"But I didn't know what to say."

"Tell X I'm thinking of her," says the friend, the therapist, the person we speak to every week but have never gone beyond a five minute chat, "I was going to get in touch, but I didn't know what to say."

I've had a lot of those messages lately. No criticism; children aren't supposed to die before their parents, and there aren't neat formulae, and people don't want to get it wrong.

There are some people, of course, who manage to get it very wrong. A few pointers; please, even if you consider your pets to be your children, don't say you understand because you remember how awful you felt when your dog died. You may very well have felt awful, but the person you're talking to will hear you comparing their beloved child to a dog. And that's insulting.

Don't suggest "it's all for the best, really" - I can say that about my child, if that's how I'm feeling, but if you say it, I'll probably want to thump you. That might be irrational, but before you do say it, forget how disabled my child was and concentrate on the fact she was my child.  And imagine how you'd feel if it were your child. "All for the best" probably doesn't come close.

Now is possibly not the time to argue theology. If X takes comfort from the idea that her child has grown angel wings, Y might prefer to think that her child is now perfectly at rest, Z may consider her child kicking up a ruckus in Heaven, and P and Q may believe their child is sleeping peacefully until they will meet again. L might be wondering what body their son will inhabit next, and D may be worried about a lonely soul wandering the earth. Doesn't matter; bite your tongue and pray for their salvation if you like, but unless you're being asked for your opinion, be polite about theirs. Don't take away their comfort over matters of principal.

There is no wrong way to mourn. One family may seem to be buoyant and inappropriately hilarious; doesn't mean they don't feel things just as deeply as the family who are weeping and tearing their clothes. And whilst the parents don't have a monopoly on grief, they are the chief mourners. Don't expect them to be able to comfort you over your own deep sense of loss for their child.

So what to do, what to say, how to help?

Different families are going to want and need different things. Some families may wish to close ranks and need complete privacy, telephone silence. Don't be insulted if they don't call back - this isn't about you, it's about them. Others may be desperate for someone to take small children for a few hours to give the parents breathing space, or need constant company to avoid panic setting in.

Many will be so bound up in the bigger decisions that seemingly smaller decisions are impossibly hard. So make your offer of help concrete - instead of "what can I do to help?" or "now you let me know if there's anything I can do", think of something you can offer - "I have made an extra lasagne, would you like it for tea?", "I"m going to the shops, do you need milk and biscuits?" and don't be insulted if the offer is rejected. The energy involved in thinking about the every day stuff of living is just huge, when every part of your mind is occupied with the dawning realisation that your precious beloved child is not living any more. 

If you know the family in a professional capacity, especially from school or other settings where you regularly saw the child without the parents, now is the time to dig out those photographs. There can be no new memories, and that is hard. There will never be another breathtaking smile. But you may have new photographs, and they are so precious. Each snapshot another glimpse into the wholeness of the child. So dig through your records, and get those photos onto a disc. Don't print them onto flimsy paper that will fade and crumple, and dissolve when they get cried over; if you had them on your computer get them onto a memory stick and pass them on - you're giving the family the most precious gift you could ever imagine.

For everyone, once there's no more living to be done, the only newness will be the new memories. So if you have a particular memory of the child, write it down and share it. It doesn't matter how you spell it, what your handwriting's like, whether the card has the perfect picture on the front (although personally I'd avoid Happy Birthday ones), share that story, however small, and you've given the family another precious gift, another glimpse into their child's story.

"You kept her lovely," "He always looked so happy," "I could see the love between you," "I loved the way she did that thing with her fingers." All beautiful, precious gifts. Now is probably not the time to mention how sick to death of her screaming you used to get, or how you hated the marks the wheelchair made. Stick to the positive comments.

Don't be afraid to mention her name; don't assume that because I don't, she has been forgotten. There is no time limit on grief. My loss is less immediate than many of my friends, and most of the time now that is much easier to bear. But it doesn't get any easier after three days or a week, and whilst there is a sense of completion which may come when the funeral is over, it can be even harder in the days following, with no distractions by way of choosing the right songs and the correct order of service and making sure everyone has been kept informed. So keep in touch, and if your meal or your company or your offer to collect the children from school was turned down previously, gently offer it again. But again, don't be offended if it's not accepted. This is about what the parents need, not about your need to feel better.

