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.

 

 

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.

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. 

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 surgery – and 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.