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 always 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”. To my horror, I discovered at one stage that I too was 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 every day I would spend a few hours on my own with him. When his nurse would come into his room, she would introduce herself and I would do the same: “Hi, I am Pascale. I am only Cathal’s grandmother.”

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 approached Cathal’s Cardiac Liaison Nurse. I heard myself uttering the dreaded words: “Hello, I wonder if I could have a quick word with you. My name is Pascale. 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 to me. 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 (the very first time). 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”. 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 Liaison Nurse will talk to them before Cathal goes home 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.

All grandparents do have a role to play in their grandchildren’s lives. And even more so if the grandchild has Down Syndrome: Understanding what Down Syndrome is all about, understanding Cathal himself, for who he is, means that I can help in supporting him to discover the very best of himself. I can support his parents by re-enforcing all they are doing for him and with him. I can give them respite when they need it, and be trusted to care for him without any concern on their part. In fact, I am Cathal’s Number One babysitter of choice, and I just love it.

When Cathal was about 6 months old, his mother and I did the Lámh course. The Iamonly Syndrome did manifest itself somewhat as I was about to walk in the first night – nerves set in for a few seconds: Surely I would be out of place with all the parents! And I was indeed the only grandparent there. But to my surprise, out of 10 people doing the course, six only were parents: the others were an aunt, an uncle, a godmother, and myself. This was a great demonstration of “action support” for the people we love.

Having done the course and using Lámh every time I am with Cathal means I can communicate with him, I can understand his needs when I am on my own with him. Of course, since I do not see him every day, every time we get together I need to catch up on his latest discoveries (verbal or signing) and especially his own interpretation of the sounds or the signs. But we do have great conversations, and most importantly fantastic fun together.

My illness has been in remission for most of the time. But the symptoms have slipped out on a few occasions, and usually while meeting people “in the know” about Down Syndrome. For example, being asked to post articles on this website was one of those occasions. But in the end I have learned that, as a grandparent, I am entitled to talk to the “professionals”, in order to better understand what Cathal and his parents are facing. I am entitled to go to Lámh classes and learn to sign. I am entitled to contact and meet other parents and children with Down Syndrome, to broaden my experience and my understanding. And I am as entitled to talk about my journey into grand-parenthood as any one else, especially if it can help anyone else with a grandchild with Down Syndrome.

I can understand that everyone’s reaction might be different to mine. Some grandparents may not feel they can be as involved, especially at the beginning, when the shock of the diagnostic is still being felt, when the emotions are playing havoc.  My reaction from the start has been simple: I need to understand, I need the contact, I need to be involved in some way. And doing this has enriched me, of course, but it has also reassured me: myths, doubts and uncertainties have been dispelled; hope has been reinforced.

All this of course, while finding the balance, and respecting Cathal and his parent’s boundaries.

People with Down Syndrome 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, and 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!

© Pascale (aka Nana), DSC 2010.

Got a question for Pascale Claes (aka Nana)? If so, drop her an email here.