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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A tale of 2 boys, 2 weeks on.

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Two weeks ago today, Brendan Bjorn underwent a spinal fusion. Tonight, as I type this blog piece, I sit here in the dark of his hospital room on the bench which has become my bed. I’m wearing the Harry Potter pyjamas bought while with my younger son, Declan, while out spending some rare one on one time with him awhile back. And I’ve been crying. In fact, not long ago, one of the nurses came in and discovered me sitting here doing just that, much to my embarrassment.

I’m supposed to be stronger than this.

About an hour ago, my long time friend of over 2 decades – who also happens to be Declan’s Godmother – sent me 2 photos of Declan sporting a new haircut and new outfit. Even new runners. He looks smashing! I have 2 incredibly handsome boys (I say in a mother’s unbiased tone).

And I cried. 

I don’t know if many will understand why I cried. There are actually a number of reasons: I miss him terribly; I wish I could afford to pay for a barber every month – rather than the not so great home haircuts I give; I wish I could afford to buy him new clothes and runners from a sports shop instead of a grocery store; I wish I could be in 2 places at once with both boys as they both need me in such different but equally important of ways.

I wish so much. And sometimes, wishing hurts when those wishes can’t be fulfilled.

Directly in front of me at this moment, while I sit here in the dark, I see the monitor I’ve been watching with worry all day. His O2 sat remarkably great at 100%. That’s even better than mine! It’s the heart rate today which we are keeping a close eye on. The green glow of a too low rate in the mid-50s shines out at me. Brendan is moaning and grinding his teeth, clearly feeling miserable. Most of the day he’s been asleep, not even able to easily rouse him. Far too pale. Low temperature (which tonight turned into a fever). Continued issues with his bowel movements since his surgery 2 weeks ago. X-ray, blood tests, ECG, physical exams – all done today with no telltale results.  We are all thinking maybe it is a lack of nutrients as he hasn’t been on his formula feeds since last week because of the GI issues. But as he continues to have the GI issues, they are starting him on IV nutrition called TPN. And tomorrow, if the TPN is to continue for more than a day, they will once again place a new central line as TPN is hard on the veins. Yet another infection risk. Yet another worry.

My heart is in two places tonight. One half rests with the son only a few feet away from me, who thankfully is now fast asleep. The other half of my heart rests with the son who wants to be here with his mother and brother but simply cannot be.

both boys oct 22 2018

 

 

14 years

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Today, my precious, fragile, beautiful first born son, Brendan Bjorn, turns 14 years old.

And I am in awe of him. I know many parents might say that about their child. We are certainly not an objective group. But I truly am in awe of my son. Despite all of his challenges, the physical pain, the hardships – he loves. He is love. He exudes love as he looks up at me and that smile grows ever bigger while his blue eyes work their way into a smiling squint.

And you can just feel the unconditional love of the angel that is him. 

Yesterday, I made a video (see here) to celebrate his journey thus far. As I rummaged through the plastic storage box which holds memories from his early days, I was brought to my knees.

My old journal that I started on January 30, 2004 – the day I found out I was pregnant with him.

Photos of me every month as I grew bigger with a child I had no idea would take me on this journey.

October 1, 2004. 

I still wish that I could look back at those photos and have it not be bittersweet, but rather just be sweet. But, it isn’t. After 4 miscarriages, to give birth to a child that the doctor tells you is perfectly healthy, is total elation! But, to look back at those photos 14 years later – with the often cruel wisdom of hindsight – and see your former self reflected back at you now…it is different. It is bittersweet. Because the me from today knows what the me from that glorious day didn’t know: That within a month’s time, my world would come crashing down as my perfectly healthy baby boy was diagnosed with severe brain damage from congenital CMV (cytomegalovirus).

October 1, 2018.

Today.
Today is a new day. My warrior angel Brendan Bjorn lies sleeping peacefully in the room next to me as I type out my thoughts in this blog. I will soon go into his room, give him the morning round of kisses and cuddles, and receive that gift that is Brendan. Like I said above, it is me who receives the biggest gift today. Later, his brother Declan and I will bring in his balloons (which are absolutely huge!) and sing happy birthday to the other half of our hearts…and I will continue to mask my worry and fear that how in a week from today, Brendan will be undergoing his biggest battle yet in the form of a spinal fusion.

Yes, today is about celebration! I wish all of you reading this could feel the love in the room that he radiates to all near him. Hopefully the birthday video will give you all a glimpse into the blessing that is Brendan Bjorn.

Happy 14th birthday, my angel, my baby boy, Brendan Bjorn! 

brendan newborn with me

Social housing waitlists for those with disabilities: 2018

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Last April, I wrote a blog piece about social housing waitlists for people with disabilities based on the 2017 Social Housing Report. The 2018 Summary of Social Housing was released this week. Today’s blog piece is basically a copy of the one from April, but with the updated figures for 2018. May those who can affect positive change in this area listen.

The questions that remains are this:
Why are so many people with disabilities waiting for social housing?
Why are we leaving society’s most vulnerable to languish on these lists? 

