One family’s inspirational journey navigating multiple diagnoses

Adriana Paz is mother to four beautiful girls, Isabella, Natalie, Claudia and Emily. She and her family have had more than their fair share of challenges. Born 11 weeks premature, Emily spent her first 70 days in hospital. Isabella has a rare neuromuscular condition and Natalie has autism and other associated developmental delays. Daily life is a struggle for Adriana and her partner, Jason, as they navigate a world of hospital visits, medical appointments and difficult conversations with employers. 

If you find yourself in a similar situation, Adriana wants you to know you are not alone. There is help at hand. You are strong and you can keep going. Here is her inspirational story.

Can you tell us about your career journey so far?
I have worked as a legal secretary for the last 18 years now. I’ve worked for some top-tier, medium-tier and small firms, predominantly in litigation, commercial property, wills and estates and employment law, to name a few.

Your family has faced some frightening challenges in the past few years. While you were visiting your daughter Emily in the neonatal intensive care unit (NICU) your eldest daughter, Isabella, suffered her first paralysis episode. Can you tell us about your experience?
It was 6.29AM on 19 July 2016 when I received a phone call from my mother to tell me that Isabella had her first (what we now know to be) paralysis episode. The night before, Jason and I had had a late-night meeting with the medical team looking after Emily in the NICU. It was the middle of winter, it was cold and raining, and we thought it would be best if our three older girls stayed at their grandparents’ home while we navigated the long hospital visits. 

I have never seen Jason jump out of bed so quickly. We both did. Luckily my parents lived close by and we rushed over to see what exactly was happening with Isabella. She was conscious, alert, and explained what she was feeling. Immediately I thought the worst. I thought that my daughter wouldn’t walk again. Jason, as always, was calm and began checking for any obvious rashes, bites, or anything to give us a clue as to what was causing this paralysis while we waited for the ambulance to arrive. Isabella looked well, except her arms and legs just wouldn’t move. 

That night, doctors were still trying to figure out what was wrong. They ran all sorts of tests. After two days of investigating, she was diagnosed as having conversion disorder (unexplained neurological symptoms). It didn’t end there. 

Being told that Isabella has a rare neuromuscular condition must have been extremely confronting. This came just two months before your beautiful daughter Natalie received her diagnosis. How did you and your partner adjust to the realities of what it meant for your family?
It was such a long wait for Isabella’s diagnosis and I was, in a way, expecting the worst. Since her first episode in 2016, her episodes had increased in frequency throughout 2017. Both the neurologist and I somehow felt that it was more than just conversion disorder. We received Isabella’s official diagnosis in October 2017 after waiting three months for genetic testing results. It was determined that she has a very rare neuromuscular condition called hypokalemic periodic paralysis and conversion disorder

Less than a month later, we received assessment results that showed that Natalie has autism, along with ADHD/ODD, severe speech impairment, obstructive sleep apnea amongst other things. 

We had been told by Natalie’s teacher towards the end of the second school term in 2017 that she noticed Natalie was having some difficulties in class with paying attention, following instructions and understanding what was being said. Of course I questioned why it took so long for the school to raise this concern with me. 

Jason and I decided to make our own checklist and tick things off as we went. We took Natalie to the dentist, optometrist, an audiologist and a psychologist. As we saw each of the allied health services, we started to get bad news. I couldn’t believe what I was hearing. 

When Natalie was attending four-year-old kindergarten, her educators hadn’t mentioned any concerns with her development. Nor did the maternal health nurse. Before Natalie started school I did everything that I needed to do such as immunisations, checking her teeth, hearing and eyes. Everything was fine. However, from grade one everything went downhill.

The unpredictable and rare nature of Isabella’s condition adds complexity to your family duties. What are some of the unique challenges for parents who are juggling work and carer commitments?
Isabella’s condition is quite rare—it affects one in 100,000. So far in Australia, I know of probably around seven people (including my daughter) with her condition. 

Most of her paralysis episodes occur while she is asleep. When this happens, it is usually about 2AM or 3AM when Jason and I start to make a plan as we closely monitor her paralysis. During this time, I get up, shower and then leave clothes out for my other kids for when they wake. I usually go in the ambulance with Isabella to the hospital where I stay there with her all day and sometimes overnight. Before I go though, I need to deal with Natalie’s separation anxiety. Natalie doesn’t like to be away from me for long periods. The challenging part is that we don’t always have someone to look after the girls and that means Jason must stay home. 

Being at work is very hard. It’s difficult to focus knowing that an episode can come at any time. In the beginning, Isabella’s episodes were mainly at night, but over the last two years we have also seen quite a few daytime episodes. 

