The Eternal Question

I'm a bit overwhelmed with the detail of Q's medical stuff. Shocking, I know.

I think I may have hit a wall here. I have the initial vision therapy appointment set for Tuesday morning, for which I must obtain chart notes from the pediatric ophthalmologist by the time of the appointment. I must still get appointments set up for urology and genetics, both at a particular pediatric facility some distance away.

I don't want to. Yes, I am stomping my feet. I don't want to set up any more appointments, eat breakfast en route to _________ appointment, haul the kids to any more doctors' offices (counseling is enough on it's own), orchestrating food/gas/patience as the day drags on... I've had it.

I have a spiffy binder which holds Q's medical history and chart notes and essentially, my life, which is so helpful. Also, it is a huge, heavy, sharp-edged pain to haul around. I hate it.

I'm good at all of this, most especially keeping everyone on track, fed and happy during these trips. It's not that I can't do it, or that the kids are awful. They're not. They're great, and fun to boot most of the time (which is more than can be said for me lately). I just hate the whole process. I hate that I have to be good at this. I'd far prefer to apply my talents to something else besides correcting for my infant's brain malformation.

I haven't had much choice in my life over the last several months. I don't suppose many of us really do. Once a person subscribes to a particular code of ethics or set of beliefs, the choice part is largely done, as far as figuring out certain details. We usually get some say in where and how we live, what our investments of time and energy will be, how we respond in crisis. I guess that once I had G, that part was no longer up for discussion. Many of the things I've done/lived are not remotely what I thought I'd be doing/living, and it's almost entirely because I am somebody's mother. Several somebodies, but you get my point. I am richer and blessed and so much more than I ever thought I would be in soooo many ways because of my kiddoes. I am amazed every day at how much they change in me and require of me, in the best sense, of course. I am grateful to be their mom and that I am allowed to be along for the experiences which constitute their little lives.

But just now, even though I am so perpetually awed at all they are, as well as who I am because of them, I wish I'd never met their father. I wish I never had to see or speak to or deal with or think about him ever again. I do not wish him ill. I think he has enough of that waiting for him, karma being what it is. (I love physics, don't you? What a magnificent thing, to live in a universe so created...) I just wish I could skip the rest of the fresh versions of hell that seem to be a requirement for this sort of utter nonsense.

The bottom line for me has been, for years now, to always do the best one can in the moment with whatever one is facing right now. It is impossible to predict the future, except to say that by the end of one's life, it is likely that the meaning of the Chinese curse: May you live in interesting times, will have become painfully, personally clear. It is vitally important that one does one's best with those things over which one might actually have some control, because the rest of it, the things which are "interesting," the things which comprise our existence and which we take so for granted, are not in our power to control. Believing this does not mean that I have always done my best, far, far from it. It does mean that when I'm ill and feeling like falling on my face I push myself just a little farther because there's a good chance that things will get worse (the kids will be puking too) before things get better. It also means that I try to always say please and thank you and apologize and mean it, mean all of those niceties, and place genuine, abiding, verbalized value on another's efforts on my behalf, whatever the circumstances.

Which brings us back to the beginning of my tirade.

I will do the best I can for Q, of course. And for his sibs. No matter how the details get to me. It's just that I can't seem to get past the fact that the other half of this team is gone (heck, I'm beginning to think he may never have actually existed). That may not seem to have much to do with Q's issues at first glance, but look again. Most families who face significant health issues with a child hang together, in part because they are perpetually, starkly reminded of what really matters. Because of that, those families reap myriad benefits. The other children are often kinder, generally more patient because they have first hand experience with "the least of these"and the example of their family structure stretches the expectations of character for each family member. The parents know that they would give anything to make it better/normal for this child, and that their petty wants take a backseat to the larger goals, usually to the benefit of all, especially themselves. Self-sacrifice begets true, basic happiness.

I would give literally anything--a limb, a kidney, my life--to heal the soft, sweet, smiley boy who soaks my shoulders with baby drool every day. I would do anything anyone could ever think to ask of me to fix his little brain, and to keep all the kids safe and well, intact and loved and certain of their family. That is what I would do with my free will.

I am (still) floored that the person who is the other half of my beautiful baby boy's genetic make-up has chosen to use his free will to destroy everything his kids ever believed was good and safe and true. I do not understand how I can get no say in what happens to my baby's brain, but his father gets to choose to burn this family to the ground.

The kids are slowly decompressing, detoxing. The complaints and sleeplessness and tears should wrap up about the time they have to go back for another visit.

I cannot, no matter how I try, make any sense of it at all.