'Days'. Scary, isn't it?
But, Dexter always fought back.
Here's some of that story:
I was a big baby.
Everyone thought I would do well... Mine would be the common story of a boy born early, but a few years later... and no one would know.
And then, I crashed.
After her emergency cesarean, Mum didn't see me for eight hours. She saw a little purple piece of me, but nothing else before I was wrapped in plastic and whisked away.
Dad was able to see me first... in my plastic humidity crib, cords and wires attached and monitors beeping.
When Mum finally saw me, she couldn't hold me. She was wheeled down in her hospital bed and her and Dad could only watch me through the plastic.
Their lives changed that day.
They changed that day.
In the Maternity Ward.
Surrounded by happy mothers, fathers and healthy babies.
And, Mum wept.
Nurses in the Neo-natal Intensive Care Unit (NICU) keep families updated, especially if something goes terribly wrong. If parents are not in the ward, and a baby is losing their battle, they will call the parents in.
One day, Mum and Dad came downstairs to the NICU, and the nurses told them they had almost called them in the middle of the night.
I had crashed. Badly. But, I fought back.
Many premature babies go home before their due date.
Not me, I stayed for 122 days. Four months. One season.
Mum fought to hold me, waiting until I was 8 days old and Dad held me for the first time when I was 22 days old.
My aunts got a sneaky cuddle when I was three months old.
In the NICU days, there were moments when a nurse would pat me... rub my chest. They were keeping my heart going. They were giving me CPR.
Mum was there every day. All day. Dad was there as often as he could be.
They saw me being revived. And, that is a a good thing, because they learned what to do. And, Mum has done it to me.
She has kept my heart going a few times... and once, she breathed in my mouth for me.
We've never gone public with this before.
It's part of who we are, but we have been quiet about it.
It's scary.
It's awful.
But, it's time.
In the NICU days, especially the early ones, my oxygen saturation monitors frequently alarmed. It was awful watching my stats drop down to the teens, when they should have been at 100%. (Now, the sounds of those alarms set off post traumatic stress symptoms.) We wouldn't know how many times my little heart was given a little boost during those days.... a gentle rub and a little pat. There were days I was given a little shake and, there were a couple of days when the nurses spoke to me in a stern voice, telling me to be good.
Before I came home, my parents and aunts watched a CPR and Resuscitation DVD, so they would all know what to do... just in case.
I came home on a Grasby breathing monitor. It alarmed if I did not breathe for 20 seconds. It alarmed a lot.
Most times, I would remember to breathe on my own. There was one day, Mum gave me some more of those chest pats... calmly and quietly. She just 'patted' me. But, those pats were important. And deliberate.
Driving in Sydney one day, Mum was watching me. I was breathing badly. I was making gasping noises and struggling. Dad changed directions and drove us to the hospital, while Mum sat in the back with me, holding me hand. She saw I needed help and she leaned in, really close and she breathed in my mouth. Dad watched in the rear-view mirror, as he raced us to hospital.
They stayed calm. They saved my life.
After my cancer surgery, I was given medication I am allergic to. I stopped breathing. Twice. Mum and Dad watched as a team of medical professionals swamped my bed and forced tubes down my throat, pumping life back into my limp body. Twice. Twice in one day.
They changed that day. That memory is permanently seared, in perfect detail in their minds.
After my hernia surgery (when I was 4 months old), Mum was watching me recovering. She watched me and she watched my heart. She saw I was struggling and she gave me some of those chest pats. She helped me. She saved me.
Mum and Dad are very different to the people they were before they knew me. They have seen awful things. They have had to do awful things to me, including watching me suffer through chemotherapy treatments.
This is why they don't want praying and God stories.
They wonder and question how anyone could make one, innocent little boy, endure so much. They are happy for people to pray, but ask you pray for your own peace of mind, quietly. They respect you for your faith, but ask you respect them for their decision not to have public prayers for me. And, they thank the people who have respected them on this.
They have always looked for a silver lining. Even after that most awful of days... the heartbreaking one, when they were sat down in a cold room and bluntly told of my brain damage.
The doctors were surprised Mum and Dad didn't already know and had no answers for their questions. They yanked the rug from under Mum and Dad, who were already scared and exhausted. Luckily, when Mum and Dad fell, they fell together, clinging to each other, and they have been lucky enough, and strong enough to stay together and support each other through all the nightmare days.
And so, the news... Brain damage.
Smashed dreams, shattered hearts.
