…and so, I worry.

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A few days ago, Brendan Bjorn developed a new pressure sore in the same area as his old one. Yesterday, the skin broke down and it is now an open sore. Another open sore. I am devastated. It has been just over 2 years since he first developed a pressure sore at his left IT (ischial tuberosity) point. It has been a battle ever since. 

See the blue highlighted areas in the below photo to understand where it is and why it’s such a pressure point. 

I called the Public Health Nurse out last week to look at the sore and she is going to contact the Tissue Viability Nurse. Tomorrow I will have to ring her and let her know the sore has opened, just as we feared it might.

Over these past 2 years, the sore has left him bedridden for months on end. He hasn’t even been able to attend school for the past 2 years. And, as he still doesn’t have a new wheelchair seat in which he can safely sit since his spinal fusion operation, he hasn’t even been sitting directly on that IT point – yet it has again broken down. Despite the side-lying, despite the tender care provided, this new sore has developed and I can’t understand why when I’ve done everything possible to prevent it.

…and so, I worry. 

My mind is racing with the dreaded what-ifs. What if this is his new normal? What if he’s never going to be able to sit longer than a few hours at a time, otherwise being relegated to being bedridden. What would that mean for my family, when we are already fighting for in home respite without the restriction of not being able to leave the home due to the Loco Parentis policy? What will that mean for my emotional and physical health, which I am already struggling with as a result of being housebound these last number of months? And what of Declan’s well-being, also being housebound as a young, growing boy?

…and so, I worry. 

Trust me when I say I’ve heard everything there is to say about how worrying is a waste of time and energy. As a former professional therapist, I have surely said similar to former patients as well. But…but…but….this is my son. This new development is potentially life changing for all three of us in my little family and as such is terribly frightening to me.

We need more freedom, not less.
Brendan Bjorn needs more healing, not more challenges.

…and so, I worry. 

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Her name was Joan

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March 18, 2019. Today is 29 years since my Mom died in 1990. Cancer. She was only 60 years old. It was a few months after I turned 24. Two years before she died, when she was told she had cancer and was given a prognosis of 6 months to live, I moved back to my hometown to be with her. We got an unexpected 2 years together, having been living in different cities since I was a mere 9 years old.

I didn’t get near enough time with her during my own lifetime. I was robbed of the time I should have had with her. There’s just no other way to put it.

My late father pressured me…an emotional 9 year old little girl who had experienced neglect and abuse…to move in with him and his new wife. He convinced me that my Mom didn’t really want me other than for the child support payments he was making. He promised me we’d get a horse, which I had always wanted. He made me spy on my Mom, keeping track in a notebook of when she came home at night, how late it was, or if she even came home all. They were both alcoholics, you see. But the difference was that my Mom had a heart of gold. I can’t say that about my dad. They both had their demons, but they dealt with them very differently. Between 8 and 9 years old, I was made to choose who I wanted to live with – a decision no child should ever be made to make. I chose him and his new wife.

I occasionally wonder what life would have been like had I chose differently.

Of all the people no longer in my life, living or dead, it is my Mom who I miss the most. If I could choose anyone to sit down with again for even just an hour, it would be her. It seems ironic that the older I get, the more I miss her; the more I need her. I wonder what she would say and advise. I wonder how she would be with Brendan Bjorn. And I wonder if she ever forgave the little girl who inadvertently broke her heart, as her own young heart was breaking, and who was driven away from the family home while her mother stood in the doorway crying. I’d like to think she never even blamed me for that choice.

So on this 29th anniversary of my Mom’s passing, I wonder what she was like before I knew her. What made her the adult she became? This photo of her is one of my favourites. What was she laughing at? Did someone say something funny or was she, even then, just the shy young woman that she was as an adult and so was nervous about having her photo taken? I’ll never know, but I can wonder and imagine. How I miss that big happy smile that forced her bright blue eyes to squint shut! That’s the memory I’ll hold onto today. She was creative, sensitive, loving, passionate, compassionate and kept far too much bottled inside. What’s that they say about the apple and the tree?

For you, Mom. Your memory lives on, as does your love.
I love you. Always. 

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Giving him the chance to be that man

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It’s a difficult task to describe how a mere budding moustache on Brendan Bjorn is making me feel. This is where being a carer to your severely disabled child with a life limiting condition comes into stark contrast with being a typical parent. This is where being a carer of such an angel can play cruel tricks on your heart as your mind is let to ponder a future that won’t be…a future where your son becomes a grown man, goes to University, meets the love of his life, has his own family…and so on and so on.

I decided to let the moustache grow. 

I’ve been shaving Brendan Bjorn’s budding moustache for a few months now but something this past week prompted me to stop and let it grow. Were he a typically healthy young man who will turn 15 in October, I don’t know if he’d want it to grow or if he’d be mad to shave it off every day. It’s up to me. Everything is up to me to decide when it comes to Brendan Bjorn.

His little brother wants to let it grow. 

He said Brendan Bjorn deserves the chance to have a moustache like a man.

And so, it grows.

I don’t think I’ll let it go for too long. It just doesn’t seem right at his age. Or, is it because he is my baby? While I’m not sure which it is, I know I will shave it when the time is right.

For now, I give him this chance to be that man he could have been, even in some very small way…even though my heart is breaking just seeing it there. 

 

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