They were so young back then!
And everything changed!
This month, Mum and Dad have been together for ten years!
That deserves a bit of a cheer!
After everything they have been through, they are still together and happy and strong. Sure, they argue and fight... but that means they care enough to try.
They have each other's back... instantly and without question.
That is probably how they have survived the last five years.
When I was born, Mum and Dad had three months of sleeping in different towns. This was a time of constant heartbreak and bad news days, with a few happy moments thrown in.
They were exhausted and anxious and worried.
But, they were there for each other.
And then, I moved to Wollongong and had another month in hospital. Mum and Dad were finally under the same roof... even if I wasn't home, yet.
We didn't share the premature NICU days, because my website wasn't created then. We've shared some of the stories, but living it every day for 122 days was exhausting. But, Mum and Dad had each other's back, and they made it.
And then, I came home! I was four months old, the size of a newborn, on a breathing monitor, with brain damage and probably a vision impairment.
That alarm went off, every night... a few times a night. They were not getting much sleep, but we were all together.
There were many good moments, but there were hard days, too.
They had my cerebral palsy confirmed. We didn't know much about cerebral palsy back then.
My cortical vision impairment was confirmed, too. We knew almost nothing about CVI, back then.
They had friends around them, but because I was so different, they were also isolated. It wasn't easy. The heartbreak of not meeting the typical milestones the other kids were reaching... that hurt.
We are stronger now... It hurts, but not as much. (On some days, the heartache comes crashing in and leaves us feeling as though we are drowning.)
And then, it was my birthday. I was turning one. We'd made it! We'd made a year, which was impressive, considering the number of times we thought we might have to say goodbye. We threw a party to celebrate... but, I wasn't feeling well.
They were both working. They were back sleeping in different places; one with me and one at home. They had hospital stays, watching the chemotherapy drugs dripping in to me. They drove me home, stopping to clean my vomit. They cuddled me, when I was too sick to move. They didn't sleep. They stressed and worried. They took me for weekly blood checks. They sat with me while I had plasma, blood and platelet transfusions. They cleaned my bleeding noses. They helped me with my mouth ulcers. They put cream on my rashes.
And, they held each other.
Then my Noisy Sister was born... a month early and not ready to suck milk, yet. Her blood sugars dropped and she was put into the NICU. It was like we were starting all over again, but this time... we knew the worst things that could happen.
But, they sent my sister home. My beautiful doctor watched her closely... she wasn't drinking. She wasn't putting on weight. Mum tried to feed her, but she was so stressed and worried. Finally, just before the Noisy One was going to have to be re-admitted to hospital, she started drinking!
And, some good news! My oncologists said I was cancer clear!
We've needed a few ambulance rides, including a helicopter.
We've been in hospital more than we would have liked... but less and less, as I get stronger.
We know a lot more about cerebral palsy.
We are used to the stares and the comments, the whispering and the pointing. We usually shrug it off, but occasionally... it still hurts and we feel like we want to shout and scream.
We chase adventures, because they are fun.
We have made some beautiful new friends; people we would not have met if I was not 'me'.
We have had some incredible support from many people, and we are so grateful. We remember you. We appreciate your kindness.
Mum and Dad have been together for ten years. The last five have been filled with some really awful moments. We've had incredible scares. They nearly lost me several times. But, I'm stubborn and strong; like them.
This post is for Mum and Dad and their ten years.
They are generous, forgiving and patient. Their lives have totally changed, and they are different people because of it. They are stronger, and yet... break more easily.
They argue, but they trust each other. They confide in each other, sharing their worst fears.
They hold each other.
They create a home of inclusion and fairness. It's a home of love.
Happy ten years, Mum and Dad!
Dexter Hit 3 Months Old
Dexter’s Earliest Days
Finding Out & Starting Treatment
Thanks, Mum and Dad
They Want Octopus Arms
Little Fingers Reaching
Something to Say But No Words to Say It
And Then, They Whispered about Me
Learning to See
We Nearly Lost Him
Who is Dexter?
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