In 30 days, if all goes according to plan, Brendan Bjorn will be admitted into hospital for a spinal fusion to take place the following day. In 30 days, I need to move into a suitable bungalow and prepare for this very risky, life changing, necessary operation for my first born son. And in that time, I need to finish raising funds for half the cost of said suitable bungalow.
I am a nervous wreck. Full stop.
There is no amount of meditation, medication or mindfulness to take away this stress.
Moving – It’s not like the average person moving house. Nope. To move Brendan means moving a small hospital and arranging all new care:
- Organise a removal company (and that expense)
- Call HSE to get Brendan’s medical bed relocated to the new house
- Call the shower trolley company to move that piece of equipment
- Transfer meds to a new pharmacy
- Find a new GP immediately
- Find a new Paediatrician immediately
- Get files transferred to above doctors asap
- Set up appointment with the new therapy team (via school? who?)
- Set up appointment with OT to do home evaluation of various needs
- Order a new overhead hoist system
- And Declan…in all of this…Declan and a new school for him and all that entails.
- Nevermind the pets. They’ll just come along for the mad ride.
So yeah, I’m a nervous wreck.
I wish people could truly understand this journey, this life – even what just one day in our lives is like. It’s most often a struggle. Of course there are joys, and there is so much incredible love. Absolutely.
But inside of me, churning like a dark sea storm, are all my fears and worries.
Brendan Bjorn is so fragile. He doesn’t have just scoliosis. Doesn’t have just cerebral palsy. The list of his medical issues is very long, and each one complicates the other, resulting in his desperate fragility:
- Severe brain damage from congenital CMV infection in utero
- Epilepsy, including Lennox-Gastaut Syndrome & ESES, sleeping and waking.
- Cerebral Palsy – severe, quadriplegia
- Hip dysplasia
- PEG fed over 24 hours
- Lung disease
- Compromised immune system
- Unilateral deafness
- Chronic acid reflux
- High aspiration risk
- High pressure sore susceptibility and care
- Non verbal
- Sleep difficulties
- Sensory issues
- Unable to sit, roll, hold anything in his hands…or even scratch an itch.
So yeah, I’m a nervous wreck.
30 days and so much to sort out. So much to do.
30 days and such a risky operation for my precious boy. I’m terrified.
Some days, I just wish someone would organise it all for me, or even just a part of it, and I could just show up with the boys. The weight of it all is taking its toll on my own health and wellbeing. And guess what? Knowing the stress is doing that to me stresses me out even more! It’s a catch-22.
Now, what about that meditation, medication and mindfulness….
One thought on “On spinal fusions and other things”
Tracy, I simply don’t know how you manage from day to day, hour to hour.
Nobody can understand how much lies on your shoulders – and mind.
Keep on writing, shouting, so that others may understand, be grateful for their comparatively minor problems and see it in their hearts to help.