"My perfect, chatty little boy was on his way. Little did we know that three weeks of high fever would strip away his words, his eye contact, his recognition of his baby brother - everything that made him 'him.' The doctors missed it. I knew something was catastrophically wrong, but no one would listen. By the time we got answers, my verbal, milestone-hitting toddler had vanished into silence. But in that silence, we discovered that love truly needs no words."
In this deeply moving episode of The Grit Reapers, we sit down with Jacqui Miller, author of "Hey Jude," who shares her heart-wrenching yet inspiring journey of raising a son with severe apraxia while simultaneously caring for her mother with early-onset Alzheimer's. Jacqui’s story reveals the devastating moment when a seemingly simple childhood illness changed their family forever.
What You'll Hear:
🩷 The terrifying three weeks when doctors dismissed a mother's instinct that something was desperately wrong
🩷 How Jacqui fought through the medical system to get answers for her non-verbal son
🩷 The life-changing discovery of Touch Chat technology that became Jude's voice
🩷 Managing the heartbreak of losing two relationships to illness - her son's speech and her mother's memory
🩷 The brutal honesty about how special needs parenting tests even the strongest marriages
🩷 How Jacqui and her husband Wayne created complementary roles instead of competing expectations
🩷 The unexpected friendship between her son Jude and her mother with Alzheimer's - two minds that didn't judge each other
Jacqui’s story demonstrates how a crisis can reveal not just what we're capable of surviving, but how we can find purpose and meaning in the most unexpected places.
Whether you're navigating your own family crisis, advocating for a loved one in the medical system, or simply need a reminder of the extraordinary strength that lives within ordinary people, this episode is a reminder about resilience, unconditional love, and the power of refusing to give up on the people we cherish most.
"My perfect, chatty little boy was on his way. Little did we know that three weeks of high fever would strip away his words, his eye contact, his recognition of his baby brother - everything that made him 'him.' The doctors missed it. I knew something was catastrophically wrong, but no one would listen. By the time we got answers, my verbal, milestone-hitting toddler had vanished into silence. But in that silence, we discovered that love truly needs no words."
In this deeply moving episode of The Grit Reapers, we sit down with Jacqui Miller, author of "Hey Jude," who shares her heart-wrenching yet inspiring journey of raising a son with severe apraxia while simultaneously caring for her mother with early-onset Alzheimer's. Jacqui’s story reveals the devastating moment when a seemingly simple childhood illness changed their family forever.
What You'll Hear:
🩷 The terrifying three weeks when doctors dismissed a mother's instinct that something was desperately wrong
🩷 How Jacqui fought through the medical system to get answers for her non-verbal son
🩷 The life-changing discovery of Touch Chat technology that became Jude's voice
🩷 Managing the heartbreak of losing two relationships to illness - her son's speech and her mother's memory
🩷 The brutal honesty about how special needs parenting tests even the strongest marriages
🩷 How Jacqui and her husband Wayne created complementary roles instead of competing expectations
🩷 The unexpected friendship between her son Jude and her mother with Alzheimer's - two minds that didn't judge each other
Jacqui’s story demonstrates how a crisis can reveal not just what we're capable of surviving, but how we can find purpose and meaning in the most unexpected places.
Whether you're navigating your own family crisis, advocating for a loved one in the medical system, or simply need a reminder of the extraordinary strength that lives within ordinary people, this episode is a reminder about resilience, unconditional love, and the power of refusing to give up on the people we cherish most.
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Read Episode Transcript
SPEAKER 1 - Candice: [00:00.3]
Welcome to the Grit Reapers, the NoBS podcast for online entrepreneurs.
SPEAKER 2 - Gail: [00:04.8]
I'm Gail.
SPEAKER 1 - Candice: [00:05.6]
And I'm Candice. And we're here to cut through the crap and give you the real truth about what it really takes to be successful online.
SPEAKER 2 - Gail: [00:12.8]
Let's get down to business.
SPEAKER 1 - Candice: [00:16.2]
Welcome back, everybody, to another episode of the Grit Reapers.
SPEAKER 2 - Gail: [00:19.6]
We are.
SPEAKER 1 - Candice: [00:20.3]
This is actually a special episode called the Human side of Grit. If you've listened to any of these episodes before, you'll know we have the most extraordinary, ordinary people, everyday people that we know or we've heard about that have had an exceptional experience happen to them in their life.
SPEAKER 1 - Candice: [00:40.2]
And they've shown incredible, like, strength of character or displayed some characteristics that are just really inspiring. And today we have one of these guests with us, Jacqui Miller. Welcome, Jax.
SPEAKER 3 - Jacqui: [00:54.8]
Thank you so much. Hi, everybody.
SPEAKER 2 - Gail: [00:57.4]
Hi, Jacqui.
SPEAKER 3 - Jacqui: [00:58.7]
Hi. Hi, girl. Thank you. Thank you.
SPEAKER 1 - Candice: [01:01.4]
Lovely. Lovely to have you with us, Jack. So I've. I've known Jacqui pretty much since I was a little girl, spending many holidays, in Umlanger, which is for those of you who do not live in South Africa. It is a, like a.
