Dear Simon,

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I’ve just spent the last hour crying. There is a good reason we carers are referred to as #carersincrisis, you know. Because we are in crisis, have no doubt. What sent me into a stream of tears? Well, upon doing my son Brendan’s cares this morning, I found that he has yet another skin breakdown. Please, keep reading so I can explain why I’m crying; why I’m so angry.

Today is 3 weeks until his tentatively scheduled spinal fusion…after waiting on the urgent list now for over 16 months.

The skin must be healed by then or they won’t be able to do the operation due to infection risk having an open wound.

Simon, do you understand the implications of this new development? Do you understand that if he had received the spinal fusion within the 4 month time frame, these skin breakdowns would not even be occuring because his body wouldn’t be continually crushing in upon itself from the ever-worsening scoliosis? And do you understand that if he declines to the point of being unfit for a spinal fusion, he will die a slow death betrayed by his own body? 

Do you understand that it feels like my heart is being torn out of my own body as I look at my precious first born child laying on his medical bed suffering? Do you?

Simon, my son turns 14 years old 2 weeks from today, on October 1st. I have given everything I have, and then some, to assure Brendan receives all the proper care, attention, love and everything else required for his complex medical care. So please hear me when I say this: His current skin breakdown, his current medical complications from the scoliosis, and his current suffering, are 100% not my fault.

They are the fault of a broken system that is leaving children like my son to decline until they are not even fit for the surgery they need. 

And that is nothing short of barbaric and inhumane.

In the next 3 weeks, I will use all of my skills and experience to see this latest skin breakdown healed in time. It isn’t in an easy spot to heal, especially considering there is also an area of vulnerable skin on the verge of again breaking down going from his right side all the way around to mid-back at his waist. This latest skin breakdown is on his left groin area where his leg meets his torso.

You see, Simon, because of the worsening scoliosis, his left leg is even more out of socket than it was on June 1, 2017 when he was first placed on the urgent waitlist for a spinal fusion. And, his lower ribs are pushing down on his pelvic bone. All of this causes an exaggerated deepening of creases.

Had Brendan’s spinal fusion happened last year as it should have, NONE of this would be happening now.

That’s worth repeating.

Had Brendan’s spinal fusion happened last year as it should have, NONE of this would be happening now.

I’ll end this blog piece asking you to truly empathise…put yourself in my shoes. Maybe even go home to your wife and read this blog piece to her. What if this was your precious first born child? What would you do? You’d never have let this happen. That’s what you’d do, I have no doubt.

So please, fix this, not just for my son, but for all of the children in Ireland who are suffering inhumanely. Now. 

 

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On spinal fusions and other things

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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
  • Scoliosis
  • Osteoporosis
  • 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….

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