The Lantern Against All Fears | A Special Needs Story that Stirs

I was invited to speak on the theme "expansion" at the event Stories that Stir, on the 24th February 2025. I know the lovely organiser, Monica, and I was honoured when she invited me to talk about our story. You can read the transcript below, or watch the video:

My husband and I have been together for more than 21 years, and for the most part of it we were really not interested in having children.

It's not that we don't like children, we love children. Most of them.

It's just that that we always knew that becoming parents shifts your priorities and we always believed that we'd rather not be parents at all than be irresponsible parents.

Maybe it was COVID, that slowed down our artistic projects; or maybe as we turned 40 we could really hear that clock ticking, but at a certain point we looked into each others eyes and we said “What are we doing? If we don't have children we are going to regret it for the rest of our lives. Let's have a baby we are ready.”

Life looked at us and said “Ready? Ha!”.

At the morphology scan, at 20 weeks of pregnancy, we found out that our baby had heart defects and a few other organ abnormalities, and when she was three weeks old we got a diagnosis: she has Kabuki syndrome.

You see, when you choose to become a parent, you know that your world isn’t just expanding. You know that you are going to learn skills in a completely new field, your brain is rewired and your whole set of priorities and responsibilities shift, to cater to the needs of a new life.

Your world becomes a galaxy.

But when you become a special needs parent, oh girl, your world doesn't just expand into a galaxy. You enter the realm of a comic book multiverse.

Those multiverses don’t abide the laws of physics, they don’t have a scientific explanation, and yet you need to accept the premise that that’s how they work, whether you like it or not.

Like the Green Lantern. I know it’s not the most popular comic book, but I love the story and also green is the colour of Kabuki Syndrome, so that’s the comic book I want to mention.

The ring of the Green Lantern makes you do incredible things, you become a superhero when you wear that ring, you can move mountains, as long as you accept its rules: you believe in it and now and then you go back home and recharge it with the lantern.

It’s sort of a mix between Santa Claus and a Tesla.

In the same way, asking myself “why did this syndrome multiverse happen to us” doesn’t really have an answer that makes sense.

I have to accept the premise that my daughter was born with Kabuki Syndrome, even though it’s a rare genetic condition, even though my husband and I are not carriers, even though the chances to conceive someone with this syndrome don’t increase with age, even though during my pregnancy I have been the healthiest, the most cautious mama on earth.

It was a spontaneous genetic mutation.

A random occurrence that has no scientific explanation whatsoever and yet, that has completely reshaped our lives, our expectations, our identities; forever.

The complexities of a rare syndrome multiverse are just too many and 10 hours of talk wouldn’t be enough to describe it all.

I only have 10 minutes today and out of all the traumas and emotions that we have had in the past 2 years, I will just focus on the Green Lantern’s villain: fear.

I have been scared, really scared, for the past well, almost 3 years.

I was perplexed and scared during that morphology scan, which lasted 2 hours and a half and got repeated over and over again, each time by a more senior technician, until the owner of the radiology place visited me and confirmed that the baby’s heart had to be seen by a cardiologist at the hospital as soon as possible.

I was scared and concerned throughout the rest of the pregnancy, as I didn’t want to cause to my baby any further complications.

I was scared that her heart would suffer during birth, that’s why I asked multiple times for an elective caesarean.

The medical team didn’t accept it, as “it would be so much better if you give birth naturally”.

So, naturally, I got induced at 39 weeks, I stayed in labour for 12 hours with no epidural and ended up having an emergency caesarean anyway.

The best of both worlds. Lucky me!

I was scared when they immediately took her from me and placed her in NICU at the Children’s hospital, where she had her first heart procedure at 8 days old.

That was the hardest day of my life, and it’s still fresh in my memory as if it happened yesterday.

Being in that hospital corridor, with my baby in one of those life support incubators, doctors and nurses in their operation theatre scrubs, handing me the documents that were stating that they would repair her whole aortic arch, try to fix 2 whole she had in 2 different ventricles, and that I was accepting that her chances of dying during the surgery were double the normal mortality rate, because of how complex her situation was.

And begging the doctors “Please, bring her back to me”.

6 hours of open-heart surgery in bypass, where my heart stopped with hers.

Every single muscle in my body was shaking, I couldn’t rest, I couldn’t breathe, I didn’t even have enough voice to beg “God, please God save her!”. I called my sister and I didn’t even say a word: I just kept crying and sobbing over the phone, while my sister was telling me “You have to be strong, you have to be strong for her”.

The heart surgery was successful although she needed another heart catheter a few months after, but in general the first year of her life meant one fear after the other. One hospitalisation after the other, one test after the other to figure out her aspiration and reflux issues. I also had a few health issues myself, but who cares when your newborn has gone through so much? My medical folder looks like a silly sticky note, compared to hers.

The beginning of her life has been a real fight against a multiverse super-villain, and we are still dealing with fears and uncertainty: is she going to have a second heart surgery and if so, when? When is the hip surgery going to happen? What will happen with her hearing loss? Will she ever be somehow independent? And most of all: will I outlive my child?

These and more are the questions of my everyday life and what the story of Green Lantern didn’t get right is that, sometimes, will power is not going to help you against fear.

Because it doesn’t matter how much you want things to get better, it doesn’t matter how much you advocate, plan, organise, coordinate the efforts, and look for answers: the life of a special needs parent is a roller coaster where most of the times you feel completely powerless, you live in survival mode fixing never-ending problems, and you witness your kid being dragged down by a syndrome they didn’t ask for nor deserve.

Will power is not the super-charge you need against fear.

But love is.

Love nurtures my soul every single moment I spend with my child; love makes me patient while driving her to weekly therapies, love makes me reach out for help and find so many beautiful people who try their best to listen and support us, even if most of the times they don’t understand what we’re going through.

Love between me and my husband is saving our marriage, because when we decided we were ready to become parents we certainly didn’t sign up for a syndrome, but we chose and still choose every day to cope with all the challenges and fears together.

It's not an easy life, but it’s definitely special, and filled with love.

And I couldn’t be more proud of my gorgeous daughter who, to me, is the best superhero in the entire universe. Green Lantern, bite me.

Now let me address you all while finishing my story.

Please, whenever you meet someone with disabilities or complex needs, remember that most likely that day they’ve had to recharge their ring to fight against yet another villain on their path.

Every time you support them, help them, listen to them, you are going to recharge with love their Lantern and you will forever be one of the good guys in their multiverse.

Thank you.