It’s that awkward week between Christmas and the start of a new year. The big holiday is over and we get ready for everyday life to resume in 5 days time. Of course for carers, we are still working daily caring for the loved one whose life we are dedicated to saving. Still, I think this time between Christmas and New Years Day has always been one of reflection…at least it is for me.

Reflection and looking ahead.

As I reflect on 2018, I can honestly say it was one of the most challenging years I have ever had in my life. The year started with Brendan Bjorn being bedridden due to a pressure sore, and the year will go out with the same. In between, he saw the complications of cruelly delayed scoliosis surgery. Then post op, he saw 2 and a 1/2 months in hospital fighting various infections and trouble with his intestinal system not accepting PEG feeds again. Somewhere in that extended hospital stay, I found myself in the Stroke Unit at another hospital wondering if I’d ever see my boys again. Thankfully, it wasn’t a stroke. And while another health issue was discovered, it is one that I should be able to control (if I can control my diet, that is!). Yes, this year has been hell in many ways: Being apart from Declan for so long; Living in an unsuitable rental home that has restricted me from being able to use a hoist for Brendan’s care; Emotional, physical and financial struggles; and more.

As I look ahead to 2019, I have realised there is something I must do, not only for myself, but in turn for the boys as well. I need to forgive myself. I need to let go of some of the things in the past that continue to bring me guilt, self-disappointment, and regret. It won’t be easy, but it’s dawned on me lately that if I continue to beat myself up for bad decisions I’ve made in the past, I won’t be truly free to enjoy the future. You see, I’ve trusted and believed certain people when I shouldn’t have and I made life decisions based on that trust. It resulted in struggles the boys and I certainly didn’t need. I paid the price, but worst yet, the boys have paid the price…and that has been tearing me to bits inside.

So here I sit today, seriously contemplating what good it will do to continue berating myself for those regrettable decisions. It’s not fair on Brendan Bjorn and Declan. And frankly, it’s not fair on me, either. My heart was always in the right place and I based decisions on love in my heart, and that is what I need to hold onto – and remind myself of – when I reflect. I am going to work on simply letting that negativity toward myself go.

The boys and I have SO MUCH to look forward to for 2019.

We will soon be moving into our forever home, a bungalow for Brendan where his complex medical care can be safely managed. Where Declan can grow up in a small village setting and learn what community spirit is all about. Where I can finally let go and breathe knowing this will be it – our final move in what has been a recent history of far too many moves. And to be sure, it is all thanks to the kindness of friends and strangers and indeed the person who has anonymously helped me beyond belief.

I will never be able to find the words to capture my gratefulness.

So here’s to 2019.
A new start.
A new life.
A new home.
A family on the mend.
A family mindful of the blessings.
A family full of love. 

 

There was a knock at my door today. The postman handed a box to me. Straight away I saw the word “posten” on the box and the stamp marked “Norge.” It’s been a hard couple of days for me emotionally for a number of reasons, so this was truly perfect timing. Serendipity maybe. I couldn’t open the box fast enough.

Norsk sjokolade og honning fra familiens gård.

Norwegian chocolate and honey from the family farm.

As much as I love chocolate and honey, seeing the beautiful photo of my cousin’s baby on their Christmas card was the best gift of all. What joy at seeing how much she’s grown just since July when I saw her last! And to see the happiness in the faces of her parents, whose journey as parents has just begun, made me overwhelmed with emotion. I cried (easily done, I know). That is family, I thought. That’s my family. Sure, they are my third cousins, but as I don’t have much family to speak of, these wonderful people are the closest family I have. I truly look forward to seeing them all again soon.

It’s an unusual situation to be without parents, without extended family, without siblings that you’re close to, and being basically a family unit alone in the world. It’s just me and the boys. That’s us. Our little, loving, family. So, I treasure the relationship that continues to grow with my cousins in Norway. They provide me with a sense of connection; a feeling of grounding; a reminder that there is a place in this vast, crazy world where there is a familial homeplace going back generations…a place I am always welcome. That brings me some peace of mind.

