Exploring Resilience via Lifes Burning Issues

Tag: fear (Page 2 of 7)

So this is Xmas …. But

 

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Missing Samuel’s spontaneous joy…..

So this is Christmas?

So this is Christmas… An opening line to a famous song that you can find below….. and yes I hope it’s a good one, without any fear, and I hope your wars are over……..

But I know that’s not the case for me and it’s not the case for many people.

I’ve written before questioning whether it is really A Merry Xmas and how this season induces a fair bit of Bah Humbug feeling in me.

Carrying the fear..

This whole year has been filled with an undercurrent of fear as my family was given the news that THAT day had finally come for Samuel, and then we dealt with things not going as expected.

We have had to continue dealing with the fundamental ambiquity of being human and every day with Samuel we continue to deal with the quiet, noise and fear. of continuing to care for him.

Capturing the moment.

I love the photo that I have included in this post… it shows the beauty of my little man and the look melts my heart….

But it’s a look that is fleeting, and came at a cost of some pain to Samuel. However it was great to capture this moment… and some beautiful photos of him with his sisters.

The thing I love most about Christmas is the spontaneity and joy of my children…. but I miss that spontaneity and joy in Samuel and this year it is hitting home that I am missing it again.. and knowing that the way he is we may not get to capture the moments like these with him for much longer.

To quote another verse from the song:

And so this is Christmas
For weak and for strong
For rich and the poor ones
The world is so wrong

So even though I will experience the joy of xmas with my family with an undercurrent of fear…. I know that there are still many others far worse off than we are this xmas.

So, yes I still hope that it’s a good one, without any fear … and that your wars are over soon… but if they are not.. then I will be thinking of you too.

Looking for the fire in his eyes

SamuelSamuel is back in hospital …….

My last post was about where I have been for the past months and I mentioned my son having been in hospital for part of that time (you’ll find the reason for it in the post how did I get here).

The warmth of the fire in his eyes

The thing that has always struck me about my brave little man is that no matter how sick he has been (and he has been incredibly unwell on far too many occassions), I have always been positive and hopeful because he has always had a fire in his eyes.

Samuel has been very sleepy over the past days and has only had his eyes open for a few minutes here and there (one of those occassions captured in the image above). When his eyes are open I find myself desperately looking  in hope for the fire that has always been in his eyes, but right now I’m struggling to find just a spark.

Watching and waiting for the spark

We have had the palliative team involved in Samuel’s care for a while, so conversations about death and dying are sadly way too familiar, but have always been tempered for me by the fire in Samuel’s eyes and the hope that it gives me. 

It is only once before that I have not seen the fire in Samuel’s eyes and it was for a brief time and then the spark took hold and the fire returned to his eyes, but this time it feels different and I cant put my finger on why it feels different. So we are settling in to watch and wait all over again. 

What to do while I watch and wait……

I’ve been doing my best to follow my own advice, like how to sit with sadness, and how to be courageous . So for now I am going to take a leaf from the advice about courage… and I am going put on the uniform of “Dad” knowing what I might be called on for and I am going to keep whispering to myself ….

” I will try again tomorrow”

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