Sometimes, you know it's going to be a bad day.
Either way, bad days knock you down. You've got to learn to be strong enough to get back up, again.
May and June are filled with bad memories and these two months bring a lot of heartache. Most of the bad news doctors have given us, has come in May or June.
By April, Mum is starting to feel that heaviness in her chest... that wrenching in her stomach. She starts to worry and feel anxious.
Each year, she tells herself she will be stronger, this year. It won't hurt, as much.
She tells herself she won't cry as much, this May and June.
She's getting there.
But, it's tough. And, sometimes, she's hesitant to admit the pain, because she has had people tell her to 'get over it' and 'move on'.
If you've lost a parent or a sibling, a child or a best friend, you probably remember the day they died and you possibly shed a tear or two, when you think about them.
And, that's how it should be.
Mum grieves, too. Mum and Dad were lucky enough that they could bring me home, despite the many, many days they nearly lost me. They have seen me blue and non-responsive. They've seen medical teams run to my beside to resuscitate me. Teams. It's happened more than once.
And so, they grieve.
They grieve for all I can't do.
They grieve for the conversations we can't have.
They grieve for the extra challenges I have to overcome.
They grieve for what they thought our lives would be.
They grieve for the friendships they have lost.
And, the big dates bring the grief right back to the surface.
This grief is not something they can just 'get over' because nothing has changed.
I still have severe quadriplegic cerebral palsy. I am still totally reliant on others - for food, dressing, moving, playing.
I still have a vision impairment.
I am still non-verbal, though school is teaching me new sounds and I work hard to reproduce them.
I still have a history of childhood cancer. I still have scans, to check the cancer cells are dead. The fear of secondary cancers is very real and will never go away. The oncologists told us the statistics. They warned us, while we let them fill me with the toxic chemicals that killed my hepatoblastoma.
When you know you're facing two months of awful memories, you can take a deep breath and prepare yourself to face each day.
But sometimes, something unexpected will happen.
Watching movies and television shows can set off post-traumatic syndrome disorder triggers. You can't prepare yourself for these. Suddenly, during the show, we might hear the beeps and noises of a NICU, and we are right back to my earliest 122 days. Sometimes, a child might struggle to breathe and be diagnosed with something serious and we remember the times this happened to us... right down to the colours of the walls and the accents of the doctors. The memories are vivid. Sometimes, a child might die. Sometimes, we have to stop watching, because the memories and the anxiety are too real.
And so, we actively seek ways to make new, fun, happy memories for the June long weekend. We try to balance the horrible days with happy days.
We don't share social media posts, with pictures designed to encourage people to reach out and ask for help. We don't share the 'copy and paste this to show someone is listening' posts.
We prefer to open our hearts and show how broken we are. We prefer people to see our anxiety and stress, and to know that you can carry the pain, but still be happy. We want people to know that their pain is real, because our pain is real. We want people to know that life can be hard and that not everyone will understand. Sometimes, the people closest to you might not be strong enough to support you through the pain. We want people to know that it's ok to ask for help.
Mum has spoken to therapists. She was able to speak about a lot of her pain and anxiety, her worries and stress.
When the therapist started to cry, Mum stopped talking.
Now, we talk to each other. We listen to each other. We check up on each other. We encourage each other to talk. Mum and Dad are incredibly strong, in that way.
You have to tell someone. You have to talk.
If you need someone, there are several organisations that can help you.
You don't even need to talk... you can chat online.
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
I’m a Kindy Kid!
Dexter's First Month
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
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