Sunday: Our child is different and we want to make that normal

When 1News reporter Jessica Roden went for a pregnancy ultrasound, her life changed. Here, she shares what it’s like raising a child with a disability.

I will always remember taking my daughter Penelope to a party at her daycare and feeling a pit in my stomach as I watched the other kids her age walk and run around.

You see, Penelope – or P, as we call her – was born with legs that are different to others. She has two rare conditions, called congenital femoral deficiency and fibular hemimelia. Without doing exact math, she is about one in a million.

Essentially, she is missing some bones and other bones are shorter or bowed. She’s two-and-a-half and can’t walk yet.

Milestones are challenging for lots of parents, but when your child is different they're absolute torture.

My partner Sean and I are sharing our experience of raising a child with a disability with TVNZ’s Sunday programme in the hope it will help other parents like us feel less alone. Hopefully, in a small way, it will normalise disability.

We weren’t planning to get pregnant, but when we did we were over the moon. It was at around 14 weeks in that our world came crashing down.

I had some bleeding and we went for an ultrasound. Immediately we saw the heartbeat and were so relieved. All we were concerned about was whether we’d miscarried.

But the ultrasound went on and on. Eventually they said they couldn’t find some bones in the baby’s legs and they thought there was an issue with the brain.

We didn’t get out of bed for days.

At the start of the pregnancy, I had begun writing in a diary to the baby, who we were calling Peanut. I had planned to give the diary to Peanut when they were older. All of a sudden, I was faced with the very real possibility that they wouldn’t get to read it.

It’s a hard place to be. You naturally want to prepare yourself for the worst but, actually, the hardest thing to do is to hold on to hope.

We were in limbo for a week and a half before we had a more detailed ultrasound. It revealed there was nothing wrong with the baby’s brain, but the legs weren’t forming as expected. We also found out Peanut was a little girl.

We were told she wouldn’t have any function in the legs and would be in a wheelchair for her whole life.

I’ll never forget Sean shrugging and saying something along the lines of “all good”. You see, we could have her. And that was our wildest dreams come true.

For most of Penelope's first year I felt like we were in a bubble. She was pretty much just like every other baby and I think, while I was trying to process things, I tried to avoid talking or thinking about her condition. I couldn't even use the word 'disability’. But, of course, there were reminders.

We’d actually found out, through ultrasounds later in my pregnancy, that she would have use of her legs, but exactly what it would look like wasn't clear.

At six weeks old, we took her to Tim Gregg, an orthopaedic surgeon in Wellington who is Penelope’s specialist and has treated others with these conditions. At birth her feet were very different to other babies – they looked like clubbed feet, but I’m told that was because of the missing fibulas.

For a couple of months, we flew from our home in Nelson to Wellington every Wednesday to get her feet put in casts, to slowly move them into position.

Since the casts were removed, she has been in AFO boots. AFO stands for ankle foot orthosis and the boots help keep her feet in the right place. She’s had two surgeries on her feet which have gone well.

I have always found it quite hard when people ask me about a plan for her treatment because it’s really different for every child with these conditions and the plan evolves over time. Gregg described it best when he said much of medicine is a science – you do x and then you do y – but this is more of an art, and they tend to address one thing at a time.

It means you have to get really comfortable with uncertainty, and what I’ve learnt is that uncertainty is so against human nature. But sometimes life doesn’t give you an option.

Last November Penelope came back from a walk with her grandad Chris (or Nonno) and was in pain. She was clutching her upper left leg saying "sore, sore".

Days rolled by and it didn’t stop – in fact, it probably got worse. She was hysterical at points, writhing in pain, unable to lay still.

This continued for a few hours every day or every couple of days for two months. As well as the episodes of pain, her personality changed a lot, and for a time we lost our happy kid.

The doctors at Nelson Hospital were incredibly kind, but these are rare conditions and every time we went, we got a different answer as to why it was happening.

