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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Here’s to the next 2 months

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It took pressure on social media and in the press. It took a complaint to the hospital’s patient advocacy department, the Ombudsman for Children’s office, and the Minister for Health. It took over ONE YEAR and TWO MONTHS. But finally, a date has been set for Brendan’s spinal fusion –  8 October 2018.

If the surgery actually happens on that date, it will be just over ONE YEAR and FOUR MONTHS since first being placed on the (so called) urgent spinal fusion waitlist. He got on the list 1 June 2017. He was 12 at the time. He will be 14 by the time he has the operation. Again, IF he has the operation on that date.

I say IF because a number of factors could delay the surgery – 

  • If there are no ICU beds available on the day
  • If another child has an emergency surgery
  • If another child needs a second surgery before him
  • If he gets ill
  • If his skin breaks down from the ever-worsening crease developing along his right side waist area.
  • If anything like these scenarios above happens, his surgery will be delayed.

I know, he finally has a surgery date so I should be happy. I am…sort of.

I am still very angry that he has been allowed to grow worse, his body betraying him even further, in discomfort and physical restrictions, for what was to be no longer than a 4 month wait. Instead, so far it’s been a year longer than the set out 4 month guideline.

Why? I don’t know. I still have not received an acceptable answer. And maybe I will need to wait until after his surgery and recovery period before I have the energy to demand the answers in full, but be sure that I will.

So here I sit tonight, exhausted. Scared, worried and relieved. Angry, happy and terrified. I’m a bundle of nerves and emotions.

Today we met with the anesthesiologist. Brendan was cleared as being fit for surgery and we discussed the operation and recovery process in more detail. This is what now has me terrified. Talk of intubation, high risk of pneumonia or infections, ICU and me not being able to be with him but only during certain visiting hours (that is ripping my heart out just to write it!), an IV line in his neck, and him maybe being in the hospital for up to 6 weeks. I looked at Declan. What am I going to do during those 6 weeks? I can’t be two places at once. I can’t leave either son.

I’m crying just thinking about it now. 

I suppose I shouldn’t worry about it now, but I do. I need to make plans, make arrangements, and then make plan Bs just in case. I’ll just have to figure it out, like everything else. For now, and for the next 2 months until the hoped for surgery date, I need to focus on
1. moving into that forever, suitable, disability adapted bungalow for Brendan 
2. keeping Brendan healthy and his skin intact…and lest anyone forget,
3. Declan and all he needs as a 10 year old boy who sacrifices so much to his older brother’s demanding needs.

Here’s to the next 2 months. May they go smoothly, may we all stay healthy, and may the weeks lead quickly up to a surgery that is successful and without any complication so that my precious first born son’s life can be transformed and saved in so many ways.

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Brendan Bjorn today after his anesthesiologist appointment and blood work

 

 

Sorry Brendan, but you just need to wait.

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I’m sorry, Brendan, but you need to be patient. Just keep laying there in your bed in discomfort as your scoliosis grows worse. You need to wait…longer still. You need to understand things don’t happen overnight. Take it handy, as they say. Just wait. And while you wait, hope you don’t get to the point where you’re no longer a suitable candidate for a spinal fusion because you’ve developed an open wound in the crease of your increasingly bent side where your lower ribs hit your pelvic bone.

Sorry Brendan, you just need to wait.

I’m sorry, Brendan, but you need to be patient. There is no answer being given as to why you’re not yet on the operation schedule. There is no answer being given as to if you’ll be put on it for next month. There is no answer being given as to if the consultant can ring to say why you have waited over 14 months now, and why you continue to wait. There is no answer as to if anyone is in the office today. There seem to be no answers.

Sorry Brendan, you just need to wait.

I’m sorry, Brendan, but you need to be patient. I know that you want to be able to have a shower, to get out of your bed daily so you can sit in your wheelchair and go for a stroll, but there is no way to use a hoist in this rental house. You just need to wait for the snails pace it takes to purchase a home that will be suitable for your medical care. You just need to wait, unshowered and unable to be safely transferred…wait.

Sorry Brendan, you just need to wait.

I’m sorry, Brendan, but you need to not worry about if you’ll be separated from me and your beloved little brother once you do have your operation if we don’t have the suitable home bought and set up for you in time. You’ll just need to be patient as you wonder where I am, unable to speak, no one sitting with you 24 hours a day, in pain after such a major operation, no one who can read your every whimper and every facial expression. You’ll just need to wait alone in a hospital room if you begin to aspirate or have a seizure and I’m not there with you while I am away trying to be present for your brother. You’ll just need to be patient while you lay there wondering why you’re not at home with your family…your world.

Sorry Brendan, you just need to wait.

I can’t bring myself to tell Brendan all of this, yet this is what I am being told. If you tell me these to wait for what needs to be done, at the end of the day, it isn’t me who is being told to wait – it is Brendan. Could you look in his eyes and tell him to wait?

How can I wait? How can I be patient, when so very much is at stake? How can I be patient or stay calm? Look into those eyes, and tell him to wait.

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I’ve never. But what I have.

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I’ve never had a pedicure.
I’ve never had my hair coloured at a salon.
I’ve never had a day at a spa.
I’ve never been on a cruise ship.
I’ve never flown first class.

