Today has been a long time coming

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Today is the first day since moving into our new home in January that I’ve actually been alone in the house. Why? Because today is the first day in two very long, very challenging years that Brendan Bjorn has been able to attend school.

Today has been a long time coming.

I sit here in the unfamiliar silence – not even the sound of a feeding pump churning away – and wonder, should I get up and do the washing up which has been left for me to do? No, I don’t think I will. Not just yet. I’m going to sit here and do absolutely nothing for a few minutes. When I say absolutely nothing, what I mean is that I don’t have to be on high alert right now waiting for an alarm to sound or my son to cough and run down the hallway at a moment’s notice. No, I actually don’t have to do anything at all right now, not even be on high alert.

Today has been a long time coming. 

When I brought Brendan Bjorn into his new classroom this morning, he was very quiet. No smiles. Not his usual happy self. I was worried. I had a nice talk with his teacher, the classroom assistants, and the two school nurses – my mind racing as I tried to remember nearly 15 years of what to say in the space of 15 minutes. I think I covered the bulk of it, but undoubtedly there’s always more to say.

As I was finishing talking with one of the nurses and we made our way to the exit of the school, we stood in front of the windowed wall where the Friday morning assembly was taking place. Across the room I could see Brendan Bjorn. He was watching all of the students gathered together…and he was cracking up laughing!!! The smile from ear to ear, his arms stiff with cerebral palsy being forced upward to his chest as his joyful body took control. An indescribable feeling came over me at witnessing such a beautiful sight.

I wanted to cry.

That’s my boy. That’s MY baby in there, laughing, back amongst his peers, and he is happy. My heart skipped a beat and I fought back the tears as I finished the conversation with the nurse while we both watched Brendan Bjorn.

As I drove away from the school, I let the tears flow.

Today has been a long time coming.

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On this day over the years

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Most mornings I can be found sitting at my laptop with a cup of hot coffee perusing social media in the silence of the morning before the boys wake. Part of this routine involves looking back at my Facebook memories of the day. Something about this day – August 14th – seems to have been filled with medical issues for Brendan Bjorn over the last number of years. It struck me so much this morning that I now sit down to write this piece about those days…just a few days in the many years along this journey.

14 August 2010 –
Brendan’s 3rd leg/hip surgery is tentatively scheduled for Sept. 14th. The challenges, pain & suffering my poor little boy has to endure just rips me up inside.

14 August 2012 –
Just off the phone with Brendan’s epileptologist. I asked about VNS and Keto diet as possibilities to lower his EEG status readings if this new med doesn’t. He said that while we could try, he would question whether it would be worth it to put Brendan through surgery or the Keto considering the extensive brain damage he has from CMV. I do see his point, but am disheartened all the same. So, here is hoping the new med will work.

also on 14 August 2012 – 
on the phone with Brendan’s PT…I feel my blood pressure rising quickly. 
(Note: He had been discharged from regular physio because he was deemed to no longer be making progress and they would only do physio for children who made progress with the therapy)

14 August 2013 –
I just got a call from Brendan’s GI doctor and he wants to see him in 3 hours rather than in 2 weeks. Brendan has been having issues tolerating his feedings (being in pain when being fed, and even times when not being fed) and he’s been bleeding from his G-button site. Time to hop in the shower then head to Children’s Hospital.

14 August 2015 while in hospital – 
Brendan update….
The GI doc came today. Thank God she agrees with me that he needs scoped! It will be done late afternoon Monday so he’s in hospital at least until then. If the scope doesn’t show what the issue is, the doc said she will then order a barium scan of his intestines to see if there’s an issue. Let’s hope the scope Monday will be all that’s needed. He’s in a lot of discomfort today. Vomited twice, once with fresh blood.

14 August 2018 –
I received a phone call this evening. Again, Brendan is not on the operating schedule for the next 2 weeks. No reason given. They meet at the end of each week to discuss the following 2 weeks cases. I asked why Brendan is not yet assured he will be on the September operation schedule at some point in the month. It’s not that simple, I was told. I said how he’s been on the URGENT list for over 14 months now and grows worse, and if this keeps up, he will be unfit for surgery at all. I want a surgery date. Brendan should now be considered an emergency and at the very top of their list. This is inhumane and cruel. I am about to lose the plot altogether! 

