Dexter didn't seem to be excited for his birthday. We didn't even know whether he understood it was his birthday. His vision made it hard for him to see his presents or his cake. He couldn't tell us what kind of cake he wanted. He couldn't tell us what he wanted to do, for his birthday.
Birthdays brought tears and heartache.
Birthdays brought memories of those earliest days and the long, exhausting four months of Dexter's NICU days. He fought so hard, each and every day.
And so, despite not knowing how much Dexter understood about his birthday, we celebrated.
We wrapped presents.
We helped him open them, with no reaction from him. There were no smiles...
No giggles... No screams of delight.
There was no reaction.
We helped him play with his new toys, which he rarely seemed interested in.
But we played, because birthdays should be fun.
We gave Dexter a cake; a design we thought he might like.
We sang the birthday song, even when Dexter didn't seem to care.
We cut the cake and fed it to him.
The cake, he liked.
Dexter's birthday is both a celebration and a time when old memories bubble to the surface.
Old sores are ripped open.
About a month before Dexter's seventh birthday, we told him it would be his birthday soon.
He got very chatty. We imagine he was talking about his birthday.
Dexter started to break into little chuckles, throughout the day, presumably as he thought of his birthday.
This year, with some suggestions from us, Dexter was able to pick the design of his birthday cake.
Dexter nodded to show who he wanted to come to his birthday party.
(It's just going to be a simple one, this year, despite what he might want!)
He knows his birthday is almost here!
We were right to persist and to push through our pain, so we could show him how to be excited for his birthday.
Dexter does love the birthday song; he knows it means cake!
So, every now and again, we sing Happy Birthday to Dexter.
We are encouraging his excitement and happiness.
Last Christmas, Dexter got a dinosaur pet. It stands up and roars. We've heard it sob, once, when we had neglected it. It burps and farts. And, Dexter loves it.
He thinks its very funny.
Dexter doesn't play with the dinosaur with his hands, but he responds to it and enjoys it.
Dexter has learned to play.
So, this year... This birthday, we will celebrate.
And we know Dexter will celebrate, too.
He will lie awake, the night before his birthday, feeling too excited to sleep.
He will be chatty and loud, excited for his big day.
We will still have to lift him out of bed. We will still have to dress him.
We will still have to feed him.
We will have to blow the candles out and we will have to support him to unwrap his presents, but we will see Dexter smile.
We will know he is happy.
And that will make us feel incredibly happy!
(If you're like us, and your child doesn't know how to celebrate because a disability has stolen their ability to show excitement, don't give up! Fight through the tears and celebrate, because you just don't know when those smiles and that excitement will come.)
#DextersReality #cerebralpalsy #cvi #birthday #love
I got sick though; pneumonia and had a lot of struggles.
Even back then, my determination was obvious.
Mum sat with me for 120 days, only missing two.
For a long time, the NICU was our whole world.
What we didn't know was that my hepatoblastoma would be detected, a week later.
I was cheeky and loved funny noises.
Everyone was coming to terms with the 'cerebral palsy stuff' and the limits it would put on us. We knew we'd do whatever we could, to make life easier.
We were seeing my sisters do things I couldn't do, which is bittersweet. Our family had overcome so many challenges, that they all changed, just a bit. We started to celebrate the weird and the different and the funny. We started to see the world a little differently, now that I was getting bigger and my disabilities were more obvious.
I loved being around people and noise and fun.
I couldn't do those things. We still made sure we had fun.
There have been many hospital stays and a few bouts of pneumonia.
It's not been easy, but we are doing it together.
I'm cheeky and determined. I'm clever; I understand everything I am hearing and I have a quirky, adult sense of humour. I laugh when my sisters get in trouble and worry when they cry.
I love the people who believe in me. I love the people who love me. My disabilities scare some people and I know they avoid me, but I am patient and hope they will learn to see me and to love me.
I love school.
I love my friends.
I love animals and I love music. I really like to sing!
Soon, I'll be seven!
Seven sees me in Year One. I've had so many fun adventures and met some cool people. Every single day is tough, but we are good at finding the silver linings. We are forever hopeful and do our best to make the most of everything.
And, seven is going to be awesome!
When Your Heart Aches with Sadness
When Six is too Young to have a Disability
$37,000 and a Van
Mum was Crying in the Ball Pit
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
Stuck in a Rut
Embrace the Lion
Open Letter Thanking Parents for the Parties
Kindergarten in Review
Dexter's First Month
Dexter's Cerebral Palsy
Who is Dexter?
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