numbering our days and lamenting.

A sweet friend in my spoonie community has passed away.

I remember her post that she was out of options and entering hospice – at 29.

Pictures of her 30th birthday, her saying she knew it would be her last.

Photos of her in a wedding dress, a day that was a gift from a friend because she otherwise wouldn’t have had it.

Seeing her as she slowly worked towards acceptance of what was to be, no matter how difficult is was to hold.

So I can’t say I am surprised by her passing – but, still, I find myself stunned somehow.

There have been a few sudden losses in the community in the past few weeks as well that have been hard to take – but this has been especially aching.

As a chronically ill person who also has been a nurse working with the dying at times in my life, I’ve thought at length about many of the things we face when we are so medically unstable. I’ve written a devotional book about finding meaning in suffering and trusting that God will use it and I believe all of it to be true. I’m now working on a book about facing death and the fear and grief that come with it – and coping and accepting.

All that to say, none of this unfamiliar to me.

And I knew she was fading.

But it still really stings.

For her, for what will never be. For her mother, losing her only child.

It is not for us to know the plans of God – but I still want to jump up and down and scream, “unfair!”  It FEELS so unjust.

We can be honest with Him. He can take it.

When I consider the suffering that comes with the spoonie life, I tend to return to a few simple ideas. First and foremost, it is my belief that everything that happens to me is (ultimately) for my good and His glory – even when it is painful getting there. Second, I always remember an Ann Voskamp thought that resonates so with me, that there is no way on this earth to understand the reasoning behind who gets pain and who gets peace. It just IS. And, finally, in Job 2:10, he asks his wife, “Shall we accept good from God and not evil?” No, of course not. His ways are not ours.

All that said, I am still human. It hurts like hell when friends suffer. I hate it so. It will always be easier to accept my own than that of those I care about – and the losses NEVER get easier. We have so many in this community.

I also get scared when I realize that this body of mine is not doing what I want it to. Walking closer to the edge of things than most people do is unsettling. While, yes, death is a part of life and everyone is going to get there – and can at any time – many of us in the spoonie community carry diagnosis and complications and side effects that are more immediately of concern to us than your average bear.

So, what to do?

We do the only thing we can: we stay busy living.

We cling to Psalm 90:12 and keep going.

Numbering our days helps us to remember what’s important: loving God and loving our people, being a light, living well.

There are no guarantees in this life, no safety net, no certainty of time.

Let’s be about what matters.

Be well, everybody. Take care of yourselves and each other.

Grace and Blessings.


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