It takes a particularly brave person to be the friend of a parent with a rare disease. We are not always the easiest company. I sometimes close in on myself and turn my back on everything. I get angry that life could be this way and shut down. When I shut down, I also shut people out.

It’s a brave friend who takes the time to ask “How are you?” knowing that that simple question could unleash a tirade of everything I think has gone wrong, or me tearing myself open for them to observe all the pain I am in: see here? This is my heart, see this spot right there? That’s where the pain never stops because I can’t make my child better. See this part of my stomach? That’s what clamps up so I don’t eat because I’m in a panic about the future. And here, in my mind? Do you see these ash-coloured dreams I dreamt for my child before the diagnosis? Sometimes I go back to them and poke them about, stir the ash around them a little, for no good reason, just to make more of a mess in my mind. See this part where my worry lives and doesn’t let me sleep? Do you see all of this? Are you taking in this anatomy lesson in my personal sadness?

The friends I have know this. They know that I’m sometimes like a simmering volcano because I am so tired, so hurt, so confused, that just asking how I am makes me erupt.

Brave friends are willing to stand in the gale force of my agony and face how bereft I feel. Because apart from the positivity and the determination to give both my children as normal a life as I can, there is also a lot of raw sorrow.

I am in awe of such friends, because the easy option, as I’ve seen several times over, is to not ask. The easy option is to not check how I’m doing, because my answer might be too much for them to handle. Self-preservation is a simpler solution, and I don’t begrudge people that.

I have had people who I thought were friends step out of my life and vanish as if we had never met, and it just makes me value my friends more, because they can ask me “How are you?” and they can take it when I reply “Not great. My son is getting worse, and I don’t know what to do. And what if he asks me if he’s going to die from this and I don’t know what to say? And what if his brother clocks on that this whole thing goes downhill? And what if it makes him go off the rails as a teenager? And what if I forget his medication? And what if, what if, what if?” Other times, these friends will read into my silence and know that something is wrong. That they can pick out the conversation hidden inside the words that I don’t speak never ceases to amaze me.

I don’t know if I thank these brave friends enough. I probably don’t. But they are a priceless asset to rare disease families, because they are the ones who see you trapped in the tornado of your life, and they willingly step into it with you. They choose to be at your side even though they know they can’t fix things for you. They talk to you about their lives outside the tornado and the things their own children do, and they do this with sincerity and honesty, even though they know that the milestones they talk about might make you burst into tears because your own child will never meet them. They ask me how the last appointment went, hoping for good news but ready for hearing about how it all went wrong.

If they are afraid of all this, they hide it very well. Without brave friends, this whole journey would be so much harder.