It’s not just sjokolade og honning. It is familie. And that means the world to me.

Do you know someone who cares full time for a disabled child or loved one and are unsure what to do for them for Christmas? We carers can, after all, be a tough lot to know what to do with when it comes to the holiday party invites or gift giving. As many of us can tell you, invites out often stopped years ago. We just can’t get out unless there’s either a family member who can care for our disabled child or a nurse available to provide respite. Some of us, like me, don’t have a partner, family or in home respite nursing available, so friends tend to just know an invite can’t be accepted – so it’s simply, sadly, never given.

Don’t give up on carers. There are a number of ways to show them you care at Christmas.

Here are some ideas:

• Drop in for a visit, especially if the carer is homebound the majority of the time. Loneliness at Christmas can be especially difficult for a carer.
• If you can’t drop in for a visit, pick up the phone. Chat. Ask them how they’re doing. And listen. Really listen.
• Send a card with a gift voucher to help with expenses. Carers of a disabled child or other family member have expenses out of the norm which most people don’t realise – extra heating oil; extra electricity used in the amount of daily clothes washing, running motors on beds and equipment, etc; paying for groceries to be delivered; higher insurance costs for accessible vehicles; and much more. If relegated to social welfare as a full time carer, that adds to the financial strain with the extra expenses.
• Time. Are you willing to learn how to help care for the carer’s disabled child so to give them a break on occasion?
• Gift basket. Many of us run on coffee, tea and chocolate. How about putting together a lovely little basket filled with the carer’s favourite drinks and goodies?
• Offer to run errands. If you have the time (or can make the time), consider asking the carer you know if there are any errands they need to have run, but they can’t get out to do themselves. Remember, we’ll probably say no at first, but there’s bound to be something that needs done.
• Connect with them. Be it in the Christmas card or in a letter or on the phone, let them know that you see what they do every day and provide that recognition. Not patronisingly, but genuinely and compassionately let them know you are there for them while they are there for the child they are caring for around the clock. In short, simply letting them know they are being thought can be just what they need to make their often isolated day a bit easier.

 

 

I was just chatting with a new follower on Twitter. A fellow full time, unpaid carer parent of a disabled child. In our brief chat, I said this:

“I’ve often joked (can it be a serious joke?) that carers need a union. Then maybe we’d be heard.”

Honestly, it is a good idea. But I just realised there’s a problem with my good idea:

WE HAVE NO LEVERAGE.

What would we, as carers, do if we did have a union? Our union reps could go to the bargaining table with the State and demand the desperately needed supports for us…but what would our bargaining chip be? We don’t have one, do we?

Government leaders (those who have the power to actually make our lives and the lives of our disabled loved ones fair, manageable and dare I even suggest a positive life experience by being properly and fully supported in the 24/7 work we do) know that we don’t have any bargaining chips…or do we? 

We have one: Bringing our disabled child (of whatever age, that is) to our local A & E department and saying, “Here, I’m on strike. You take him/her.”

*And yes, I’ve seen this discussed in carer groups on more than one occasion. This is how in crisis so many of us truly are*

Here is where the emotional blackmail of carers comes into play. Government leaders know full well that the vast majority of us would never do that. Even though we’d collapse an already overburdened hospital system and surely we’d then be heard, they know we wouldn’t do that. Why? Because we love our child too much to do it…they know it and count on it. 

They have us right where they want us: Emotionally tethered to remain in the home caring 24/7 with little to no respite help; barely making ends meet; being housebound for weeks on end at times; often fighting depression and/or anxiety; no retirement; no pension; often no social life at all; all while many of us are destroying our own physical and mental wellbeing for that of our precious, beloved, child. Because we love our child that much.

Yes, they know most of us would never place that one bargaining chip of the A & E drop on the table, and so they play their hand in advance of us even taking a stance – a hand which is surely nothing short of the emotional blackmail of carers. 

Carers union, anyone?

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.

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.

 

 

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.