So Little and So Huge

Up to three years ago, I was living in a very cosy little life. Of course I knew that my environment was going to change because grand-motherhood was approaching, but how different could that be from the “same-old same-old” habitat I had known for so long. I had lived through many experiences, acquired a wide ranging knowledge, seen and heard a lot, taking on board some ideas and putting others aside. In my mind, I thought I was “wise” and all I now needed to do was enjoy this wisdom.


And then, on the 10th March 2008, Cathal joined our family. On that day, our lives took a little boat trip, but we did not reach the shores we had anticipated. Instead, we stumbled onto a new world, stepping on shaky ground, in total shock, in tears, in pain, in anguish. To say that Cathal’s diagnosis of Down Syndrome and of Congenital Heart Defects took us totally by surprise would be an understatement.


Personally I knew next to nothing about Down Syndrome. My initial reaction was more of concern regarding the immediacy of Cathal’s heart condition. And the following 16 months had many traumatic moments that I will never forget. But the under-lying presence of Down Syndrome gave me the springboard for a shift in my life priorities.


Yes, Cathal has Down Syndrome. So? He may take more time than other children his age to understand some things. His little body may not be ready at the same time as other children’s to acquire some skills. But he will understand them, he will acquire them, in his own time, at his own pace.

Cathal is teaching me patience, because I cannot rush him.


Yes, Cathal has Down Syndrome. So? He has it in him to do whatever he is capable of doing. I is simply a question of giving him extra opportunities to discover his abilities than with other children: creating an environment, promoting a potential to allow him to grow as far as he can.

Cathal is teaching me faith, faith in him as an individual, faith in his own, personal, abilities.


Yes, Cathal has Down Syndrome. So? He may need to work a little harder than most to achieve, but when he does achieve, no matter how small this achievement may be, the joy we feel is all the greater.

Cathal is teaching me appreciation, of simple joy in the smallest things.


Yes, Cathal has Down Syndrome. So? He has his own strong personality, full of goodness, full of love, full of tenderness and gentleness, full of strong opinions, full of courage, perseverance and determination.

Cathal has taught me that he IS not Down Syndrome, he IS himself, and just happens to have Down Syndrome, just as I have green-brown eyes. He is him, as much as I am me.


Before Cathal joined our family, I thought that I did respect all people. I have since realised this was very much a generalisation, on the surface. The way his parents faced the events following his birth, the courage and determination they showed so quickly to do everything in their power to fight for him, courage and determination that is now manifest daily in all the small but necessary gestures they do for him, make me feel very proud of my daughter and the Dad.

And because of Cathal, I have in the last three years come to know so many people from the wonderful world of Special Needs and Disability, some of whom I now call my friends. Every one of them is Special in his or her own way, but most of all they are special to me because I can in confidence accept them and respect them simply for who they are.

Cathal has taught me the true sense of Respect for others.


3 - 21: On this World Down Syndrome Day, I am celebrating the huge and fundamental changes an extra little chromosome made to my life. I am celebrating my love for a most wonderful human being. Cathal, I would not change you in anyway, you are the most perfect grandson I could have ever wished for. Thank you for being you.

5 Words Make Such a Difference

Our lives descended into emotional turmoil following Cathal’s birth. This new member of our family burst onto the scene with five little words:

Down

Syndrome

Congenital

Heart

Defects

And nothing was the same again.

Huge sadness. Gripping fear. Unbearable pain. Sense of Loss. Un-comprehension. Overwhelming powerlessness. Most of all, for the days and weeks that followed his arrival, the constant worry, relentlessly occupying the mind, physically gripping the body during the day, invading dreams during troubled sleep.

I first saw Cathal in the Intensive Care Unit of the maternity hospital. He was only a few hours old, waiting for his transfer to the Neonate Cardiac Unit of Our Lady’s Children’s Hospital. I was standing by the incubator with the Mammy, and we both agreed he looked perfect. Simply perfect. Yet by then we knew our lives had taken a turn onto a road so less than perfect! And the following 18 months indeed turned out to be so tough!

A few hours after meeting my first grandchild, once back home and talking to my sister on the phone very late that night, I remember saying to her: “He is going to need a lot of love, so much love.... All I can do is love him so much... I can’t do anything else....”


Down
Syndrome
Congenital
Heart
Defects

These words were absent from our vocabulary last Friday morning when Oisín joined our family. When I asked the Mammy “What is he like?” she said “He is perfect!” With a laugh I reminded her that Cathal was perfect too when he was born. “Of course he was. But Oisín IS PERFECT!” Joke aside, I knew what she meant.

Strangely, I did not have any sense of relief at the confirmation that Oisín was as we had been told to expect. Somehow, I was not worried, and even though all the signs pointed to a “no diagnostic needed here”, the shock of Cathal’s own diagnostic had prepared me for accepting anything that may come our way. All I felt was joy. Joy of the anticipation of loving and spoiling another little being, joy for the joy my own daughter was experiencing.

Oisín and his Mammy went home the next day. I had been looking after Cathal and we waited another 24 hours to allow parents and new baby some time on their own before introducing Big Brother to Little Brother. This introduction went very well, and all signs are that Cathal is very accepting, and mindful, of Oisín. I am so proud of him!

But two things struck me on that day: The first was the atmosphere of serenity and joyous contentment in the house. Relaxed faces. Happy voices. Ease of interaction, where no one was afraid of saying the wrong thing, or letting their own angst spill out. Also the ease of looking after a newborn who is in good health, who can feed so easily, who does not have weak muscle tone hampering his sucking, who is not exhausted after a few seconds because his little heart cannot keep up the pace. It all felt ordinary, even (dare I say it?) “normal”.

And then, I noticed how grown up Cathal suddenly seemed. Even though he was the same child as the little boy who had been playing in my house earlier that day, or cuddling up to me in bed that morning, he was no longer the baby. Rather he simply looked older, responsible. He radiated with knowledge, ideas and imagination.

Oisín has no idea yet of how lucky he is to have a big bother like Cathal. Deep inside me is the certainty that I will truly enjoy watching the two of them growing up together.

Do not tell the Mammy and the Dad this, but I secretly hope that the two of them will quickly gang up together and drive their parents demented... You know: “grandchildren are parents’ revenge over their own children”.... ;-)

Oh! The fun they will have!