A day of broken angels and an advance directive plan

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The morning started off with me discovering the item I had on the wall above the fireplace having fallen in the middle of the night, knocking down the Waterford Crystal piece that was sitting on the mantle, aptly named the “Angel of Hope”. Her hands, which were held outward together, had been broken off in the fall, shattering into countless tiny pieces and unable to be mended.

This afternoon, Brendan Bjorn had his last appointment with his Paediatrician in light of him turning 17 in just two month’s time. We also completed an Advance Directive Plan for him to restrict all medical emergency interventions.

It could be a story from a novel, but it’s not.
It’s simply my life today.
It’s Brendan Bjorn’s life today.

I’m not sure anyone can truly comprehend what this journey is like unless you’ve walked on this very same path. Decisions formalised today have been thought out long and hard, exploring every recess of my mind and heart in an attempt to reach the most reasonable, right, and loving decisions. The reason for an Advance Directive – or at least what is stated on his – is to promote dignity when it is his time to die.

Seeing those words in writing hits straight into my soul. There are no words to adequately describe the emotions felt. Still, I know it’s time to not prolong the many years of constant surgeries and treatments, the frequent illnesses resulting in hospitalisations, the multiple failed IV lines resulting in central lines, the intestinal failures and of course, all of the pain that goes with each challenge. He has been through more medical interventions than the majority of adults I’ve known in my life, and he’s only 16.

He deserves peace and dignity as he lives out the remaining days, months, maybe even years, of his journey, however long it may be.

I’ve often said Brendan Bjorn is the happiest, most loving soul I know, and indeed he is. He is my angel. Our angel. And unlike the Waterford Crystal angel that fell and shattered her outstretched hands, Brendan Bjorn will always be whole in my eyes. He will always be perfectly who he was meant to be, teaching us all of the lessons he is here to teach us. And I have no doubt that in his death some day and when he becomes the angel watching over us, the lessons will still be taught, for that is the gift that my son is to me, to our little family, and to those who choose to see what his journey has so beautifully offered.

It’s been a long, emotionally draining day. I’m exhausted and, truth be told, I wish I could be held in someone’s comforting arms this evening to give me just a moment of tranquillity, forget the day, and like the now-shattered Angel of Hope, provide me with a glimpse of hope.

I look up and see the angel on the mantle, no longer perfect. That’s ok. Her new imperfection will serve as a reminder for the day it is and what it means for this journey.

The carer’s clipped wings

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A golden eagle soared high over the canyons of red rock and the mountains with pine forests stretching to the sky, her spirit lifting in the breeze.

A parakeet with wings clipped, she battered her body against the confining walls of the cage in a desperate attempt to escape.

The cage door unlocked, she flew to the pine covered mountains and her spirit was unleashed. She caught a glimpse, or a memory, of what it was like to fly high amongst the beauty she knew once upon a time when she was free.

She was returned to her cage, the duty of being bound by wings not allowed to fly.

And now, the cage is even more confining than before, as she yearns to be free once again, to soar with wings unclipped.

Creating too much noise, the cloth was placed over the parakeet’s cage, and in the dark, surrounded by bars, she grew silent as her spirit went back to sleep, dreaming of becoming an eagle once again…

Dreaming of unclipped wings.

10 minutes, 9 years ago, 10 minutes today.

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I was talking to a friend/fellow carer the other day. She understands where I’m at emotionally as a carer. She said something that has stayed with me. She said that whenever she sees me write about being exhausted and wanting to give up as a carer, she thinks of this photo and how once I had – even for those brief 10 minutes – the ear of one of the most powerful men in the world (no comments re: politics, please) and was running a national charity foundation in America.

Now, just 9 years later, I can’t get 10 minutes with anyone who can make a difference here in Ireland and I do nothing other than exist as a carer behind closed doors, unseen, trying to make if from one day to the next working around the clock providing nursing-level care that I know I can’t keep doing on my own for much longer.

So yes, I’ve been thinking a lot about what she said. This journey changes a person in a lot of ways. One of the ways is how we see ourselves as carers. For me, these last number of years have really drained my sense of self-worth, self-confidence, or the feelings of contributing to the greater good that I may have once had; that sense of self and identity which comes with fulfilling work, whatever it may be.

To be left now constantly fighting for the slightest of crumbs and to be heard is soul-destroying. It can also make one question what is their value.

