Within the support groups I am a part of, whether in person or online, a common topic of discussion is insensitive  comments and actions made by loved ones.  It seems every bereaved parent has at least one story (most many, many, many more) about being deeply hurt by the words, actions or inactions of someone they hold dear.

But just as there is no definitive guide book on how to handle your own grief, there is no ‘Support 101’ for friends and family to rely on.  The unfortunate fact is that it often falls to the grieving to instruct those around them on what they need.  An almost impossible task, particularly in the earlier days when  you don’t know what you need, aside from the one thing no one can give – your baby back.

Whilst it seems momentously unfair,  it is often a choice between losing friendships or being open and honest about the support needed.  Personally, I could not fathom further losses.   But I know for others, certain friendships had to be let go.

So how do you educate those around you?

1. As callous as it sounds, work out who is worth the effort.  For me, it was all of my friends but if you have one of those people in your life who only ever take, it might be time to let them go. You have nothing left to give.
2. Consider telling people about the positive things that remind you of your child.  Through telling people about seeing Xavier in the sunshine, they often refer to “Xavier’s sunshine” and will send me pictures of beautiful sunsets and sunrises.  It’s a way to share him and have people remember him that feels joyous.   It makes people feel comfortable about sharing in his memory and helps them realise that as much as his death makes me sad, his life makes me happy.
3. Have a forgiving heart. People are going to say hurtful things they don’t even realise are hurtful.  Try to see the intention rather than focussing on the content.  If the intention seems pure – explain to them why what they said or did caused you pain.  Do it sooner rather than later.  There is no point in holding onto hurt and leaving your friend completely unaware of the pain they unintentionally inflicted.  If you think the intention was hurtful, see point 1.
4. Share articles and blogs that resonate with you with your support network.  Not only are you educating your friends and family, you often feel validated – a sense of – “see, other people who have lost a child feel exactly the same”.  It helps the non-bereaved to understand that what we imagine “healthy” grief to look like and what the reality is are often very different.
5. Realise that the person who has stayed silent may have nearly rung a dozen times, had a half-written email filled with good intentions, verged on texting and then second-guessed themselves and thought their words would bring more pain than relief.  It’s not an excuse – if that person is dear to you they need to know that silence is often the most painful of reactions.   But don’t assume their silence immediately means they don’t care or aren’t thinking of you.  The opposite is the most likely scenario.
6. If it’s your baby’s birthday or anniversary and you want people to remember with you, let them know that in advance. For Xavier’s anniversary, I had ribbons made with his name on them and asked people to wear them. Others have asked loved ones to reflect on how their child has touched them.    If you’d rather be left alone, let people  know that too.  But please don’t get to the end of the day and feel wretched that nobody remembered your baby. Some people may have forgotten, others may have remembered and been unsure what to do and so opted for silence as the safest bet, particularly if you haven’t mentioned the day in a public way.  With the exception of close family,  I don’t expect others to have Xavier’s dates engraved on their heart as I do.
7. Lead by example.  People are so scared of doing the wrong thing – they will look to you as an example of how you want your baby remembered.  If you talk often about your child, they will hopefully also feel comfortable to do so.   Let them know you like talking about your baby (if you do).
8. As a bereaved parent, you sometimes ended up supporting others through their grief over your child. This isn’t okay.   This is pretty much the best advice I have ever read relating to support –  Ring Theory.   Share it.
9. If the thought of explaining how you want to be supported to all your friends and family seems overwhelmingly daunting, enlist the help of your dearest and closest friend or family member.  Get them to help you educate those around you. This also works well when returning to the workforce.  Having a trusted colleague talk to your team mates on your behalf can help avoid awkward conversations.   If you still feel quite lost and unsupported, you can ask friends and family to talk to SIDS and kids. Their counselling service extends to all of those touched by child loss. A dear friend often rang SIDS and kids in the early days as she wanted to learn ways to support me as best she could. I am so grateful for that.
10. Unless a person has lost a child, they will never fully appreciate the depth and breadth of your grief. That’s okay – we want as few people as possible in this “club”.  However, it’s  important to connect with people who do know that pain and can offer a different kind of support.  Whether online or in person, child loss support groups are incredibly important and will relieve some of the pressure on you and your friends and family.

There is nothing fair about losing a child.  It’s not fair that this burden of education falls on the people who already have such a heavy load.  But the reality is, it does and the way we carry that load has a significant impact on how well supported we will be during this journey.  By assuming people know what to do, or seething without saying anything when they try and fail, we break our fractured selves just a little bit more.   The best advice I received when we said good-bye to Xavier was to “go gently”.  Go gently on our own hearts, and the hearts that surround us.  Go gently.