Sunday, July 17, 2011

In Which Connor Is Not Doing So Well And I Come To Terms With Some Things

So my posts in the past few weeks may not have been the most interesting things in the universe.  Some of them have probably bordered on boring.  That's because we haven't had a whole lot going on around here.  But you know what?  I kind of like boring.  Especially when the alternative is the kind of day we had today.

The short of it is that Connor had eight seizures, we used pretty much every form of emergency medication available to us at home, and then he spent the rest of the day sedated and sleeping.  He's been asleep now for about nine hours-- since around two in the afternoon.

He's not running a fever.  He doesn't seem to be sick.  He hasn't gained a ton of weight or been under a whole lot of stress.  Yesterday he was fine.  Today he spent in an exhausted, seizure induced half-coma.

So we have absolutely no idea what tomorrow is going to look like.  Either Connor will make a mysterious and miraculous recovery and we'll have no idea what the heck that was all about, or we'll go to the hospital.  It's going to be one of the two, and while I'd really like to think it's going to be the former I get the feeling that I should probably go ahead and pack an overnight bag.

It's been a good run-- we've gone about four months without being admitted, which is a relatively long amount of time for us.  It's pretty frustrating, though, to continually get blindsided by this sort of thing.  I mean, one day the kid is fine, and the next-- BAM!-- he's not.  Sometimes I can almost manage to forget that we have a child who could literally die on us at any moment.  Then we have a day like this and reality comes crashing back in.         

When we first got the news that Connor was going to have some serious medical issues, when I was halfway through my pregnancy, I remember reviewing everything I'd eaten over the past four months.  I'd picked some blackberries on the side of the road one day; had they been covered in pesticide?  Did I not drink enough water?  Did I exercise too much?  I was looking for someone to blame for the fact that I was most likely going to lose my child, and the easiest person to blame was myself.  I absolutely did not cause Connor's disabilities, but it took the results of a genetic test several months after his birth to completely absolve me of the last of that guilt.

I find myself having to be really careful not to do a similar thing with Connor's seizures when they come on so suddenly like this.  Did I leave him in one position too long?  Feed him too quickly?  Logically I know that there's no way I could have caused him to have them, but it's difficult to get rid of that magical thinking because of the other side of the coin: if I caused him to have seizures by leaving him in one position/not paying him enough attention/singing the alphabet song backwards/insert completely ludicrous activity here than I can magically solve the problem simply by doing or not doing whatever one of those things is needed to make the seizures stop.  We all want a magic wand that we can use to fix our children when things like this happen.  I think mine is out of batteries right now; I keep waving it and nothing changes: Cinderella stays a chambermaid, the pumpkin stays a pumpkin.  My son's seizures don't magically disappear, and we're running out of medication options that don't involve dangerous side effects. 

I suppose that's the nature of life.  Life is a heartbreaking, wonderful, sad, terribly beautiful thing, and we don't get to wrap everything up in a nice fairytale happy ending, no matter what the Lifetime Movie channel might tell us.  We don't choose the paths our children walk any more than we choose our own.  No matter how much I'd like it to be true, I can't change the fact that Connor has a difficult and bumpy road to travel.  I can do my best to smooth his way, and make his journey as happy and fulfilling as possible.  But I don't get to control where his journey ends, or how it ends.  That's not my decision to make.  That's a hard truth to come to terms with, but it's an important one.  I can't control how much time I have with him, or for that matter, anyone else, but I can choose how I use that time.  And weighing myself down with guilt instead of focusing on what things I can do for my son is not the way I want to spend it.

So I'll go in to Connor's room tonight, and kiss his small cheek, and stand over his bed for awhile, watching him breathe.  I'll pray that I'll get the chance to stand over his bed many more nights, doing the same thing.  I don't know how much time I have with him, but then I don't know how much time any of us has.  I just know I want to spend every moment I can filling him to the brim with love.  And with every smile, he reminds me why I started this whole crazy journey of parenthood in the first place. 

I love you, little guy.  Every step of the way.



Julia O'C said...

Oh, Jess. I'm in tears. Eight seizures. That's a lot.

