What Families Like Mine Wish You Knew

Please know that every family like ours needs understanding, it can be a lonely road we walk. We often find comfort from the people that have similar experiences, but the truth is we frequently need it more from those who don’t. So if you have an employee, colleague, friend or family member living a life like ours there’s some things I think they’d like you to know.

They want you to know it’s hard, not hard like being a bit tired but hard like your very bones feel like lead. Often the appointments, letters and battles drain your soul in ways only a very efficient dementor can.

They want you to know, and they’ve probably tried to say it before only to be met with “yeah I know my kids are a nightmare” or something similar and then they can’t carry on, they don’t have the words.

They want to tell you how scared they are, that they have faced losing their child and that the truth is they are likely to face that again and again and again.

They want to tell you about the fear that creeps from the darkness when the lights go out, the memories that weave their way into their nightmares, the screams that pierce the silence of the night.

They may tell you, it may sound blunt and you may not take that seriously. Please know when you have to deal with things like they have to, you have to learn a certain amount of detachment. Holding onto the reality would make you sob and you don’t have time.

They want to tell you every phone call from school or nursery makes their heart race, they are always primed for the worst. It’s like a brace for impact moment. They need you to know that if they phone you in these moments, for any reason, that panic in their voice is real, they aren’t being dramatic.

They need you to know that health emergencies are just that, in fact for them most times it really is life and death.

They need you to understand that if this time it all turned out “ok” it doesn’t mean it wasn’t traumatic. They were still afraid, they could still feel their heart pounding in their chest and the wave of nausea hit as the knots in their stomach multiplied.

They want to tell you the reason they respond this way is because at least once it wasn’t OK, at least once they may have handed their child over to a surgeon and it was terrifying.

They need you to know they have sat in rooms being told the most heartbreaking news you can imagine, often repeatedly.

They need you to know that just because this particular situation appears over it doesn’t mean it’s over for them, they are still emotional and scared and reliving all the times it wasn’t OK and worrying about all the ways it might go wrong next time.

They want to tell you all of these things, but they can’t find the words. They have probably tried and they’ve seen the look of shock on people’s faces, or even worse their worries were dismissed.

They want to tell you, but they worry you’ll think them dramatic. They want to tell you, but they don’t have the strength left to explain. They are tired in ways you will never understand and fighting battles they hope you will never experience.

So when you ask how they are, they will probably say “fine” because they think saying anything else won’t help.

So please help, please try to understand, please know the things they don’t have the words to tell you. Just a little empathy can really change a life.

Written by, Emma Pilling