When E was diagnosed he stayed in a nearby hospital, about 30 minutes away. It isn’t our local one, but has a paed ward, etc, so that’s where he was.

I’ve since had no reason to go back. All of our consultant appointments are at the local hospital or at our shared care hospital some one and a half hours away.

I went back two days ago to pick up a CGM for E — great news in itself, and more on that later.

The ride there wasn’t great, but I was under some time pressure and that was occupying me. Then when I arrived, it began to hit. I remembered that day. OH had gone ahead with E, and I had joined from work. I remember not being able to find a parking space. And becoming hysterical, screaming and crying at the parking attendant that my son had just been admitted. Literally. I remember being completely and utterly beside myself, so desperate to get into them, although I knew that they would just be sitting there waiting to be seen….

Back to two days ago. I picked up the CGM. No problem.

I got back in the car and started driving out. And was overcome by memories. How I rushed to get back to my daughter, still at school, driving down the getting-dark road. How my father-in-law rang, having found messages from his son left all over. I pulled over to speak to him in that petrol station. My father-in-law, a retired doctor, took the symptoms from me. I sat there and said it over and over. I don’t know what he thought of me… Then, he was quite silent, and said he would phone the rest of the family.

So two days ago I drove back on my own just as I had done sixteen months ago. It was darkening then, and darkening now too.

I wish it had never happened, any of it. And I don’t like going back to that time, though clearly it is never very far away. For me, remembering what things were like before diagnosis is one of the very worst aspects to all of this. Does that sound selfish? And specifically, it’s the memory of how I felt about the future, what I thought the future would be like. I know we can’t predict it. But not knowing is part of the lightness, the hope and possibility of it.

The drive back from the hospital reminded me how very heavy diagnosis is. The weight of it and all it means. The whole future, so many ingredients of that future, barreling in on you, immoveable, endless and permanent. And worse, this future is your child’s. Your child has to face more in the future than you ever, ever did or wanted to. And none of them are positive, or even, I have to say, particularly hopeful.

As parents and carers and believers in advancements and how our attention can help, we search for brightness. Which is our job, and the best we can do, yes.

Over time, we have all pushed our way out from under it somewhat, but I have to confess that with diagnosis a rock became lodged in me. Perhaps like a gunshot, or shrapnel. And it’s like lead, dragging itself to a memory or a feeling, stirring just when I think so much has grown up around it.

And I’m going to share something else. Soon after E’s diagnosis, in one of our tearful heart-to-hearts, my daughter said it all so well. She said, now I know what forever is.

That’s right. And it’s not really a thing to know. It’s so heavy to carry around.

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