SPEAKER 1 - Candice: [01:17.9]
Like a kind of holiday town in KwaZulu Natal, one of our provinces by the coast. Many, many holidays spent with Jacqui and her family there. So I've known Jacqui for a very long time, and Jacqui has a. An incredible story, that she's agreed to come and share with us and our listeners.
SPEAKER 1 - Candice: [01:39.6]
And really, I don't. I. I don't want to give anything away, Jax. I think I'm going to hand over the floor to you and kind of guide us through this experience you've had. And we'll kind of interject if we have any questions or we want to hear a little more about something you're speaking about.
SPEAKER 1 - Candice: [01:55.7]
But, brace yourselves, guys. It is an incredible story about a beautiful family and an unbelievable mother. So over to you, Jax.
SPEAKER 3 - Jacqui: [02:06.3]
So thanks for the introduction, guys. Thanks, Cands. And, I appreciate you having me on your beautiful show, guys. I'm Jacqui Miller. I'm the author of a book called hey, Jude. I'm a mommy of two boys and the wife of the best man on earth.
SPEAKER 3 - Jacqui: [02:24.7]
In my book, I share a deeply personal journey of raising my son, Jude. He has special needs and also caring for my mother who had early onset Alzheimer's. These experiences have been the greatest teachers in my life.
SPEAKER 3 - Jacqui: [02:41.1]
My son Jude is not only the vital part of my life story, but he's also the heart of my book. The book is more than words on paper to me. It's the journey through ups and downs and the testament and the power of kindness and tolerance.
SPEAKER 3 - Jacqui: [02:57.2]
We live in a world where everybody is fighting their own battles. Some are visible, many of which are invisible. My journey with Jude has taught me that behind every face in a crowd, there's A story untold and a struggle unseen in hey Jude.
SPEAKER 3 - Jacqui: [03:16.2]
I've, tried to encapsulate not just our personal experience, but the truth, the universal truth that empathy and understanding can be life changing. Life has thrown us many curveballs. But with Jude, every day is a lesson in patience and love and resilience.
SPEAKER 3 - Jacqui: [03:35.9]
My mother's illness also, while very heart wrenching, has taught me about the fragility of memory and the enduring power of love. Judy was born in 2013. He was the happiest little bubba.
SPEAKER 3 - Jacqui: [03:51.4]
He really didn't love to sleep, still doesn't to this day. He achieved all his milestones on point. He sat and he stood, he babbled, he crawled, he walked on time. He spoke a few words really beautifully.
SPEAKER 3 - Jacqui: [04:07.0]
Although to my horror it was Dada and not Mama. Really?
SPEAKER 1 - Candice: [04:11.8]
Well, well, you did say you are married to the best man on earth, so it shouldn't be surprising that his first words were Dada.
SPEAKER 3 - Jacqui: [04:23.7]
I thought he was an absolute genius, which all us mommies do, especially with our first. Right. He knew every animal sound. He knew to call most family members by names. His pronunciation wasn't really clear, but it was definitely there.
SPEAKER 3 - Jacqui: [04:40.4]
In November, 2014, Jude was around 21 months. He spiked a fever. We gave him meds, but just the fever would not break. We went to our pediatrician to check on him. He was lethargic. He wasn't sleeping, stopped eating, barely drank.
SPEAKER 3 - Jacqui: [04:57.7]
It was just a really stressful time for us. We were going back and forth to our pediatrician, just wasn't getting better. After about two weeks, the pediatrician was away and we went to a locomote. He said that Jude had something called Roseola virus.
SPEAKER 3 - Jacqui: [05:13.9]
Great. We were relieved, something to work with until a few days later his temperature sparked again. We were finally hospitalised by a pediatrician a few days later, after three weeks of Jude being really, really ill.
SPEAKER 3 - Jacqui: [05:29.6]
The next eight days were the most horrific days. I was heavily pregnant actually at the time with my second. Jude was pricked and he was prodded in hospital, totally petrified. He had no veins and also like heavily dehydrated. So to draw blood was a complete nightmare.
SPEAKER 3 - Jacqui: [05:47.3]
He was just so, so traumatized. A few days into like our hospital stay, our doctor wasn't really available. So I happened to know a doctor at the hospital and I said to him, there's something really not right.
SPEAKER 3 - Jacqui: [06:05.3]
I just. I, need you to come check on Jude. I need your help, you know, you know, as your Like as a mother, your instinct, you know, there's just something still not right. Yeah, I know there's something missing with Jude. I just feel it. So he actually checked the file and he shouted for one of the nurses and said, oh, sorry.
SPEAKER 3 - Jacqui: [06:28.2]
He said to the nurses straight away, he said, has Jude had an immunoglobulin drug? And she said, no. She said, no, he hasn't. He said, get the doctor on the phone immediately. He shouted. He said, Jude's platelet counts were 1, had reached 1 million. And a child at Jude's age.
