I have had many wonderful, encouraging responses to my post about the to-do list. It has reminded me not just how kind people can be when it comes to the crunch, but also how possible it is to find those who can and do empathise with my situation. Thanks to them, I feel better about airing my earlier frustrations.
The letter below was emailed to me privately, but I wanted to share it with you on the basis of the writer’s good intentions, and publish it here with her permission. Names and identities have been changed at her request.
(In case you’re wondering – I love public speaking, especially when I speak and sign.)
Hi Melissa
Very pleased you found some (very stylish) thermal socks for Issy.
You sounded a bit down in your to-do list post. I imagine those feelings always sit alongside your usual fire and determination to fight and overcome all the unfairness and difficulty that life has thrown at you all.
You don’t often share the more – can I say desperate and hopeless feelings? (if that isn’t too strong) I feel honoured that you have. Of course I can’t truly understand, but it is a great gift to all who know you personally, or through your writing, that you share so much of your experience with us – the feisty, the strong, the funny, the triumphs and the despair too.
I can’t tell you how much I value this gift. You are often the example in my mind when I find myself leaping to judgement on another parent, or indeed person – how little I know of their circumstances, their journey, their life. You are often also the example that leaps to mind when I just can’t seem to get round to some ‘vital’ task . . . in an inspiring way, not guilt inducing!
I also wanted to say – and I’m sure you know this – but your life and the incredible strength, organisation, patience, love, obstinacy, intelligence and everything else you need to live it, it is all quite overwhelming and, in a way, frightening. Hard to get your head around. Maybe something people don’t really want to face or think about.
When the people you meet say they understand, I doubt they mean it literally. I expect they don’t know what to say, maybe they need to believe things aren’t as hard as they are, maybe they just can’t, just don’t have the capacity to understand a life so different.
Maybe their lives are hard in other ways that you can’t see . . . (you see? this is how you help me to think!) Anyway. Last thing I wanted to say was that you write so beautifully, with such fire and articulacy and truth – I think you are capable of connecting with many people who are not parents, or have no experience of disability etc.
I am plotting to get you over to some schools I know and speak about your experiences (if I can find the right people, money and if you’d be interested). Rightly or wrongly, these kids are the ones who will be running the country in 15 years’ time, and I think it’s a fair bet that your story would be one of a kind they would not encounter otherwise in their privileged bubble of a life.
Not a promise, but just that I think what you do is valuable and important, and I reckon that if you can help people to understand – just a bit – then good.
Love, S
