Comments 12

What we found unhelpful while looking after a terminally ill child

I need to rant. I so do! 

Although we found most people helpful considerate, kind and understanding during the past two months, there were things that time and again tipped us over the edge. I am not writing this post to make people feel bad but to let people know what is appropriate and what is not when someone’s baby or child is very ill.

1. Don’t say stupid things like “chemo kills” to a parent whose baby is about to start chemotherapy!

The evening before Georgie was due to start his treatment a “friend” kept Alex up with emails about how dangerous chemo is for the human body and how is eventually kills…And actually,dear “friend”, it doesn’t. Most children undergoing chemo go through it successfully and their lives are restored back to health. This comes from nurses who have been working in the cancer ward for decades. Georgie’s case has been atypical and unique. Doctors were astounded he didn’t respond to treatment. The norm would have been that he did. So please, please, check your facts before you speak! A parent facing the scary thought of putting their child through such a harsh treatment doesn’t need to hear stupid things like that, for crying out loud!!!

2. Don’t satisfy your curiosity about a medical condition by asking a parent tens of questions

The last thing a parent wants to do, after being trapped in a tiny and depressing hospital room, caring for a sick child is to answer questions. I found it soooo tiring, time and again. I actually ended up shopping far away from home, as I was terrified of running into people who would start asking questions. I know that some people think that they show care by asking but hey, you know what? It doesn’t help! If questioning is your way of processing a situation then get online, search about the condition, chat to a friend to to your spouse but never, never overwhelm a parent by asking more that “How can I help?” And don’t worry, the answer is usually “nothing” but your sensitive approach will be forever appreciated.

3. Don’t ask “How is he doing?” 

Until yesterday, we have still received phone calls and messages on Facebook asking how he was. I have been very good at updating about Georgie on Facebook until….there was nothing to update. Once we moved into the hospice, I let everybody know via Facebook that I will stop updating. And the majority understood. But there were still people who would ask! Again, I know that they care and want to show love. But hey, that is not the way! How is he? He is dying. He is sleeping nonstop. He moved from being too sore to touch(I haven’t held my baby in ages for fear of not hurting him) to being generally unresponsive to any stimulation. He can’t feel his daddy holding his hand and kissing him. He doesn’t feel me petting his head. He doesn’t show that he understands when I tickle his belly or kiss his little feet. His eyes have moved from expressing pain to expressing nothing. Unfocused. His body is wasting away. His muscles are growing limp from not being used. This is how he is! We don’t talk about it because we want to spare you the details. Because we believe our baby has the right to die with dignity. Without any gory details revealed. So please stop asking!

4. Keep your feelings to yourself

How many times have I heard from well-intentioned people “his story has made me cry.” Well, I am truly sorry but let’s put it this way. You still have your kids to tuck in bed at night. You didn’t have to witness a fraction of the pain and the distress our baby has been through. So put your big girl/boy knickers on and talk to me with a smile on your face. And if this story has affected you, mourn the terrible waste of love, life and opportunity in the privacy of your home. Like we do as his parents.

5. Do what needs done!

This one is for relatives whose grandchildren, nephews or nieces die young. Get over yourself! We have witnessed a wide, wide range of responses from our families. People who shut themselves up COMPLETELY from the moment Georgie was diagnosed. Not a single word. Or email. Or text. Nada! Or people who decided to use their preaching talents on us, despite us asking them politely to refrain. 

Or people calling in the middle of the night, crying, unable to cope with their own emotions. Really???

The most hurtful for me must be the “I don’t want to see him like this, so we won’t be coming to be with you.” Say what? He is your only grandson! He is the son of your son, who now grieves like never before and needs you like never before. Your feelings should at this time come second and your child first. Put on a brave face, bottle it tight, get your head out of …sand and be here for your son, for goodness’ sake!

6. Don’t pretend it is okay.

We have had people visiting as if nothing had happened. Even expecting cups of tea. Or pretending to be happy. Oh, yeah, we can tell the difference. Or pretending he wasn’t in the room. Or..or..or..He is still here. He is still my son. He is still loved beyond any stretch of imagination by both his parents and by his silly sister. He was wanted, expected eagerly, given the best of everything. He is for us precious, beloved and he will stay in our hearts forever. So don’t pretend around us. Don’t pretend you understand. Don’t pretend this is ok. 

So, what can you DO or SAY in similar situations?

Give a cuddle. Hold the hand of the one in pain. Say “I don’t know what to say.” Take the siblings out so that the parents can spend the last days, hours with the dying child. If you are crafty, do small keepsakes for the family. We have been blessed with photo sessions, canvases, photo frames…etc. Things that will keep the memory alive. If you are good with computers put together a short clip celebrating the life of the dying child. Him smiling. Very important for the family in the weeks and months to come, when the memory of him suffering will fade and the brain will do a wonderful thing called selection. Choosing to remember the good moments. Say “we love you.” And be patient and forgiving. Sorry for this post. I just needed to rant…


This entry was posted in: Parenting


Mum to one beautiful girl on earth and one sweet baby boy in heaven. Privileged carer. Encourager and friend.


  1. I think u might be entitled to a rant, and in all honesty people will probably appreciate this. If I knew someone in this situation I wouldn’t know what to do coz I’ve never been through anything remotely like it, I’ve never experienced that amount of pain or fear, I don’t think many people have. They should know what u expect from them, I’m sure so many people close to u want to help out but don’t know how, this gives them an idea. As for the people who have shut off, whatever, fvck them, spend time with those who’re there for u and ur family. U come across as an unbelievably strong lady with a strong and brave family. I’m praying for you to keep up this strength and courage. Xxx

  2. Damaris says

    What a healthy and constructive rant. Great post Oana! I really like how you express yourself and such deep truths about going through sickness and tragedy with dignity. And I’m amazed at how graciously you do so while you are going through something heart-breaking. It’s amazing how much people around us affect the quality of our journey. And it is amazing how much people who are ill or caring for those who are ill have to coach others on how to help or comfort other people who are shocked with the news or want to know information for consumption, not to love on you or help you. You have been so gracious in this journey. I’m so glad you are taking the time to be a family and go through the roller coaster of emotions in privacy. It will pay off later. Sending you prayers as you go through this life-changing valley.

  3. I’ve only just heard/read, you slipped out of my FB feed and the last I heard things were improving and you sounded positive. I am so very, very sorry. In fact – I don’t know what to say, and thank you for writing this as you have every reason and right to offload, and it’s incredibly helpful for people to know what might help. I’m thinking of you and your family Oana. xxx

  4. *hug*

    There’s not much else I can do…
    I just found out about you through a linkup, so I don’t know your story, but I felt I should give the small hug I can offer you over the internet in this time of grief.
    He’s a beautiful boy. x

  5. Veronica says

    Just stumbled on this story by accident & was horrified. I went to Mexico 6 years ago with advanced Stage 3 cancer, have been on a herbal program & survived. Please get in touch if you would like details. They treat every kind of cancer. Beautiful baby. He has to be given every chance. Much love x

  6. Mummy Tries says

    Please rant away! We’ll be here waiting with cyber hugs xxx

  7. Violeta says

    Thank you for sharing this, Oana… hugs and prayers your way!

  8. I can so relate to this x

    Most of the time people dont know what to say or do. I know at the beginning I told people who couldnt keep their emotions under control not to visit as I didnt want Elizabeth to see them upset. I didnt want to feel their emotions when I was numb myself.

    I bet you have had so many people saying they are amazed at how you cope, I just want to say well done for coping. I know it is hard every step of the way but we cope because we have to. I hope to never find myself in your position but if I did I would love to be able to do it in the dignified way that you have x

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