SPEAKER 3 - Jacqui: [06:44.9]
The platelets were meant to be between 150 and 450,000. And he said, jude needs to be put on an immunoglobulin drip immediately. And in fact, it was like a week too late. Anyway, we were then sent to a pediatric cardiologist because he thought that Jude had something called Kawasaki disease.
SPEAKER 3 - Jacqui: [07:06.5]
And that was the start to absolutely everything for us. Anyway, this was around the December, now, 2014. We were meant to go on holiday. I was really, really petrified. I didn't want to leave the doctor.
SPEAKER 3 - Jacqui: [07:23.4]
I didn't want to leave our house in case he got sick again. We went back to our pediatrician and he said, go away. Ca might be like the best thing for all of you. Get chewed away. It will be great. Anyway, we went. We decided, let's go. He loves the water. Let's go.
SPEAKER 3 - Jacqui: [07:39.0]
We went. He was subdued, he hardly ate. And at the back of my mind, I knew, I knew there was something not right. Anyway, I emailed the doctor from holiday. I said, he's still not right. Doctor said, give it time. Jude will come around. Now. We.
SPEAKER 3 - Jacqui: [07:54.3]
In January 2015, Jude turned two, started school. I actually worked at a school. I was a teacher at a nursery school. I was there for 15 years. I was in my element. Happy place. Jude was finally there. It was amazing.
SPEAKER 3 - Jacqui: [08:09.5]
Although I still had a feeling he was not right. But he started school and I kept on saying to my husband, he's not calling me as much. There's no mama. He used to always say, uppie, you know, pick me up now once in a while, but hardly, not anymore.
SPEAKER 3 - Jacqui: [08:26.5]
Like, it was. There were some words, but not like he used to. Like things were just fading away. It just. He just wasn't that dude anymore. I would watch him carefully. I would panic, I would sweat, I would stress, but I just would not say anything to anyone.
SPEAKER 3 - Jacqui: [08:42.9]
I would keep it to myself. Anyway. My colleague, who was also a very close friend of mine, was Jude's teacher at the time at that school. Jude used to call her by her name, but that also slowly would stop, and he would pull on her if he wanted something. He loved school.
SPEAKER 3 - Jacqui: [09:00.3]
Though he was happy, he never cried, went happily in the morning. He participated here and there. He played alongside others. But at 2 years old, it's appropriate, so it wasn't a worry. It was all fine. Anyway, a few months into the school year, I was called into a meeting by my principal, the principal of the school, who was also, you know, my principal, as I worked there.
SPEAKER 3 - Jacqui: [09:22.5]
She said, I'm very worried about you tearing. I was like, nonsense. Well, there's nothing wrong with his hearing. They said, you can slam a door, you can pull out a chair. He does not budge. You can bang on the window. Anyway, I said, watch this. I walked into the class one day.
SPEAKER 3 - Jacqui: [09:39.9]
I, said, dude, you want a piece? I walked in quietly. I said, would you like a piece of chocolate? Instantly turned around. No issue. But he was not fine. I knew he was not fine. His new brother was born. He didn't acknowledge him.
SPEAKER 3 - Jacqui: [09:55.7]
He watched Barney episodes on repeat. He lined up his toys. He stopped saying all his animal sounds. He stopped actually looking at us in the eyes. And, you know, your first child, you're obsessed. You take pictures all the time. You pull them, you look. He just stopped all of that.
SPEAKER 3 - Jacqui: [10:12.3]
He was lost, and he was lost in, like, his own little world. And I needed answers, and I had to get my little boy back. He just. He just wasn't that same little boy anymore. We realized we needed to see what was going on with Jude in. In his brain.
SPEAKER 3 - Jacqui: [10:27.8]
And we just. We had to get answers. So we were fortunate enough to get him into a pediatric neurologist, who we heard was excellent. We had so many tests done. We had MRI scans, EEGs, bloods, you name it.
SPEAKER 3 - Jacqui: [10:43.7]
The doctors and specialists were convinced that Jude, in fact, got, encephalitis when he was sick those few weeks back, those few months back, and not Kawasaki disease, as the doctor thought. In 2016, I came to realize that things were coming difficult, with Jude at my school where I taught.
SPEAKER 3 - Jacqui: [11:04.1]
He was struggling to manage. It broke my heart. But after much research and, looking into everything, we decided to move into a speech and a hearing. So school, it was a fantastic school. It really was.
SPEAKER 3 - Jacqui: [11:19.6]
I was thrilled to be there. There were therapists for him. It was wonderful. But it still wasn't the school where I wanted him to be at. But we had to do what we had to do. We were introduced to an entire new world. We had to go for hearing tests again. This time a More complicated one wasn't as simple because Jude wouldn't stay still.
SPEAKER 3 - Jacqui: [11:38.9]
He was screaming and chatting. But thank goodness we did a test. He was not deaf. But why was he not responding to things? Why was he not engaging? Jude loved his school. He was happy, went every morning, no farting.
SPEAKER 3 - Jacqui: [11:54.7]
It was great. Anyway, the next school, we were called into a parent teacher interview, into a meeting. This one was a real tough one. They said to us, Jude is settled, judish, happy. He's trying the hardest ever. But we feel this is not the right school for him.
