It's been a rough couple of weeks, so... we wrote this. It helps us to write it down.
Looking back, we fell into a rut when Dexter was born. For four months, his mum sat by his side. During some of the very worst times of her life, she was alone; we were at work and she was stuck in hospital. We waited for her to give us good news about Dexter. Knowing how desperate we were for good news, she protected us from the reality of how hard her days were.
She didn't tell us, until much later, that she cried. Every. Single. Day.
She struggled through those days. We found ourselves in a rut, because of the exhaustion and strain those four months brought us.
If Dexter had been a premature baby, with 122 days in the NICU, who came home and learned to walk and talk and laugh, we could have moved out of the rut. Dexter would have been one of the success stories; a miracle baby who struggled through the NICU... His comparison photos from then and now would prove how amazing he is.
But, Dexter's brain damage left him with a severe form of quadriplegic cerebral palsy. He's damaged; he's not a miracle baby. He's 'intimidating' and 'scary' and 'weird'. He's 'too hard to understand' and deal with. It's too hard to include him. 'He's in the too hard basket.' That's what some people in our lives have told us, anyway.
When such negative comments are made, the earth below you shifts.
That rut becomes a ditch.
Then, the official terms started coming in, as Dexter was diagnosed with a range of things. Knowing the disability is there and having it officially diagnosed are two different things. You're never ready to hear 'bad news'. An official diagnosis makes it permanent. Forever.
But, perhaps, what's even worse is when Dexter is excluded from the yearly assessments we were told he would have. Forgotten. Omitted from the list. Is it because he has such severe cerebral palsy and a vision impairment and is non verbal? Is it because he's not one of the 'success' stories? Dealing with all of that is hard enough, harder than we can ever explain. But Dexter missing out on services and assessments is just cruel.
He's too hard. He's not the success story everyone wants.
The earth shifts again. The ditch is a trench.
Dexter got cancer. Cancer! Seriously! After so long in hospital. After so many hurdles we had already jumped. After so many difficulties and challenges we were set to face, every day, we also had to deal with cancer!?
Dexter was never visited by any organisation, to help pass the long hospital days. He saw a musical therapist, linked to the hospital, but no one else. He had cerebral palsy and was non verbal. He had a vision impairment, so he was different to the other patients. He was in the too hard basket. Everyone left us alone.
"Is your son always going to be a vegetable?" was a question we were asked when we stayed with him in the hospital.
Dexter beat his cancer. I don't know how we made it through that ordeal. We were running on pure exhaustion. That trench got a little deeper.
We remember all the big events that happened; detection, diagnosis, broken ribs, resuscitation and chemotherapy. We remember the isolation, financial stress and fear. We are anxious at any sign the cancer might be back.
Dexter's in a wheelchair. He's totally dependent on us. He misses out on many things. It breaks our hearts when people come to the house and don't acknowledge his presence. We hate the pity. We have busted backs and our hips are out, because of the heavy lifting we do... several times a day.
We choose to find happiness and silver linings, even when all we can see are difficulties and challenges. That takes a lot of effort. It's hard, but we still try.
The difficult thing is that we never know when we're going to be hit by something new. We never know when someone will say something they think is innocent, but which cuts through our heart. We never know when we will have a day full of stares. We never know when we will be judged and discussed.
Life is hard.
And often, the bad days are stacked with one thing after another.
Therapists resign and leave. Therapists can't access equipment we need, but 'a rival' company refuses to provide the equipment because Dexter's seeing a private therapist.
So, we miss out. Or, we fight. Again.
So much for early intervention.
People get angry at us. Perhaps we don't give them the time and attention they want. We can't give ourselves the time and attention we need, so it's sometimes difficult to always be there for others.
People see our frustration and mistake it for anger and a bad mood. They don't realise Dexter might have been awake most of the night, crying through cerebral palsy induced leg cramps. They don't realise the emails and phone calls that have been sent, often filled with disappointments. People don't realise that we have possibly been given some more bad news. They don't realise we are stressing about how we will fund Dexter's new standing frame and wheelchair accessible van; we need a bigger one and we need it modified to lift the wheelchair into it. They don't realise that we are scared and heartbroken and worried and exhausted.
We're sorry, but we can't always be there for you. We are hardly looking after ourselves.
Our rut has become a deep trench and though we struggle, our lives will forever be filled with challenges, disappointments and heartache. We can't see an end to it, but the disabilities will always be there.
And, because we write this, someone will message us and tell us it's time to get over it. "It's time to move on."
Get over what? The cerebral palsy is there. Every. Day. (And, most nights.) The vision impairment is still there. Dexter is still nonverbal. We still can't access so many places, because we have the wheelchair. Dexter still can't run to the park, chase his friends and come back, exhausted, to wrap his arms around us and snuggle in for a cuddle. The pain doesn't go away.
Our life is so hard.
But, we choose to be positive.
We choose to fight to include Dexter and we choose to find the little things to be happy about. Over time, we've noticed something. When we share hopeful, positive, successful stories, Dexter is celebrated. When we are brave enough to pour our hearts out, we get fewer comments and less support.
Our reality seems to scare some people.
But, if we're going to be honest, most days break our hearts and we struggle with how overwhelming everything is. We share the happy moments; the ones we so actively chase. But, those moments are little snippets in a very difficult, heartbreaking and exhausting life.
We already plan to provide Dexter's sisters with therapy. They are growing up in a loving, happy home. But, they are living in a home filled with incredible stress and concern. There is a lot of frustration and disappointment around them. We do our best not to cry in front of them, but... sometimes, they see it.
Already Dexter's sisters have asked why they have a brother who can't walk.
We can only imagine the questions they will be asked by their peers.
They are going to need support.
We are ok.
Actually, we are not ok, but we know that if we stay strong and stay together, we will be ok. If we can turn away from the negatives that some people bring, we can focus more on the good things. We will continue to support each other through the tough times, because we know there will be more to come. We listen to each other. And sometimes, we write it down, even if we know some people won't like to read our thoughts.
We're not in a rut... We're in a trench.
We are broken. We are hurt. But, together, we are strong.
Again, to the people who see the strength in Dexter, who see his true character - thank you.
To the people who support us, who care for us, who listen... even on our darkest days - thank you.
Dexter is doing well. He is loving school. He is so excited, each school morning and has more energy than we have ever seen. He is thriving, thanks to his teachers, peers and the school community. He is doing well with his physiotherapy and swimming lessons and is getting stronger and stronger.
We are open in our conversations with Dexter, because he understands it all. He knows we love him. He also knows when we are doing it tough - he's sensitive like that.
Today's challenge, smile and say hi as you walk past people. You just never know how much that might mean to them.
Little Fingers Reaching
Something to Say But No Words to Say It
And Then, They Whispered about Me
See the Cancer?
Today, I Just Want To Be A Mum
Physical Toll of Cerebral Palsy
It Takes Energy to Stay Strong
Out of the Mouths of Babes
Dexter's First Month
Dexter's Cerebral Palsy
Who is Dexter?
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