I’m trying to rediscover that sense of self-worth, that confidence in who I am as a person – not just as an invisible, forgotten carer. But, it’s hard…damn hard…when the years have repeatedly brought battles which knock you down time and time again.

Too many politicians feign interest and concern. Frankly, so do many activists who claim to care about human rights. Where are they when it comes to the profoundly disabled and their carers? They are nowhere to be found.

As I sit here tonight waiting for Brendan Bjorn’s feeding pump to finish its course so I can begin his nightly medicines routine, I type this quick blog realising it will likely be read only by those who are also carers. Like many aspects of this journey after 17 years, maybe it’s nearing time for me to stop fighting so hard for politicians to hear our plight in hopes of affecting change. Maybe it’s time to just focus on a new journey to rediscover myself, and indeed to build myself back up as a person outside of my caring role.

Just maybe, it is time.

Perfect timing. Brendan’s feeding pump just began beeping and the caring work continues.

That was a quick 10 minutes.

Disrespecting and Discarding the Profoundly Disabled and those who work caring for them

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I’m not one to mince words, so I won’t start now. If society and the elected governments genuinely thought profoundly disabled people and those who work caring for them were of equal value, I wouldn’t have to write this blog. I wouldn’t have to ask…strike that…beg for help at times. I would be able to live, not just exist. I would be healthy, physically and emotionally. My younger son would have a much fuller life than the one he’s had to consistently sacrifice in his short 13 years, and continues to do so.

That is it in a nutshell.
Society, as a whole, doesn’t value people like my son nor me as his full time carer.
Full stop.

I’ve written for years providing alternative methods to financially and holistically support family carers. It has gone nowhere, other than garnering support of fellow carers. Even the one and only carers association in Ireland hasn’t engaged. I’ll say this: Things will never change if we aren’t willing to think outside of the box, beyond the status quo, and be open to possible solutions which have been proven successful elsewhere in the world.

Ireland, you need to wake up when it comes to family carers.
Full stop, again.

The work I do literally keeps Brendan Bjorn alive on a daily basis. The work I do is nursing work, to be clear, for example: constituting life-saving medications, measuring correct dosages, administration of medications; open wound cleaning, care and dressing; clearing the airway; seizure rescue; administering oxygen; PEG replacements; and so very much more.

If I was considered (let’s make that valued and respected) as a nurse, I would have days off, holiday time, a pension accruing, and a salary commensurate with the skilled, intensive work that I perform on a daily basis.

But I, and other carers like me, are not valued or respected in this way.
Full stop, yet again.

Let’s consider an average worker who works 5 days a week and an average of say 8 hours per day, with 2 days off which are usually the weekend. That’s 104 “weekend” days off per year. Now let’s consider Ireland’s employee entitlements for annual leave. That is 4 weeks paid time off per year. ( See here ) We are now up to 124 days off annually without even mentioning bank holidays.

Now let’s look at a family carer in my situation. There are no weekends off; it’s 7 days work per week. There is no annual leave, let alone paid, so forget those 4 weeks. As for bank holidays, what are they? Did I also mention that there is no clocking out of work after an 8 or even a 10 or 12 hour nursing shift? Nope. No time clock here.

So, when last week I saw the family carers association mention on social media that they were lobbying for a statutory 20 days of respite per year for family carers, I felt a range of emotion – and none of them were positive. 20 days off in a year of providing 24/7 nursing-level care is shameful. In my opinion, that is actually abusing carers and it’s certainly not respecting or valuing carers.

If you, dear reader, need more convincing, think of it this way:

20 days off per year is 480 hours off of work per year. You will be working the other 8,280 hours of the year. Day and night. Nursing-level care on a very medically fragile, profoundly disabled individual. You can also think of it as 1 & 1/2 days off per month. The rest of the month is working, and yes, remember that is around the clock, 24 hour per day.

Should I again mention that this is without any pay or hope of pension?

Considering all of the above, is it any wonder that I wrote my last blog piece (see here) saying that I’m ready to stop caring now?

Just imagine, if carers had the same employment rights as everyone else – the 2 days off per week, the 4 weeks off per year, the help so not to have to work around the clock, the financial security, etc –
we might just not get to the point of giving up.

It will take society and government truly valuing and respecting the profoundly disabled
and the highly skilled work we do for them as their carers.

I hope those with the power to make changes will truly hear this message.

