Dexter was in way too much of a hurry to meet us all. I remember where I was, when I got the call about his early birth. I was at work, in a smelly old demountable, way too far away to be of any assistance. We knew there was something wrong, but the final decision to cut him out had not yet been made. That decision was made sooner than we had been advised, and suddenly, I had another nephew.
I remember meeting him for the first time, and making him cry because I said he was here too soon, and should still be growing in his Mum. He was purple, and shiny, and so, so, so small and fragile. He was covered in tubes and cords and plastic and looked so frightful, but he was ours and our hearts burst when we saw him. I was his aunt, and that tiny baby had me, in a way I could never have predicted. He still does.
I remember where I was, the day I got the phone call from Lenice, telling me Dexter had brain damage. He was 30 days old. I was on my back deck. It was cloudy. And, my heart broke for them.
Telling me those words must have been so difficult for Lenice. We had no idea how Dexter's future looked, and we were scared.
I remember the weekends, when Dexter was in Sydney, too small and too sick to come home. We held his feet, though the small plastic holes of his humidity crib, and ignored the nurses' disapproving glances. We had to touch him.
We needed him.
I remember the photo I had at work, and the daily texts I sent Lenice... at the time of his birth, marking off each day of his life... a little celebration.
Lenice and Andrew almost got called to the NICU in the first week... because they nearly lost Dexter. There were too many of those moments.
I remember our first cuddle... we snuck one in. Dexter was three months old. Three months!! He was still in Sydney, still in the NICU. I think the nurse knew we needed a cuddle, because she sent us off with Andrew, to bath Dexter, then walked away. He was still so tiny... and he cried, and I loved holding him.
Dexter's always loved close contact. He is such a cuddly, comfy little kid, and we still lie on him. I am teaching him to say 'off'! He needs some way to tell us to get off him! He does love cuddles and contact, but.. he is three, now, and thinks he's too old for cuddles and kisses.
I remember the week he finally came to Wollongong. That was such an emotional week, full of extreme highs and heart breaking lows. But, finally, he was in a place where I could visit, every afternoon. And, in Wollongong, we could have as many cuddles as we liked! He was there for another month. I was there most afternoons.
I remember when he turned 100 days old. That's not really a milestone that is celebrated... it's usually weeks and months that are acknowledged, but 100 days in NICUs is celebrated. It was a bittersweet milestone. Dexter was still too small and too sick to come home. The future was full of questions and doubts and worries and insecurities. Lenice and Andrew were exhausted, and worried... and scared. And, they were full of love for our beautiful little boy.
Andrew would finish his work, and drive to the hospital. Lenice would call him, worried, at midnight, and he would be sitting in the NICU, with Dexter asleep on his chest.
He reacted in the same way, with his earlier needles. I remember the fear and the worry. I remember the exhaustion and the fatigue. I remember the bitter disappointment, that he had gone backwards in his progress, the worry that he was still so sick and needing to struggle, and I worried for my sister, who was beyond exhausted and only hanging on by the tiniest of tethers.
And, I remember the day Dexter felt better and pulled the oxygen prongs out of his nose, again. Every day was a rollercoaster!
That almost didn't happen, as a hernia was found, and Dexter needed surgery. But, eventually, they realised we needed Dexter, and we needed to be home.
And, Dexter was discharged. Dexter was coming home!
We had to watch a resuscitation video, before we could bring Dexter home.
And, I remember the fear and panic, at the thought of Lenice and Andrew being in charge of this fragile little boy. He was 122 days old, and finally home... but would we be able to look after him properly?
He was on a grasby breathing monitor, that alarmed whenever he stopped breathing... or whenever the connection to his tummy was interrupted. That alarming sound was one of the worst noises. I still don't know how Lenice and Andrew stayed so calm in those early days at home.
Lenice has breathed into Dexter's mouth.
She has massaged his little chest.
And stayed calm.
We didn't know what the future would hold, or how we would manage.
Lenice and Andrew's dreams were shattered and scattered in the wind.
Would he walk?
Would he see? Would he talk? Would he run?
Would he be able to live independently? Would we cope?
Together, we learned so many things. He taught me to break every movement down to each individual movement, and I taught him as best I could.
I am so proud of him. Every day.
(I was sitting at my other sister's dining table, when I had those two confirmed.)
And then, the next kick in the guts came. We'd been doing so well. We were finally feeling more comfortable. There were more good days than bad days.
Until, he had a scheduled appointment with his paediatrician.
After everything, Lenice had to tell me Dexter had a mass... in his liver. And, it was probably cancer. But his blood tests didn't indicate cancer... but, there was a mass... We spent a couple of weeks, with these thoughts in our heads. Up, down, up, down... questioning and wondering, knowing and doubting... Surely not.
