Followers of the wonderful Firefly blogs may know that our little Charlie was diagnosed with a particularly severe type of Rett Syndrome about four weeks ago.
Since then, I’ve felt alternately positive and positively bleak about our situation.
In good moments, I’m so upbeat that I can hardly justify being so sad the day before.
On bad days, I think my good days are just classic denial at work.
The truth is probably somewhere between these extremes, as it usually is.
The trouble is, diagnosis is a time of extremes.
When I feel one way, I feel it completely and with my whole heart.
When I swing the other way, it’s just as transforming.
When someone you care for is going through this, it can be hard to find the right things to say.
You want to help, but you don’t know how.
Here are a few things to keep in mind as you try to support your friends:
This journey is so personal, even if you’ve been through it yourself or helped someone else through it, what worked then won’t necessarily work now.
How well do you know your friend?
Are they a ‘heart-on-the-sleeve’ sort of person?
Do they cry easily and openly?
Or are they more like me – I cry at television commercials, but never in front of anyone.
I’m the sort of person who doesn’t want a long cuddle, but the former friend might love one.
I may not want to cry in front of you, but in the week following diagnosis, I couldn’t discuss it without glassy eyes.
It somehow helped to know that other people were feeling this with us.
When I saw tears in the eyes of my friends and family, I had to gulp down the lump in my throat but I didn’t feel so alone.
Most of my friends gave Charlie an extra big squeezy cuddle or two, but for the most part nothing was different.
We talk to her and treat her exactly the same way we always did.
And we want you to do that too.
Our children haven’t changed; just our understanding of their condition has.
And neither have we!
We might be withdrawn and bewildered right now, but we’re still ourselves under all of this.
If you’re not sure what you can do to help… ask!
There may be something you haven’t thought of that they really need.
It could be practical – child care for hospital appointments or lifts to the train station (because hospital parking is crazy expensive!) – or they might ask you to take them out for a quiet coffee or a day of distraction at a theme park.
Of course, they may also say that they don’t need anything, which is perfectly fine too.
I know that sometimes I just felt too overwhelmed to think of anything to suggest.
If you’re a really close friend, consider offering a ‘date night’ for the parents to get away from it all and talk about it in private – or not, whichever they need.
Or perhaps you could cook them a heat-and-serve family meal.
Mostly, though, be guided by your friends.
They probably will be oversensitive, and possibly easily offended or quick to snap your head off.
They might forget birthdays or dinners they’ve agreed to go to.
They may even withdraw from you completely.
In these cases, I’d say trust in the strength of your bond and know that this time will pass, and your friend will come back to you.
I’m fully aware that I’ve been less than the perfect supportive friend throughout this time, but I know that the people I really trust will forgive me, and they know I’ll support them in the same way should they ever need it.
If you really think that your friend is struggling more than would be considered ‘normal’, don’t be afraid to tell someone they trust about it.
If you know their parents, for example, and you know that they have a good relationship, pick up the phone and talk to their Mum.
Alternatively (and choose your moment carefully), approach them gently about it.
It’s never wrong to ask, ‘Are you OK?’ or to say, ‘I’m worried about you.’
If you’re still there with an open hand when your friends finally see a light at the end of the tunnel – when they emerge, blinking, into the sun - you’re a wonderful person and a true friend, and you’ll have a friend in them (or me) for life!
These are the situations that quickly sort the gold from the dross.
Be the gold.
Does your child wear pads or nappies/diapers?