The fact that I am even writing this is, in itself, surreal. But that this beautiful, blonde haired, four year old boy is no longer filling up our house with giggles and requests for apples is, frankly, incomprehensible.
After a few weeks of being a bit ‘out of sorts’, we decided to take Nicholas in to the emergency department at Lady Cilento Children’s Hospital late one Monday night. We were a bit concerned with his noisy breathing and thought it best to get it checked out, but we weren’t especially worried. Within six hours, he was admitted into the Paediatric Intensive Care Unit (PICU) and hooked up to all manner of lines and machines. The next 48 hours were ‘tenuous’ as his body went into septic shock from a group A strep infection and he had a cardiac arrest while being intubated. But he fought hard and, over the next few days, we saw the amazing medical team slowly start to look a little more relaxed about the numbers they were seeing on the monitors. However, as the weeks progressed, Nicholas battled with more and more complications, such as a severe skin reaction to an antibiotic. He held his own, but we were told that he was on ‘thin ice’ and it wouldn’t take much for things to go downhill quickly. Once his body began showing signs that parts of his bowel was dying, we knew that he was running out of options. He made it through emergency surgery on Sunday afternoon, which was our only option, but sadly Nicholas passed away in the wee hours of Monday, 2nd May 2016, with his Daddy in bed snuggling beside him and his Mumma holding his hand. It had been three weeks since we first arrived in the hospital, and we never got to take him home.
The full story of our time in hospital is one for another day. At the moment, it’s too painful to relive and I want to focus on his life, rather than his death. So today I want to share with you the eulogy I wrote and delivered when we celebrated Nicholas’ life on 6 May. It was a beautiful service and we are so thankful to all those who organised such a wonderful tribute to our magnificent boy.
Our hearts are beyond broken, but we are so grateful for the four short years we were able to spend with our beautiful Nicholas. Thank you for loving him and sharing in his story x
Nicholas Fenton Angus Love arrived into the world on 20th March 2012. He came highly anticipated, although not necessarily in all the best ways.
When we first discovered we were going to have our third child in under four years, we were somewhat nervous. When we discovered at 12 weeks that we had a 1 in 14 chance of having a baby with Down syndrome, we were fearful. When it was confirmed at 19 weeks that our baby definitely had Down syndrome, we were broken. We often talk about the following five months as a period of darkness. We were terrified about what this diagnosis would mean for our life and for our family. All we could do was to hope that when we were able to hold our littlest Love in our arms and get to know him, we would fall in love and begin to see the baby, rather than the disability.
And fall in love we did.
After Nicholas arrived rather speedily into the world at 2.55am, I remember holding him and watching him intently and thinking, “How could I not love YOU?”.
He was perfect.
Our little cherub had white blonde hair, with a curl that stood up on top of his head like something out of a Dr Seuss book. His blue eyes were marked with brushfield spots, which made it look like he had stars in his eyes. He soon started weaving his spell, and his Mum, Dad, two big brothers and extended family were besotted.
We may have felt quite alone after receiving a prenatal diagnosis, but it turns out the Down syndrome community is a pretty amazing place to hang out. We were welcomed into the T21 family from early days, but it was at music therapy we formed our first real friendships. From when he was about eight months old, we took Nicholas along to music with the lovely Kate each Monday and met so many wonderful families with kids who rocked their extra chromosomes. I’m sure you can imagine, over the course of a few years, Nicholas started to walk in like he owned the place. We treasured our weekly sessions and the friendships that grew along the way within the Brisbane community.
When Nicholas was 16 months old, we went to Melbourne to spend the week doing a course for parents of children with special needs. We laughed, cried and learned with the most amazing group of warrior parents and formed a network that stretched across the country. We connected with families around the globe through the power of social media, and I soon realised we were far from alone. Over the years, we have shared joys and sorrows with our T21 family internationally and never have we felt that love and realised just how many lives Nicholas has touched more than over the past few weeks.
Whether locally or internationally, there is something so very powerful in that bond between families in the Down syndrome community.
On welcoming a child with a diagnosis into our family, we embarked into a world of therapies. However, far from it feeling like a burden, we enlisted a team of therapists who cheered us on and celebrated our beautiful boy with us each step of the way. From our wonderful friend and osteopath, Sharnie, who was with us from the newborn period, to Dom, Eunice, Theresa, and Alison, our wonderful FECS team, and everyone else who walked along the journey with us. They all helped him become the best possible Nicholas he could be. And, just quietly, I’m pretty sure they all loved him almost as much as we did.
When he appeared on the cover of the ‘qweekend’ magazine at 12 months old and featured in an article regarding prenatal testing and Down syndrome, Nicholas became somewhat of a local celebrity. Years later, we still had people stopping us at the shops saying, “Is that Nicholas?” and many people tell us they still have their copies of the magazine.