SPEAKER 3 - Jacqui: [12:12.6]
We're like, what do you mean? They said, he cannot sit in a ring with other children. He plays alongside them. He's far away. He's not retaining things. We feel that Jude might be on the spectrum. They were very confused and we were absolutely shattered.
SPEAKER 3 - Jacqui: [12:31.4]
And so our journey continued. The decision was made that Jude required an intense one on one teaching. So in January 2017, he started at another school. This was a special needs school for children on the autism spectrum.
SPEAKER 3 - Jacqui: [12:47.1]
It was a hard one indeed. It was a one on one setting in a completely new world for us. I felt very alone and confused and totally lost. It did turn out to be the right move in school. School worked for us. At that time in our lives, Jude had five facilitators who worked for us.
SPEAKER 3 - Jacqui: [13:04.7]
They were our superheroes. They really did become our family support. We worked on a program called pics. It stands for Picture Exchange Communication System. It was amazing. And we were also, introduced to an app on his iPad.
SPEAKER 3 - Jacqui: [13:21.6]
It was called Touch Chat, which has been a lifesaver. It's designed for individuals on autism spectrum, for down syndrome, for L IS patients, for apraxia patients, for stroke patients. And Touch Chat definitely opened up our eyes.
SPEAKER 3 - Jacqui: [13:37.3]
It's. It literally helped us and saved our lives. It was.
SPEAKER 1 - Candice: [13:41.5]
Can you explain to us like, like, how does it work? Like, what do they do?
SPEAKER 3 - Jacqui: [13:47.1]
Yes. So what it is, it's, it's, it's. It literally is little pictures, little icons. And in the picture, so you can get little. So for example, there will be objects and in the group of objects there will be food, there will be Jude's stuff.
SPEAKER 3 - Jacqui: [14:03.3]
There will be an for example, so in food, there will be every item of food that Jude has in his world. Then there will be places. So it will be from the kitchen, school, home, all of that type of stuff. And when you, click on that item, it will talk for Jude.
SPEAKER 1 - Candice: [14:22.8]
Oh, wow.
SPEAKER 3 - Jacqui: [14:23.7]
This will picture and I can talk right. Then what happens is you go from that when you get more involved in it. It can make up sentences for you. It literally is everything. It can. It tells you sleep. So it will say now Jude goes on today and it says, I want to bath, I want to sleep, run with me, go out.
SPEAKER 3 - Jacqui: [14:43.0]
I want to swim, tickle me. I want cream, my tummy sore. It's got emotions, physical states. You name it, anything. Everything in his world is on there. It's his voice.
SPEAKER 1 - Candice: [14:57.7]
Right.
SPEAKER 3 - Jacqui: [14:59.5]
It literally has saved our world. You name it, you can add anything on there. Anything.
SPEAKER 1 - Candice: [15:04.8]
And Jack's, by this stage, was Jude completely non verbal. So had he lost everything like you said, it was fading slowly, but by this point, was he completely non verbal?
SPEAKER 3 - Jacqui: [15:17.5]
Yes. So. Yes. So it's so he, he, he's still. Now he can say mama and he can say ball and he says go. So but otherwise. Yes, otherwise. So. Yeah, so he literally lost. Absolutely.
SPEAKER 1 - Candice: [15:33.3]
So. So in other words, this app became like you saying. It really did become his voice. He was able to communicate with you again?
SPEAKER 3 - Jacqui: [15:41.3]
Yes, totally. He communicates on it. Yes. And that's his. It's. It is his voice. He doesn't have a voice.
SPEAKER 1 - Candice: [15:47.7]
And, and when you talk to him, Jacks, do you use your voice or do you also use.
SPEAKER 3 - Jacqui: [15:53.5]
Speak normally and. Yes, and he also uses gestures and, and we still take pick cards. Sometimes I don't slip the iPad out with me, I take a pic. Also little cards. I've got little cards and keyrings. And I'm also coming up with a whole new. Which I will, when it comes out, I'm making stuff.
SPEAKER 3 - Jacqui: [16:12.0]
It's also helps stroke patients. And a whole lot of it's little keyrings that parents can take with them. And not everybody also can just have an iPad. We feel blessed that we, you know, but these little cards also are amazing because, it's the pick cards that people use.
SPEAKER 3 - Jacqui: [16:29.5]
Before we had the iPad, we had pictures around the house of water, toothbrush, a tummy if his tummy was sore, you know, that he could at least express what he wanted. But I also get Jude without the iPad. We have, you know, an unspoken language you know him for.
SPEAKER 3 - Jacqui: [16:48.7]
I mean, he's 12 now, so. And he also uses gestures, he points and he'll go to the toilet. And for me to know if I'm in the kitchen and he's sitting in the TV room and he wants to tell me he's in the toilet, he slams the door hard.
SPEAKER 1 - Candice: [17:02.1]
Oh, I see. Okay. Yes, yes.
SPEAKER 3 - Jacqui: [17:05.6]
Spoken, you know.
SPEAKER 1 - Candice: [17:06.9]
Yes, yes.
