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Olivia's World, Orlando, FL (2026)

Our beautiful Olivia was born 6 weeks early, weighing 4 lbs. 4oz. via C-section on June 3rd, 2012 (Doctors believe dates may have been out and she was only 32 weeks at birth), and had difficulties breathing. Olivia had an AGPAR score of only 4 at 1 minute after birth, increasing to 7 after 5 minutes. Olivia held her own for the first 24 hours of her life (the "honeymoon" period) but was unable to

maintain her sats after this time. Olivia was experiencing periods of sleep apnea and bradycardia. Olivia would switch between C-PAP and a nasal cannula before being trached. Olivia was born with BVCP (Bilateral Vocal Cord Paralysis), bronchomalacia in her left bronchi, and hypotonia (low muscle tone) throughout her body. Unable to swallow, Olivia was fed via a nasogastric tube until she had a feeding tube inserted in her stomach. I exclusively pumped the first couple of months to enable the best start for Olivia. I felt at that time that it was the only thing I could do for my baby and the only thing I had control over. We were hoping Olivia’s challenges would resolve as she grew (premature babies typically outgrow these medical conditions). She was in a lot of danger of aspirating. At just 3 weeks and 1 day old and weighing only 4 lbs, Olivia had surgery: a Tracheostomy, a gastrostomy, and a Nissen fundoplication. Powerless with tears streaming down my cheeks, I watched as my tiny baby was rolled away in her isolette into surgery, and I did not know if I would hold her in my arms again. Olivia was placed on a ventilator post-surgery. It took some time to figure out the correct settings to ensure she had the respiratory support she needed. Olivia spent almost the first four months of her life in the NICU. During this time, we participated in Kangaroo care whenever possible to help with bonding. Olivia’s last MRI before discharge did not come back clear. This was shocking to us, as her first MRI at just one day old was clear. The severity of the damage could not be determined. The neurologist at the time had no bedside manner, telling us, "She may never walk; she may never talk. We do not know. I do not have a crystal ball." Understandably, my husband and I were devastated to receive this news, especially as we had no reason to think otherwise as her first MRI was normal. Olivia finally came home after four long months in the NICU. She came home with 24/7 nursing on a ventilator with a rate, a trach, additional oxygen, and a G-Tube. The last 11 years have been a blur of hospital appointments, doctor appointments, therapies, procedures, hospitalizations, and more. Being far from family here in Orlando, Florida, USA (my family is all back home in Scotland), some days can be tougher than others. Olivia is now 11 years old and is doing great considering her numerous challenges. Maintaining consistent nursing has been my biggest challenge. Now a single mom, with no help from Olivia’s father, financial or otherwise, I must maintain employment to keep a roof over our heads. Trying to keep a job with a child with complex medical needs is difficult. When Olivia requires hospitalization, I must stay with her 24/7. Olivia is non-verbal, and I need to be there for her. She requires constant supervision, and the hospital does not have staff who can stay by her side constantly. Then, when nurses call out, we rarely get a replacement. And then there is my own health to consider. FMLA is not available until one year of employment at the same facility has passed. Trying to get to that year mark is a challenge. I am so happy to report that Olivia is thriving at home. (July 2023) Olivia still has her trach, is vent dependent while sleeping, is G-tube dependent, and still has no diagnosis at this stage. She has global developmental delays, autism, epilepsy, several GI issues, chronic lung disease, hypotonia, myopia, and astigmastism. Extensive genetic testing has been completed for Olivia and has not identified an etiology for her concerns. A microarray identified a 16p11.2 deletion that was paternally inherited. WES (whole exome sequencing) identified changes in two novel genes. Olivia is a happy, strong, brave, resilient, beautiful, content, and adorable little girl. Absolutely enchanting. Olivia takes everything in her stride. She is my Hero! Thank you for continuing to support us on this rollercoaster journey known as life.

07/09/2026

Watching the game when Olivia wandered into the room, looked at the TV and randomly shouted...

"C'mon Mexico!" 🇲🇽😂

I think the last match she saw me watching was England vs Mexico!
I'd say I've trained my Florida-born daughter pretty well. 😆

A proud Scottish mum raising an American lass with the right football values. 🏴󠁧󠁢󠁳󠁣󠁴󠁿🇺🇸

06/03/2026

Happy 14th Birthday to my precious girl, Olivia! 🎉💖

I cannot believe you are 14 today. Time really does fly.

There are not enough words to express how proud I am of you. In your short life, you have overcome more challenges than most people will ever face. Your bravery, resilience, and determination inspire me every single day. Through it all, you continue to face the world with the most beautiful smile.

You are as beautiful on the inside as you are on the outside. Your gentle, loving, and peaceful nature has a way of calming everyone around you. You are my smooth water in the middle of life's storms. Your smile brightens even my hardest days, and your cuddles are my favorite place to be.

The doctors once told us that because you weren't speaking by age five, you might never speak. Well, look at you now — our little chatterbox! They said you might never be able to eat, and now you're enjoying one or two meals a day and absolutely loving your food.

