15 years ago yesterday. 12 years ago today.

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Hindsight is a funny thing. For me, I’ve found that as I grow older, I tend to look back more than when I was young. When I was young, I looked ahead – probably too much so and to my detriment. At this point in my life, I think I’ve got a fairly even balance between looking behind, ahead and living in the moment. Mind you, some days I disastrously dwell too much in one realm or the other. No one is perfect, after all.

Since the day I found out I was pregnant with Brendan Bjorn, I began a journal to him. I kept up the journal writing through Declan’s birth, but over time, I stopped. As I think on it, it was probably about the time I began to spend more time on social media! (Note: I should have stuck to journal writing)

15 years ago yesterday. 29 October 2004.

This was the day that Brendan Bjorn had his 4 week old well baby check up with the pediatrician. It was the day after he had an ABR (Auditory Brainstem Response) hearing test which showed he was deaf in his right ear. I remember sitting in my car outside the hospital and crying my eyes out thinking how my baby boy was deaf in one ear. Hindsight, right? The perspective that the years bring us is priceless.

I remember the pediatrician sitting at his desk, me sitting in the chair next to it, and Brendan Bjorn on my lap. We started off discussing milestones – that dreaded word to most parents of children with special needs. At that time, of course, I didn’t know my son would have any special needs. Then we progressed to the results of the ABR. From there, to measuring his head, which had been noted at his 2 week appointment as being small. It had barely grown in the 2 weeks since his last appointment. Blood work was ordered to uncover the cause of the deafness and the microcephaly. And the journey began in earnest on this day.

12 years ago today. 30 October 2007. 

I wrote: “Dearest Brendan and baby, today I had my first ultrasound with this pregnancy. I was so scared and nervous, but what a relief it was when the doctor said ‘and there’s the heartbeat.’ I could see it on the monitor! And then she turned on a volume switch and I actually could hear the heartbeat at just 7 and 1/2 weeks pregnant! You’re going to be a big brother, buddy! I love you both!” 

May I never forget that moment or the feeling of sheer joy at hearing Declan’s heartbeat for the very first time.

Today. 30 October 2019. 

As I turn the pages of that early journal, I am reminded at how so much happened in the 3 years between those dates. And as I look around me today, seeing life as it is in this moment, I am reminded at how so much has happened in the 15 years since that pediatric appointment with the 4 week old baby Brendan Bjorn on my lap.

I’m going to keep striving for that balance of looking ahead, remembering what has been, and living in the present. I might not always get it right, but one thing I do know is that those moments which are to become cherished memories will continue to present themselves along on this special journey of ours. And isn’t that the real beauty of life?

 

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CAGED

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Yesterday, 16 October 2019, there was a protest outside of Leinster House here in Ireland. The protest was organised by Family Carers Ireland to advocate for the much needed reforms in support of full time family carers such as myself. The hashtag #CAGED aptly describes the world in which many of us find ourselves. Ironically, the majority of carers weren’t able to attend the protest because – you guessed it – they were busy caring with no one to relieve them of their 24/7 duties.

What does it mean to be CAGED?

My son, Brendan Bjorn, was unable to attend school for the past 2 years due to health reasons and/or having no wheelchair for transport. As a lone parent, full time carer, with no family supports, this left me – and his younger brother – CAGED for those 2 years.

I care for Brendan Bjorn literally 24/7. While he does now attend school again, he goes 3 days per week, for a total of 16.5 hours. That means I am caring for him…hands on, complex medical care…151.5 hours per week. It’s important to note that the hours he’s in school, I must remain within close proximity to the school in case he gets ill and I need to pick him up. This actually happened 2 weeks ago where I was 40 minutes away. I’ve since been told I need to be more readily available. This is CAGED.

When Brendan Bjorn isn’t at school, the most he can spend in his wheelchair is approximately 3 hours do to pressure sore risks. Longer day trips out are not possible. Even a film and lunch would be pushing the time limit for him. Still, I try to get out…despite the fact I have no overhead hoist to safely lift his 5ft long, over 40kg body from bed to wheelchair. Instead, I’m resigned to manually lift him – a danger to both of us. This can’t continue to happen and there are days I simply decide it’s not worth the risk. This is being CAGED.

We get 15 nights respite per year thanks to the wonderful LauraLynn Children’s Hospice. The demand is so great, that this is the most nights they can provide for any family. We all get 15 nights per year. There are families who don’t even get that, it should be noted. Families of profoundly disabled children, of all ages including adults, are CAGED in their own home, with little to no break away.