But what I have done in my life so far has prepared me for this journey I am on. Indeed, everything in my past has led me to this moment, and has prepared me for the challenges here now and those surely yet to come. Preparation worth its weight in gold.

I’ve never known the feeling of security that comes with having the safety net of family being reliably there through thick and thin.
I’ve never known the peace of having a family without neglect or abuse or battles always waged.

But what I have done is become a mother after four losses, and then again for a second time after a fifth loss, and in doing that, I was given the priceless gift of having my own family. And with that gift of family, I can say to my sons, You are safe; In our home we won’t wage battles; and I will be there for you through thick and thin.

I’ve never regretted as much as I have lately the choices made with my heart when I should have used my mind.
I’ve never been so humiliated as I have lately as I feel like I’m now only a fraction of who and what I used to be before this journey took its heavy toll, no longer standing on my own two feet, but instead I’m found on my knees.
I’ve never wished I could turn back the clock like I do as of late, but alas, it’s a useless wish to have.

But what I have done is stand back up when all I want to do is crumble again.
But what I have done is give myself over to my sons’ present and to their future.
But what I have done is something neither of my own parents could find within themselves to do.
For what I do, I do for love…for Brendan Bjorn and Declan.
And my heart is full because of them. 

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Being sorry…or not.

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This morning before the boys woke up, I sat at my laptop, drinking coffee, and thinking about…well…about life. Mainly about the bungalow and related fundraising. But overall, I was thinking about life.

And I began to sob. A full on, ugly cry. You know the kind.

I was praying, you see, and wondering if God was not bringing the boys what they need in a bungalow because of any of my past wrongs, my current flaws, or simply everything I’ve ever done or do which I should be sorry about…and indeed, am sorry about.

I begged for forgiveness.
Again. 

Now, I know full well that a loving God would not, does not, put children through hell because of anything their parent may do. But there I was anyway, being so sorry. I must have said “I’m sorry” a couple dozen of times in between mumbling about what a failure I have been at providing for my sons’ needs. I’m so sorry…I know they deserve better than me…I’m sorry…(sob, sob, sob)

I finished my cry. I finished my prayer. And I finished being sorry for being less than they need…at least for now.

To my friends and the public who I’ve annoyed with the humiliating begging as I ask for help…I am sorry. Some of you understand. Many of you don’t. Whichever one you are, just know that I cannot wait for this all to be over. I hate it with a passion and each day it eats at me inside because it reminds me that I have, in this way, failed these two most precious gifts that are my sons.

To those of you who have been unsupportive, and indeed those of you who have actually been hurtful with your words, to you I still say, I am sorry. I am sorry for you and your closed minded hatred, but even so, I hope you are never in this position.

Just before I sat down to write this, I had been in changing Brendan’s nappy. Let’s just say it was a major job, this one. I had to gently roll him over to clean his back. When I did, I noticed the bend in his right side was even more pronounced than it was last week. The crease a darker red. Oh my God, Brendan Bjorn…I am so sorry baby! I said, even though the fault is not mine. I took a photo and sent it by email to no less than 5 people associated with his spinal surgery team. No more delays. September. He can’t wait any longer. And I did not say I was sorry. I am not sorry. I am angry, disappointed and disgusted that he continues to decline, now waiting over 14 months on what was erroneously called an *urgent* waitlist.

As I look at his back, and now at the photo, my feeling sorry about any or all of my faults is replaced with determination. It has to be, and this is something I think many people don’t understand about me. I will go through hell and back to make sure we secure the bungalow and it is ready for Brendan to come home to after his surgeryand that the surgery must happen next month. BOTH of those things have to happen. Full stop.

I won’t give up, and I won’t be sorry about the fight I put into either of those goals. 

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Birthdays missed

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Today, 30 July, is my mother’s birthday. She would have been 89 if she had lived. Instead, she died from lung cancer in 1990 at the far too young of an age of 60 years, a few months after my 24th birthday. I sit here this morning, still trying to recover from a lung infection that has knocked me off my feet, and I wonder so many things.

What if she didn’t get cancer and she had lived?

What if she had at least lived long enough to meet Brendan Bjorn and see this journey we are on?

What would she say? What would she do?

Would she be proud of me as a mother to my own children? Or would she have criticisms to voice?

I miss her. Even after all these years, I miss her. 

One of life’s lessons I’ve learned is that the closer we get to our own mortality, the more clearly we understand how truly precious – and fleeting and fragile – is life and the time we have to live it. I realise that’s all been said before, so I risk being cliche, but it is true! And those of us that walk a journey with a child who has a life-limiting illness, understand that poignant lesson all too well.

Life takes each of us on unique journeys, yet, at the core of them all, a common thread unites us – the thread of love. We all smile at joy, shed tears at loss, and long to be loved and love in return. She loved me. And I loved her. Those sparkling, bright blue eyes that would disappear into a squint when she laughed – That’s what I’ll remember most today as I look into the eyes of my own two children. I’ll remember love. 

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Our last photo together. Joan, my mother

Happy birthday, Mom….and thank you for the lessons you taught to me, in your living and in your dying. Forever and always, I love you.