Tell us a bit about yourself?

I am a wife and a proud mama to three incredible children. I work hard to raise awareness for CMV, and am a fierce advocate for women, particularly new mums - especially those whose journey is fraught with uncertainty and diagnosis. I am a loyal friend and there is nothing more important to me than my family.

What were you doing before babies?

Before babies I was working in management for a men’s clothing store, living the high life and blissfully unaware of what the universe had in store for me.

How did you come to be a mum?

It all happened rather quickly... we had only been together 6 months when we found out we were 3 months pregnant. We excitedly started building a life together. At 31weeks we were offered termination after it was discovered that our precious boys brain was misshapen and under developed. The next 6 weeks were a blur of appointments, full of specialists and experts preparing us for the worst. “Not compatible with life” was the phrase they used. At 37+5weeks our #cmvwarrior, Christopher Phillip, was born, and against all odds he was breathing. After a time in the NICU we were miraculously allowed to take our boy home! Since then it has been a whirlwind of appointments, therapies, treatments, procedures, equipment trials, specialists, surgeries, hospital visits, and a whole lot of love. Secondary to Congential CMV (Cytomegalovirus) he has microcephaly, severe global development delay, cerebral palsy, epilepsy, unilateral hearing loss, cortical vision impairment, residual constipation, and hip dysplasia. He is non-verbal, non-mobile, PEG fed and has to rely on us to do absolutely everything for him. Despite all of this he has a smile to brighten the cloudiest day, and eyes that pierce your soul. Just before his second birthday, we got married. Not long after this, we found out we were pregnant with our princess Charlotte Patricia. She is an absolute joy, and has helped us through many a dark day with her awe of the world around her and the love she showers upon her brother, and her family, without inhibition. Miss Matilda Mary made her speedy arrival 18months later. She is a whirlwind of energy and endless joy, full of big emotions- she is passionate about fun and cares deeply for those around her. I adore her admiration for her sister and doting love for her brother.

What has your feeding journey been like?

When we had Christopher, it was extremely stressful and we had a lot of fear and uncertainty hanging over our heads. Looking back now, it is no surprise that my milk just never came. He couldn’t latch because of all the interference on his face, but I tortured myself for about three weeks, pumping every two hours - day and night - desperate to give my boy the life saving liquid the doctors were telling me he needed. One day an angel asked me ‘if the worst that comes of all of this is that he is bottle fed, is that really such a bad thing?’ I stopped pumping, the clouds parted, a weight was lifted off my chest and we started to thrive. During our stay in NICU, discussions of tube feeding were had. Our superhuman bottle fed for three years. He even started thick solids. But due to his condition, he was loosing his ability to swallow safely, so it was becoming increasingly difficult to ensure he was consuming more energy than he was expelling. So not long after his third birthday we started our tube journey. He had an NG tube for 9 long months before undergoing surgery to have a PEG put in. This is a button on his tummy that allows us to feed him directly into his stomach, reducing the risk of aspiration and ensuring we can get the right amount of calories and energy onto our boy without hassle or worry.

I was able to breast feed both the girls, no problems. Charlotte loved her food showing signs of self weaning from about 9months, finishing our feeding journey a week after her 1st birthday (well before I was ready!) Matilda on the other hand was a boobie monster. Our sleep was rubbish and she would prefer boob over food. She was sucking the life out of me, so I shut up shop and gave her a bottle when she was about 10months old. Sleep improved and she started showing interest in food. We haven’t looked back!

What has sleep been like in your household?

With a 7year old, 4year old and 2.5year old, sleep has always been a rare and precious commodity in our household. Christopher has never slept through the night, often waking because he is uncomfortable or has had a seizure. Charlotte has always been our dream baby - sleeping 10-12hours since she was about 7/8months old. Matilda still wakes and crawls into our bed somewhere between 3-4am. We’ve come a long way from the endless nights of cluster feeding and using me for comfort so for now I just soak up the cuddles while I can!

The hardest bits....

Managing everybody’s emotional needs. As you can imagine, with spontaneous hospital visits, that can span a week, there are some haywire toddlers with BIG emotions to come home to. More often than not, we are still processing all that has happened while also trying to fill multiple buckets with reassurance, security and love. It can be tough. We try and be as honest as possible with them, but also keep it age appropriate.

Our greatest guilt / struggle is knowing that our girls are going to experience the greatest emotional pain imaginable when their brothers time is up, and there is nothing we can do to shield them from it. In the meantime, we work hard to foster their emotional resilience and instill security and love in the foundations of all interactions.

The best bits...

Most definitely watching them interact with each other. The girls including their brother in their play is second nature to them - they both have such a special relationship with him. The compassion, kindness, patience and empathy that this naturally fosters shines through in their day to day interactions with others.

It is the quiet moments that you could so easily miss for me. A toddlers hand on your face with an ‘I love you mummy’; seeing the girls check in on their brother with a hug and a kiss on the head as they pass; watching them develop an incredible friendship with one another; the care and kindness they so obviously have for those around them; the awe and curiosity they have for the world; the determination they have to learn new things and the pride and satisfaction they display when it is finally mastered; their desire to spend time together as a family. But it is in these moments that all the hard work and dedication to teaching core family values, kindness and compassion is so, so worth it.

How do you make time for you?

I sneak rare moments for myself whenever I can - the occasional night out with girlfriends, an hour here and there for some self care pampering, a late night cup of tea, boot camp with friends, a Sunday morning walk with the fam. I have two days a week with all children in care to get my jobs done and make sure the house runs smoothly.

What’s next for you and your family?

Our family is not yet complete. We would love to add more babies to our brood eventually. In the meantime, I spend my child free days working on a project called Untold. Our aim is to create a space for parents to share the unspoken truths of parenthood - particularly those who are raising children with special needs. By sharing our stories we create a sacred space where parents and carers can feel seen and heard, ensuring they are not alone in their struggles, giving them strength to face the fear and uncertainty their child’s situation can often bring.