We were on the beach with our 15-month-old daughter recently when an older lady came up and started watching her.
She was playing with her cousins in the sand. The big kids collected fists full of starfish from the rock pools and arranged them in front of her, like living Lego. They were all having a great time.
The lady narrowed her eyes and said “your daughter has beautiful skin”.
I waited defensively, not sure how to respond.
I was used to explaining that the red blotchy patterns across Florence’s arms were vascular birthmarks, not a rash. I could quickly draw up a photo on my phone to show that the red net like marks across her body were just a reaction to the heat or cold and that she was completely fine, not to worry.
I have had thousands of conversations about how well her laser treatment has worked to remove the extensive marks that had covered much of her face and the remarkable nature of modern medicine.
But this compliment was something, I am ashamed to say, I wasn’t prepared for.
“We always want Florence to know she is beautiful just as she is… we didn’t want her first ideas about her self-image and self-worth to be that mum and dad wanted her to look different.”
“She is lovely and olive, just like you two,” she explained further, in case we hadn’t understood. I thanked her and as I did a little tear formed in the corner of my eye. It made me see that there can be a future for Florence full of positive conversations in a world that seems intent on “fixing” her.
Needless to say, the lady who had offered the compliment made a hasty exit and I don’t blame her. It must have seemed like a huge overreaction but little did she know all we had been through to get to that point in time.
Florence made a dramatic entrance into the world at 10 am one Friday morning.
My husband had just finished his breakfast TV shift and I could hear him scoffing down a bowl of cereal when I called him to say our baby was arriving today, almost three weeks early.
He sounded shocked, as if the thought of our daughter not arriving on her actual due date had never occurred to him.
“But we’re booked in for a few weeks’ time” he said, “our kitchen reno isn’t even finished!”
It turned out that booking or no booking, kitchen or no kitchen we were having a baby that day, so I was prepared for an emergency caesarean. I showered and tried to stay calm, Matt arrived just in time to get scrubbed in and hold my hand for the epidural.
What felt like moments later our beautiful baby girl came into the world.
For a second I got to touch Florence’s perfect little pillowy cheek. It soon became clear that something else was going on, the theatre quickly filled with movement and concerned expressions.
It sounds strange, but it wasn’t until then that I noticed Florence was born with red birth marks across her face and body. All I could think of was how strong and resilient I would try to make her. It would be my job as her mum to make sure she knows how beautiful she is, inside and out. I would make sure she was so loved that no one could harm her with their words.
As these thoughts were racing through my head they whisked her from my arms and started checking her breathing. Florence was struggling, her blood sugars had dropped and her breathing became erratic. Matt stood next to her, watching the paediatricians work away at her tiny lungs. Moments later he was on the ground. He’d fainted.
“I sobbed for my baby, for myself, for all of the dreams I had for her to live a happy and healthy life.”
The next few hours were a blur and my only memories were of a longing to see my baby, to hold her and breathe her in.
Matt took some photos of her through the crib in intensive care as he fed her sugar syrup off a gloved finger. He brought the pics to the ward to show me, so I could see her perfect little face.
She looked so strong and even though she was just a few hours old she was looking right at her Daddy. It’s a bond that has been unshakable since that day.
It hadn’t been a text book experience but there I was with my beautiful girl, my husband and my health.
Despite the crazy way it had unfolded, I couldn’t be happier.
But that happy bubble was about to burst. A short time later the paediatrician came to talk to me. Matt was still down in Intensive Care with Florence and I was alone. The doctor was finishing his shift and wanted to explain, first-hand what was happening.
It turned out that birthmarks can be much more than just a discolouration of skin. Because Florence’s were so extensive they had to check each of her organs carefully to see if there were any abnormalities or bleeding deeper in her body. She could have major issues with any of her organs.
He swiftly organised a series of appointments over the next few weeks to check her head to toe, ultrasounds, MRI, ECG and blood tests were ordered.
My head was still foggy from the painkillers but I was starting to realise this wasn’t going to be as simple as I had thought. My concerns for Florence expanded like a balloon until I could think of nothing else. Why us, after everything we had been through?
I turned to Doctor Google and researched cases of children in Florence’s position with severe disability. Children who couldn’t walk, speak or feed themselves. I considered how our lives would unfold if that was our fate. Matt came up to stay with me and a short time later they let Florence come and join us. She was stable and seemed well so they let me breastfeed her for the first time. I will always remember how it felt to finally be together, to hold her and breath in her intoxicating smell.
Because Florence was early, Matt still had to go into work the next week and planned to get back to the hospital as soon as he could. On Monday I dreaded being alone and was bracing for the first major test, a full body ultrasound to check her organs.