And, the silver lining...
Righto, we know. We found out early. We can start helping our son right now.
He was born early, so we get extra time to see him and love him... extra time for him to love us. And, we can go in the Paralympics!
Someone recently made a comment: When will it end?
I hope it never does, because when it ends for me, it ends.
I'm not ready for that! I'm a fighter! I love my life!
A midwife once visited Mum and I. She almost dismissed me, and told Mum we should go to Mothers' Groups, because I would help the other mothers see how easily they had it. I would make the other mothers feel better about themselves and their children.
Can you believe she was paid to visit us in our home and say that!?
Mum is having a rough time right now.
Some days are good, some are hard and frustrating and exhausting and lonely.
And, people don't understand.
They don't understand because Mum does it all so well. She makes it look easy. But, it's not.
She keeps a clean house and remembers everyone's birthdays. She sends cards and gifts. She manages a ridiculously full calendar, scheduling appointments and therapy. She never sleeps through the night and has a noisy, energetic child racing around, as well as a little boy who is stuck in a body that doesn't listen to his brain. She cooks and cleans and washes clothes. She makes sure I do my therapies and exercises, checking a list off each day. She feeds me and makes sure I drink enough, so I won't develop further complications with my pooing. She never stops.
Sometimes, she gets lonely. She can only watch as my peers race around, riding bikes and jumping and playing, swimming and chatting about their day. I can't do that. I can't wrap my arms around Mum and Dad and tell them that I love them.
No one will ever truly understand just how hard each and every day is, unless yours is the same story as ours. We can open a window and give you a glimpse of our life... but in fact, our life is probably harder than you can even imagine.
Someone once told Mum to Get over it. Snap out of it.
She was told not to be so moody.
In truth, she's not moody. Her life is challenging and she is exhausted.
She's not moody. She's brave and strong.
And, get over what? My cerebral palsy? It's never going away? Get over my cancer? My prematurity? My vision impairment? That'll take some getting over!
Remember this one: Will he always be a vegetable?
People complain to her about big things in their life, in their children's lives. Problems. Issues. To them, they are big, significant, difficult.
To Mum and Dad, they are the trivial things.
Mum and Dad understand that our life is different, so they listen to your problems and they offer advice, suggestions about how they dealt with those issues with me.
What hurts most, is when people cannot see Mum and Dad have dealt with the same problems. And worse. They have dealt with incredibly testing situations.
New nurses, unfamiliar with our family, refuse to believe Mum has no medical training. She knows the tests, the procedures, the names, the medicines. She knows the routines and speaks the language. She knows her stuff.
And, so... this is what we'd like you to consider...
Don't treat Mum differently, just because her son has cerebral palsy.
Include her, as her friends do now.
Ask her for advice. Listen to her ideas, but never forget that what is a huge problem with your child this week, is a tiny aspect of her life with me.
The other day, there were red spots on my legs. Little red spots. Nothing, right? She immediately wondered about my platelet levels, and her mind immediately went back to worrying about cancer. The oncologists said the chemotherapy treatments can cause secondary cancers. So that is a worry we will always carry.
The other night, I coughed. Dad immediately questioned whether I had swallowed food or saliva into my lungs, as that would lead to hospitalisation and pneumonia. This is always going to be an issue and I will likely end up in hospital a couple of times a year because of it.
We're currently struggling to watch me try to do things I was much better at, before surgery. We know I will get there, but my struggles are still heartbreaking and frustrating. Another setback.
Mum and Dad wish their problems with my sister were their greatest concerns! They wish her teething was a big worry and that her slapping me was the biggest issue we were dealing with. They wish they could worry about strollers, not mobility walkers or standing frames.
Mum and Dad are different people, now.
Their lives have changed so much, they have seen and done so much.
And, their greatest strength - their love and dedication to each other. The way they support each other and carry each other through the most awful of situations, and how they come through everything together.
The two of them - strong together.
They have learned the real value of trust and loyalty, and will support you through anything, if you can acknowledge the hardships they have endured.
We try to remain upbeat and positive. We portray Dexter as a happy, loving and cheeky little boy, which he really is.
Sometimes, we need to open our hearts a little and give you a glimpse of the heartache and pain that is inside.
We're strong. We're good. Some days are just hard. And, if we are raising awareness of cerebral palsy, we need you to know it is not all fun and sunshine.
Carol
Who is Dexter?
My Sister Knows
Post Traumatic Stress
You look Funny
It's a Good Time to have CP
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