SPEAKER 3 - Jacqui: [17:08.3]
But he needs to know he's lazy. He will be lazy to go and fetch the iPad to tell me once something and I'm like, no, no, no. You get your iPad and tell me what you want. You need to use your voice.
SPEAKER 1 - Candice: [17:18.4]
Right?
SPEAKER 3 - Jacqui: [17:18.8]
Amazing. But it is amazing. And thank God for it.
SPEAKER 1 - Candice: [17:22.9]
Right?
SPEAKER 3 - Jacqui: [17:24.2]
What he knows is learned on their colors, numbers, letters. He learns on there. His whole life is on there.
SPEAKER 1 - Candice: [17:29.8]
Right? Amazing. Okay, yes.
SPEAKER 3 - Jacqui: [17:34.1]
And so Jude communicates mostly with sounds and squirrels and screams. As I said, ha, ba, mama, ball and up and go. That's basically, that's the only, the only words he can say. He points to a lot of things that brings stuff to us.
SPEAKER 3 - Jacqui: [17:49.4]
When he wants something, he sometimes places his hands on ours and guards them in a certain way. He does touch his lips and sometimes uses his hands to turn our faces if he wants us to see something. If we're busy, like on our cell phones, which is the worst thing ever.
SPEAKER 3 - Jacqui: [18:05.0]
And if he really wants to get our attention, he will pull me or pull my hand or my face. And also at a stage we were told that Jude needed protein because he stopped eating. When he got sick, he stopped eating completely. And also that he needs a gluten free diet and he needs to go off dairy.
SPEAKER 3 - Jacqui: [18:23.5]
And we were like, are you crazy? That's all the boy eats. But they said, you want him to get better, you have to listen to us. And we did. And that's where our food journey began. We did an, intense, sorry, feeding program for a year. It was run by the most brilliant lady.
SPEAKER 3 - Jacqui: [18:40.8]
And after many tears and lots of cooking, we succeeded. And today Jude is the best eater in the Miller house. Literally, he eats the most brilliant food ever. He can teach us all a single two. And immediately we saw a switch and a change in his brain and his eye contact became better.
SPEAKER 3 - Jacqui: [18:59.3]
Cutting sugar, dairy. And that his eye contact came better and he was able to do more on the iPad. So I definitely do believe in changing kids diet, whoever they are. And at time, I must say, life really does seem like a battle.
SPEAKER 3 - Jacqui: [19:17.6]
And, nothing with Jude is easy. Nothing at all. Slowly but surely, the facilitators have helped Jude and us as a family to adapt our new world. And we had no choice. We had to do it. We also consulted with doctors all over the world.
SPEAKER 3 - Jacqui: [19:34.5]
We've been put onto supplements and different medications. You name it, we have tried it. Jude is now 12. Every day brings a new challenge with him. There are days that are so rewarding, but There are days that are also completely exhausting.
SPEAKER 3 - Jacqui: [19:50.4]
But do we love him? Wow, we really love him. I don't think there's a 12 year old kid who gets kissed and hugged and loved like Jude. I don't think other 12 year olds will let you. His family and our friends and everyone who knows him just adore him.
SPEAKER 3 - Jacqui: [20:05.6]
He's a mommy's boy and follows me everywhere. Him and his dad played the hugging and squeeze game for hours and they lie under the blanket and hide. I also don't know which 12 year old kid will allow that. He's bright. He has so much love to give. His smile literally melts everybody's heart.
SPEAKER 3 - Jacqui: [20:23.5]
He's a warm, loving nature. He loves to be around people, especially kids. He loves to go on outings. He loves swimming and bouncing balls. Those are his thing. His younger brother Tay is his biggest teacher. He's amazing. He's patient with him and will always have his back.
SPEAKER 3 - Jacqui: [20:40.7]
I know things could be worse and we are blessed in so many ways, but it's very hard and if I could change things, I would do so in a heartbeat. We really want him to talk and have friends, go to parties. I really want more than anything for him to tell me when he has a nightmare or a sore tummy, is scared or excited, or just to say I love you out loud.
SPEAKER 3 - Jacqui: [21:04.0]
What I have learned from Jude is that the other side of struggle is always strength. I have learned that we are not born to fit in little boxes and to belong. We are born with a purpose. And once we find ours, life does become clearer. I learned that you cannot control life, a situation, or a challenge, but you can change how you deal with things.
SPEAKER 3 - Jacqui: [21:26.0]
I've, tried to stop worrying about the future and to try to when it comes. My biggest lesson in life is that love needs no words.
SPEAKER 2 - Gail: [21:38.8]
Wow, Jacqui. That I've just been sitting here, like, completely, completely spellbound. Because, yeah, I mean, that is just such a story. And so, Jacqui, do you think. So did that whatever it was, the Kawasaki or the encephalitis, do you think that that is what caused.
SPEAKER 2 - Gail: [22:03.3]
Caused everything? Or do you think it was a coincidence? And you know, I don't understand. I don't know much about autism. I don't know how autism works, but do you think there was a correlation?
