When politicians get it wrong

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In 2 hours, I will go to collect Brendan Bjorn from Crumlin hospital. It’s 1 day shy of 10 weeks in hospital. While I sat here eating my morning toast with marmalade and sipping coffee, I read this article by Breda O’Brien out today in the Irish Times. I then watched the related video clip of TD Kate O’Connell speaking in the Dail. Finally, I then read the National Standards for Bereavement Care following Pregnancy Loss statement on the HSE website. I would encourage anyone reading this to take the time to read and view those links as well.

To say I’m stunned is an understatement. 

I write this piece as a woman who has experienced 5 miscarriages, one of which ended up in a D & C because the 12 week old (gestational age) baby girl with Down Syndrome didn’t pass naturally after her heart had stopped inside the womb.

I write this piece as a woman who has spent the last 14 plus years of my life caring for the very complex medical needs of my severely disabled eldest son, who has a life-limiting condition.

Watching the clip of TD Kate O’Connell this morning filled me with both sadness and anger as I listened to her ridicule the intended good works of having a National Bereavement Care program following pregnancy loss or the diagnosis of a baby with a life-limiting condition.

How dare she.

How dare she equate those wraparound support services and perinatal hospice to the horrific laundries of days past in Ireland. First of all, she should know that a perinatal hospice is not a physical place, but is the wraparound hospice support services. She should know that. As she then went on about her 3 children and her husband, she asked who would mind her 3 children at home if she was in a crisis pregnancy. Did she not just answer her own question with mention of her husband? This I say as a lone parent who has just spent 10 weeks trying to care for 2 boys in 2 different counties.

If anything, families like mine and families experiencing the heartbreaking news that their baby will not survive or will have a life-limiting illness need more wraparound supports! No matter where you, the reader, stand on the issue of termination of pregnancy, there is absolutely no excuse for not supporting these types of services – and in fact, for not supporting an increase in these types of services which will help families get through what is likely to be one of the most painful experiences of their life…that of losing a beloved child.

Now, on with my day to collect my precious son and then continue caring for him 24/7 without any wraparound support services.

Isolation once again

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Brendan Bjorn is ready to be discharged from hospital after nearly 10 weeks. The sore he developed in hospital is not much better, if at all. As such, he is once again bedridden. My heart is crushed with this development. The thoughts of him being able to once again attend school after recovering from his spinal fusion are now lost to an unknown future time. He started 2018 being bedridden for over 4 1/2 months due to a pressure sore. He was unable to attend school all of the 2017/18 school year. So far this year, he’s still not been able to attend. And now this. Another sore and life again is put on hold for him. (fyi: it’s not a pressure sore. We don’t know how it started)

I will be housebound. Again. 

Declan will be housebound for the most part. Again. 

Trapped in an old house with plaster falling off the walls and cold that is barely shifted by constantly running radiators, while surrounded by stacks of boxes waiting for the move.

Today was spent addressing the question of where will he go upon discharge. Our current rental house is not suitable or safe, just once reason is that I can’t use a hoist. He could stay in hospital, but with such a compromised immune system it’s a dangerous game of Russian roulette with his health each day he remains there. Going to a respite care centre, we thought, would be what would happen, but they are apparently unable to take him. So, rather than leave him in hospital to risk further infection, it was decided that I’ll be bringing him back here when he is discharged on Saturday. I’ve asked someone to come help me lift him – ever so carefully – from his wheelchair to his bed when we get home.

Once that is done, Brendan will stay there, in his bed, until we can finally move into his bungalow.

Bedridden, housebound. Again.

I spent a good hour sobbing in his hospital room this morning. I stood at his bedside, held his hand, and cried. I’m afraid of his sore getting worse. I’m afraid of him being back in the house that is so unsafe for his complex medical needs and condition. I’m worried that this third attempt at buying a bungalow for him will once again fall through. I’m devastated at the news received today that the purchase is on the condition that we not set the closing in December.