It had all happened so quickly our parents hadn’t arrived from interstate. We were in such shock, we didn’t even think to organise for a friend to come along for support.
There wasn’t a set time for the scan and somehow it unfolded that I was heading down to the bottom floor of the hospital, with just my baby and a nurse.
I felt so alone.
For the first time since Florence was born I started crying.
Not just a little bit…but hysterical, crazy, scaring other people crying.
The poor nurse just looked at me in disbelief and seemed unsure if she should offer a hug or call for help.
She fetched me some tissues and I sobbed for my baby, for myself, for all of the dreams I had for her to live a happy and healthy life.
The feelings were so overwhelming, not just because of what we were facing but because it brought back emotions from another time in my life I felt like this.
I was in the waiting room of a hospital, a healthy 25-year-old, expecting to be told I had a chest infection.
Instead the doctor explained that despite being a healthy, young, non-smoker I had a tumour, probably cancer, blocking my airway.
I had gone from training for a long-distance ocean swim to being told I would likely have my lung removed and be breathless for life.
That time I had cried these same crazy tears, I had grieved my life and my loss. I hated my body for failing me. I was so angry at myself. I could fill a book with what I learned over the following years. Learning how to walk again, recovering after having two lobes of my lung removed, learning how to manage chronic pain for life, navigating a health system that was in awe of your rarity, trying to claw back a media career, build a fledgling relationship under extreme and painful circumstances and overcome depression when it all became too much.
And in this moment, I worried for my daughter and all that she might have to tackle.
I questioned whether my cancer or cancer treatment had somehow caused this pain for her or whether that physical and emotional trauma might have impacted my pregnancy years on. I can see now that was illogical. I was trying to reason in a situation without explanation. To blame myself so I could deal with all this worry and fear.
This day was just another reminder that we can be travelling down a certain track, when something in life shunts us in a completely different direction.
This was the direction we needed to go.
A few moments later Matt joined us and we got initial information back that all of Florence’s organs were ok. We still faced a barrage of tests and appointments but her ultrasound was normal. We could celebrate for now.
Our endlessly thoughtful obstetrician got us an appointment with the best Paediatric Dermatologist in Perth and the three of us were moved to a bigger room with fewer medical appliances where we could snuggle on the bed together and look out at the trees.
We have been so lucky, in unimaginable ways.
Florence has physio to strengthen her legs as she learns to walk because of her low muscle tone and hyper-flexibility. We still have lots of scans to make sure nothing changes in her body but when we consider what we could be facing, she has very limited challenges.
We decided to go ahead with laser treatment for her facial birthmarks and now her face has only the faintest smudge of colour when she throws a tantrum (The latest of which was because I dared feed her strawberries for breakfast, the same strawberries that had been her favourite food the day before). Otherwise there is no sign of what we have been through together.
“We haven’t always got it right, we’ve fought ourselves and each other, we’ve burnt out and built back up but I know we can tackle anything together.”
We agonised over whether we should treat her birthmarks. We always want Florence to know she is beautiful just as she is. Nothing about her needed to change. And we didn’t want her first ideas about her self-image and self-worth to be that “mum and dad wanted her to look different”.
But I also know that the world can be a challenging place. And in that moment on the beach as Florence played with starfish in the sand and the focus was on her as a whole. I felt completely certain that we had made the right decision for her.
Her curiosity, her laugh, her beautiful golden skin and delicious rolls were all people could see. It made me so grateful to know she won’t be defined by something as superficial as a mark on her skin. I know all parents say this about their children, but Florence is a sparkling little person.
It’s almost as if she has taken all of the love that has been poured into her over the last 15 months and shines it back at us. Reminding us daily of what really matters. And this helps us make choices about her future.
I think now the worry Matt and I have shared might have been for a reason. We have learnt how to stick together and be strong in tough times, we have learnt how to navigate the health system to try and get the best treatment, we have learnt how to get knocked down and rebuild, to face a crappy situation front on and say “this is not going to dictate my life, I will respect my limitations but they will not define me”.
It has been our preparation for how to keep trusting, keeping loving ourselves and each other. We haven’t always got it right, we’ve fought ourselves and each other, we’ve burnt out and built back up but I know we can tackle anything together.
Now instead of thinking “why me?” I think “well, why not me?”
I know we’ll make mistakes along the way, but we’ll teach her the importance of having a deep respect for yourself, how to love every part of our imperfect bodies.
Maybe there is some magic in this chaos after all.
Maybe we are just the right people for the beautiful Florence to call parents.
Main Image: Bronnie Joel Photography
You can follow more of Nikki and Florence’s journey via Nikki’s Instagram account @nikkiwilsonsmith
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