Today, 14 August 2019. I look back at this journey on this day with wonder at how all 3 of us have made it to today. More scars, more heartache, more fighting for care…but we are here to see this day, and for that, I am grateful. This very moment I can hear Brendan Bjorn’s sweet laughter coming down the hallway, making me smile in the midst of remembering the above difficult memories from this date over the years. And with his laughter comes a sense of peace.

Sometimes lessons learned on this journey take years to become clear. 

The storms will come again, of that there is no doubt. Some are even brewing already. I can’t keep Brendan Bjorn out of the storms on his journey. All I can do is try my best to keep him sheltered from harm while the storms rage on. I’m not the same person I was 15 years ago when this journey began. Nor am I the same person I was during all of the storms listed above on this date. I am ever changing, growing, as I weather these storms with my precious son…just as it should be.

quote about storm and changing

 

My week: respite, love, hate, apathy & home

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Hate is an ugly, divisive energy. So is apathy – sitting idly by and watching those actively hating others while not doing anything to defend the target of hatred.

Love is a precious, gentle yet powerful, energy. With love, there is no apathy – one doesn’t sit idly by not sharing the gift that is love. It is given freely, nearly demanding it be given away in its radiance.

Misunderstandings are part of life, but it is the mature, measured response to first clarify intent before delving headlong into hate-filled responses.

          *         *          *          *          *

This past week, Brendan Bjorn spent the week away in respite. I missed him terribly, yet at the same time, I knew I needed the break from the complex, all consuming caring 24/7. I knew Declan also needed my undivided attention. We had fun. We ran errands. We attended medical appointments that had been put off for far too long. And then we had more fun.

But still, there was a hint of guilt as I let myself accept that if felt good not to have to do that complex and all consuming care. So, the week was, in a way, bittersweet…as is much of this journey. 

This morning, a slow and relaxing Sunday, Brendan Bjorn is back in his own bed and the house is again as it should be – full of immeasurable and unconditional love. There is no hate to be found in these walls. There is only love. And that feels amazing. It’s as if I am once again whole. My world is back as it should be. My little family together again.

I started out this piece talking about hate and apathy. Odd topic for one of my blogs, I realise. I did this because social media is rife with hate and apathy lately and it’s becoming stifling. It’s overwhelmingly sad and disappointing. If it wasn’t for the connections to so many specials needs families also on this journey, for the advocacy work I do around this area, and for it being how I can interact with the world outside of my door, I would leave social media today.

Some day, I will leave it behind. But for today, I’ll remain.

I need to learn how to become more apathetic, believe it or not, toward those who hate and toward those who are apathetic when those that hate dole out their hatred on others. I need to learn to ignore, is what I’m really saying. To not soak it in emotionally. But, if I do that, will I, too, grow as cold as those who hate? I don’t want that to happen. So, a fine balance must be found.

I first moved to Ireland a very long 24 years ago. I was young, single, no children, and fell in love with the sense of community and caring. I built friendships that to this very day remain strong. I’ve loved here, I’ve lost loves here, and I’ve grown here. I’ve been right and I’ve been wrong here. I’ve received greatly and given greatly…or at least, I hope I have. I’ve tried. I will continue to try. Sometimes I speak out too much. Sometimes I’ve not said enough. Sometimes I’ve been misunderstood. Other times I’m the one who has misunderstood. This is all the nature of this journey called life.

I am an immigrant in Ireland who has recently, and again, received hate for being such in the increasingly intolerant world that is social media. And, I’ve seen others sit by with apathy as the hurtful hate is doled out. But I’m learning, slowly, that the words of hate, the accusations and lies, actually say far more about those who spew the vitriol than it does about me. Even at this age, there is always learning to be had. And I am thankfully learning.

I’m also reminded that life is too damn short. It is priceless. It is fleeting and messy and beautiful and painful and joyful. I don’t have time for the hate. I don’t have time for the apathy. I don’t have time for blind judgments without seeking understanding.

I – indeed, we – only have time for love.

Those two boys down the hallway from me right now?
They are what matters. Full stop.

 

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