The Things People Say And Do – 26 Months Later!

This week is Dying Matters Awareness Week and as it is I thought that I would re air my post that I originally wrote on June 14th 2012, called “The Things People Say and Do” mainly because I still don’t think people know how to support someone when their child dies, and also because I want to add to this post.

I still stand by all of it, but there are things that I want to add.

Twenty six months down the line there are things that I have learnt since I wrote this post. (Stuff in italics was written in 2012)

Don’t call Rhianna’s death, “the case”, “the event”, “that thing that happened”, “the problem”, or “the issue” Rhianna is and was our baby girl she isn’t any of these statements, she is our baby. She died we are all coping in our own way but please don’t ever insult us by not even mentioning her name when you are talking about the situation that we are in.

Don’t assume that you know how we feel, because to be totally frank you probably don’t. Don’t sit there and say “I totally understand” if you have never been through this you really do not understand, and we both hope that you never ever will.

Don’t assume you know what we need, we barely know what we need, so I am baffled how you know what we need. “You need to be around other babies” “You need to steer clear of babies” Only we know what we can do, and to be honest every baby is different it depends how we feel on the day and the distance we have from them. Don’t assume you know what our answer will be, we don’t so you really can’t. 

Don’t leave us alone, you wont catch this it is ok. We can talk about other things, we still have Baba and now Boo we still have a life we are not consumed with just talking and breathing the death of our baby.

Don’t feel bad if you don’t know what to say, it is fine, neither do we. Just seeing people is fine, sometimes that is all you need.

Don’t feel bad about moaning about your lives. “So sorry I shouldn’t be moaning with what has happened to you” It is fine, it is nice that you act the same. Do moan we want to hear about your lives.

Don’t assume, that because Rhianna was stillborn she meant any less to us than our other children, that we aren’t grieving as much as the person down the road that lost their child when they were four. Rhianna was, is our baby, our only girl and she always will be, she may not have laughed, smile, sat or stared at us with her eyes. We don’t and wont ever know the colour of her eyes, but she is no less pain, she is “not as bad” as any other child that has left their parents too early, whether they are stillborn or 2, 7, 15, or 27. It is the most hurtful assumption you can make.

Don’t think we should be over it now. Yes 26 months have passed, we will never be over it, we will forever be a family of five surviving as a family of four. I can tell you for certain we will get upset, when she should be starting school, leaving school, when you are walking your baby girl down the aisle, when your daughter gives birth. They are all things we wont have, we will never have and we will still cry, be it 5 years, 16 years or 30 years down the line. We will never get over it. Don’t think we should.

Don’t forget her! It seems a silly thing to say, but write her name in our cards, mention her, text us on her birthday and Christmas and Mother’s Day and Father’s Day. Just remember her. Let her touch your heart and let us know. It’s a selfish thing but it’s hard not to hear her name, its hard to realise you do remember you just haven’t said it. Say it, shout it with us and remind us you remember her.

Don’t be surprised if we still can’t see your newborn baby girl. The same as the above, it is still hard I don’t know if it will ever not be hard. Don’t take it personally if we step away we aren’t not happy, our hearts literally crumble knowing we will never have that cuddle. I still can not walk through girls baby clothes aisles, I just want to curl up and cry so don’t be offended if you have a girl that I may buy you a puzzle, clothes are just too hard.

Don’t tell us our life is complete now we have had Boo. Don’t remind us we are lucky to have two beautiful boys, yes we are but as I read the other day – which of your children would you choose to live without. We are not complete we never will be. We are not lucky, we are bloody grateful that we have two wonderful boys, but we aren’t lucky. If we were lucky we would have two wonderful boys and a gorgeous girl all here with us on earth – we don’t. To be honest just don’t even go down this road, it is too easy to say the wrong thing.

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Do ask if we are ok, we will more than likely lie, but it is still nice to be asked. There may be times that we will break down when we are asked so be prepared it happens and we don’t always know when it will happen.

Do say Rhianna’s name, especially when talking about her, we wont spontaneously burst into tears, and we wont combust, she is our daughter our family and we will always talk about her so you can do to.

Do remember her, she was a part of so many lives even though she never breathed the air we breath so we want people to remember her.

Do say “you lead us” “you tell me when you can’t cope and I will step back” it makes us feel comfortable to tell you the truth and we don’t feel so bad when we need to say enough is enough.

Do act normal, talk about your issues, your child’s constant crying etc don’t be scared.

Do accept that we may not be as full on with your new-born as we would have been, please don’t be offended as I already said sometimes it is ok, other days it is too hard. We will get there but please don’t take it personally.

Do be there when we need you, you don’t have to say anything you just need to be there 90% of the time.

Do understand loosing Rhianna changed us, and sometimes we will do things that you will not understand, they may upset you, but please try to understand. Anyone who has ever read this blog will know we didn’t tell anyone about Boo coming, I couldn’t I was too scared. I hurt people by not telling them, I didn’t tell some of my closest friends but please don’t be mad when we do these things please try to understand we aren’t going out to hurt you. We are surviving. Surviving the most terrible thing in the only way we know how. So please just understand why, and not take it personally.

Do talk to Baba and more importantly Boo about Rhianna Lily. Baba remembers, he loves her unconditionally, Boo wasn’t here and we would hate for him not to know. So talk about her, tell him she would love him and that he has a big sister in the sky that looks out for her. Embrace heaven with them, even if you don’t believe, they do, please don’t ever take their sister in the sky from them. Agree with what they believe, go with the flow and let them love her in their own way. Even if that is her shopping for pink glitter in the sky, agree!

Do remember the special days, and I am not talking about the birthdays, Christmas etc, remember her when the other 5 year olds trot off to school, remember her when it’s Mothers Day. Just let us know. Rhianna’s flower is a lily, and having people send us pictures of lilies brightens our day at times, knowing that people have them growing and are thinking of her.

Do remember we will always be a family of five, never just four.

Do get over your discomfort, none of this is easy, it never will be and we know it makes lots of people uncomfortable, but just try to imagine how we feel! If you can get over your discomfort maybe you have just got us through a day. Remember we live our days, but sometimes, and we never know when we just survive the day, and you not being uncomfortable can make the difference between living and surviving!