When a Carer considers no longer Caring

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As I type this difficult blog piece, it is a quiet Tuesday morning. My youngest son is still soundly asleep in the comfort of his bed. My eldest son, Brendan Bjorn, is in Dublin for a few nights at the only Children’s Hospice in Ireland. He’s there on a “crisis admission” so I can have some respite. I look at that word, crisis, and my first thought is that it’s too dramatic. In fact, it isn’t, for how else are we to describe that point of exhaustion after 17 years of lone parent, nursing-level caring, when the carer says aloud, I don’t want to do this anymore?

It is indeed a crisis.

I wrestle with not wanting to do this anymore to feeling like I simply can’t do this anymore. I’m not really sure which one it is. I only know that I am exhausted, my body is aching, my mind is weary and my spirit sees the point of either breaking or being free again to be what it could be, or should be, to live fully; not merely exist as a carer working around the clock with no end in sight.

Is there an end in sight? When is it? There is no answer.

Brendan Bjorn has, since my last blog piece, had his formula feeds slowed even further, his gut unable to handle what it was even a few weeks ago. He’s now down to 40mls per hour. I’ve spoken with the relevant members of his healthcare team and disability team. I’ve asked for an advanced directive to be written up now, before he might turn 18 in just 15 months time. It needs to be done while I’m thinking from a place of logic, not emotion. My precious, beautiful son has been through so very many struggles on his journey. He doesn’t deserve to go through any more of them. He deserves quality, comfort and to simply be surrounded by love – not invasive interventions or pain or yet even more operations.

No, he’s had enough done to him to prolong life. Now is about peace and comfort.

Until that time comes…whenever it may come…I must also consider myself. How can I carry on this work? For how long can I continue? I’m taking this time to reflect and consider as well as attempting to relax and remember myself.

When Brendan Bjorn turns 18 in 15 months (that is, if his journey is meant to go until then), he will lose the respite at the Children’s Hospice. He will also lose his Special Needs School. Currently, those are the only two places which give me some reprieve while he is in either setting.

What happens when he turns 18 and there is no place for him to go? What will happen to me?

These are not selfish questions. I’ve come far enough on this journey now to accept that these are necessary questions. Mind you, it’s taken me awhile to get to this realisation. If I don’t ask them, no one else will. And if I don’t take care of myself, no one will be there to take care of Brendan Bjorn. I can’t allow that to happen.

This point of fact is what the government and related disability sector services don’t seem to realise. Maybe they do realise it, but just don’t care. I’m afraid I think it’s the latter.

But I do care. I must be proactive and figure out what I can do – and indeed what I can no longer do – then see what can be done. I’m at a point in this journey where I would actually consider residential community living for Brendan Bjorn if such a place in Ireland existed. The government seems hellbent on closing them all down, which is a complete disservice to families such as mine. (Search the fight that St. Mary’s of the Angels has had to undertake to remain open)

If, God forbid, I died tomorrow, the government plan would be to put my son in a nursing home which is the worst solution possible. Who ever thought that would be a good idea? It terrifies me, which is one reason I’m now going to actively seek a sensible, compassionate, appropriate solution to the “what if” and “when I can no longer care” questions.

There has long been a saying amongst the special needs community of the world who have had to fight tooth and nail for the supports they and their severely disabled child require. I’ll end this blog piece with that quote. Some of you may understand. Some of you won’t and may find it shocking. Let me just say, none of us should ever have to say this – but we do. We do so because we know that so often, there is tragically no place for our special children to go if we can no longer care for them. Let that sink in.

“May I live at least one day longer than my child with special needs”

photo by Tracy McGinnis

Carer’s Week 2021

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It’s that time of the year again. Carer’s Week in Ireland and the UK. Or, as many of my carer friends here and there prefer to call it: Real Carer’s Week. This is the week we take to social media and share what it is REALLY like to be a carer.

You know, the non-patronising, cold hard facts of the struggles we face which the media and even carer related NGOs like to gloss over.

So to “celebrate” Carer’s Week, I’ll use this blog to just list some of those hard to digest facts as they pertain to my individual life as a carer.

