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. 

 

 

Literally sick and tired, but I’m going to look at the positive side!

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Yesterday, I finally dragged myself and Declan into the GP. We both have lung infections (a nondescript term for what I think, based on past experience, an xray would show is early pneumonia or pleurisy in me). Call it what you will, I am literally sick and tired. Coughing non-stop which is accompanied by a pain in my right lung. Four different medications on board and to say they make me dizzy is an understatement. But, I know that in a few days time I shall be on the mend and feeling better. In the grand scope of things, this is minor.

What isn’t minor is a delay in Brendan Bjorn’s spinal fusion.

Yesterday, not only did I go to the GP, but I received a phone call letting me know that Brendan’s URGENT SPINAL FUSION has been delayed. The delay is due to 1. Emergency cases taking precedence and 2. The consultant’s annual leave in August. What can I say, honestly? I can’t argue with emergencies and I can’t argue a surgeon having his annual leave. Right? Right. So, I won’t. Consider my tongue being bit. (It’s rare enough, so enjoy it while you can)

But I will say this: Having to watch my son’s scoliosis quickly progress over the past 13 months since he was deemed to need an urgent spinal fusion, is desperately heartbreaking. 

It is all I can do now to keep the ever increasing fold between his right lower rib cage and the top of his pelvic bone from creating a skin breakdown. The crease grows more red each week. Oh yes, I’ve been on this journey of creative parental medical interventions for 14 years now (my fellow SN parents will understand this all too well), so I can manage for another couple of months. But, should I have to? Should Brendan have to wait so long with such delays? I think the answer is no. 

Having said that, I will focus on the positive for now:

  1. My boys and I can look forward to August now hopefully being spent moving into a suitable, forever bungalow and preparing it in advance of Brendan’s surgery rather than during his surgery.
  2. The amazing generosity of the anonymous angel who is loaning me half the cost of the bungalow considering I cannot qualify for a bank or credit union loan as a technically unemployed full time family carer relegated to social welfare. As I said in an earlier blog, it’s the stuff of fairytales.
  3. The compassion of the people who have donated and continue to donate to the #BungalowForBrendan fund trying to raise the remaining balance on the bungalow that the private loan won’t cover. My heartfelt thank you can never do justice to the emotion and gratitude behind my words.
  4. Brendan’s health. Despite the scoliosis, despite the increase in seizures with this awful heat, he is indeed well. He is fit for his spinal fusion. He is happy, healthy and continues to light up our lives with his smile, laughter and unconditional love.

The plan for our week? Get over the lung infection. Finish the fundraiser. Wrap up the purchase of the bungalow. And then the truly hard work begins – scheduling the move and all that means…transfer of doctors; transfer of pharmacy; transfer of disability services; transfer of 2 different schools; coordinating appointments with new OTs, Physios, and the likes; scheduling the move, including the move of his medical bed by a different company; obtaining an overhead gantry hoist system ASAP for Brendan; and so much more. 

But, we will do it. We have to. And we will give it all we’ve got. 

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Lessons from other lands

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While Brendan Bjorn was in respite at the amazing LauraLynn Children’s Hospice last week, I spent a few days away to recharge my totally depleted batteries. If I think about it, I’d say my batteries needed changed, not just recharged! Whichever, while it was too short, it still did my heart and head good. Now it’s time to look ahead to what will be a busy summer with Brendan’s spinal fusion due to take place and with what I hope will very soon be a permanent move to the bungalow we have secured with a deposit in County Wexford.

Here’s hoping that I recharged those batteries well enough.

Before I look ahead, I want to put pen to paper on this past week away, for there is always something to learn in life, I believe. We as a society, as a culture, should be able to learn from others without defensiveness or insult. We should be able to accept other people into our fold without belittling or excluding those who are different. Here is why I’m starting off with those thoughts: 

A couple of weeks ago, I was on the phone with someone who made a point to remind me that I am not Irish. In fact, because I am very interested in genealogy and had my ethnicity DNA done a number of years ago, this person reminded me that I am “only 4% Irish” in my DNA makeup. Ok…so what? Should it matter? No. Does it matter to some people? Sadly, yes.

Fast forward to last week, when I was sitting around a dinner table with cousins in a different country. (Do I need to add my DNA ethnicity is 44% for this particular country? No, I didn’t think so, but for those who are keeping track, there you have it…I say with a giggle) Champagne was opened, a proverbial feast of traditional foods laid out on the table, and best of all, laughter and conversation flowed freely. Sitting outside overlooking the countryside while we had our dessert of fresh strawberries and ice cream, the newest member of the family – just 3 months old – entertaining us all, while the sun was working its way down the sky was pure bliss.

God how I needed that time and connection!
May it last me for the months ahead.

What I really want to share with you, dear reader, is what we can, and should, learn from other countries. As I mentioned earlier, we as a society should be able to hear these suggestions without defensiveness, without excluding who is speaking because they “are only 4% Irish” or for any other closed-minded or nationalistic reason. Let’s listen. Let’s learn.

And then let’s try to improve what needs to be done to better support families who have disabled children.

I was telling my cousins about how many homeless we have here in Ireland, and how thousands of them are children. They were literally speechless. Momentarily, that is. In Norway, everyone who wants a place to live will have a roof over their heads. End of.

I was telling my cousins about how I get no in home nursing assistance because the 2 available nurses didn’t want to take the 5 hours per week allotted for various reasons. Again, momentarily speechless. In Norway, considering Brendan Bjorn’s very profound care needs, at the very least I would have full time nursing care available in the home while I was at work, but most likely I would have it 24/7 so that I could also get out of the house for not just work, but to…to have a life of my own, as well. The way we are doing things here in Ireland is inhumane and in many ways, cruel and unsafe for all family members. Can you see how it would benefit the society as a whole, too, if parents like me were able to continue with their careers?

I was telling my cousins about how I am resigned to humiliating myself by doing crowdfunding to raise money to purchase the suitable bungalow that Brendan Bjorn requires because the housing waitlist is many years long across Ireland. In Norway, that suitable type of housing would be provided for us so that he could receive the best care needed, and my own health could be saved from having to care for him in an unsuitable, unsafe environment where I can’t even use a hoist.

I was telling my cousins about the whole 4% Irish ethnicity thing being thrown in my face. That was the one time they weren’t immediately speechless. Thank God for laughter in the face of ridiculousness. 

Now, if anyone reading this is getting defensive or annoyed at me and my 4% Irishness (yes, I say that sarcastically to make a point), please, don’t.

Just stop and listen.
Then let’s ask what are we in Ireland doing, or not doing, that they are doing in Norway? How can we improve what we are doing?
Is it a cultural and/or society viewpoint that needs changed as well as governmental policies? I think the answer to this last question is YES, by the way.

I end a week away with a heart that has been refilled with peace and love and laughter and purpose. I look ahead to the summer that will be filled with hard work and what will be extremely trying times, to be sure. But I’ve no doubt, though, that my 2 amazingly precious sons and I will see it through, together. 

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