Learning to dance in the rain

Posted on: 3rd August, 2017

Category: Features

Contributor: West Cork People

The challenges and joys of the past four years, if anything, have taught Susan O’Donovan to live in the moment. She gives us a glimpse into her family life.

I am a proud Mommy to four handsome little boys. Each their own unique individual little character. Our eldest son Rory turned seven this summer. He’s tall and often mistaken to be older. He is a worrier, sensitive and caring, a very proud big brother who through sheer necessity has had to sacrifice more than enough these past four years. Sam is five and a very important half. He’s our fashionista, a little diva. He adores his hair and loves his style. He is funny and witty and can dance better than anyone I know. In September he is due to begin an exciting new adventure. Enrolled to start junior infants in primary school he just cannot wait. Sam also happens to be fighting leukaemia. And last but certainly not least our very own dynamo duo, the ‘twinados’ as they’re affectionately known in this house, Finn and Conor, who celebrated their first birthday last week. Finn, our quiet, placid, cuddly little man, is full of chat with a mop of fair unruly soft baby hair. You could be forgiven for not knowing the child was in the house most days. And finally our Conor, twin two, the dominant one there is no doubt of that, born with a mischievous grin, he’s a little stick of dynamite. Impatient, inquisitive, according to his big brothers he’s a little bit crazy and a little bit wild. I have to agree.

Yes “we have our hands full” we’re certainly very busy these days; throw a childhood cancer diagnosis, the treatment, appointments and inevitable side effects into the mix and some days are a special sort of crazy. But this is us right now, this is life and you know what, for the most part it’s ok, in fact it’s so much more than ok, it’s amazing and magical and there isn’t a day that goes by, I don’t feel like the luckiest woman on earth. Because amidst the chaos and exhaustion, I know only too well just how much we have to be grateful for.

In the last four years, sadness, loss and shock have played a large role in our lives, but so too has happiness, gratitude and love. Life has a funny way of teaching you to appreciate what you always had but took for granted. In our family we no longer stress the small things, nor do we worry about tomorrow, we have learnt to live in the moment, to seize the day and be ever so grateful for what we do have; each other, love, our health, happiness and the support of our amazing family and friends.

Four days after Christmas in December 2013, I lost my Mammy. Unexpectedly and far too suddenly. Fifty-six years young, she had so much life left to live, so much support, love and advice left to give. I am true believer that there are moments which mark your life; moments when you realise nothing will ever be the same and time becomes divided into two parts; BEFORE this and AFTER this. Losing my mother is where my before ends and after begins. When our family talk about events in the past it’s now divided into the before or after we lost Mam. Because everything changed after that day. The wheels were set in motion for more heartache to follow and follow it did exactly five months later.

In May 2014, our youngest son at the time, Sam, was diagnosed with Acute Lymphoblastic Leukaemia. He was two years old. Still reeling from the shock and heartache of losing our gorgeous Nana Mac, it was a cruel blow. In the days that followed our child’s cancer diagnosis we had no choice but to dig deep, physically and indeed even more so emotionally. Our own extended families became our backbone. I was never more grateful to live so close to such a wonderful network of amazing people we are blessed to call family. Between them they manned the life we had to abandon temporarily here in West Cork to stay by Sam’s side, as he began the fight of his life in St Johns Paediatric Oncology ward in Crumlin Children’s Hospital. My little sister Kate, the boys’ ‘other mammy’ became our lifeline to Rory. Rory had just turned four the summer of Sam’s diagnosis and as much as Sam’s illness has affected us all, I sometimes think for Rory it was the hardest. Rory was effectively forced to grow up that summer. I remember feeling like we’d abandoned him. He was only a baby himself. The age-old mammy conundrum of trying to split yourself in two. Be at the hospital for your child fighting cancer but be at home for your four-year-old who felt so anxious and sad not knowing when mammy and indeed sometimes daddy too would return home. Sam had to be given priority; his life literally depended on it. But how do you explain that to a sad and lonely four-year-old little boy? As much as we tried to protect Rory from the worries that occupied our minds, he absorbed a lot of the tension and sadness, particularly in those first few uncertain and scary months. My little sister, who I will forever be indebted to, literally moved into our home that Thursday morning of Sam’s diagnosis. She reassured our brave big brother when he felt sad and lonely, took him out on little adventures to the beach and the forest to distract him. Read him stories and tucked him in at bedtime. Most importantly she was there in the morning when he woke up. A given, a promise something mammy and daddy were unable to give him those first scary days and weeks. I quickly learnt the importance of delegation that fateful summer. Previously reluctant to ever accept offers of help in any form, they suddenly became essential. My husband’s family would batch cook delicious meals and beautiful wholesome breads. They would arrive at our home and quietly slip them into the freezer for ‘tough days’, school runs were organised between them, the everyday hassles and responsibilities of the farm taken care of. In the absence of my mother, my dad, still dealing with the immense grief of losing his best friend, took on a new role. He became and still is my voice of reason. When the world is spinning too quickly to think, to digest the latest challenge that life has thrown our way, I bounce it off dad. He listens, he thinks, and never losing his cool, imparts his tuppence worth. He has become ‘the rock’ that up until December 2013 was our mam. My own brothers stepped up to be the coolest uncles in town, football players, playstation coaches, general masters of distraction to both boys. Without this ‘team’ I can say in all certainty we would not have survived the nightmare that is watching your child fight cancer nor indeed the chaos, albeit happy chaos, twins bring to an already busy home.

For now life goes on, the school book list has been handed in and the order filled, pencil cases chosen, new school bags packed and ready to rock and it’s not yet August. We, it seems, have developed a habit of running with the flow. Who knows what tomorrow holds. We live in the moment and enjoy every crazy exhausting second of it. Conor, our little wild twin, has tentatively started to take his first steps. He’s in too much of a rush to manage more than a few, but golly is it exciting to see. Finn, true to form, is quite content to let him hog the glory for now. It occurred to me tonight how lucky we are that we get to experience these little milestones by the double this time round.

There is a sign that hangs in our kitchen – I ordered it when we were knee deep in the thick of Sam’s treatment and it reads; Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain. I’ve adopted it as my new mantra. Like so many things in this world life is what you make of it. Had you told me four years ago in 2017, I would be a mammy of four beautiful boys, two of whom happen to be twins, and one due to finish treatment for leukaemia later this year, all without the influence of my own personal guru my dear mammy, I may well have keeled over. In two weeks’ time Sam is due back to Crumlin for his second last lumbar puncture of his treatment, he will also receive chemotherapy into the same site on his spine. It will be lumbar puncture and intrathecal chemo number 25 for this mighty legend of ours but it’s also one more off the list. One closer to the finish line. Sam, all going well, is due to finish treatment in November of this year and for the most part will have forgotten a lot of the drama and anxiety he and we have experienced these past three years. The jury’s out as to how quickly Rory will adjust to a new normal. I foresee lots more reassuring cuddles and deep conversations at bedtime. But that’s ok. Talking is good. Naming the demons that haunt your dreams is so very necessary even when you’re seven years young.

We have learnt that life truly is for living. So many are denied the opportunity. On challenging days I stop and find myself visualising my own dear mam, I can literally hear her voice “it’s only temporary Suze, the days are long but the years are short. One day you’ll miss this mayhem, the mess, the noise…the cuddles, the nonsensical chats about everything and anything and you’ll wish you could rewind the clock.” And I smile.

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