As I stood crying at his bedside, I was again reminded at the isolation and desperate solitude that comes with being a lone parent carer on this journey. No one who saw my tears asked if I was ok. There is no holistic approach anymore, it would seem, when caring for the needs of a disabled child. There should be. Oh, how there should be, for the parent is the lifeline of that child. The system, and often those working in it, frequently forget or ignore that important fact.

Anyway, isolation and desperate solitude is what it will be throughout Christmas. We won’t be able to go anywhere – not that any invites would be extended, anyway. Those stopped long ago. Another common side effect to this life families like mine lead. We also won’t have anyone call over – people just don’t come around anymore. I suppose that’s ok, as I don’t have any room at this point for them to even sit down.

Christmas has been my favourite time of year since I was a little girl. I still love the season. This year, though, since we won’t be able to be in Brendan’s Bungalow as hoped, and with his continued fragility of health, I’ll be looking forward to January before I even have the Christmas tree put up. This is a first for me. And I hope it’s the last time I feel this way about Christmas.

PS: I’ll aim to write a cheerier piece next time. For now, I’ll end it with a photo of a very smiley Brendan taken this morning.

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Hope and love for the week ahead

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It’s Christmastime – the season filled with hope and love. To be sure, I’m filled with much love. My 2 sons are my world and I love them with everything that I am. Now as for hope, that’s a bit more difficult to keep hold of lately.

But, I will try. I will try to hold onto hope.

Today is 9 weeks since Brendan Bjorn was admitted to hospital for a spinal fusion. One complication after another finds us still here. But hopefully he will be discharged this week. Hopefully. If he is discharged, he won’t be going to our rental house as it isn’t suitable and therefore not safe for his needs, primarily the requirement of having to use a hoist now that his spine is fused. So, it will most likely be to a respite care facility that he will be discharged until we can get into our forever home: Brendan’s Bungalow.

A few days ago, I got the very upsetting news that the second bungalow I was in the process of purchasing wasn’t going to happen. The owners decided not to sell at this time. I’ve not had much sleep since I got the news as anxiety has been getting the best of me. So, once again, it’s time to stand up after being knocked down and dust myself off. There is another suitable bungalow I had viewed in September that is still for sale. Tomorrow I will make plans to view it this week for a second time, have the survey done, and begin the purchase process…again. Third time a charm?

Hope. I have to hold onto some amount of hope that this one will work out.

We only have a few weeks to get the required, suitable bungalow and move in. The pressure and stress of that is overwhelming. Can it be done? I don’t know. I really don’t know. All I know is that my love for these 2 beautiful sons of mine will keep me going; keep me trying. I have to, full stop.

And I have to keep hope.

Hope we’ll get the house, and in time. Hope Brendan’s new sore will heal and not keep him from using his wheelchair like his pressure sore did the past 2 years. Hope the infection in the sore is now gone. Hope. There is a lot to hope for this week.

As I sit here in Brendan’s hospital room in Crumlin, it’s not even 7pm and he’s sound asleep. I look at him in awe. He truly amazes me. Would you or I go through all he’s been through and still exude the pure love and joy that he does? I have my doubts that we would. Yes, I am in awe of him. (That’s me with tears in my eyes now just sitting here looking at him and thinking of how blessed I am to be his mother)

For him.
For Declan.
For all that this week may bring.
I will face it with love and hope. 

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Trying to go home

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Today is 8 weeks since Brendan Bjorn was admitted to hospital for his spinal fusion the following day. 2 months. 2 very long months. I don’t want to go back to the hospital. I sit here in our current rental house surrounded by a clutter of boxes and miscellaneous items all awaiting a move to our forever home which hasn’t yet happened. I don’t want to be here, either.

I’m tired. To my very core, I am tired. 

I want to go home to a house we’ve yet to move into.

I want to be able to bring Brendan Bjorn home, to a home he’s yet to even see, rather than him go into care after being discharged from hospital…whenever that will happen.

I want to beg the solicitors to please, please hurry up and just let us move in this week, or next if need be, but to not delay any further.