SPEAKER 3 - Jacqui: [22:19.4]
So we don't actually know? All I know is that Jude was 1 million percent fine. He was born fine. He was 100. He didn't have all these traits and these things. And you know, Jude actually is.
SPEAKER 3 - Jacqui: [22:36.4]
He's never Actually had an autism diagnosis. Not like that makes a difference at all. And the spectrum is huge.
SPEAKER 2 - Gail: [22:42.7]
Yeah.
SPEAKER 3 - Jacqui: [22:43.0]
He actually has been diagnosed with apraxia of speech and aprate. I don't know if you know aware of apraxia, but apraxia is that connection in the brain. So where your brain and your mouth are connected and that connection, Jude's is lost. So you know, your brain tells you to pick up the cup and have a sip.
SPEAKER 3 - Jacqui: [23:02.2]
He doesn't have that. That connection is lost. So he has to have intense therapy all the time and just work on that all the time. His connection, he doesn't have that connection. That severe apraxia of speech and thank goodness, you know, he has skills and he's able to learn and to.
SPEAKER 3 - Jacqui: [23:21.9]
I mean as I say, he has to have repetition and repetition all the time of stuff. But he spoke, he ate, he achieved every single milestone where a lot of the kids don't, you know, a day, you know.
SPEAKER 3 - Jacqui: [23:39.6]
Do we know? I don't. You know, we don't. We will never know. I have no clue. You know, but what the neurologist and the, the car, the pediatric cardiologist who we had to go to when they did think it was Kawasaki because Kawasaki affects the heart and the arteries which thank God it wasn't in the.
SPEAKER 3 - Jacqui: [23:59.0]
In Kawasaki because his heart was perfect. But they did say to us that he definitely with high fevers and that for so long he should have been put on an immunoglobulin drip.
SPEAKER 2 - Gail: [24:11.6]
Sounds like it. Yeah.
SPEAKER 3 - Jacqui: [24:13.4]
Yeah. Earlier because he really. And as a first time parent though you guided by your doctor.
SPEAKER 1 - Candice: [24:19.1]
Yeah, yeah, exactly.
SPEAKER 3 - Jacqui: [24:21.4]
Go home and give him cal pole. Well we did. And then eventually when I went back to the peed that seventh time, I'm like, I'm not leaving here. You. He hasn't slept, eaten or ate in. I mean drunk in, in days.
SPEAKER 3 - Jacqui: [24:38.6]
You have to do something. I'm not leaving hospital. And thank goodness I had called this doctor who we knew to say look into this file because as a mother, you know, there is something, Even though it was my first child.
SPEAKER 1 - Candice: [24:51.3]
Yeah.
SPEAKER 3 - Jacqui: [24:52.2]
We will never know girl we don't know. Yeah, we'll never know. And this was obviously meant to happen and part of our journey. But it kills me because he was okay.
SPEAKER 2 - Gail: [25:02.8]
Yeah. Oh no, I get that 100 but we'll never know.
SPEAKER 3 - Jacqui: [25:07.4]
You know. But he doesn't talk still. He is 12 and every school we went to they said it will be okay. It will come along, he will get there. But he doesn't talk. And he never. And I'm not saying he never will, because I will always have hope and I will never give up. And, boy, my husband and I thought and fight for him.
SPEAKER 3 - Jacqui: [25:24.2]
And we go to every poor. We have been to doctors overseas, and we have spoken and we have fought and we have taken medicine, if you know what we have given this poor child at 12. Boy. But we will do whatever we can, and we still will. But, yeah, it's hard. Yeah.
SPEAKER 1 - Candice: [25:39.8]
Yeah. Jax. I mean, I've heard. I heard Jacqui speak. I think it was at last year's Women's Day event. Yes. And I actually told Gail about this day that I went to and all these women I heard. So I've heard, bits of the story before.
SPEAKER 1 - Candice: [26:00.7]
Jax, if you feel comfortable to share with us, we've heard a lot, like, a lot of the. The kind of, like the. The chronological order of things and how it happened and.
SPEAKER 3 - Jacqui: [26:13.1]
And, But I'm sure for you
SPEAKER 1 - Candice: [26:14.7]
and your husband, Wayne, you. You guys have also had your own journey through it. Right? And, How. How do you think you've managed? I mean, firstly, it's just quite incredible that, you know, often these kinds of things can destroy marriages, and it's.
SPEAKER 1 - Candice: [26:35.4]
It's. It's challenging. Right. So what do you think? You and Wayne, if you reflect on the journey, what do you think has helped you manage and deal with this experience that happened to you that was really out of your control?
SPEAKER 1 - Candice: [26:54.0]
I mean, it's, you know, do you have any thoughts on that, Jax? I mean, you're a teacher. Okay? So the first thing I thought was, I mean, how lucky is this boy that his mom is actually a teacher? Right? So, you know, to sit with him.
SPEAKER 3 - Jacqui: [27:11.8]
It's so funny. No, because, first of all, he won't allow me to work with him. I can't do a thing with him. He, like, pushes me away. I can't. Secondly, when this happened, I was like, I don't know what to do. I can't do anything with him.