All day yesterday I wanted to call you (for no reason, just to chat) but stopped myself because it's the weekend. I guess it's good that I didn't call. It sounds like you had hands full. But you were very much on my mind on Sunday.

We're thinking of you guys, and hoping and praying for Connor.

Wherever HE Leads We'll Go said...

OK, thanks for making me cry first thing in the morning! So sorry you had such a crazy day. Praying today is the less crazy kind (boring sounds pretty darn good).

I have been dealing with some Mommy Guilt lately and I needed this reminder that spending my days filled with guilt doesn't do anyone any good. I need to enjoy my little girl and the life we have even if there are some major bumps along the way that I would rather avoid.

krlr said...

Jeez. I was mildly embarrassed at my last overly-emotional cheesy comment but here I am again. My mommy guilt is inescapable - MY body choking off umbilical cords, MY egg's chromosomal counting issues... I KNOW it's not constructive but it's always there, like a monster under the bed. Every now & then he get out & stomps around, crushing things. I aim for a happy & fulfilling life too, for myself & for my kids, but rarely express as well. Thank you.

Kristin said...

I've often described my 3 typical kids as "wonderfully, boringly normal". I don't think anyone can appreciate normal until they live abnormal.

When I got L's genetic testing back that showed 22Q duplication, my first response to her neurologist was "That means it's not my fault".

I could blame myself for a lot of things but I've never been able to blame myself for a little more genetic material getting stuck when our chormosomes were doing their delicate little dance.

I'm thinking about you, praying, and hoping for you.

Jill S. said...

My sentiments exactly. I feel like I could've written most of this post about my Matthew. The mommy guilt is inescapable. Am I doing enough, am I doing too much; what am I missing? All these questions blaming myself.

Beautifully written! I too, hope you get many many more goodnight kisses!

Julia said...

Don't know what to say, Jess, except that I dearly hope you have many many more opportunities to kiss his cheek, watch him breathe, listen to him bang on his keyboard, wave the laundry around for his entertainment, etc. Technically, any one of us could lose a child at any moment, and on the rare occasions when I let myself contemplate this, I am quickly overwhelmed and I put that mental image back in the lockbox. I can't imagine having to face this with any regularity or immediacy, or having to make peace with it. I know you hate it when people admire your strength and courage, as if you're doing something out of the ordinary, but I'll just have to piss you off by admiring you once again. I hope you have a *very* boring day, and that Connor bounces back quickly.

Herding Grasshoppers said...

Oh Jess, that is one of the best things I've read. Ever.

Praying for you and Connor today,


Ashley's Mom said...

Jess, my daughter is 16 years old, and I have spent many hours on the roller coaster you describe. I wish I could tell you that it gets easier, but it really doesn't. But, you do get used to it, and like you describe, you learn to treasure every single second of every single day in a deep, primordial way it hard to describe.

My daughter's seizures were really bad when she was young and I almost lost her many times. Then we found some meds that kept the seizures down to 2-3 a day for several years. Then puberty hit and they were back with a vengence. Now she is 16 and they have let up again - significantly this time. We are now down to 2-3 a week.

It's exhausting and you will probably get grey hair way too early like I did, but you will also love more deeply than might have been possible, and be more grateful for even the smallest of things.

Our kids touch our lives in unique and sometimes difficult ways, and while we take care of them, they truly are making us live life to the max.


KLB said...

Sending positive thoughts out for you, Jer and Connor. Your strength and thoughtful writing are powerful reminders that you/we are blessed the strength to handle what we are given (even though it really sucks some days!)

xraevision said...

I probably spend too much time playing mind games with myself about X's issues. My thought patterns are similar to yours. If it's possible that one little thing led to this result, perhaps if I do the opposite or something different, the outcome will be that, etc. It's a roller coaster that continually loops and doesn't stop to let me off or even catch my breath. Never mind dealing with with the outside world.

I am pretty isolated here with X's issues, not having met many parents in my city who are experiencing the same kind of thing. Your blog is a constant source of strength and especially hope for me. This particular post is exactly what I needed to read today. Thanks, as always, for sharing.

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