Brendan Bjorn as he was and as he is.

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It’s been 7 days since Brendan Bjorn got his new custom moulded wheelchair seating after having waited 9 months since his spinal fusion last October 2018. Waiting, in bed, housebound. We have been out a couple of days since he got his seating. The second day we were out, finally getting my haircut and doing a bit of shopping, he became fussy by the end of it. We had been out too long. Just 3 hours – the maximum time length he can be in his chair at this point in his life because he’s grown that fragile. 3 hours.

And while I am truly thankful to have this bit of freedom now, it is just a glimmer of freedom – and it’s a glimmer whose light can be quickly extinguished with one pressure sore opening up, again forcing him to be bedridden.

I’m not being negative. 
I’m being realistic.
It will happen again.

I was chatting on Twitter with a friend of mine yesterday. He said something that has stuck with me. We were actually chatting about the upcoming hurling matches and I sent a couple photos of the boys in Cork gear from the time when we lived down there. It was 10 years ago and Brendan Bjorn was a different boy altogether. The conversation went from hurling with this one short message to me: “I can see the journey you’re on. It’s not just BB as he is, it’s BB as he was.”

Yes. A thousand times, YES!

In that one message, it showed me that someone finally understood how, despite being happy to finally have limited freedom with Brendan Bjorn’s new seating, it is – and always will be – bittersweet because the boy he was is always present in my mind as I watch the boy his is now grow more fragile each year. 

That is something that most people can’t understand. Dare I say, it’s even something that many newer parents on this journey can’t (yet) understand as they are just starting out, still full of hopes that their child will reach milestones; still working with therapists weekly so their child can meet their full potential. And rightly so. They should be.

But you see, I’ve been there with Brendan Bjorn.

The physio twice a week. The OT/speech once a week. The stander daily. The walker – yes, a walker! The special needs bicycle. The AFOs and botox and serial castings. Watching him be able to grab things out of my hand, bring a biscuit to his own mouth, hold his head up for a few minutes at a time. Seeing him accurately trigger BIGmack switches to relay messages. The travel and adventures taken. And so much more. 

But it’s all gone now. That time is past. The hope of milestones and met potential no longer exists. And for me, it hurts like hell to watch my child regress and decline each year despite having worked so hard and having had such faith that the work would make a difference and somehow save my beloved son from the challenging and very restricted life he is now leading.

As I washed his hair tonight, carefully and tenderly holding his head in my left hand as I rinsed with my right hand, it all came rushing at me. The feelings of what it used to be like when he’d lay in his special bathtub laughing, kicking his legs to make the water splash, and laughing with abandon. Yes, beautiful, precious memories I shall treasure as long as I live. But like my friend said about this journey, It’s not just BB as he is, it’s BB as he was. 

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Burnout

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Before I had my sons, I was a professional child and family therapist. During my graduate studies, we often discussed burnout as a therapist and tools to try and avoid it as best as possible. Today, as a full time lone carer to my severely disabled teenage son with profound medical care needs, I am experiencing burnout. 

What are some of the signs of burnout? 

Here’s the way it was described in one recent article in the Irish Times:

  • There is no such thing as a good day
  • You’re constantly exhausted
  • You’ve unexplained aches and pains
  • You’ve lost interest in all the things you used to enjoy
  • You feel helpless, trapped and alone
  • Nothing lifts your spirits
  • Loss of motivation
  • Isolating yourself from others
  • You feel constantly angry, frustrated and resentful
  • The future looks bleak

As I read over that list of warning signs, and tick pretty much every single box – as I’m sure many full time carers can do, too – I feel compelled to write this blog piece as a way to get more conversation started on what can be done to help carers like me continue with the work we do every day.

A recent study by Family Carers Ireland showed the following from their survey:

  • 2/3 feel their health has suffered as a result of being a carer
  • Over 2/3 suffer with physical ill health
  • 1 in 3 have a diagnosis of depression
  • 4 in 10 have a diagnosis of anxiety
  • 71% have no access to respite

There has also been discussion in the press recently of burnout amongst the medical professionals in Ireland due to our failing health system and the appalling shortage of consultants. Last year it was revealed that 1 in 3 hospital doctors experience burnout.