What does it feel like to be CAGED? 

I can only speak for myself on what it feels like. For me, it feels like I am drowning. Suffocating. And in some respects, dying. My social life is totally non-existent outside of the often toxic social media realm. My professional career is so long on ice that I’m beyond redundant. I’m depressed. I have anxiety. I’m lonely. I’m isolated spending so many hours, day, months, and now years, caged inside the home caring 24/7. The only time my phone rings is for medical related business. I honestly can’t remember the last time I (we) were asked over to someone’s house for dinner. I’m exhausted…physically, mentally, spiritually. I find myself feeling done. Just done. I’m ready to not be a carer anymore. I wonder how long I can go on like this, day in, day out. This is what if feels like to be CAGED as a carer. 

Understanding is needed, not pity.

I’ve shared my journey, and indeed today’s post here, not for pity. That is the absolute last thing I want! What I want is understanding, and with that understanding, I want to see change – REAL CHANGE in how carers are treated.

I want to see the medical community get behind the fight for change, knowing that it’s family carers on the front line of care for our vulnerable loved ones that help keep the medical system afloat. It’s no exaggeration to say that if we didn’t do the work we do, the medical system would collapse.

I want to see the politicians with the power to reform policies of support and the related budgets actually make those reforms – and make them before carers are unable to cope any more.

I want to see the public – local and nationally – get behind carers across Ireland with their support by raising their collective voice, contacting their local TDs, and taking to the streets in protest. If you aren’t a carer now, you will either be one some day or you will need care yourself. That is the way of life. This affects everyone.

Ultimately, I want to see all carers have the freedom to experience their own life, fulfilled, hope-filled and active, without the unnecessary confines of the invisible bars surrounding them because they are being CAGED as a carer.

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A year later

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This week last year, Brendan Bjorn had his spinal fusion after waiting nearly 17 months on the so-called urgent waiting list. What I didn’t know that first week is that it would evolve into 10 weeks in hospital. What I didn’t know that first week is, despite the spinal fusion being a wonderful success in straightening his curved spine which was crushing down upon him, that a year later he’d be left with permanent damage from the inhumanely long wait.

Let me say this: I am extremely grateful and impressed with the amazing work the entire Orthopaedic team did for my son. So, let no one ever say I’m not. Ireland needs more consultants and the system is in shambles. That is the issue.

This day a year ago, he was 3 days post-op. So much was left to unfold over the next 10 weeks. Having my two sons in two different places for so long while I tried my best to divide time in different cities, different counties, put a tremendous strain on our little family. But…we got through it, as we always do. Another thing I’m thankful for: that the bond between the 3 of us could never be broken.

During that 10 weeks of Brendan Bjorn in hospital, he required his first ever blood transfusion. His gut shut down and he was on TPN via a central line in his neck for 6 weeks. He developed a new sore near his old pressure sore, which then developed an infection of pseudomonas, and though healed, that skin remains forever thinner and more fragile than before. He had a lung infection and a small infection on his spinal wound, both thankfully easily healed with antibiotics. He also developed oral thrush.

Also during that 10 weeks of Brendan Bjorn in hospital, we had an offer on a bungalow accepted and began the process to purchase our forever home. And it’s in this home where I sit now writing this blog piece, thankful.

Right now, Brendan Bjorn is down the hall, still asleep as he’s been quite ill and home from school for the past 10 days. Again, thankfully, he’s well on the mend. Yet, he still has those issues to contend with daily as a result of that inhumanely long wait for the required, urgent, spinal fusion. The skin along his waist which broke down due to his rib cage crushing down onto the pelvic bone, continues to break down. It did so again two days ago because of him not being able to tolerate side-lying while sick.

His pelvis, despite the spinal fusion, is continuing to twist, causing more issues for him to contend with; more issues for us to face in the future.

He also has some loose screws in the spinal fusion in his lower back. None of this is helped by the fact he needs an overhead hoist system which HSE won’t cover, so I’m having to manually lift him in and out of bed as the floor hoist isn’t able to be used in his room or with his long body and me just being one person.

Yet another fight for what he needs for his best care continues.

Tomorrow, I will take him out of bed, finally, for a trip to get our flu jabs for the season and run a few needed errands. He’s restricted to 3 hours a day in his wheelchair due to those pressure sore areas, but it will be good to finally leave the house again after 10 days housebound.

What a year it’s been.

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The night before his spinal fusion and the x-ray of the spinal fusion.