A major challenge is putting yourself in a vulnerable situation whereby you must explain to your employer the difficulties you’re facing with your child’s health and ask for flexibility. There comes a point when, if your child is ill often and you are missing out on work, your employer may need to re-evaluate your position. 

This happened to Jason in 2016 when he was in a full-time warehousing role. When Emily was born and I was still recovering from my C-section (and couldn’t drive for six weeks), Jason was at first provided with some flexibility but that all ended shortly thereafter. His employer was no longer wanting to offer flexibility and his job was on the line. This caused significant stress on our family. 

I remember the difficulties he faced from lack of sleep, concern about Emily’s health, etc. One day while he was at work, I had to call for an ambulance because Emily was having difficulties breathing and she was not looking well. By the time Jason got home he was greeted by two ambulance vehicles outside our house. It turned out that Emily had caught a cold that put her in hospital for three days.

Managing Isabella and Natalie’s needs on top of your day-to-day family requirements must be incredibly challenging at times.
Life is certainly hard in my household. Every day brings a different challenge. 

There are some good days but unfortunately there are more bad than good. The difficulties for us started with Emily’s premature birth and then things kept getting worse. There were moments when we couldn’t see the light at the end of the tunnel. 

Jason and my relationship has been challenging, in particular because he is Isabella and Natalie’s stepfather. He accepts the girls for who they are and he loves them as if they were his own. We have two younger daughters together, Claudia and Emily.

What advice would you have for other parents facing a similar situation?
That’s a hard one. I would say you just have to keep on going. Have a professional support person, whether it be a counsellor or psychologist. Days will be tough. You will be challenged at work, and there will be days when by the time you get home you just can’t take any more. 

How do you and your partner manage the work-life juggle in a practical sense?
We have to communicate lots during the day whether it’s by text or long phone calls in our lunch hour. Jason is a stay-at-home dad at the moment so he does the school and childcare run. He takes the older girls to their medical appointments, chases reports, makes appointments, pays medical bills. On top of that, he takes on the three chores that I leave him to do before I get home: make beds, wash the breakfast dishes and put a load of washing on.

He is doing the best he can, and when I don’t have many words to say, I repay him with hugs. 

What is your way of coping when you find yourself frustrated or overwhelmed?
Taking time out for ourselves just doesn’t exist. On very rare occasions, Jason and I might go to our local café, have a hot drink, enjoy some alone time and de-stress. Or sometimes we might be in so much physical pain that we need to go and have a massage. 

If I wasn’t working, both he and I would have time to look after ourselves, but the reality is, we don’t. Our bodies are aching, our emotions and stresses are at an all-time high. When I’m at work, I’m thinking about all of the things that need to be done and it takes the enjoyment out of working.

How has having children changed you career-wise?
I am less ambitious now. My experiences over the last three years have caused me to want to switch industries and focus on helping other families who are going through similar situations to those mine has faced. My focus now is understanding what doctors say, researching what help there is out there and reaching out to people with the same conditions as my kids. 

What is one dream you have that you have yet to accomplish?
In terms of career accomplishment, I don’t have any. 

In terms of personal accomplishment, I have always wanted to travel. It is currently out of the question—unless we had a full-time nanny or babysitter with us. In the future, travelling overseas will definitely be challenging, especially for Isabella because of the difficulties with her medical condition and travel insurance.

You’re looking to establish events for working parents who also identify as carers to come together to share experiences and advice. Can you tell us a little more about your plans?
I’m focused on educating parents who have been through similar life experiences as us: helping parents navigate through systems such as the National Disability Insurance Scheme (NDIS), and offering parents and carers tips on what to do and what not to do.

Jason also has a dream to set up a men’s expo. Think cars, motorbikes, pool tables, tools, gardens, sheds, holidays, man caves, etc. He has some pretty amazing ideas and he has the passion, but he doesn’t have the time to make his dream come true. We did hire a small team in 2017 to help us start the business but it didn’t work out—that’s when all of the diagnoses started. We will continue with this again. Watch this space!

Favourite time of the day is…bedtime. 

I’m happiest when…everyone at home is calm and healthy.

I’m addicted to…V energy drinks.

Favourite wardrobe staple for work…having pretty dresses in my wardrobe. I love a great dress.

Favourite wardrobe staple for weekend…my The North Face puffer vest and a scarf, and my prescription sunglasses. 

Photos: Adriana with daughters Isabella (left) and Emily (right).

Discover more Real Stories from our Circle In community HERE.

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