What does a carer do when they are broken? 

They keep going.

What if they cannot keep going?

That is not an acceptable option.

This morning, I dropped a bottle of one of Brendan’s life-saving medicines onto the hard kitchen tile floor. It shattered. The anti-seizure medicine is made in the UK and shipped here for him every month. (Don’t ask why they won’t compound it in Ireland, because there is no reasonable answer). The entire bottle, now wasted. I carefully picked up the glass shards and then began wiping up the medicine which by then was intertwined with my tears.

The bottle shattered. I shattered.

I went back into his bedroom to give him his 5 twice-daily medications. I had the 60ml syringe filled and in my hand; the water to flush it all down his feeding line was in a measuring cup that I held in my other hand. I came in the room only to discover he had messed in his nappy since I was with him just 10 minutes before. It was everywhere. The W-cushion that keeps his displaced hips in line…the pillows on either side that help hold his trunk steady while he sleeps…the underpad…the blanket…his shirt…

As I cleaned him, he began to laugh. No, that’s not a good thing when he is laying back flat. Yes, he began to gag because he was laughing so hard. With soiled hands I grabbed the remote for his bed and quickly raised up the head of the bed. It didn’t matter. It was too late. He began retching, which led to vomiting. He was covered again, this time a different bodily fluid and a different part of his body.

When he was done, he started laughing again. My angel who finds joy anywhere he can, which is wherever he is, lit up the room with his smile. Through my returning tears, I clearly saw his pure innocence there to remind me I do this for love. I do all of this, every moment of it, for love.

Like the bottle, I felt shattered. In many ways, I believe I will always feel shattered on some level deep within my soul. I feel it even now as I write.

And I wonder, how many other parents of highly complex, medically fragile, severely disabled children feel as I do? I know the answer. The question is largely rhetorical, after all. I know that I am not alone in feeling this way.

But, I do feel alone.

…when there is no one to help me pick up a shattered bottle, or what it symbolises.
…when no one calls me for days on end, or lets my calls go unanswered – yet again.
…when my boys and I spent Christmas alone, just the 3 of us, with no one even bothered to see how we were doing, the Spirit all too lacking.
…when old friends stop making contact, it is always me who – until this moment of resolution – keeps reaching out.
…when people see us trying to navigate through a shop and all they do is stare, or nearly worse yet, divert their eyes, bar the sideways glance they think won’t be caught.
…when I am sick, as I am today, and it matters not, for there’s work to do – no matter what.
…when I lay in bed at night exhausted and in pain and shattered, with no one to count on, but myself.

What does a carer do when they are broken? 

They keep going.

What if they cannot keep going?

That is not an acceptable option.

And my son reminds me, yet again, that I do all of this, every moment of it, for love.