We've been saying we are ok.
We've been lying.
We are not ok.
We're scared.
We're worried.
We're angry.
We're lonely.
We're sad.
We're frustrated.
We are not ok.
We've learned that most people don't want to hear the truth. Some people expect us to give them our silver linings.
Some people want us to listen to their worries. And, we do. And, we support them. We try to make them feel stronger and more positive.
Our heart breaks a little, because we lied. And, we are not ok.
We would love someone to make us feel ok; to feel stronger.
But, our story is too hard. What Dexter deals with, every single day, is too much.
So, we lie and say we are ok.
And, we should be 'over it by now'.
And, 'it's just a little bump' that we 'will be able to deal with'.
Anyone who suggests we should be 'over it by now' doesn't understand the depth of our worries and heartache. They can't see behind our pretend smiles and hopeful words. They can't see the tears in our eyes, the worry in our voices and the panic in our hearts.
Sometimes, we feel judged when we speak our truths or discuss things we have been through. We 'should be over it, by now'.
So, we lie.
The 'little bump'... we have said that before, when we were trying to convince ourselves that we were ok. When we tried to convince ourselves that we were strong enough.
We lied.
None of Dexter's surgeries or battles have been 'little bumps'.
We have always said we could 'deal with it' because we have no choice.
Dexter needs us to 'deal with it'.
'We can deal with it' is something we have to do. So, we say we can 'do it' in the hopes that we will believe that we can.
Many people try to show their understanding by comparing their story to ours; to Dexter's. That usually makes us feel worse.
We've met many other families with a premature birth and NICU story, but none that lasted as long as ours or faced as many challenges as ours.
(We know some babies don't ever go home from the NICU.)
We've met many people with a family member with cerebral palsy. We only personally know a few families who have similar challenges to Dexter.
We've met many families with their own childhood cancer story. Dexter is six years cancer clear and we can still hold him and hug him.
(We know the names and faces of many families who lost a child to cancer. We will never forget them and they will always have a place in our hearts.)
We've never met a family who have fought a cancer battle and also live with severe physical disabilities.
We don't know many other families who have a child with Dexter's level of vision impairment.
Not many people in our lives understand the challenges and heartache of living with a child who is speechless.
We don't know many people who had a child need seven major surgeries in three years.
We don't know many parents who have stood hopelessly, watching their lifeless child being revived; again and again. And again.
(We do know some families who have buried their child and, again, they will forever be in our hearts.)
Dexter's life is so complex. It is 'too hard'. We understand that people don't want to hear the reality of how challenging, heartbreaking and complex it is. It must be boring to hear our continual battles. Believe us, we know! Our life is often so frustrating and difficult. But, it's our life. It's Dexter's life. We can't walk away.
When Dexter was diagnosed with brain damage, when he was thirty days old, we made a choice. We chose to find the positives. We chose to find the silver linings. We chose to be positive, even when we didn't feel positive.
That was a deliberate choice and it is something we work incredibly hard at.
Every. Single. Day.
We are lucky enough to have a pediatrician we trust and respect. He's given us a lot of bad news, but he found the aggressive cancer before anyone else.
We were lucky that Dexter got two excellent oncologists who took the time to examine alternative chemotherapy treatment plans for Dexter, so we could save his hearing. They saved his life.
We were lucky in that we had an awesome surgeon, who cut the ugly tumour from Dexter's liver. His scar is small, straight and clean. (Many of Dexter's other scars are big, fat and ugly.)
We have had many nurses support Dexter and he still loves his regular nurses.
We are lucky, because we have Zoe and Ron, who help us with Dexter's therapies.
Dexter has teachers he loves and friends he adores.
Dexter has overcome a few bouts of pneumonia and a case of pneumococcus. His little lungs were not ready, when he was born, and have caused him many problems. There are scars in his lung tissue from the pneumonias.
Dexter's circulation in his hands and feet is terrible, especially in his feet. They often turn purple or an ugly red and there is very little we can do to help him.
There are so many things that constantly go through our minds.
We are not ok.
Sometimes, we worry so much we make ourselves sick.
Sometimes, we don't sleep at night, because we are so scared.
Sometimes, we drink and swear, because we have to release our stress and worry.
Sometimes, we cry. Actually, we cry a lot.
We worry; a lot.
We are not ok.
Dexter's mum has had some sessions where she was able to speak with a mental health worker. But, Dexter's story proves to be too much, even in those situations. Lenice has made professional counsellors tear up, by telling Dexter's story and revealing her misery. And so, she has pulled back and eased their pain, only to get into the car and sob.
So now, Lenice and Andrew counsel each other. They listen to each other.
They share their worries and their stress.
They share their memories and fears for the future.
Their story is too hard and they often feel incredibly alone.
A few people are brave enough to walk through this hard life with Lenice and Andrew. They are the people who listen. They don't compare. They don't change the topic of conversation. They ask real and genuine questions. They mean it when they say 'Are you ok?' and they are strong enough to hear the truth. Some people are strong enough for the silences, when the words are too hard to say. Some people are strong enough for the tears.
Truthfully, there are not many people who can do that. To those people; we love you.
This post was written to help us heal.
We do not want to upset anyone, we just want to be honest.
We are in a bad place.
We are not ok.
We are going in to this double femoral osteotomy surgery knowing how awful and painful the last one was. We are going in to this surgery, knowing how difficult the recovery will be. We are going in to this with vivid memories of Dexter lying on the bed; still, not breathing, purple.
We are scared.
Send Lenice and Andrew a private message; let them know you hear them. Let them know you see their pain. Make them smile.
If you are not in contact with them, you can reach them via Dexter [email protected].
Surgery is set for December; probably. Hopefully, he will be home for Christmas. When he has his surgery, you could:
Go to hospital; drop in and visit. Brighten his day.
Send him a video message.
Get some coffee pods from Aldi - the K-fee brand. (Get the highest level of intensity possible! Nothing under a 13!)
Put some flowers at the door.
Tell Dexter you'll bring around your dog. (Lenice and Andrew might not love it, but Dexter will! Andrew does have an allergy to fur, so he might avoid the dog, but Dexter will love it!)
If you know the family, take the girls for a scooter ride, a park visit, a beach trip.
The best thing you can do, is listen.
Hear their pain. Give them a chance to talk, if you ask how they are.
Share a beer or a wine and a chat.
And then, share the cool things you have going on in your life. Bring a smile and some hope.
We are not ok.
We will be, because we are stubborn like that and we work incredibly hard at maintaining our mental health. We have been through so, so much. We are very broken and scarred. Our memories of the bad days are crystal clear.
We will continue to tell ourselves that we are strong enough.
We will continue to move forward.
Dexter needs us.
#DextersReality #RUOK #PTSD #cerebralpalsy #love #family
Brain Damage – Finding Out
My Birth
See the Cancer?
Little Fingers Reaching
Something to Say But No Words to Say It
And Then, They Whispered about Me
We Nearly Lost Him
Dexter’s Femoral Osteotomy
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
Dexter's First Month
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
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