A special hello to the beautiful reader.
My name is Moira and James is my 5th child – He was a gorgeous baby boy. My Chubby Bubby.
So what’s our story you ask? Well, our story was going along quite nicely, thank you.
Everything appeared to be ok on this journey we all call “Life”, with James reaching all the usual milestones for a healthy 11 month old.
I remember picking him up out of his cot one morning in December 2005, and had to lift his hand up, over my shoulder as it was stuck between us.
The next morning it was the same. And then again the following morning.
Hmmm…. that was 3 times now that his little hand hadn’t wrapped around my neck.
I took him to our GP that day.
Our GP felt it may be a pinched nerve or him having slept in the wrong position. A referral was given to see a Paediatrician but it takes a while to get an appointment.
Over the next 2 weeks my baby stopped using his arm so I went back to our GP again, who ordered x-rays. They showed nothing abnormal with his tiny arm, which I was told may indicate the loss of the use of his hand.
This was now the week before Christmas, and places close over the break, making it an even longer wait.
Our Paediatrician appointment was not until the end of January and by now I was feeling really uneasy. Thankfully, we managed to get in weeks earlier due to a cancellation.
The Paediatrician gave us another referral to see a Neurologist at The Sydney Children’s Hospital. We went to see him in mid- January 2006, and he immediately saw asymmetry in James’ little face that I had not noticed.
He ordered an MRI for the following day. We went home, blissfully unaware of what would take place the very next day. We headed back up to the hospital first thing the following morning.
My baby, now 12 months old, had his first General Anaesthetic and MRI. The result was something that no one could really prepare for.
After the MRI and once James had woken up, I was called into a little room by the Neurologist. He said it was urgent that I come in now. So I did.
As I walked in, I saw a picture on the light box on the wall. I could see it was a brain, but being totally naive, had no clue that it belonged to my baby. I saw a large white area in the centre of the scan. That image is firmly embedded into my mind.
I was asked to sit down and was introduced to a lovely lass, who was apparently my Social Worker. I tried to make sense of it all. Why did I need to sit down? Why did I need a Social Worker?
That’s where our path took a dramatic turn.
My baby was diagnosed with a Brainstem bleed.
James was immediately admitted to the Neurology Ward – Immediately! The hospital was 2 hours from where we lived, so no going home to get clothes or toiletries for him or me. He was put straight onto the ward and put on medication for a week to reduce the swelling in his brain stem, while a specialist team planned for brain stem surgery, a Craniotomy to remove the blood clot.
James had had a Hemorrhagic Stroke at the tender age of 11 months old caused by an inherited condition called Cerebral Cavernous Malformations, or CCM (Cavernomas).
Cavernomas are lesions on the capillaries in the brain and sometimes spinal cord. There are 3 variants of this mutation – CCM1, CCM2 and CCM3. We knew nothing about it until he was diagnosed.
James has CCM3 which is the most aggressive form. This condition is extremely rare, and there are only 80 – 85 cases known worldwide. James’ older brother and his father carry the gene too. There is no cure for CCM. There will be more bleeds.
This was almost 9 years ago, and over the years James has had 4 craniotomies to remove the bleeds. He has a permanent left Hemiparesis and has now lost the vision in the right of both his eyes from a bleed in the left temporal region. He also has a VP Shunt to combat the hydrocephalus. He has epilepsy and to complicate things further, he suffers with daily headaches. Multiple daily headaches.
He has had many many stays in hospital ranging in length from a week to 3 months.
My boy has had many tests and been cared for by many teams.
When you go through something like this, it’s so important to take time for physical and emotional healing.
The physical healing can take some time because James also fatigues very easily. Reading is tiring, sitting upright is tiring, walking is tiring. Things that we all take for granted exhaust James.
But dear reader, do you know what James doesn’t get tired of? Seeing the Clown Doctors come into his ward. Even when he is exhausted, he brightens and his face lights up as soon as he sees them. His laughter is very loud and very cheeky and it’s such a joy to hear.
The Clown Doctors – taking care of the emotional healing that is vitally important to the physical healing.
The Clown Doctors – giving us laughter when we are down and colour when it’s gloomy.
Giving the gift of laughter and colour, lifting our spirits and helping us find our happy place, even in a horrible situation.
The gift of bubbles….bubbles… tiny bubbles being blown about to be popped resulting in giggles. Giggles with every pop.
Giving awesome shoulder massages (parents and families need love too!)
Laughter is the best medicine they say? Yes it is!
I have lost count of how many doses of laughter have been administered to James. He has been a patient of the Clown Doctors for many years now and they have made such a difference to his hospital stays. The admissions can be quite overwhelming, with home and his siblings and friends often being many hours away. Our family unit is often torn apart by various illnesses.
Even short stays can be quite challenging to begin with, getting used to a hospital atmosphere and attempting to keep some normality when there is none. Each family finds their own “Normal” when in hospital. It can be a whirlwind of nurses, doctors, allied health teams, medications, procedures and tests. Rotations of the staff mean the faces and names can change. Wrapping one’s head around the medical terminology is daunting, but gets easier.
What does not change?
The glee that the Clown Doctors bring with them and the smiles which lead to laughter and belly chuckles. The bubbles… the toilet paper… the jokes….. the shoulder massages for me. The physical distraction. The beautiful people who are The Clown Doctors. I cannot thank them enough for all they have done for James over the 9 years he has been a patient.
James is treated as both an inpatient and an outpatient, so even once we are discharged and back home, there are many appointments to go to in numerous hospital and clinic departments. It’s never fun going back for tests and assessments, but there have been times when we have gone up for an appointment as an outpatient and James has seen the Clown Doctors in the corridor as they make their way to the next family in need of some smiles. He waves madly at them and shrieks with laughter. Even seeing them in the corridor leads to so much happiness.
So for our family, James being discharged does not mean that is it for James. It means this is it for now and we come home, to be together again as a family until next time.
This is James story and it is ongoing.
May I ask the dear readers something? Can we please keep the Clown Doctors ongoing too? We and many other families need them there to lighten the load of our sick children.
Without them, the hospitals would be lacking vital healing power.
Thanking you so much for your ongoing support of The Clown Doctors.