I think sometimes I have too much perspective. Which probably sounds arrogant and insensitive. And maybe it is.
Because of Brody’s issues, I not infrequently have conversations with people that are comprised of them starting to tell me about a problem they are dealing with, and then stopping themselves because, they say, their problem is insignificant compared to Brody’s problems. I respond, sincerely, that just because we may be dealing with Brody's issues doesn’t mean that [insert their problem here] is any less troubling, draining or heartbreaking for them. And I really believe that, and have never once thought differently.
I used to think Brody’s medical issues were devastating. But in the last year, becoming acquainted with Dante, and other Vacterl kids who have had 20 or more surgeries and are younger than Brody, who seem to live in the hospital, I have gotten perspective. It really isn’t as bad as I used to think, because Brody could be so much sicker.
I think especially in the last few months I’ve shed a lot of self-pity and looked positively on what’s going on with Brody. I outlined in my head the next course of surgeries: a, then b, then c, then maybe d in the spring, etc. We can do that, I said. We can get through that, and then we can get a “rest” from surgeries. I was thinking that, with the hand surgeries in particular, it will be so nice not to worry about how to give Brody baths, or take him swimming, or let him play in the sand or water, because he won't have a cast on after the spring.
Then, when we were in the hospital last week, I had a talk with Brody’s hand surgeon. He’s brilliant and talented and I really do trust and like him, which is saying a lot because I don’t trust or like most people.
And he told me, after looking at Brody’s hands and arms during the surgery, that unless Brody wore some kind of splint for the foreseeable future, his hands were not going to remain straight, and they would continue to curve in no matter what he or we did.
Even with the surgery to straighten and centralize the wrists.
He said even the bones were curved, to the point that he couldn’t put the pin (from the arm to the hand, to centralize the wrist) in straight.
Writing it down right now, it doesn’t seem really upsetting on "paper." But the reality of it is something else. I had my very own sobbing pity party in Brody’s hospital room. No family vacation with saved up annual leave. No break from casts or splints for Brody. The poor child is so skewed that he thinks casts are fun and splints are pretty.
The surgeries not working, which is essentially what the surgeon was saying to me, was not part of the plan. Brody having more surgeries, and having to wear a cast and splint for the summer, and maybe for all his summers, was not part of the plan.
You might be laughing now. How could I actually have believed that the plan would not change? You'd think after 4 miscarriages, 2 1/2 years of trying to have a child and 2 1/2 years of dealing with Vacterl association, that I'd know better, right?
I didn't know better. I imagined that we’d have a “fix” for the hands and that the thumb surgery was the 2nd to last hand surgery and casting event for a few years at least. For the last year, and all 7 surgeries of 2008, I kept telling myself that once we did a, b and c, then his kidney reflux would go away, and then his hands would be straight. He’d have thumbs. Yes, his arms would be shorter than most, and yes, he’d have 8 fingers, not 10. But the surgeries would make his arms straight and he could play and sleep and eat and swim without casts and itching and discomfort and telling us the cast is too tight and to take it off.
And now, all my best laid plans are gone.
And it’s ridiculous because I bet Dante’s mom would trade anything for Dante to be here, in any shape with curved bones or not, in casts for the next 20 years or not. I really do understand that, and then I'm still upset by the news about Brody’s arms.
And then I get mad at myself for being upset. Because I have no right. I really have no right. My son does not have an illness that will shorten his lifespan. He has no brain damage or developmental delays. We have jobs, a home, and really the most incredible support system. What the hell right do I have to be upset about this?
And then I remembered what I’m always telling friends who censor themselves around me: just because someone else seems worse off, doesn’t mean you don’t have a right to be upset about your own issues and struggles.
But I can’t stop the constant reminding of myself that we don’t have it so bad so what in God's name am I complaining about?
And then the real worry starts in: that, when faced with my whining and lack of gratefulness, the universe will send something our way that will make everything so far look like a stroll in the park.
So that's why I wish I didn't have so much perspective.
Because (a) I think I'm losing my mind some days because I don't know what to feel; and (b) I think I need to feel a little disappointed about the setback in order to process it; but (c) I don’t feel like I’m entitled to really be upset enough about it warrant "processing"; and (d) on top of that, I'm terrified that if I do allow myself to feel whatever the hell I feel, then that will trigger some cosmic chain reaction that will bring us something even worse than anything I've ever imagined.
I'm going to pour myself a vodka tonic now.