I want to be under the same roof with both of my sons. Safe, healthy, warm and getting ready for Christmas. Together.

We need to be home.

You might not understand as I spell out my anxiety-ridden desperation in words on this page. And that’s ok. I write for myself as much as for others to possibly gain understanding and compassion for families on a journey such as ours. I’ve learned that even other families in similar situations don’t fully understand what it’s like to be a single parent with literally no family to lend support, encouragement and love. It’s not a situation that many can understand, but it does happen. There are people in this world who have no close or extended family members to be there for them. I just happen to be one of those people. And that’s ok – it’s just the way it is.

Back to the hospital.
Back to the bench next to Brendan’s bed.
Back to the fight to get him well enough to be discharged.
But to where? Will it be to our forever home? I can only hope to God it is.

We need to be home. 

 

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Another chance

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I spent the last 3 nights in the Stroke Unit at a hospital in Dublin. Now there is something I never thought I would be saying. I am home now, finally showered after having worn the same clothes around the clock for 4 days, and comfortably resting in clean, cosy pyjamas. Declan is here with me while Brendan sadly remains in hospital still struggling to have his PEG feeds increased.

In short, I am ok.

After having a CT scan of the brain with contrast & angio, MRI scan of the brain with contrast, chest x-ray, ophthalmology exam, loads of blood work and even more lights shined in my eyes than are on the Christmas tree in Rockefeller Center in New York City at Christmastime…I am ok.

I did not have a stroke. 

I have to pause and re-read that line over and over. I did not have a stroke. We still aren’t 100% certain what happened, but have an informed guess (possibly an adverse reaction to one of Brendan’s medications, scopolamine, getting in my eye). What is certain is that there is no neurological issue, damage, concerns. All is clear! I am going to take the next few days at home with Declan to rest and recharge my very depleted batteries. And, I will reflect with gratitude and thankfulness – two words that simply don’t come close to capturing what I am feeling at this moment.

As I lay on a trolley in the A&E after the ambulance brought me from the hospital where Brendan is to the hospital with the stroke unit, I was truly terrified thinking that I may not see my boys ever again. I lay staring up at the ceiling, tears streaming down the side of my face into my ears, and wondered if at any moment I would slip into a place I would never return from. I lay there alone, waiting, praying that I could be granted another chance at this journey called life so to be there for my boys as I’m all they have.

Here I am, granted another chance.

I’ve always thought life is full of lessons, and I learned more of them these past few days. I learned more about love and commitment from the elderly lady in the bed next to mine as I watched her and her husband interact after 60 years of marriage. I learned more about family bonds from the lovely elderly lady in the bed directly across from mine as I watched various family members come in and out daily bringing care items and indeed, bringing love and laughter. And I was reminded that not everyone has someone as I watched others, like me, have no family to visit them as they lay alone filled with unheard emotions and, most likely, fears.

I also learned that I need to take better care of myself. To eat better, exercise more, and grant myself time to relax. I will have to work on the last part of that lesson and tell myself it is not selfish to take time to relax. (Having said that, it must be noted that for a single parent, full time carer, this is not an easy task – and sometimes it’s impossible. This is a prime example of why carers need more supports!)

Amongst all the testing, it was discovered that my cholesterol is very high, which of course puts me at risk for stroke or heart attack. This has been a wake up call, no doubt about it. 

So, it’s time for a few days to relax. A few days to prioritize some things (like myself). A few days to reflect and begin to set out on what will be a newly gifted journey.

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The passing of time

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Today marks 4 weeks since Brendan Bjorn was admitted to hospital for a spinal fusion. Due to complications with infection after surgery and now with his intestinal system, we are still here. Time has passed terribly slowly, to be sure. It seems like ages ago since the three of us were under the same roof. And when I say roof, I don’t mean the roof of a hospital. I mean that of a home.

I ache to return to our quiet little family life.

This past week, Declan has been here in Dublin with me, staying at the wonderful Ronald McDonald House. It has given the boys the opportunity to spend their days together before Declan heads back to his Godmother’s house tomorrow with the return of school.

