Pressure

It looks like Joel will finally be going in for his MRI. We first asked for this MRI back at the end of August, so it has been a very long wait. And now that it is almost upon us, I wonder "What am I expecting from it?"

Yeah, I still know why we wanted it done. And I always knew that it may not really show us much, or even be that accurate. I know that it will help us make decisions, if it shows anything "clear cut." Like if Joel's brain doesn't show any changes from the last time, we'll be more sure planning a vacation, or leaving any DNR decisions off. Though we will always realize that things can change very quickly, so it isn't really a guarantee. But like I keep trying to explain to the docs, I'm not looking for a GUARANTEE, I'm looking for a TOOL to use when making decisions.

And if Joel's MRI comes back looking like Swiss cheese, well, that will help us a bit too, though it will be very difficult to hear.

But it might come back showing only slight changes... What would that mean?

And no matter how it comes back, this weird disease can always surprise you, for good or for ill.

This whole MRI think is just one super-sized tangled knot. And all the kerfuffle the whole question over anesthetic brought about hasn't helped. It seems no one ever can agree on what the best way to get Joel to sleep really is.

So when the MRI department realized (because believe me, almost no one ever actually reads Joel's 3 inch thick file) that Joel has 1. low tone, 2.reflux, 3. is fed by g-tube and not by mouth, they just about flipped out. It appears that Joel needs A LOT more bells and whistles for his MRI than other children do.

The big concern is that with low tone he might have difficulty swallowing, he might have reflux (though his tummy is empty), he might start choking in that big MRI machine and no one would know until he was dead. Yup. Funny thing is, while this at first seemed a bit of an over-reaction to me, later on, the more I thought about it, the more I too was a bit concerned...

Thing is, I never really do know exactly where Joel stands with his health. I mean, that is how it is with a degenerative illness... The first sign that Joel is having trouble breathing just might be that he stops breathing during an MRI.

I am so used to living all of life with risks, and I don't even know anymore which ones are the "serious" ones to look out for. I mean, I am much more afraid that Joel will get pneumonia from one of the many colds/flus that have gone through our house lately and that is how he'll die, then on the slight chance he'll have trouble during the MRI. But, if his tone is so low that pneumonia is a valid fear, maybe so is an anesthetic??

In any case, we still send Caeden to nursery school, that den of swarming germ propagation. Because if we are living in a bubble, are we living at all?

But here is the pressure for me. As the mother of a healthy child, I know that other mothers all face guilt and regret every day because they didn't handle something the right way. You know what I mean. You screamed at your child, instead of speaking calmly. You laughed off their ridiculous fears, instead of reassuring them. You told them you were sick of their whining, and then they puked and you realized they really WERE sick. All those many things moms feel bad about later. Too many to count.

Now that I have Joel, that pressure is ten-fold. Because his health is so complicated and so precarious and ???? I don't even know how to describe it. It feels like there are so many "mistakes" that could be made that shorten his life, or lower its' quality. Was I vigilant enough on getting his vit. K levels checked, or his adrenals checked for deficiency? Is eye surgery more stress than it is worth? Do the seizure meds need to be changed? With every infection: "Should I take him to the doctor now? how about now? Or now?" Even though he has been sick many times with out needing to see his pediatrician, every time I still worry that THIS time is the time that it is serious and should be checked out immediately.

Just about every day I remind myself that Joel's death will NOT be because of anything that I, Steve, or anyone else involved in his care, did or did not do. I remind myself that Joel is dying of an incurable genetic condition, and that though a secondary problem might be listed on the cause of death, his death is ultimately inevitable, and no one's fault. This disease IS FATAL.

That is why I hate it so much when doctors and medical staff make such a big kerfuffle about it all. It's not that I don't want the best possible care. It's not that I wouldn't do just about anything to lengthen the number of Joel's days on earth. I'm sure not trying to get rid of him.

But I already battle with walking on eggshells every single day. I am delicately balanced up here on this tightrope of "reasonability." I am constantly fighting my fears and apprehensions and questions over every single health related decision (trust me, there are alot of them). So when they get really hyper about stuff, it is really stressful for me. It adds to the pressure I already feel... And it makes me feel like a bad mother, for even asking for such a "risky" procedure as an MRI!!

There is no solution to this... It is just a battle I will fight until Joel is gone... and maybe even after. Letting go of guilt, and a misplaced sense of responsibility for how Joel is doing. In the end, I have to leave it in God's hands. I'm just human, and ultimately, God already knows everything about Joel's life and his death. I might make mistakes. But God is watching out, and I try daily to remember that.