  • I’ll be 56 later this year and my profoundly disabled son, Brendan Bjorn, will be 17. He’s a man now and I’m an aging woman whose body has taken the brunt of caring duties for the past 17 years as a lone parent. It’s left me with degenerative discs in my back, pain, and other health issues.
  • I’ve had to give up a professional career I loved, lost my pension, lost my financial security, lost my sense of self-worth, lost my freedom to be an individual outside of the role of being a full time carer.
  • As a lone parent carer, I provide around the clock nursing-level care which in any other setting it is required that TWO people provide said care, one of whom must be a nurse. My son’s care is that complex. Despite this fact, and despite carers in Ireland save the State literally billions of euro annually, there is no respite care provided for me other than that of a charity 15 nights per year (less with the pandemic). Hear this: my son is too complex to receive care at the regional respite centre. You really couldn’t make it up, could you?
  • To repeat myself, despite the fact that carers in Ireland save the State literally billions of euro annually by the care we provide, Carer’s Allowance (if you qualify – it is means tested and you must prove you WORK full time provided care) is at the poverty level. Do I really need to point out, again, that disability comes with many additional financial costs to a household?
  • My son is life-limited. I spend each day, month, year, never knowing when that day will come when all my efforts to keep him healthy, happy, and alive, will be in vain. Once that happens, I (and many other carers, to be sure) will fall off that financial cliff, cut off from the meagre social welfare, while grieving and having been out of the workforce for countless years, and be required to somehow magically keep afloat. It’s a thought never far from my mind.
  • Carer’s Week and platitudes. Please stop with the figurative pats on the back, the words of being a hero and the backbone of society. Actions speak louder than words. Always. So, let’s see some action, dear politicians, to back up those words which are said once a year during this week.
  • Lastly, please DO NOT FORGET the older disabled children and/or adults who are being cared for by a parent or spouse when highlighting the plight of carers! It may not be as visually appealing in media as a cute 5 year old child, but let me assure you, the work of caring becomes much, much harder the larger the child becomes. Feature that in your media presentations for once.

To my fellow carer friends in Ireland and the UK this week, I say this: I am so very thankful to know you, to be empowered by you, to share (virtually) tears of our journeys and the small joys as well. Wishing you strength to get through not just this REAL Carer’s Week, but the year ahead. Thank you for your solidarity and love.

In advance of Children’s Hospice Week 2021: The hard talk.

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Children’s Hospice Week starts next Monday. I’m fast approaching 17 years on this journey with my profoundly disabled son with a life-limiting condition. If you had asked me even a few years ago would Brendan Bjorn still be with us, I would likely have said I seriously doubt it. But remarkably, thankfully, his time with us is not yet over.

Just this morning, I was awakened to him vomiting. His digestive system continues to decline and he grows less able to handle the mere 45 mls of formula per hour that he receives. He needs vented via his PEG more often now throughout the day, even with a Farrell Valve bag attached to his feeding system. (see photo attached to this blog piece for an idea of just how little that is: about 2 swallows to you or me. I normally attach a photo of him smiling, looking the picture of health, but this piece is about hospice; about being life-limited; about dying).

This is part of our journey, his path, my path.

I’ve grown more philosophical – and more realistic – over these past 17 years and as such this blog piece may very well be too hard of a read for parents just starting out on this journey. That’s ok. I don’t think that 12 years ago, when my son was just 5 years old, that I could have read what I am now about to write.

But yes, I’ve grown more philosophical. Maybe it’s better described as having gained some transcendent level of acceptance that my first born child, my beautiful, precious son, will in fact die far too soon. At this point of the journey, I accept it, for this is the reality. I could even say that I am at peace with it (that takes years, by the way) as I believe he will transition to a far better place than where he is now. I don’t know what it will look like, and I don’t think anyone really does, but my faith in our souls carrying on beyond the bodies we are now is firmly resolved.

And so, I accept what will come. The reality is my son will die before the natural order of what life should be.

On this journey, most parents like me meet many other parents walking the same road and with that comes watching some of them lose their child before it is our turn to face that painful reality. I’ve seen so many of my friends go through this loss. I’ve watched – and felt – the rollercoaster of emotions in the weeks, months and years afterwards. The opportunity to once again live a life free of the overwhelming responsibilities caring 24/7 for a profoundly disabled, fragile, child. (Note: I recognise that may sound cold or detached. It really isn’t. It is simply where, after 17 years, I am at in my own personal journey with my son). I have seen my friends move from finding that freedom and spontaneous nature in life again to the next day being on the floor begging for just one more day with their child.

And I have no doubt at all that I too will be on that rollercoaster once the time comes.