Burnout amongst the caring professions – and I include those of us who are full time family carers of our disabled loved ones – is an extremely serious concern that must be addressed.

Carers like me are the first line of care to keep our fragile children out of hospital. Our work is crucial. We literally keep our child alive with the medical interventions we do.

We are entrusted with complex medical care, often on a 24/7 basis for days, weeks, months on end, which including measuring and administering life saving medications, clearing airways, seizure rescue, monitoring of heart rate and oxygen, care of open wounds, and so much more.

If we burnout, what happens to that intensive, daily care we provide and what happens to the one we are caring for? (please re-read that all-important question)

As with the physicians who are experiencing burnout, there is only one answer to that question: The quality of care ultimately suffers. 

A perfect storm, as it could be called, is brewing in Ireland. One where full time carers like me are burning out and the doctors are also burning out. What saddens (and angers) me most about that fact is not the list of burnout symptoms above which I go through on a daily basis, but knowing that, at the end of the day, it is the patients, the loved ones, the fragile children, whose lives depend on the best care possible to remain healthy and indeed alive, that are most at risk because of burnout.

It is past time that the government listen to all of us crying out for reforms.

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Are you always so happy?

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It was just 2 weeks after Brendan Bjorn’s first birthday when I drove him from Tucson to Phoenix for a second opinion from a Paediatric Neurologist. You see, I still had hopes at that stage. I was still holding on to those dreams of the future…his future and mine.

In his first year, Brendan Bjorn had been diagnosed with congenital CMV (cytomegalovirus) at 4 weeks old. The week prior to that diagnosis it was confirmed that he was profoundly deaf in his right ear. I remember thinking that was such devastating news; unilateral deafness!

What’s that they say about hindsight?

Anyway, after the cCMV diagnosis came a CT scan at 6 weeks old which showed moderate brain calcifications, decreased white matter, slightly widened ventricles, a portion of his brain’s left hemisphere not fully developed, and of course, microcephaly – a word I learned when he was just 2 weeks old.

At 4 months old, on Valentine’s day, his neurologist diagnosed him with quadriplegia cerebral palsy.

At 6 months old, in April 2005, he had his first EEG. I can’t even tell you how many he’s had since, it’s that many. He had been experiencing severe infantile spasms, or myoclonic jerks, so the EEG was ordered. It was the only EEG he ever had which read as normal.

It was just 2 weeks after Brendan Bjorn’s first birthday when I drove him from Tucson to Phoenix for a second opinion from a Paediatric Neurologist. You see, I still had hopes at that stage. I was still holding on to those dreams of the future…his future…despite what all of the tests that first year told me.

Journal entry from October 15, 2005. 

“I don’t know where to start. Yesterday I took you to see a neurologist at Phoenix Children’s Hospital. It was terrible. He was terrible. You were so beautiful, as always, smiling at me, at the doctor. He asked if I was always so happy. I thought he was asking you, so I answered, “Yes, he’s a very happy boy!” He said no, he meant me. Max [my step mother] said I do deal with depression over the diagnosis of CMV. The doctor then said he wondered why I was so happy because CMV is nothing to be happy about. He was abrupt and didn’t even examine you. He didn’t even attempt to interact with you. He just told me that CMV with microcephaly is a bad prognosis…that I can expect you to surely develop seizures, that you will only have an IQ of 40 to 60…that you will most likely never walk or feed yourself, therefore your lifespan will be shorter. I was devastated. A piece of me has died. I feel like I got your diagnosis all over again. If he is right, you will never read this, you will never understand any of this, you will never have a life of your own to discover. I feel so sick; beyond sick. You are my heart, my life, and I feel as if my heart has stopped, my life forever damaged, changed, painful.”

Yesterday, July 2, 2019, I sat at my desk while looking for some papers, and picked up the old journal containing the above entry. It’s priceless to me. I began it the day I found out I was pregnant with Brendan Bjorn. It’s a roadmap to the early years of our journey together. I’m not sure why I share this here now. Possibly because that pain has never left me. In some ways, it’s grown. And lately, it’s been weighing very heavy on me yet again. I try to hide the pain of this journey, and the inevitable outcome, but sometimes I just can’t.

