Disney Land

My heart is heavy today. It is not an uncommon occurrence for me. The pressures and sadness that accompany this struggle with Spina Bifida have their way of getting to me quite often. It is a cycle of pressures and grief that build up over time, anger that usually blows up one night (last night), and depression that sets in the next morning (this morning) and lasts at least a couple of days - sometimes more... and then it isn't too long at all before the whole thing starts over again.

James has never been well. When he was at his strongest last Christmas in his arms and legs, he was still vomiting his guts out every stinkin' meal, and it was a constant struggle to keep him from failure to thrive. I keep thinking that our family just needs to be strong enough to make it through the current crisis, until James is well, but the time never comes when he IS well! I've been thinking the same thing for 4 and a half years! We put everything else on the back-burner for the sake of James' health, and for what? Has he gotten better? No. Worse, actually. And I am running out of hope.

It seems like either James is going to fall apart or I am going to fall apart, and it is a constant struggle of trying to balance the two. And the truth is that we both are slowly falling apart...

I feel the urgency of his medical needs, and on the one hand, I feel like I need to drop everything in my life and move down to SF and sit in the hospital lobby, waving at his doctors as they walk by, as if to say, "yeah, it's us. we're still here. i'm hangin' out until you actually DO something..." And on the other hand, I DO still have a marriage that is pretty well intact, and another child, and one on the way -- all of who also need me, and need me to be mentally healthy. And I am already starting to see the ways that all of us cope that are not so healthy, and I really hate it. What is going to happen when I start seeing it in not only Seth and I, but in our other children as well? NOT good. Not looking forward to that... and yet it seems inevitable...

I need to pace myself, and yet the urgency doesn't really allow for that. So I'm kinda stuck.

In some ways I feel like canceling all of the doctor appointments from here on out, and just taking James to Disney Land, his one dream in life --- and just living there a while... Giving him whatever he wants to eat, whether it has milk or not, spending as much as we want, whether the money is there or not, saying F-you to the catheters and suppositories and meds and blood pressure cuffs and crap. Blowing it all off.

Would his health really be that much worse? Doesn't really seem possible at this point....

Would I be giving up? No, I think I would be just beginning to LIVE -- and allowing him to enjoy this life as best he can. Yes, this Disney Land option is sounding better and better the more the phone rings, the more the calendar fills up with medical appointments, the more stupid surgeries that make no sense demand all of our time and emotions and money and resources and sanity! Yes, it is sounding nicer and nicer the more my list grows of things to work on for James, updates I need to give, appointments I need to schedule, crap i need to work out.....

And some would say, "well aren't all of these things you have to do worth it when you think about the possibility of losing him someday?" And I say that that makes the Disney option even more appealing, because right now I'm missing out on what really matters about my time with him, while I'm busying myself managing all his medical crap.

And so, if James and I disappear one day -- you will know where to find us -- we'll be eating ice cream at Mickey's house after riding the teacups as fast as we can make them spin - my cell phone will be loooong-gone in the bottom of the pirates of the caribbean's waterfall - and none of the doctors will be able to find us, even if it IS a small world afterall...

Oh, and maybe - just maybe - you will see James taking a little WALK down main street USA.

Good thing we have something much better than Disney Land to look forward to one of these days -- SOON AND VERY SOON!!!!!!!!!!!!!!

-Lynae