Because of my son, Brendan Bjorn, who is severely disabled with profound care needs, I am on the disability-modified housing wait list, but let me be clear right from the start of this piece, my family is NOT included in the statistics I am about to discuss. Why not? Because if a family is availing of HAP, as just one example, the Department of Housing does NOT include them in their housing figures because they are then considered to have their housing need met.

I start this piece with the above information because it is a tremendously important omission – and dare I question, intentional? 

To get a truly accurate picture of just how many people with disabilities are waiting for suitable, modified social housing, it is my opinion that the Department of Housing MUST include everyone who is currently deemed to have their housing needs met. Clearly, their needs are NOT met or they wouldn’t be seeking DISABILITY SUITABLE HOUSING from their county council. 

With that logical clarification, let me move on to the statistics. Again, keep in mind families like my own are NOT included in these figures because we are currently availing of HAP on the private rental market (albeit in a completely unsuitable, unsafe house that is over 100 years old in which I cannot even shower my 13 year old son).

*All statistics are taken from the Summary of Social Housing Assessments 2018 published by Rebuilding Ireland in September 2018 using data compiled in June 2018*

In this report, disability is divided into 5 categories: Physical, Sensory, Mental Health, Other, and Intellectual. The total amount of households with disabilities shown waiting for suitable social housing is 5,095. The breakdown is as follows:

  • Physical – 1,696
  • Sensory – 361
  • Mental Health – 1,522
  • Other – 42
  • Intellectual – 1,474

There is also an Exceptional Medical Needs category, not listed with Disability, and that figure is 1,063.

There are 4,037 people awaiting suitable social housing who have Enduring Physical, Sensory, Mental Health or Intellectual Issues.

12 Counties saw an increase in the amount of households on the disability social housing waitlists. Those counties are: Carlow, Donegal, Fingal, Kildare, Kilkenny, Laois, Limerick City/County, Longford, Meath, Monaghan, South Dublin and Westmeath.

There are 1,696 people with Physical Disability awaiting suitable, modified social housing. I repeat this number from above because their requirements are generally not met by the typical social housing unit which is a semi-detached house where the bedrooms and bathroom are all upstairs. Often, what is required is special housing such as modified bungalows which must be built or acquired by the county council. This is simply not happening, at least not anywhere near the rate required.

Again, at the risk of repeating myself, keep in mind that people who receive HAP, RAS, SHCEP, or people on the transfer housing lists are deemed to have their housing needs met so are not included in these figures.  It leaves me to wonder…

What would the figures be if these people not included were actually included in this report?

What would the figures be if each county was to state how many are on their specific disability housing lists, regardless of if they avail of other schemes at the moment? (Note: not all councils consider anything other than physical disabilities for their disability housing list)

What does it take for the members of society with disabilities to be treated with the same level of equality, respect and dignity afforded to those who are not disabled?

At what point is our society going to realise that disability is the only minority group that anyone can join at anytime? And if people realised that fact, would it change the way people with disabilities are treated? I would like to think so. 

“The true measure of any society can be found 
in how it treats its most vulnerable members.”

 

disability housing summary by county 2018

When toys bring tears

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Last night, I took some time to browse through the latest Argos catalogue. Brendan Bjorn’s 14th birthday is coming up quickly on October 1st and there is something you should know about finding a suitable gift for a child such as my angel: It can bring up carefully concealed emotions, hidden at least since the last birthday or Christmas.

I usually enjoy daydreaming as I look through a catalogue – this is what I’d buy to make a cozy, homely sitting room; that is what I’d buy to have a well-equipped kitchen. But last night, as I began the often elusive search for the perfect gift for Brendan Bjorn, I found myself in tears.

He is turning 14 years old and I am still looking in the pre-school section of toys. 

You would think, after all these years on this journey with my precious son, I’d be well used to this search. I’ve long given up the thought of age-appropriate toys or games. The idea of soccer balls or a computer or a bicycle are long gone. But the past few years have been different. He’s lost his ability to extend his arms with intent to trigger a simple toy to make its music play or its lights entertain him. It has been nothing short of heartbreaking to watch him lose this ability. I don’t know if he’ll regain those abilities after his spinal fusion. I hope so. God how I hope so! 

I continued to turn the pages, searching for that one perfect toy. I didn’t find it. I searched, cried, and continued searching. He has enough stuffed toys. He has plenty of decorative lights to surround his bedside. He has his TV and DVDs that keep him entertained and happy.

The fact is not lost on me that celebrating his birthday is actually more for me and his brother Declan than it is for him. It’s the two of us who want to celebrate this milestone for Brendan, on his behalf…and so we will. There most likely won’t be any toys this year – a fact Declan and I simply have to understand and accept. It’s part of this unique and often challenging journey.

Sometimes, toys can bring tears.

I’ve decided instead to get a bunch of brightly coloured foil balloons to place at the foot of his medical bed. Brendan LOVES balloons! I’ll get a small cake, put candles on it and we’ll sing Happy Birthday to him. There will be loads of love and kisses…and undoubtedly, there will be some tears. 

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