Nicholas loved his year at daycare, which he started just before he turned three, and it gave him such a wonderful introduction to fun in a routined environment. I loved dropping him off in the mornings to the sound of little voices exclaiming “Nicholas!” Grandpa Stuart picked him in the afternoon and the daycare team often commented how lovely it was to watch Nicholas’ face light up and run to him. There was never any doubt that these two had a special connection.
At RHSS, Nicholas started playgroup and then, at three and a half, moved into the ECDP class where he made another group of beautiful friends under the loving guidance of Caron, Cathy and Brooke. He would walk through the door to the sound of Kim saying, “Is that my Nicky?” and inevitably spend the next five minutes being distracted by that darn Knex rollercoaster in the display case before we were allowed to go down to his classroom. I especially loved watching Ollie light up when Nicholas arrived and nearly bowling him over with cuddles.
This year, Nicholas became a big ‘kindy kid’, following in the footsteps of his big brothers. I had my initial hesitations about us stepping outside ‘the bubble’, but as soon as we walked in the kindy gates that very first morning, my fears melted away.
We were greeted warmly with friendly hellos and smiles from both familiar faces and new friends. Nicholas’ teacher, Lisa, said “Yay! We get to keep him this time!”
This was the same centre where I did my first ever parent ‘roster day’ when I was pregnant with Nicholas. When Nicholas was eight weeks old, we bathed him in front of all the kindy kids in Sam’s class. He had learnt many songs from the mornings we joined Charlie and his friends in a circle on the mat. He had loved coming along on roster days, and inevitably never wanted to leave when it was time to say goodbye. Nicholas had been part of this kindy community since before he was born. This was where Nicholas belonged, this was where he was already loved.
In true Nicholas style, he strutted in on his first day and, according to his beautiful teachers, Lisa, Fiona and Lynelle, he had a “divine divine divine first day”. Hearing those words made our hearts burst with pride.
In the past few days, Lisa wrote a post about Nicholas’ kindy days far more eloquently than I could describe, so I thought I would share her beautiful words with you now:
“Nicholas, you brought something to our kindy that can’t be captured with words. But I will try… You walked into kindy with confidence, a smile and a giggle. You quickly showed us your passions and how you liked to spend your days. Water and more water, wherever you could find it. Music and singing were times we saw you light up. We taught you ‘Three Jellyfish’ and ‘My Pigeon House’. You taught us ‘Dr Knickerbocker’. You loved the pulley on the fort! You navigated that fort like a pro. Up and down and all over it you would go. Your desire to stay with your friend saw you dive onto fireman poles with little regard for your own safety. If there was a tea party or a phone conversation to be a part of, you were there. You loved role play. You were a fireman, a driver, a doctor, a hairdresser, a policeman and a road worker. Your gentleness and compassion when I was pretending to be sick in hospital showed me again your kind, compassionate heart. You took photos of us all as you played with toy cameras and worked on computers regularly. We could see you playing the roles you see your mummy and daddy engage in. You disappeared one day and we all searched the yard and rooms only to find you in the front office on the keyboard with a phone in your hand. We saw you imagine things like Charlie and create thing with your hands like that big brother Sam. Your gentle kind heart left us in no doubt that you are one of the Love Clan. You had a twinkle in your eye that you used as you whispered sweet nothings in my ear that were uniquely your own. No wonder all the girls thought you were their number one man. But they all only got your attention for pockets of time until that true love of your heart, your mum, walked in each day.
On your first day at kindy, I said to your mum we get to keep you this time after all the times we watched you walk out with your brothers at drop offs… but we didn’t get to keep you for long …. in a physical sense. Your family did not get to keep you long… the world did not get to keep you long… but our hearts have a Nicky part that we will all hold on to forever.”
I am so incredibly grateful that I was able to witness Nicholas in his first term of kindy, to go along as his celebrity Mum on roster day and watch the kids sing him happy birthday, to see how unconditionally loved he was there… and I will treasure those memories.
Nicholas didn’t give away cuddles to just anyone, but he was happy to say hello to as many people as humanly possible. Even the man randomly buying toothpaste in the supermarket, not paying him any attention, would be the lucky recipient of Nicholas’ greetings. He weaved his magic and helped us make friends wherever we went. Nicholas was a ladies man, but he definitely had his favourites, especially Rosie, Ariana, Zara, Elle and Amorette.
While he loved all his cousins, there was a very special place in his heart for Sophie and baby Polly. If ever we were having trouble getting him to go anywhere, we could bribe him with seeing Sophie and he’d be in the car in a flash. He’d get amongst it with all the kids when there were big family gatherings and we never had any doubt that everyone was looking out for him. One of the highlights of his week was playing in the garden at Grandma and Grandpa’s house, and basking in the very special bond the three of them shared. As the biggest brother Sam loved, nurtured and cuddled Nicholas without question. Charlie and Nicholas were like two peas in a pod, sharing a bedroom, their blonde locks and an amazing imagination and sense of play.
