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…