Be strong. Be brave. Stay positive, think positive; everything will be OK.
Well, no, that’s not how it works. Forcing positivity in a uniquely negative situation is something I’ve never understood as a Realist. There is no place for pessimism in healing and optimism can be annoying when you’re starring at your sick child, whose getting sicker by the month. If someone tells me to ‘cheer up’, ‘have faith’ and ‘be strong’ one more time, I may get violent.
So why do we feel the need to force positivity on people who are trying to heal? When did it become taboo to say, “this is horrible, my heart breaks for you, that must’ve been so painful, things are going to get worse”? Shouldn’t we acknowledge the trauma, let the patient/caregiver dwell in it a while so they might overcome it without guilt that they should be healing faster, stronger, better …
In the hospital, I would say to Red, “be brave; you’re so brave”. I said it so often, during so many invasive and painful procedures that she looked into my eyes and said “I’m not brave; I don’t want to be brave” and I felt like I had been punched in the stomach. What was I doing to my child? Why was I forcing her to be brave? During procedures, she is petrified, why couldn’t I simply acknowledge her fear and get her through it with comfort? I had perverted the word Brave and I was angry at myself. Red the Brave, we call her. Every chance we get. And she is, no doubt, Red the Brave.
I immediately changed my approach. I would no longer lie to her, tell her false positives like “it’s only a pinch, it’ll only hurt for a second, it won’t burn, it won’t ache”. Instead I began to say, ‘this is going to hurt’, I would describe how it might feel and explain how we could get through it. We would always lock eyes and breath together, through every petrifying and painful procedure that needed to be done. That was the real bravery. Seeing my less than two year old child mentally and physically prepare herself for archaic medical procedures and surgeries in the name of health and well-being. Nurses would look at us funny and judge with their body language when I discredited their Mary-Poppin’s approach to blood-work or IV insertions. “just a little prick” they’d say. “and then it’ll all be better”. To which I’d say “the needle is scary and it will hurt, the TPN will sting and burn your veins for a long time and you’ll feel sick in your tummy” … “but mummy is here, look at my face, look into my eyes, breath, we will do this together”.
Information, even concerning a painful subject is preferable to ignorance distorted by imagination
Pediatric pain is not to be feared, or taken by surprise; it is to be managed, and prepared for both by body and mind. So why do we think our children are incapable of handling this truth? Stop with your Child Life Specialists who blow bubbles and distract. It doesn’t help.
What kills parents more than their child being in pain, is their child discovering that your words of comfort are lies, false promises, forced positivity and they distrust not only the medical staff administering the procedures, but the parents holding them down.
Never be afraid to tell your child about pain, how it will hurt, how it will feel; especially a child with a chronic illness whose often in a hospital. “you can tell she’s in a hospital a lot” one mom said to me when interacting with Red. “she’s so … accepting”.
If her life is to be spent in hospital, then why not create a mechanism of mental strength for our child to cope? Pain, after-all, cannot exclusively be managed by lies and opiates. And what about emotional pain? Red suffers from nightmares and panic attacks. She has to feel my forehead on hers and hold my hand as she falls asleep, as we did face-to-face in our tiny hospital bed for weeks on end. She has a hard time being alone. Most playtime adventures involve doctors and patients and going to the hospital.
My goal as her mother, is to help Red master distressing and painful hospital stays, procedures and post-discharge life. It’s an approach to parenting I never thought I’d have to deal with. Chronic illness in a progressive disease means her situation will get worse, her procedures, even more invasive, her outcomes, even less hopeful. The sooner medical practitioners recognize that simple distraction techniques are ineffective for patients undergoing regular painful procedures, the better chance we have at developing real coping strategies. Let’s give children the same opportunity to prepare mentally and physically for pain … and that means being honest about the procedure, describing it to them fully and recognizing that pain manifests in many non-physical ways.
I tell her that although she is Red the Brave, it’s OK to be scared because mummy is too. Then I hold her hand as hard as she’ll let me and we lock eyes, take a deep breath … and it starts.