Eventually it went away and we got our daughter back, but the lack of clarity was unsettling. When we next went to Wellington, Gregg said he wasn’t sure what had caused the pain either and it wasn’t common for this to happen.

He hopes a surgery on her hip later this year will help. In my very simplistic terms, the surgery will reconstruct her hip joint and require cutting the bone. It will make her hips more stable and improve her movement in the long run.

He plans to do her left hip first, and she then will recover for six weeks in an almost full-body cast, before he’ll eventually operate on the right hip. It's daunting, but necessary.

Seeing Penelope in pain was the most challenging time for us since she was born. Now, all I can do as her mum is pray the pain doesn’t come back.

One of the great privileges of sharing our story with Sunday was meeting one of the few families with a child who has the same condition as Penelope.

Lydia Golding is almost 7 years old and has congenital femoral deficiency, also known as proximal femoral fibular deficiencyl in one leg. It essentially means she was born with her left leg significantly shorter than the right.

As soon as I met her mum Lauren, I felt like we’d known each other for a long time.

In future, Penelope could possibly undergo leg lengthening. Gregg says it’s important to understand, regardless, that Penelope will always be much shorter than other kids.

As parents, we have to weigh up what Penelope might want as an adult with the impact further surgeries would have on her childhood. They're heavy decisions and perhaps that was why I connected with Lauren so quickly.

Lydia has already undergone one lengthening surgery with phenomenal results, and has another coming up in September. The family chose to have the surgeries done in the US, which means they’ve had to do a lot of fundraising.

Lauren told me, "I definitely don't think I've taken away her childhood ... I think no matter what you choose, your child will be thankful for what you did. You know, there’s no right or wrong in this journey". If you watch the Sunday story, you’ll see what an impact meeting Lydia and her family had on me. For a long time I tried to avoid thinking about Penelope’s future because I was concerned about what she could and couldn’t do. Seeing Lydia do gymnastics and hearing about her attitude to life really helped put this worried mum's heart at ease.

I am so grateful for the many wonderful aspects of Penelope’s healthcare. The people we’ve encountered in the health system could not be better. Penelope’s physio Alana, for example, sees her once or twice a week and is so invested in her progress.

But the same can’t be said for the system itself.

There were the doctor’s notes from Wellington that didn’t get sent to Nelson, and an MRI from Nelson that didn’t get sent to Wellington. As far as we can tell, the two islands don’t really talk to each other.

We didn’t know Penelope could have had physio for the first 18 months of her life. We didn’t know we were eligible for a child disability allowance. There are countless other examples.

We’re OK – we’ve figured it out and navigated the system. Being a journalist has helped me understand how things work and makes me comfortable advocating for Penelope. But it must be hard for others, especially those who have children with more complicated conditions than Penelope – ones where you can’t just see what’s wrong with an x-ray. It scares me what other families might be going through.

As time has passed, seeing other children do things Penelope can’t has gotten easier. I rarely get the pit in my stomach anymore.

We’re waiting on a date for Penelope’s first hip surgery and in the meantime, we’re just enjoying seeing her grow.

In the last few weeks, she started standing on her own. And when she did it, I couldn’t have cared less that it was later than other kids. I was just so proud.

When we started filming with Sunday, we didn’t know if she’d ever be able to walk, and now it doesn’t seem like she’s far away from it.

I’ve written this story from my perspective but Sean is an equal partner in all that I do. It’s hard for me to put into words how wonderful he has been. Until recently, he was a stay-at-home dad and he never complained once.

He's refused to dwell on the bad or the hard, and kept moving forward no matter what.

Soon Penelope will start asking us questions and while I don’t have all the answers, I’m insanely grateful he’ll be answering them with me.

I don’t speak for all families of those with disabilities nor would I want to. I’m still learning so much, but I suppose I am telling our story to normalise families like mine.

It can be bloody lonely when your path in life looks so different to everyone else's. But in reality, so many of us are different in so many ways, seen and unseen.

As my mum aptly put it recently, "normal" is just a setting on a dishwasher.