SPEAKER 3 - Jacqui: [27:27.8]
This is not what I signed up for. This is like, I'm lost. It's like I had. We had to call in people because no, k. Like, this is. This is. I, I studied to be an early pre primary school teacher for your.
SPEAKER 3 - Jacqui: [27:48.4]
Your typical children. I didn't sign up for this. And funny is, I phoned his therapist all the time and I'm like, you want me to do this with him? No ways. I can't do it. You do it. He. It is. It's like, maybe I was meant to be a teacher to.
SPEAKER 3 - Jacqui: [28:06.8]
They say to her, I've got patience and I've got time. And I. No, not with my own intolerant others, which comes out in me. And, Funny, I taught for 15 years and when things got really hard with Jude and he became sick, I actually had to leave my job, which was the hardest thing to do in the world because I loved it more than anything.
SPEAKER 3 - Jacqui: [28:29.6]
But Jude wasn't sleeping. I wasn't, I wasn't getting enough hours sleep. I wasn't giving my all at my job. And that's when I said to my principal, who I loved so much, and I loved my work so much, and I had to leave the place I love because I wasn't giving my all to those kids.
SPEAKER 3 - Jacqui: [28:46.1]
And that wasn't fair either. So I had to leave my place of happy, you know, and I had to stop teaching. But going back to Wayne and I, like we always say, if we've made it up to now, we've made it, boy.
SPEAKER 1 - Candice: [28:57.8]
Yeah.
SPEAKER 3 - Jacqui: [28:59.7]
But it's funny. Wayne and I have our different roles. I do the school stuff. I do the. I can't explain. Like Wayne has this way with Jude, which is amazing. Like, Wayne will take him to these play areas and Wayne will take him out and I, freeze.
SPEAKER 3 - Jacqui: [29:18.5]
I can't do that stuff. So Wayne has his role and I do my stuff. There is stuff that Wayne can't do and Wayne not. He can't. He doesn't. He chooses not to. And we respect each other. Like stuff that I don't want to do and stuff that he doesn't.
SPEAKER 3 - Jacqui: [29:34.1]
And it just works. We work because we respect each other so much. And I, understand. Sometimes I'm like, I wish you would come with me. And he's like, but I just can't. It's too hard for me. And I get it. And it's the same as here. He will go and do whatever needs to be done for Jude on the weekends and after hours when he can and has time, and we just get it and it works.
SPEAKER 3 - Jacqui: [29:57.1]
And that's why we work because we respect what we can and can't do. And we won't push each other because it just, you know, it's too hard.
SPEAKER 1 - Candice: [30:06.5]
Yeah. Yeah. Jack, the, this. So you had all this going on with Jude and in your kind of nuclear family, was your mom's stuff kind of overlaying that as well? Was it going on at the same time?
SPEAKER 3 - Jacqui: [30:23.2]
So funny. I got so My mom. My mom passed away in 2015. It was the year Tay was born. So my mom was actually diagnosed with early onset Alzheimer's. She was really sick. She was sick for about eight years. She passed away in 2015.
SPEAKER 3 - Jacqui: [30:40.1]
It was the time that dude got really, really sick. So it all tied in at the same time. It was a nightmare. But my duty and, I couldn't leave her. She, She. I had to look after her as well. So I was busy with dude, busy with my mom, and it was.
SPEAKER 3 - Jacqui: [30:57.9]
Yeah, don't ask me how I did it.
SPEAKER 1 - Candice: [31:00.0]
Well, that's what I was. I was gonna ask you, Jacqui, how did you do this?
SPEAKER 3 - Jacqui: [31:07.4]
My sister and I often just. Just talk about it. We don't. I don't know how we did it, but Shang Tay was born in. My mum passed away in May. Tay was born in. Tay was born in February 2015. My mom passed away in May. And Tay was like a little pot plant.
SPEAKER 3 - Jacqui: [31:24.2]
Shame. Everyone, everyone just came along. I have amazing village of friends and people and everyone just helped. And I had to be there for my mom because my mom was my person and she just. I felt, she.
SPEAKER 3 - Jacqui: [31:39.4]
I needed to be there. And between Jude and my mom, I don't know. But God somehow gave me the strength and I did it. I. I spent time, My mom actually played with Jude a lot. It's quite a funny thing because her mind was really not great.
SPEAKER 3 - Jacqui: [31:59.3]
She almost was at a childlike state. Yeah. And Jude was her bestie. Jude became her little best friend. And they played together. It was. It was. I mean, not the last six weeks. Weeks of her life because she really was ill, but they played together.
SPEAKER 3 - Jacqui: [32:16.0]
They were. It was her little bestie and Jude was the only person who didn't judge her. It was amazing because he was a baby and she didn't judge him. It was remarkable. And that was her little. He used to call her Boba. He was still, you know, had his few little words and it was his Boba.
SPEAKER 3 - Jacqui: [32:33.0]
And she used to call him Bubby. And they used to play. She used to sit on the carpet and play. And I remember one day she said to me, oh, I would love to have kids one day just like yours. And that was the ugly truth. I remembered in my book that chapter. But, yeah, and they were besties.