This journey, and the years of fighting and struggle, do take its toll. So remember, even those who seem strong outwardly may actually be crumbling inside.

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Brendan Bjorn at 8 months old

Who gets how much respite? A question of what is most fair.

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I posed a question on Twitter the other day asking carers what they thought was most fair when it came to allotting overnight respite: Each family receiving the same amount of overnight respite per year, or, each family being assessed on an individual basis considering such factors as: do they receive overnight respite through another facility, do they receive in home nursing and/or respite support, do they have a support network of family and friends, the size and age of child, the complexity of care, does the parent have any health issues themselves, and so on.

All of the answers supported the idea that overnight respite allocation be done on an individual, needs-based assessment to be most fair. 

There were also some replies from other countries which are worthy noting. For example, in Australia and Canada, funding is given directly to the parent/carer to determine how, when, and where to best obtain the respite that best suites their family’s individual needs. It could be in-home nursing respite is best for them. It could be that in a respite facility works best for them. But at the end of the day, they are free to tailor their respite based on the unique needs of their own family.

Can Ireland be this progressive when it comes to respite funding?

Will the current respite centres, many of which are charities, consider changing how they allot respite nights to families?

We have plenty to discuss regarding reform to carer and disability services in Ireland.

We need to get government, charities, carer organisations, and families around the table for this discussion. To be absolutely clear, these type of decisions should not be made without consultation from those that are most affect – the families who desperately need the respite. Unfortunately, the way it stands now, many of those decisions are made in just such a way.

What reforms would you like to see regarding respite services in Ireland? And to go back to my original question at the beginning of this blog, which way of allotting respite nights do you consider most fair? Let me hear from you.

Looking beyond the scars

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There is something almost meditative about giving your severely disabled, fragile child a gentle bed bath. Brendan Bjorn loves water. Even more so, he loves having his hair washed. The feeling of warm water running through his hair never fails to bring a look of enjoyment to his handsome face. Today, as I struggled to give him his bed bath because I’ve been sick all week and my hands were trembling, I went especially slow. But in that slowness, I paid particular attention to all of his scars.

And as I looked at all of his scars, I also looked beyond the scars. 

His most recent scars are the first I saw while washing his hair. These are 2 scars on the right side of his neck from having 2 different central lines placed last Autumn while he was in hospital recovering from a spinal fusion. His intestinal system stopped accepting formula PEG feeds. It was the fourth time this has happened. This time, however, was the longest and hardest to recover from and he ended up on TPN for many weeks while we (his medical team and I) worked to slowly reintroduce his PEG feeds.

Washing the scars on his neck made me reflect upon those exhausting 2 1/2 months in hospital, sleeping on a bench, away from my other son, and at times wondering if Brendan Bjorn would even survive.

The next scar to wash was the longest one he has – that from his spinal fusion. Carefully holding his body in place while I washed and dried his back, that tremendous scar reminds me what a warrior my son truly is to have come through such an arduous operation despite his various complex medical conditions.

And I thanked him once again for teaching me how to stay strong.

Not far from his spine, down either thigh, are scars from 2 derotational osteotomies years ago. As I looked at his legs, now once again betraying what should be, sadness came upon me. This is what causes him pain. This is what limits much of his ability to be in different positions. One femur now pointing too far outward, bone on bone in the hip socket. The other, partially uncovered and increasingly pointing too far midline. Both cause increasing concerns.

He won’t be having any more hip surgery, I’ve decided, unless the pain becomes too great. 

Rolling him over, I see the scars from 3 different pressure sores at his left IT point area just below the left buttox. One is concave because that pressure sore was once a grade 3 sore. There is a dark redness once again on one of the scar areas and I can’t help but wonder, if it’s red again now, what will happen when he finally gets his new wheelchair seat and can once again sit upright?

I can only hold out hope that the skin stays intact. If it doesn’t, we are back to being housebound while he would be bedridden. I can’t let my mind go there for too long.

I also bear a scar for Brendan Bjorn. A scar I will be proud to have as long as I live. The scar from the cesarean section which brought him into this world and into my life. The scar which reminds me of the moment my doctor told me, you have a boy! The scar which also holds bittersweet memories of the first few days and weeks after his birth when they all had no idea of the brain damage just waiting to be uncovered; waiting to be seen like the scars he now has all over his frail teenage body.

