The Miracle Project – Annie, Charlie, Sam and Nicholas

Annie Love is wife to Ben and the mother of three beautiful boys. She works in marketing for the family’s IT business, Grassroots IT, and shares her passion for writing, photography, creativity and putting more love out in the world through her blog and online store, Mummalove. You can also connect with the Loves over on Instagram and on Facebook.

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Finding Miracles in Motherhood

 

When the first miracle hit, I was not ready. At all. I did not ask to be that miraculous mother with the disabled child. That was not part of the life vision, and I approached it with as much resistance as I could muster.

Going into the pregnancy with our third, and very unexpected, baby, I’d had a sense from early on that something was different. Nothing I could pinpoint, nothing dramatic or obvious, just the intuition that left little breadcrumbs that perhaps we’d started a different journey with this baby.

After our 12-week nuchal scan and blood test combined to give us a 1 in 14 chance that we would be having a baby with Trisomy 21, or Down syndrome as it is commonly referred to, I tried not to worry. Which was akin to pretending I didn’t have a ball and chain strapped to my ankle.

All the fears and worries consumed my every waking thought, interspersed with thoughts that perhaps I was just being a drama queen and this would all just turn out to be a false alarm. I began hearing many, many stories of people who had received a high ‘risk result’ on their 12-week test and the story always ended with “but it was all fine.” Maybe it would be fine for us too.

I felt as though I heard God say, “Just trust me.” While comforted by that, I didn’t get the sense that God meant “Trust me, I’m going to make this easy”… more like “Trust me. This might be a cracker of a journey, but I’m here with you.”

Following much soul searching and many difficult conversations, my husband, Ben, and I decided to go ahead with an amniocentesis to confirm whether or not our baby did have Trisomy 21.

We also made a decision that, no matter what the result, our baby would be beautiful and loved and we would proceed with the pregnancy.

I felt as though the uncertainty was drowning us and it would be better just to know, but in essence what I was really looking for was to know that the baby did not have Down syndrome so that we could skip merrily through the rest of the pregnancy. But that’s not how it turned out.

The Miracle Project

Lily Kate Photography

 After 48 agonising hours of anxious waiting after the amniocentesis, we finally received the call from our Obstetrician to confirm that our baby did, in fact, have three copies of his 21st chromosome.

We were devastated.

And, while in theory we had made the decision that we would proceed with the pregnancy regardless of outcome of the amnio, things weren’t quite so black and white once we had a confirmed diagnosis of Down syndrome. At that stage, I was about 18 weeks pregnant and we had five long months ahead of us before being able to meet this baby in person.

Looking back, I often refer to this time as ‘the darkness’, which was punctuated by difficult conversations, tears, sadness and a whole lot of silence between Ben and I as we each processed our own grief over the diagnosis in different ways.

 But on 20th March 2012, our miracle arrived in the form of a healthy 8 pound 3 ounce baby boy, and we named him Nicholas. After Nicholas arrived rather speedily into the world in the wee hours of the morning, I remember looking at him intently and thinking,
“How could I not love YOU?”

He was perfect, 47 chromosomes and all, and quickly weaved his magic over his Mum, Dad, two big brothers and extended family.

I can’t say categorically say I never experienced any grief over the diagnosis ever again, but they were brief and fleeting moments which were usually more about other people’s limited views of Down syndrome than anything to do with Nicholas.

As Nicholas grew, he spread love and joy wherever he went. It was actually pretty impossible not to fall in love with him, as most people discovered quite quickly after meeting him, and he made his family feel like celebrities. Sure, he may have had been a little delayed on some typical milestones, but it isn’t a competition.

He helped us to slow down, to be present and to find joy in each moment.

The Miracle Project

Lily Kate Photography

When Nicholas’ biggest brother, Sam, was diagnosed with Acute Lymphoblastic Leukaemia at the age of five (when Charlie was three and Nicholas was 18 months), we received another reminder that we are not the ones in control. But through our training ground of the Down syndrome diagnosis almost two years earlier, we had learnt so many valuable lessons and we went into this next new challenge a little better prepared.

Ben and I were much better at communicating and leaned into each other. We were surrounded by an amazing network of family and friends who launched into action to support us in any way they could. We simplified life in many ways, faced this ‘new normal’ one day and one obstacle at a time, and we always found things to be grateful for.

Many times throughout Sam’s Leukaemia treatment protocol, I thought back to the third baby we may never have had. Had Nicholas not been in our family, I imagined we may have been wondering just how we would have coped with Leukaemia whilst also juggling the needs of a child with Down syndrome. Perhaps we would have been thinking we’d made the right decision to not keep that third baby of ours.

But the truth was that Nicholas beamed his light through the darkest of our days facing Leukaemia with Sam.