Children’s Hospice Week. We can’t talk about the upcoming week and this journey without talking about death. It’s a topic we all try to avoid. I don’t think we should, especially not this week. It is with talking about the fact that our child will die too soon that we can begin to genuinely let go of the fear surrounding that inevitable event. In releasing that fear we can more easily find the peace that comes in accepting this journey and embrace the lessons for us and those around us.

I have long said that the greatest lesson Brendan Bjorn has taught me is that of unconditional love. I now amend what I said and will say this instead:

To be able to truly feel and embody unconditional love for a child you know will one day die, but to reach a place of experiencing that all too rare of unconditional love without any fear of that certain loss, that is the greatest lesson – and gift – he could have ever given to me.

I am no longer afraid of that day, whenever it comes. I just hope, more than anything, to be by his side, holding him in my arms, stroking his lovely, thick hair as he likes me to do, so I can whisper just one more time in his ear how very thankful I am to have him as my son and how my love for him will never, ever die.

45 mls of formula per hour

Life as a high-risk carer: On vaccines, school, and one year rolling into another.

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It’s been a year now, hiding away in our home in an attempt to avoid serious illness – or death – during a global pandemic. It’s been a year like no other. It’s been harder and lasted longer than I could have ever imagined.

Until my very high risk son Brendan Bjorn is vaccinated, our year hiding rolls into more than a year.

Until I am vaccinated, being high risk with multiple underlying conditions, our year hiding rolls into another which continues to send waves that have me struggling to tread water in this unprecedented storm called a pandemic.

This week last year, I made the decision to pull my two sons out of school. I knew enough to know that what was about to hit us would be very dangerous. I know more about viruses than I ever wish I had to learn. But, as it was and as it is, I do understand, and so I made the decision before the government closed the schools. I wrote this piece last year about that decision.

In the year since, it’s been a fight to keep my youngest son, Declan, home to protect both his brother and me and receive remote learning. It has not been a fight, though, to keep Brendan Bjorn home. He’s very high risk, so he’s entitled to stay home.

Viruses are communicable. Transmissible. And some, very deadly. This is why the world has been brought to her knees with this pandemic. So why have I had to fight for remote education for Declan, knowing full well that him sitting in a classroom with 30 other teenagers in a school of 800+ teenagers would exponentially increase the likelihood of COVID19 entering our home?

I now await word on if Declan’s school, once they reopen next month, will continue to provide remote education for him or not. I’ve written to them, asking if they would please continue so he can progress to second year with his class when he joins them in person this September once Brendan Bjorn and I are vaccinated. Now, I wait.

I also wait for the call from the GP to say when Brendan Bjorn and I can come in for our first inoculation. People aged 16 and up who have underlying medical conditions which put them at very high risk have been moved up the vaccination priority list. Where will she decide Brendan Bjorn is on that list? Where will she decide I am on that list? I don’t know. Now, I wait.

I seem to have spent the last year waiting, and so far, nothing has changed in that regard.

This evening, I watched the news of 320,000 students returning to school today in Ireland. Neither broadcast I watched mentioned that children can get very ill with COVID19 or that they can, and do, transmit it to their family members in the home. There was no mention of the dozens of children hospitalised with COVID19 in the past few months with school closed…and there was certainly no mention of how the now predominant variant B117 is much more transmissible – and it wasn’t the COVID19 variant last time schools were open, but it is now.

Read this report compiled by Parents United Ireland (click here) for detailed information on COVID19 and Irish schools.

I am afraid this is a disaster waiting to happen.

It is one wait I hope doesn’t have a result that I expect.

photo by Tracy McGinnis

Trying to breathe

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In a few weeks, it will be one full year that the boys and I have been cocooning or shielding – hiding away in our house trying to stay well and alive in the pandemic. Lately, there have been many days when I felt I just can’t breathe. Sometimes literally, but mostly figuratively.

I want to breathe again.

I’ve been asking a lot of questions lately as I try to research about the various COVID19 vaccines, searching for updated data on possible side-effects for various underlying conditions of the people who have so far had the vaccines. In Ireland, only vague data is available. In contrast, I find detailed data out of America via the CDC there. Having said that, they aren’t administering the Astra Zeneca vaccine so there’s no data on it from them. Ireland seems set to administer the AZ vaccine to what will be the bulk of the population, including people with underlying conditions, despite the fact it is far less efficacious and it wasn’t trialed on people with underlying conditions.

I like to be informed, so when my legitimate questions aren’t answered, the stress is overwhelming…and I can’t breathe.