SPEAKER 3 - Jacqui: [32:50.3]
They were besties. And. But yeah, so it was Cands. Don't ask me how I did it, but I did it. I did it.
SPEAKER 1 - Candice: [32:57.1]
Well, I mean, you do speak about, which I really. I mean, I don't know you and Wayne. Well, as a couple, but I mean, I think, I think something that's an incredible thing that you speaking about is knowing your partner's strength, and also just, like, being respectful and giving one another space to do what it is that they can do without getting resentful and cross and that there's, like, a real respect and that you in it together and that you actually on the same team, right.
SPEAKER 1 - Candice: [33:30.5]
Like, you're not fighting, fighting against each other. And then you speak about support, like, Jax, there's no ways you could have done this without having so many people around you who love you and were there to help and be there for you. And, you know, the, the value of having having those kinds of relationships in your life, I think helps us get through tough times.
SPEAKER 3 - Jacqui: [33:53.7]
Totally. I'm blessed with the village and my sisters, like, my admin person, because I'm the worst admin. I'm, like, absolutely, like, stupid with those things. And, yeah, my sister, like, runs my Jude file. I've got a Jude file with all his papers and medical stuff and his.
SPEAKER 3 - Jacqui: [34:10.7]
My sister runs that. And, my friends are there and my, you know, I don't have a lot of family, but they, my friends are my family. And it's a call. Thank God I'm lucky. And I've got a little village and people in my Jude world and our circle, it's a handful, very small, but who I can relate to and who know what I'm really going through every day because they live it, too.
SPEAKER 3 - Jacqui: [34:37.6]
Every story is different, but we, we can really vent because they feel it, too. And, yeah, I feel like I'm really, I, feel like I'm really blessed. Even though you're alone in it, you really are alone, because it's, it's.
SPEAKER 3 - Jacqui: [34:56.4]
Yeah, it's a journey.
SPEAKER 1 - Candice: [34:58.3]
Yeah, sure, Jax. Gail, do you have anything on your mind? You just, like, sitting here, like, listening.
SPEAKER 2 - Gail: [35:08.0]
It's crazy. Yeah, sure, Jax. I, I. So my mom had Alzheimer's, and my youngest daughter, we went through something not as hectic. We went through something fairly similar. She, they thought she had cystic fibrosis, so we had two years of, of her literally starving to death with nobody able to, you know, give us any diagnoses or anything.
SPEAKER 2 - Gail: [35:35.2]
Anyway, fortunately for us, we did manage to, to get to the. We've never really got to the bottom of it, but we managed to find a, a cure for her, a solution. And so she sort of came. Came. Right. But, you know, when you were talking, it, just took me back to.
SPEAKER 2 - Gail: [35:54.5]
To those times in hospital where you just know in your heart that something is wrong and the doctors won't listen to you. And you, like, you. You keep second guessing yourself, like, oh, am I going mad?
SPEAKER 2 - Gail: [36:11.6]
You know, And I think it's definitely a mother's instinct, you know, you just push and you push and you push because you know that there is something wrong. And so, yeah, I was just sitting here listening to you and just thinking about all of everything and just.
SPEAKER 2 - Gail: [36:28.4]
Yeah, we were very lucky. We had a, We had a good outcome. And I just, I just take my hat off to you because it is just the hardest thing in the world to watch your child go through these struggles.
SPEAKER 2 - Gail: [36:45.2]
So, yeah, thanks. Thanks for sharing with us.
SPEAKER 1 - Candice: [36:48.3]
So it's a journey. It's a journey. Jacqui, all I can say is I was moved hearing you speak last time, and moved hearing you speak today, because even though you've shared with us bits and pieces of the journey, I'm fully aware that none of us can fully grasp what this meant for you, for your marriage, for your family, what it's like on a day to day.
SPEAKER 1 - Candice: [37:14.3]
But you do it and you do it and whenever I see you, you just bubbly and warm and smiling and, you know, and so, I just want to take my hat off to you and just almost like say to you. We just, we see you and we know the kind of strength that it takes to just deal with what life throws at us.
SPEAKER 1 - Candice: [37:35.0]
And we really grateful that you came on to share this with us and our listeners. Thank you.
SPEAKER 3 - Jacqui: [37:41.2]
So grateful. And thank you for choosing me. And thank you, Gail. And so lovely to meet you, Gail and Cands, it's always a blessing to see you and.
SPEAKER 1 - Candice: [37:50.0]
Amazing. So for those that would like to find out about Jacqui's book, it is called, like she mentioned, hey Jude and there's a picture of it over there. And we will link everything about where you can find Jacqui, how you can get in touch.
SPEAKER 1 - Candice: [38:07.6]
It's not like, available in stores, so, like, you will just be able to reach out to Jacqui directly. Lee. We'll link everything for you. But it's just a remarkable story, a remarkable mummy, mama and woman.
SPEAKER 1 - Candice: [38:23.9]
And Jack, thank you again.
SPEAKER 3 - Jacqui: [38:27.3]
Thank you guys. Thanks, ladies.