And then it came, the hepatoblastoma diagnosis. Our cheeky boy had liver cancer.
It was a punch to the guts, when we were already so broken and exhausted. But, for Dexter, we sucked in a big breath, and stood united, ready to fight it.
I remember the first time I saw him, after the official cancer diagnosis. It was at the back doors of Domayne, Wollongong, and he was in his stroller. And, I lay my head on him, and pushed back the tears, because we had to be strong, if we were going to survive this.
It was as Dexter was starting his chemotherapy treatments his webpage was established, and his facebook account was opened. Dexter's facebook account became a place where everyone posted jokes and funny photos, helping Lenice and Andrew get through the horrible hours and days in hospital. Through the facebook page, people showered us with so much support and encouragement, and we will never be able to really explain how helpful that was to us.
We didn't share the full details of Dexter's cancer journey. We tried to keep it as light and positive as we could.
I shaved my head, for Dexter. I got many stares, and some people judged me, because of my hair. But, I did it for Dexter. It's only now, that Dexter is doing so much better, that I feel I can start to let my hair grow, again. I think, shaving my hair was a way I could physically change myself... I had changed so much on the inside. I was exhausted and broken and sad. It didn't seem right that I looked the same, when actually, I was a totally different person on the inside. Shaving my hair was probably the best thing I could do.
I remember the relief, when Dexter had his tumour cut out... and then, the fear, when Dexter did not cope with the recovery, and needed resuscitation after reacting badly to the pain medication. I remember worrying about Lenice and Andrew, who watched Dexter being resuscitated, twice in one day.
How much more could they take?
I listened to Lenice, as she talked about hearing other mothers crying, as they lost their child, in the next rooms. What do you say to that? How do you help?
I remember Dexter's egg allergy, a direct result of his chemotherapy treatments. I remember having kicked Lenice and Andrew out of the ward, for a break away from the hospital. They went for dinner, and I watched Dexter. I remember him vomiting. I remember lifting him, and turning him face down, over the bed. I remember holding him, and I remember feeling his tiny stomach, as he continued to be sick. And, I remember Lenice walking in, and taking over, and being strong.
I remember holding Dexter, after he came home from his chemotherapy treatments, wanting him to rest and knowing I was there for him.
And, I remember Dexter, struggling to take a few steps, because I was holding him. He would stretch his legs, telling me to hold him in a standing position, and he would struggle to take a few steps. His little body was sick and exhausted, but he wanted me to be proud of him. And I was. I am.
I remember how I felt, when Dexter finished his chemotherapy. I think that was an incredible feeling of relief, and some of the exhaustion could finally be released.
And then, the best news... Dexter was cancer clear. He was also a big brother. We had turned a new page, and, although we still had the awful cerebral palsy and vision impairment to deal with, the cancer journey was done.
(It will never leave us, though, and every bruise and every red mark and every lump makes us immediately jump to cancer. It will be a constant worry.)
Dexter was so lucky and received his cancer clear status. Lenice still remembers the dates of every significant moment... the surgeries, the start of chemo, the day the chemo bag was finally taken down... every date is seared in her memory.
We will never be the same.
I can't tell you how that felt. This little boy doesn't have his words, yet. For months, I had been moving his mouth, repeating and repeating and repeating the movements... teaching Mum and more and hungry and Carol. **Dad was trickier... he was going through a biting stage, and I didn't want to put my finger in his mouth, to move his tongue to the d position!
Dexter said Carol again, over two years later. I told him I wouldn't help him roll over if he didn't say it... and so, he did. Loudly. Cheeky! I haven't heard it since.
He has told me to get off him, with an 'off', once or twice!
I'm a different person, now. I am stronger, but weaker. I am tougher, but I break more easily. I am exhausted, and constantly alert and worrying. I am not the same person. I am still exceptionally loyal and still love being crazy.
I am fiercely protective of Dexter, and if he likes you, we all like you.
I've met some fantastic people, and appreciate every single person who has supported Lenice, Andrew and Dexter. We live in am amazing community, and have had so much support for Dexter. We have asked for help with fundraising, both for Dexter and for charity, and have always been supported. So many people have touched our hearts, with their generosity and kindness.
We've got a long road ahead of us, and no doubt, there will be many, many more challenges to face. But, with Dexter showing us the way, we will get there.
We Nearly Lost Him This Time
Cerebral Palsy - A Dexter Day
Learning to See
Flying Fox Fun
Mum was Crying in the Ball Pit
What a Dollar means to Dexter
Dexter's First Month
Who is Dexter?
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