We took solace in the neck squeezes he gave us with those chubby arms whenever we walked back in the door from the hospital, and he balanced out the toughest of days with his pure joy. Thankfully after three and a bit years of chemotherapy, Sam was able to ‘ring the bell’ to signal the end of treatment and he’s now a happy, thriving nine year old. We’re so grateful to see him so healthy and strong.

Lily Kate Photography

Lily Kate Photography

In 2016, Nicholas started at our local kindy, following in the footsteps of his two big brothers. His eldest brother, Sam, had started at the very same kindy when I was pregnant with Nicholas. Nicholas had been bathed in front of the kindy kids when he was a newborn, and as a toddler he’d sung songs with the children in the mornings, and he’d spent many a day accompanying me when I was on the parent roster.

He’d been part of that community since before he was born, they’d watched him grow and thrive, and now it was his turn to be a big kindy kid.

On his first day he strutted in, in true Nicholas Love style, and became a truly loved and valued member of the class. In spite of the great fears we had during the ‘darkness’ in our pregnancy, here we were celebrating another milestone, another little miracle in this journey with our youngest son.

The Miracle Project

Lily Kate Photography

As his first term at kindy was drawing to a close, Nicholas spiked a fever and wasn’t well, so he missed the last week but made a brief celebrity appearance at the Easter concert. The next couple of weeks, the boys were on school holidays and we had some fun together, like attending his first ever Wiggles concert, but Nicholas certainly wasn’t 100%.

Just when I felt like he was starting to get a bit better, we noticed a few new symptoms and decided to head up to the hospital late one night to get checked out. From inauspicious initial reviews from the doctors on duty and being told we’d probably be home in about 24 hours, things quickly deteriorated and within six hours, Nicholas was in ICU.

There were many tense moments, many difficult conversations with the amazing medical team, many tears, and much fear. We celebrated each little win and sign of progress. We held dance parties in Nicholas’ room, read him stories, held his hand. His aunties, uncles and cousins sent voice recordings with messages and stories for him.

We learned that we utilise dark humour as a form of coping.

We were overwhelmed with the outpouring of love for us and our boy from all around the world. And just as we got over one hurdle and started to breathe a little easier, the next complication would arise and we’d hold our breath again.

On his last afternoon on earth, we knew we had to pull off the biggest miracle we’d ever have to muster.

 Lily Kate Photography

Lily Kate Photography

 

Nicholas’ tribe was called in around his bedside to see him before he went in for emergency surgery, knowing that there was a good chance he wouldn’t make it through, and we kissed his little head before he was wheeled into theatre.

An hour and a half later, as Ben and I sat holding hands beside the Brisbane River, we received a call from the hospital with the good news that Nicholas had indeed pulled a miracle out of his hat and the surgery had gone well. We went back to spend some time with him, then Ben and I retreated to our room elsewhere in the hospital to catch up on some sleep.

But in the wee hours of the next morning, we received a call from the head doctor in ICU, telling us that he expected Nicholas would pass away within the next few hours.

He invited us to come and be with him if we wanted to. And later that morning, Nicholas passed away with his Daddy snuggling beside him in bed and me holding his hand. We told him how proud we were of him and how deeply he was loved and always will be.

If it was from a sheer force of love and prayers from all around the globe, we know that we would have been able to take our beautiful Nicholas home with us.

But I am learning that miracles don’t always come in the form you think they’ll be in, that we’re not always granted exactly what we wish for.

I have learned the hard way that I can’t always control what happens to me, but I can control how I react.
So, in Nicholas’ absence, I am learning to celebrate the gifts we have been given:
  • That we were able to look beyond our fears to welcome a baby into our family who brought such an incredible light into the world.
  • The many, many lives that Nicholas touched in his time on earth, and the spirit that he continues to share with the world through us. He left a pretty incredible legacy for someone so small.
  • Four awesome years of soaking up as much joy, snuggles, love and adventure that one family could muster, and knowing that we have no regrets about how we spent those precious years together.
Nicholas has been the portal to my greatest life lesson: that in the deepest of darkness there is always a light on the other side, even if the landscape is different to how we expected it to look.

And what a great light this boy brought to our lives and how he enriched our landscape. We couldn’t have dreamed of how much we would be changed for the better for knowing our delightful Nicholas Love.

There are many miracles, big and small, to be found on this great adventure of parenthood, if only we remember to stop and pay attention, to be present, to soak in as much joy and love as possible, and to always find things to be grateful for.

The Miracle Project

Lily Kate Photography

 

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If you would like to share your miracle moments and special needs journey,  please get in touch here. 

#themiracleproject “Uniting our stories across the globe”.

 

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