It’s hard to know what we might miss the most about Nicholas. I’m sure we will each think of him a million times a day and remember something he did or the way he would say something in his unique dialect. We’ll miss the sound of his door handle rattling as he opened it in the mornings and the little “thump, thump, thump” of his feet as he came down the hallway into our room. We’d give each other a big smile and I’d move over a little, then he’d climb in beside me, fitting perfectly against me, and often fall back asleep. Or he’d climb over the top of me, squeeze in between Ben and I, with those pudgy arms around both our necks and take turns kissing each of our faces.
We will miss his requests for apples and frozen blueberries, and his hoorays when we said we were going to have avocado sushi. Sometimes he’d talk to me when I wasn’t paying attention and I’d hear a little, “Yay! Woohoo!” and realise I’d just agreed to something unintentionally. Our rubbish bin in the kitchen is a bit broken, so as the person who sits on the closest barstool at breakfast time, he considered it his personal job to open and close the bin for us on request with his toe. We will miss the way he told us to “um, um, um” with a little hand gesture when he wanted us to follow him.
As soon as we got into the car, he would request the Wiggles to be played. His song requests would change each day, though, and God help me if I didn’t get it right. He had a passionate love for the Wiggles, especially over the past six months, and I’m so glad I was able to take him to his first concert last month. His look of amazement when the show started was priceless.
We’ll miss the cheeky smiles, the mischievous giggles, the way he’d imitate his brothers and make them laugh. We’ll miss the way he did bottom jumps on the trampoline, pretended to write his name and said the word ‘blueberry’. I’m pretty sure he considered the little wooden car and the playground outside Charlie’s classroom his own private kingdom and it will be impossible to walk past it without remembering him there, surrounded by Preppies and telling them to get out of his face. In every minute of every day, I’ve no doubt we’ll think of him.
When I started sharing our story on the blog nearly five years, I wanted to show other families how much joy Nicholas brought into our lives and help them understand there could be light beyond that incredibly difficult and emotional time of a diagnosis. I wanted to offer a glimpse into our relatively normal family life, but I often questioned whether I was sharing too much. However, over the past week, I have read many messages about how our story has offered hope and touched lives, and I am so thankful to Nicholas for helping us do that. His light was too bright to hide from the world. He has certainly left an incredible legacy for someone so small.
Nicholas has taught us so many things over the past four years. He showed us how to be present and live in the moment. He took everyone at face value, and hugged with his whole body and his whole heart. He radiated light with every smile. He loved his family unconditionally and beyond measure and made us feel like celebrities. He has fundamentally changed who we are and made us better people, and I’m pretty sure we’re not the only ones.
Nicholas Love, you filled every moment of your four short years with life and colour and joy. You gave and received more love in your life than many people do in their entire lifetimes. I still can’t believe you’re not here with us, but I am so so grateful for every single second we were able to spend with you. And we have no regrets. In our four years together, I’m pretty sure we fit in the maximum amount of laughter, snuggles, love and adventures that one family can muster. No words can do justice to all you managed to fit in to your life, and we are so incredibly proud of you. Thank you for choosing us, my little friend. We will never be the same.
Today, as we celebrate Nicholas’ life in the church where Ben and I were married, and where Nicholas, Sam, Charlie and I were all baptised, we want to say thank you to each of you for being a part of Nicholas’ life and sharing in his story.
Our friends in the international Down syndrome community, Carol and Niamh, sent this book to us in the first year of Nicholas’ life. Last week, our lovely friend Ali in France sent a copy to us in what ended up being the final weeks of his life. There’s a beautiful symmetry in that, so it seemed a fitting story to share with you today.
“On the Night You Were Born”
On the night you were born,
The moon smiled with such wonder
That the stars peeked in to see you And the night wind whispered, “Life will never be the same.”
Because there had never been anyone like you…ever in the world.
So enchanted with you were the wind and the rain
That they whispered the sound of your wonderful name.
It sailed through the farmland
High on the breeze…
Over the ocean…
And through the trees…
Until everyone heard it
And everyone knew
Of the one and only ever you.
Not once had there been such eyes, Such a nose,
Such silly, wiggly, wonderful toes.
When the polar bears heard, They danced until dawn.
From faraway places,
The geese flew home.
The moon stayed up until
Morning next day.
And none of the ladybugs flew away.
So whenever you doubt just how special you are
And you wonder who loves you, how much and how far,
Listen for geese honking high in the sky.
(They’re singing a song to remember you by.)
Or notice the bears asleep at the zoo.
(It’s because they’ve been dancing all night for you!)
Or drift off to sleep to the sound of the wind.
(Listen closely…it’s whispering your name again!)
If the moon stays up until morning one day,
Or a ladybug lands and decides to stay,
Or a little bird sits at your window awhile,
It’s because they’re all hoping to see you smile…
For never before in story or rhyme
(not even once upon a time)
Has the world ever known a you, my friend,
And it never will, not ever again…
Heaven blew every trumpet
And played every horn
On the wonderful, marvelous
Night you were born.
~ Nancy Tillman
* Photographs taken in January 2016 by Daddalove