I am sitting on my back deck, trying to breathe deeply and shake off the experience I just had. The experience was a maximus-in-full-screaming-rage from 34th and Salmon to 43rd and Division. For those of you unfamiliar with this area, I would say it is about a mile's walk or very very close to that. A mile of bloodcurdling screaming mixed with wild kicking and flailing. A mile of stares. A mile of stress. A mile in which I wanted nothing more than to stop the stroller and turn and walk away.
That sounds terrible, doesn't it?
Don't placate me. I know it does.
But seriously. When you find yourself at the point where all you can do is try to breathe and over and over again you are trying to count to ten in a measured, even voice, all in an attempt to keep from screaming yourself.....well, walking away seems like the best option out there.
This is the reality of post-transplant life with Max. This is the untold story, the story they don't really prepare you for before the transplant. Something tells me I would have been interested in knowing that my mostly angelic child would be transformed into a demon in the blink of an eye. Yes, something tells me I would have wanted to prepare myself for that.
The cause of this is that most evil of drug: the steroid.
It's not just that he has the most wildly fluctuating mood swings I have ever seen, it's that when he is in the throes of one, he seems 50 times stronger than what he normally is. And the truth is that he IS stronger. Let's just think about this for a second, ok?
What do athletes take to improve their strength and performance?
Ok. I rest my case.
The effect of the steroids does not alter simply because it is being used for something good: i.e. to calm down his immune system to combat rejection. No. It doesn't change. And think about what it would be like to have a 2.5 year old dosed up on steroids....
Yea. At times it is not fun. Today was one of those days. I don't know if it was because we had a very long appointment starting off the day up in the oncology unit getting an IV infusion, or what. But this has been one of the worst of his days so far.
It's honestly not that he's like this ALL the time. He's not. But when something sets him off (i.e. there being no more peanut butter crackers for him to suck on and then spit out), look out... You are in for a terribly rough ride... or walk, as the case may be.
Such is how my afternoon of walks and park ended with my two boys, with me immediately handing them off to Moose with an explanation that I could think about nothing but turning and walking away from the stroller (to which he chuckled in sympathy) and heading out to the back deck with a big, fat fucking glass of red wine and my blog.
It probably wouldn't have hit me so hard if I hadn't already been dealing with both Rowan and Max fighting beforehand, with them screaming at each other in Zupan's, with Max whining at me incessantly and refusing to tell me what he wanted (i.e. MORE TO EAT.. which he can communicate if he wants to), etc.
Ah well... I will take the steroid fits, as long as they are keeping that kidney alive and well inside Max. It is just a bit difficult to take at times. It's sometimes terribly difficult. How are you supposed to parent when you know the full intensity of the rage occurring is something out of your child's control... something chemically induced?
I will tell you something... the next time you see a parent with a screaming, raging child in a grocery store, try not to judge. Tell yourself that you have no idea what they are going through. Remind yourself that it could very well be out of both of their control. Give them a smile of sympathy and move on, please.
The accusing stares don't help. No. They don't.