Which feels like an appropriate time to mention physical contact. Dusty Elbows, in fact. If you wouldn't ordinarily touch the person you are talking to, please think about why you're trying to now. And if the person is backed into a corner, surrounded by friends, please consider the possibility that this is a deliberate strategy to avoid being touched by people after having overdosed on the touchy-feely hugs. Not everyone is a huggy person. And even very huggy people can reach hug overload. And I've not personally met anyone who would actively choose to have their knees hugged, especially by someone they've not previously met. If the kneecap is the only body part you can reach, think about whether a wave will do instead.

For the record, since I'm linking to Dusty Elbows, and since people reading that in the past have told me I've said I don't like hugs, I shall state here that I do, in fact, like a good hug. I'm not very good at offering them, though. But I don't like being touched by people I don't know very well, who wouldn't normally touch me, I don't like having my back stroked when I'm not expecting it, and I have a feeling I'm probably not the only person in the world for whom that is true. But - touchy feely, standoffish, middle of the road, whatever - it's not about you, it's about the person you're attempting to comfort. If what you're doing is causing them to stiffen, if they appear to be backing away, please let them run! Oh - and in the interests of accuracy, I should state the church coffee now is jolly tasty.

Do be ready to listen. And don't be surprised if what you're hearing is something totally unrelated to the child's death. Remember, chances are the person you're talking to has been talking to several dozen other people lately, and he or she may well not want to repeat the same conversation to you. Or they might - and they might, in fact, be repeating the same conversation you had with them last time you spoke. If you have the time, listen again. Sometimes repetition is important, and repeated affirmations in response are what the individual needs to hear.

Now is probably not the time to complain about your own child's problems in school, or how awful your cold is making you feel. Although actually, talking about school problems can be a nice diversion - but don't be offended if the person you're talking to fades out of the conversation. Probably time to offer more cake, or think about leaving.

You may have very clear ideas on what should be happening. You may have to bite your lip. If the family don't want to sue the hospital, or tell you that isn't something that would help, don't bring it up again. If the parents have chosen a funeral which is rather different to the style of funeral you have always known, consider it an opportunity to broaden your experience. You may actually have done this a hundred times before and have countless experience to offer. If the parents are fading out, or being carefully polite, think about changing the subject. You may also not be the only one with experience, and they may have asked someone else already. This isn't a slight on you - it isn't about you, it's about what's right for the parents. By all means offer, but don't try to force the issue.

Not every conversation has to be deep and meaningful. If you're queuing together for coffee, and you've already had the "I'm so sorry for your loss"/"I was so sad to hear about what happened"/"So this hasn't been the easiest month ever then?" conversation, a simple "Hello" might do it. Normal conversation is good too, a lot of the time. But if you've heard the news from someone else, and you haven't acknowledged it, then do offer sympathy. Not doing so leaves us wondering whether you know or not, and breaking the news is hard to do.

Be yourself. Death, despite recent statistics amongst our friends, is not infectious. You won't catch it by spending time with us. Well, not unless you're really annoying. But if you're doing something you do regularly, and you normally invite the recently bereaved parents, invite them. Don't be offended if they decline the invitation, but don't just assume they won't want to join in.

You don't need a special voice, and there's no real reason why your head needs to rest on one shoulder. The people you're talking to haven't suddenly become saints or angels either. They are the same people they always were; but with a grief which has rocked their souls. That takes some time to get used to - and it isn't something you can understand fully until you have experienced it. Which isn't about excluding you. It isn't about you - it's all about the other person.

So to summarise. Don't compare the parents' grief with yours over the loss of your dog. Even if it devastated you at the time. Don't assume that the grief is less because the child was disabled - if anything, the sense of dislocation may be even higher, because chances are the parents spent much of the day just meeting the child's complex needs. Not having to do that may seem to you to be a blessed relief. But the parents would probably give an awful lot to be doing that again. Don't assign the parents a time scale after which they should be over it. And don't use the parents to try to make you feel better yourself. Don't make it about you - it isn't.

Do respect the parents' personal space, treat them as people and as the people they always were. Do talk about the child, share your memories and any photos you have of the child, and be responsive to signs that the parents would rather talk about other things. If you have something practical to offer, do offer it - but don't be offended if any offer is declined.

And if you're reading, and you think I've missed something, or disagree with me completely and utterly about something, please feel free to add a comment.

Tia