You continue to prove that limits are meant to be challenged. Your strength and determination amaze me.

You love your school, and your school loves you right back. I love hearing about you greeting your classmates with hugs and kindness every day. You bring joy, warmth, and light to everyone fortunate enough to know you. The impact you have on others is truly special.

Olivia, you have taught me more about courage, perseverance, and unconditional love than you will ever know. I am endlessly proud to be your mum, and I cannot wait to see what amazing things you do next.

Happy Birthday, Olivia Pagano. I love you more than words can ever say. ❤️🎂🎈

05/26/2026

Mothers of special needs children fight constant battles with PTSD behind closed doors.
We put on smiles, build up our armor, and to the world we put on a good show and go to battle. But underneath, we are often crumbling wrecks. The PTSD is real, and sometimes the symptoms become unbearable. Sometimes they almost break us.
To the world, I am strong, resilient, courageous, brave. But not everyone sees the constant battles I fight behind closed doors.
I had a panic attack on Saturday so severe I had to call 911. It came out of nowhere. Don’t ask me how it started, but I truly thought that was it.
My poor girl was frightened. Seeing the EMTs attend to me instead of her was something new to her, and it startled her. I replayed the scenario in my head over and over for the rest of the day.
Where did that come from?
Why did it happen?
Then the next day, it clicked.
Of course I have PTSD.
Every second of my life, I worry about my medically fragile daughter.
That realization came when Olivia was quiet for a little while. She was playing in her room while I was watching Hollyoaks in the living room and drinking tea. I knew I should get up and check on her, but I stayed put for a few more minutes.
I shouted, “Olivia, say ahh!” — our ongoing check to make sure everything is okay.
No response.
Again I shouted, “Olivia, say ahh!”
Still no response.
My heart raced. My breathing nearly stopped. I instantly envisioned walking into her room and finding her blue and unresponsive.
Olivia has had incidents where she suddenly stopped breathing and became unresponsive. In that moment, I realized:
This is why you are the way you are.
Most parents get nervous when their child is quiet because they think they must be up to something — scribbling on the walls or cutting their hair. But medically fragile parents think differently.
We think the unthinkable.
It’s too much.
And here we go again.
Monday morning — well, technically Tuesday since yesterday was Memorial Day — Olivia’s school nurse shows up and immediately asks me what’s wrong with my face. I tell her I’ve been picking at my skin. I do it when I’m anxious. Now it’s all red and scabbed over.
We talk.
She gets emotional.
I get emotional.
It’s not even 8 a.m.
She leaves with Olivia’s wheelchair for school, but Olivia stays with me because we have feeding therapy that morning. I’m already stressed thinking about getting her to therapy, then driving her to school afterward, and somehow making it to work by 11:30 a.m.
I do so much.
All the time.
I need a break.
Then I check my phone and see a text saying our therapist, Ivonne, is out today. I’m disappointed for Olivia, but honestly, I’m relieved for me.
A reprieve.
Just for one day.
I call her nurse, transport comes back to pick Olivia up for school, and I’m back in bed crying.
So I’m writing this in the hope that putting it into words will free up some space in my mind and maybe help me feel a little lighter.
I hope.

05/10/2026

Happy Mother’s Day to all the mums — and especially to my wee mum back home in Scotland. I learned from the very best. My best friend 🩷

And now I have my other wee bestie too… the love of my life, Olivia. The one who made me the woman I was always meant to be 💗💗💗

Happy Mother’s Day to the mums whose hearts are breaking today because part of their heart now lives in heaven.

And a huge Happy Mother’s Day to the mums of children like my Olivia — perfect in their own unique way. For many of us, Mother’s Day is just another day. We don’t get breakfast in bed, cards, or gifts. Therapies and meds don’t stop for Mother’s Day. We just keep on keeping on.

But what we do get is something so special. We get to reflect on how lucky we are to be mums to these incredible little ones. They make us stronger through the hard days, teach us to appreciate the simplest things in life, and make us braver than we ever imagined we’d have to be.

We celebrate the smallest milestones, and our hearts burst with pride over every little achievement. Along the way, we may lose friends, but nurses, doctors, therapists, caseworkers, and fellow special needs mamas become family.

Grateful for every little thing Olivia does. 🩷

03/04/2026

This is the reality of a medical mum’s life. It never stops.
When people say there aren’t enough hours in a day — believe me. Ask a parent of a medically fragile child.
Appointments and therapies start at 8am. Then I drop Olivia at school — late, of course, because medical comes first.
I work from 11:30am until 9pm-ish.
And then… all the other stuff.
There is always something.
The last few days I’ve been working on a new project. We had a meeting Saturday with our iBudget Medicaid Waiver coordinator (who is absolutely lovely), and she needs a full list of every single one of Olivia’s medical appointments from the past year.
Yes — a whole year.
If you know us, you know how packed our weeks are with appointments and therapies… so imagine compiling a year’s worth.
I worked on it until 3am this morning. It’s almost 2am now — and I’m still not done.
But here’s the thing: I wouldn’t have it any other way.
I love working for my girl.

She is my everything. 🩷

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