.

The same thing happened when I met the Cardiac nurse. Cathal’s Mammy had pointed her out to me the day before. On this occasion, seeing that she did not seem too busy, I approached her, and heard myself uttering the dreaded words: “Hello, I wonder if I could have a quick word with you. My name is P. I am only Cathal’s grandmother, but I would like to talk to you about…”

The amazing thing was that every one of these people completely ignored the symptoms, and responded to me as if I was important. They seemed to be actually happy to take the time to talk, and even came back to finish a conversation that may have been interrupted by another patient needing attention. Every one of them seemed to give value to my presence there, to encourage it. I was made feel that, only was I not a nuisance after all, but I was welcome.

The start of my recovery was the morning the news came that Cathal could go home. There I was in his room, holding my Little Prince fast asleep in my arms. In comes Mr Consultant Cardiologist himself, who introduces himself, hand extended to shake mine, does not ask who I am, but blurts out: “Good news, Cathal can go home today!” He then proceeded to explain to me what could face Cathal once he got home, and how to react if he turned blue (… meaning bring his knees to his chin, to force his lungs and heart to react, and then bundle him into the car and drive like hell back to the hospital!) “Don’t even call for an ambulance, no time, just bring him in”. I had to interrupt him and make him realise that this was only the grandmother he was talking to, and that it might be wise to wait for Cathal’s parents to arrive and explain all this to them. “I know who you are” says he with a smile, “and they have already been told what to do. In any case the Cardiac Nurse will talk to them before Cathal goes today. But it is important that you too know what to do. This could happen when you are on your own with him.”

This is when I realised that I could actually find myself involved in such a situation. The fact that Mr Consultant Cardiologist would:
a. trust me with the good “ok to go home” news, and
b. trust me with knowing what to do “just in case”
was a great boost. At that moment, I was not only the grandmother, I was the grandmother.

Since then, my illness has been in remission, most of the time. But the symptoms have slipped out on a few occasions, usually while meeting people “in the know”, when I feel such a novice (especially people from DSI).

At the end of the day, I do have a role to play in Cathal’s life. And that role has its own importance. Anything that can enable him to discover the very best of himself is worth my time with him, and my love for him. And anything that can be a support to his parents, to enable them in turn to support him, and to give them respite when they need it, is worth my time too.

In fact that respite is quite selfish on my part too. I just love time alone with him, I treasure these moments so much. Because Cathal is “booby fed” they are not yet that numerous, but I am waiting in the wings, ready to bounce in…

And what better thing than to have a child fighting sleep in your arms, listing to your voice, little hand resting on your face, sleepy eyes lost in yours. Total trust and abandon.

I am learning that as a grandparent I am entitled to talk to the “professionals”, those “in the know”, in order to better understand what Cathal and his parents are facing, or might have to face. I am entitled to sign up as a member of DSI, and to join the DSI Forum. I am entitled to go to Lámh classes and learn to sign. I am entitled to contact and meet other parents and children with DS, to broaden my experience, my understanding.

I have done all these things, and am being enriched by them. Also I am being reassured; myths, doubts and uncertainties are being dispelled; hope is being reinforced.

I recently attended a very informative meeting organised by the Louth/Meath branch of DSI. About fifty people were present; from my discussions before and after, I think I can safely say that I was probably the only “non-parent” there. I found this disappointing in a way, but I can understand that everyone’s reaction might be different. Mine is simple: I need the contact, I need to be involved in some way.

While finding the balance and respecting Cathal and his parent’s boundaries of course.

I recently started the Lámh course with the Mammy, and was so glad to see that, out of 10 participants, 4 are “non-parents”: one aunt, one uncle, one godmother, and then yours truly. Not bad! This is a great demonstration of “action support” for the people we love.

People with DS need a little extra help because of their little extra chromosome, and this is before all else the responsibility of their parents. But it is also the responsibility of the whole family. Every thing in life begins at home in the family unit, then continues in the extended family, before it can flow onto society at large.

My point is: all of us family members can show “action support”. It is so well worth it.

And we are all worth it!


Jeffrey Goble said...

There can be many meanings of "Grand" - I think you just illuminated one of them.
I'm so glad that you can, and do.

Lisamaree said...

of course, you could be mistaken for the mum because of youthful looks and attitude?
enjoy lamh!