These scars are a roadmap of our journey together so far. And as I reflect on this often challenging, but always love-filled journey, the scars take on a deeper meaning to me.

 

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The end of Carer’s Week being a carer to a child with profound needs

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It’s the end of another Carer’s Week. This post is a shout out to all of the parents who, like me, care 24/7 for their disabled child with profound care needs.

Many of us administer medications on a daily basis which truly save the life of our child. I’m not talking Calpol. I’m talking medications such as epilepsy meds which keep our child from dying in a seizure or going into status or not waking up due to SUDEP.

Many of us monitor O2 levels, heart rate, and lung function throughout the day and night.

Many of us do physio/OT work on our child with hip dysplasia, scoliosis, cerebral palsy, and/or osteoporosis without even blinking an eye.

Many of us give complete bed baths to our fragile child, all the while being mindful of positioning to avoid further complications to an already complex care regime.

Many of us have watched our child turn blue while in a seizure, yet remain calm as we administer the rescue medication and grab the O2 and place the mask or cannula on our child’s convulsing face.

Many of us clear airways, monitor aspiration risks, mindful of positioning while sitting, lying down, being transported or repositioned.

Many of us do this alone as single parents.

Many of us do this despite our own increasing physical and mental health struggles.

Many of us do this work with literally no break, no free time, as our child is housebound or bedridden.

Many of us do this work without any respite or home help.

And we all do this without pay, especially pay commensurate with the level of skilled medical care we provide. Nor do we have a building pension to help care for us when we are the ones who will need the care.

So to all of you who walk this same journey, and as another Carer’s Week comes to pass, I extend my solidarity to you. Let’s keep advocating, keep fighting, until the systems that should be supporting our children’s needs, and indeed our own needs as carers, are reformed to the point we no longer have to fight for even the most basic of needs to keep them alive and thriving. Let’s support each other as best we can while trying to keep our own heads above water. For our precious children.

 

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What we need for Carers Week 2019…and every day to follow.

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It’s that time of year again. It’s Carer’s Week. The week where carers such as myself are put on a pedestal of praise made of sand, ready to get it washed out from under us later today when the tide rolls in.

I can’t speak for anyone but myself, but I dare say I know that I’m not alone when I say the following:

  • I don’t want the praise. I want actions of positive reform to make my life more tolerable…and maybe even a little bit enjoyable.
  • I don’t want the free luncheon or weekend away at a resort as a way to say ‘thank you for your sacrifice.’ Anyway, I can’t get out of the house to attend. I would rather see the funding spend on more overnight respite, in home respite, or put into the special medical and educational requirements for children like my Brendan Bjorn.
  • I don’t want to read a week’s worth of newspaper articles about the mental health needs of carers in crisis, only to see it once again go nowhere when the week is over. I want to see counseling services made available to carers like me, and our family as a whole, and to be available in home if required. 
  • I don’t want platitudes and condescension. I want intelligent, timely dialogue and for our needs to be heard – and then acted upon. 
  • I don’t want others making decisions for me and my family, such as the steering group which discussed Loco Parentis last year without including a parent representative. I want family carers like me to be at the centre of discussions and decisions about such important issues that will impact our daily lives.
  • I don’t want every single day be such a fight, but it is. A fight for services; a fight to organise my son’s needs; a fight financially to survive; a fight to not completely breakdown or give up, worn out from all the fighting, the isolation, being housebound, and having no help with the nursing level care I do literally 24/7 all on my own going on 15 years now. I want the system to see that parents like me need a wraparound service to provide holistic supports, and then for that system to actually provide those supports. 

And I don’t want to continue feeling the way I do: lost, alone, exhausted, broken.

I want to feel whole again. I want to have a social life with friends. I want to utilise my education and experience outside of the home. I want to have people reach out to me because they actually like me, Tracy, not because they feel pity. I want to be free again to go on hikes, go to the beach, take long walks, or wander around a museum. I want to not feel like my life is passing me by and that I’ll die with these same feelings, nothing having changed.

So, no. Please don’t put me on that pedestal of praise built of sand. I know the tide will come in later today to wash it out from under me. 

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