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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