He doesn’t want to go.
I don’t want him to go. 
And I’m sure Brendan will wonder where Declan has gone.

Did I already say that I ache to return to our quiet little family life?

I’ve told Declan that with the passing of time – and maybe with the generosity of hindsight – we will soon be able to look back on this challenging period with a sense of relief, newly found assurance in strength gained, and an ever increasing understanding of just how much we cherish the time together we are blessed to share. And while I know he doesn’t fully grasp the depth of what I’m saying, I know he will…with the passing of time.

These last 4 weeks I’ve been pulled into the past and thrown into the future, trying to sort out what comes next, while attempting to cling to the present where decisions and care must take precedence. Housing still weighs very heavily on my mind and as of this writing is still not secured. While there is no discharge date in sight for Brendan, the pressure to have that suitable forever home ready for discharge day is no less urgent. It must be sorted, and sorted urgently.

I know, I really should take my words to Declan and let them soak into my own soul: With the passing of time, it will be alright. I just need to have faith and hope and believe that it will be. This is probably where I’m going wrong tonight, as I sit here staring at my laptop screen nearly too tired to piece together a proper sentence.

Maybe I’ll fall asleep tonight thinking of Christmas. The three of us together in our forever home, safe and healthy, Brendan looking at all the Christmas lights with wonder in his eyes as he does every year, us loving each other as we do, and looking forward to a new year with a new start for us all.

Surely, with the passing of time…hopefully not too much more time…it will come to be. 

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Getting things straight

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Three weeks ago today, my son Brendan Bjorn had a long awaited spinal fusion. After waiting over 16 months on an *urgent* spinal fusion waitlist, growing worse each week as his body crushed in upon itself, he underwent the major surgery in attempts to get things straight – his back, his lungs, his intestines, his body as a whole.

Three weeks later, he is still in hospital after a number of complications. Some of the complications weren’t totally unexpected considering his medically complex condition. Having said that, no one really expected he’d still be in hospital at this stage with unresolved concerns and no discharge date in sight. Thankfully, his surgery site is healing well now after a bout of infection. His digestive system, however, isn’t cooperating with recovery. He’s on TPN (nutrition via IV) and has had severe diarrhea for these past 3 weeks since his operation. He won’t be going home until he’s back on his formula. It’s that simple.

I know life’s path isn’t always a straight one, but at this point, I could do with a few things getting straight. The sudden turns and unforeseen detours on this journey make for some very tiresome traveling.

I’ll know by the end of the week if the bungalow we intend to buy will actually come through or not. If it doesn’t come through, then it means the search and buying process will have to start all over. And to think that for Brendan to come home to me and his brother we need to be moved into a suitable bungalow required for his complex medical care has left my head anything but straight.

One of the hardest parts about this journey is living each day in the moment while also needing to plan ahead. Make that plan ahead with the addition of a Plan B and maybe even a Plan C also in mind. Parents with special angels like Brendan are required to remain ever vigilant when it comes to organising such complex needs. We desperately try to keep things straight because our child’s life often literally depends on our ability to do so. If you aren’t on this journey but know someone who is, be patient with them as they work to try to get things straight. It may mean they have to fight and advocate for their child’s unique needs. You may think they are complaining too much or focusing on what is wrong rather than what is going right. Please understand that to get things straight, and indeed to maybe even save their child’s life, they must focus on what needs to be improved to prevent the lack of improvement causing further harm to their child.

Our path is anything but straight forward.

As I look at the x-rays of my fragile son’s back, it seems surreal.
He waited so long.
I fought so hard.
Yet there it is, in black and white: the rods and the bolts holding his spine as straight as could be done. 

Such a mixture of emotions comes over me tonight as I examine the pictures. Gratefulness, relief and hope. Fear, sadness and anger. Emotions not all of you will understand. Emotions some of you may even judge. Emotions that will resonate with a number of you…those of you who share this path that’s not so straight.

 

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