Although bullying these days tends to be frowned upon, it is still discreetly (or sometimes not so discreetly) active in our schools today. You can put on your pink anti bullying shirt for a day, but the next day is teasing as usual. Children with physical disabilities are two times more likely to be bullied than ‘normal’ kids. (source: Shriners Hospital International – #cutthebull campaign) Having said that, we have been fortunate enough not to have had to deal with bullying from peers yet, but Ben is little, so I am more than aware that we need to stand guard for signs of it. After the day I have had with Ben today, I have come to the full realization that the biggest bully in his life is ….well…..me???
Hospital parents live in a surreal world where despite our “I will always protect you” mantra, we force our kids into awful situations that will hurt them, both physically and emotionally. We are bystanders in the daily discomfort they must endure in order to move forward and heal. When I helped put Ben to sleep for his surgery last week, I did so being fully aware of the physical torture that he would endure in his ‘sleep’ Yet still I whispered in his ear that everything was going to be fine.
When Ben was 4 months old, we had to do physio on him five times a day. We had to stretch his neck through a series of excercises, which he hated, and he would howl with pain – think of someone else forcing you to do this splits or any other unwilling stretch and make you hold it. We kept his schedule on the fridge and we would stretch him when he woke up, mid-morning, after lunch, after dinner, and before bed. I couldn’t wait for the evening stretch because often Jesse would be home from work and do that one. It wasn’t a physically demanding thing we had to do, but it took all our energy. Each time I did it, I dreaded the next time we would have to do it. But, not doing it was not an option for us. If his team thought it might help – then that’s what had to be done.
Fast forward to today. Today is a quiet day at the hospital, but I knew that we had tasks that I wanted to accomplish. Our first battle today was over me washing his hair.
Me: I’m going to wash your hair today.
Ben: I don’t want you to.
Me: I still have to do it. You’ve got a whole bunch of blood and Frankenooze in your hair from surgery.
Ben: I don’t want to ….I’m afraid.
Me: I know. I’m gonna do it myself, and I’ll be very careful. Do you want to do it before lunch or after?
This is a typical conversation we have. We had many different forms of this exact conversation throughout the day involving: leg exercises, sitting up, going in the wheelchair, taking out his femoral IV, arm exercises, swallowing his meds, and taking his other IV out of his hand. It was relentless; it was exhausting.
Many hospital parents know that bullying (or strong convincing if you prefer) is part of our norm. We start the day knowing we are going to push and manipulate our kids to do things they don’t want to do throughout the day. Obviously, we soften our demands and try to offer choices, but the choice is never to NOT do something. These are some examples of the way we offer choices: Do you want the needle in your right arm or left arm? Do you want to sit up before lunch or after lunch? Should we do our stretches now or in an hour? We try to balance and guide, pushing our kids to do things they don’t want while still being aware that we need to soften it so that we can do the same thing tomorrow, a year from now, five years from now without traumatizing them to the point that they won’t be able to. There is a strange dichotomy between protecting your child and pushing your child. It is difficult to compromise in this strange hospital world.
So, today was a day filled with tears, probably more than we’ve seen so far in this journey. We spent most of the day trying to wean Ben off the morphine while balancing pain relief. Ben seemed like he was managing his pain well to this point, and the morphine has a lot of negative side effects for Ben – nausea, constipation, etc., so we thought we’d give it a try. He did go without it all day (he was still on Tylenol), but I just asked the nurse for some because it seems like the pain is catching up to him now. Ben managed to sit up (with lots of support) today for a few moments. He also was able to sit in his wheel chair for a few minutes too. Both of these activities were physically gruelling for him. I was also able to wash his hair today, and I gave him a nice sponge bath, which I think made him feel a bit better. Ben had his femoral IV and a few stitches removed from his thigh today, which elicited a lot of sadness and tears. His nurse brought him a beautiful red firebird car as a reward toy for him staying so still while they took it out. I have to say, this reward was well earned today. He later had his final IV removed from his hand, which is surprisingly tramautic for him, but anyways, he is now IV free!. So, we continue to make baby steps forward, but it is hard to see him feeling so bad.