There is talk of school reopening next month. Declan and Brendan Bjorn will remain home until at least I am vaccinated, but preferably until Brendan Bjorn is also. As he’s only 16, and children under 18 in Ireland aren’t yet approved for the vaccine, I don’t know when or if that will even happen. Considering that, I will likely send Declan back to school when I am vaccinated and have to just keep him and his brother, his only sibling, apart. That will be heartbreaking.

I think of Declan – a young boy who is missing out on so much by being at home, keeping me and his brother safe, but who also has a life-long history of respiratory infections including multiple pneumonias, RSV, and bronchitis – and I wonder, will he be safe when he does return to school?

And with that worry, I can’t breathe.

I started using a C-PAP machine for obstructive sleep apnea this past week. I’m still trying to get used to sleeping with what amounts to a snorkel on my face and air blowing at me all night long. I think it’s too early to tell if it’s helping some of the related issues, but I’ll of course give it time. I will hold out hope that I will be able to breathe better soon.

As a lone parent carer, I don’t think life has been harder in these last 17 years than it has been this past year. New COVID19 variants, negligent decisions by the government, isolation, vaccination concerns, caring 24/7, exhaustion, loneliness, poor health, parenting challenges, open wounds not healing (yes, figurative and literal), frustration, anger, occasional despair…and so much more…

I am trying to breathe, but some days it’s hard to do.

On January 30th over the years

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I have’t been in the frame of mind to write a blog in awhile. I guess that’s what happens when a global pandemic leaves you locked away in your home for going on 11 months now with 2 sons, one of whom is profoundly disabled. This morning, as I scrolled through my Facebook memories of the day, I was struck by two memories in particular. Struck enough so that they’ve prompted me to once again write a blog entry.

January 30, 2004. Hard to believe that was 17 years ago. Time and life certainly have a way of flying by, don’t they? This was the morning I woke up and did a home pregnancy test. I said a prayer before I took it, hoping it would be positive. After 4 miscarriages and having to seek the help of an infertility specialist, I paced up and down the bathroom floor as I waited for the longest few minutes in history to pass by. Positive. It was positive. I literally fell to my knees crying in thanks. And even though I knew, considering my miscarriage history, that it would be a rough road, I had another chance and that’s all that mattered.

January 30, 2021. The boy who finally made my dream of becoming a mother is down the hallway now, laying in his medical bed, watching Finding Dory, in between doses of his many twice-daily medications. Brendan Bjorn. My first born son. The reason for this blog. The boy who is now a young man. At the risk of repeating myself, he has taught me more about life and love than I could ever have hoped to teach him. Never a truer word was spoken. And while this journey has been incredibly difficult and it has certainly taken its toll on me physically, his purpose in this world – what he has taught the world about unconditional love – must be the primary focus as I look back over the years.

January 30, 2010. Facebook reminded me this morning that it was on this same date in my life, just 6 years later, that my second born son – my “miracle boy” Declan, as I think of him – graduated from a crib (cot) to a toddler bed. Tears rolled softly down my face this morning as I looked back at the photos of him excitedly practicing climbing on and off his new bed. The little fuzzy stripped sock-covered feet. The round face and curly hair. The look of total innocence and wonderment.

January 30, 2021. I miss those days. I miss those looks and giggles and that size I could scoop up in my arms and cuddle with on my lap. I miss those days where he was filled with nothing but hope and curiosity. Today, he lays in his bed, still asleep as I’d imagine most boys about to turn 13 are doing on this rainy Saturday morning. I think of the 3 of us in our little family, it is Declan who has been most adversely affected by the pandemic, and it rips my heart out. I continue to wrestle over my decision to not send him into his 1st year of secondary school because of the pandemic; to keep him home to protect his very high risk brother and me, his high risk mother. He’s missed out on so much being home, not just academically, but socially, and I see the regression. Yet, if he lost me or his only sibling to COVID19, I still believe that would be an even greater loss for him. A loss, or losses, he could never recover.

And so, I will try not to wrestle so much with my decision…but it is hard not to do.

When I can get the vaccination (assuming it’s shows safe for people with an auto-immune disease), I will send him back into school. At least, that’s my plan now. If Brendan Bjorn can’t be vaccinated, that will mean I’ll have to keep the boys apart, and that will be utterly devastating. They love each other dearly.

But I know it’s time that Declan needs to take the next step in his life, to move from that cot to the toddler bed, to move from being a young boy to being a young man.

Time will tell, as it always does.