Saturday, September 02, 2006

Meandering thoughts

Jack is doing "OK" ... mom is feeling "blah". We've been home for a week now - plenty of time to get settled back into the normal routine of life. Problem is, I'm having a heck of a time getting there. I find myself constantly lost in my thoughts, unable to focus and just not being very productive. My philosophy of life has generally been "$h#t happens - so just deal with it". Yet these days, I'm finding it much more difficult to "deal with it". Every morning I pass the same sign on my way to work that lets me know that the turn off to Interstate 8 and San Diego is only a few miles up the road from my exit. You have no idea how much I want to keep on driving until I hit the sandy beach! If only it was possible to truly escape from it all.

Before this last year, my "claim to fame" had been my ability to keep Jack out of the hospital and away from doctors. No small feat for a child with all of Jack's issues. It's not that I don't like doctors ... for the most part, I think doctors are terrific people. However, spending too much time around medical people forces the realization that Jack isn't a typical kid and I don't live a typical life. You may wonder how I could think otherwise given Jack's obvious medical interventions, but you would be surprised how easy it is to be blinded to what you don't want to see, especially when - on the surface - my days are much like everyone else's. I get up every morning, get myself ready for work, drag three kids out of bed, shove breakfast in them, make lunches for school, argue with them to brush their teeth and struggle to get them into the car so that we can pull out of the driveway before the clock strikes 7:11 am. The difference is, I am greeted every morning by a nurse (Mary Poppins, actually!) and I leave my house without one of my children, as he sleeps innocently unaware of the morning chaos, with little understanding of what the world is like outside of his protected universe. Okay, so maybe there are a few more differences (too many to list). However, from the outside looking in, we've managed to pull off the appearance of a fairly "normal" life. That is, until this last year...

This last year has been a monumental slap of reality that has knocked me out of my comfort zone in a big way. Starting with Jack's unplanned surgery last summer, followed by a year with a lot of respiratory illnesses requiring more doctors' visits than the last 4 years combined and culminating with a major surgery that caused Jack a great deal of pain, requiring too much time in the hospital and a recovery period from hell. Add to that, the fact that we were finally given a name for Jack's disease and he is now officially one of "Jerry's Kids". Yep, there's no denying it any longer ... I am the parent of a medically fragile child who has a neuromuscular disease that is stealing away his health more and more each year. Through this blog, I am also sharing - for the first time with many of you - a glimpse into our not-so-normal life. It's tough to live it, but even tougher to admit.

Anyway, enough about how I'm feeling ... after all, this blog is supposed to be about Jack! Jack is pretty much laying in bed bored out of his mind wondering what the heck hit him. I so desperately want to pick him up and hold him, but it's not a possibility right now. So we stand over his bed and talk to him, read him books and mostly change out the videos he watches all day long. We've not gotten him out of bed because that would require putting him in his body jacket, which is more like a torture device for all involved. The area on his back where "something" is sticking out (a lot) is freaking me out. I'm told it's his ribs, however, the typical anatomy doesn't have ribs sticking out alongside the spine. I considered emailing the orthopedic surgeon to get his thoughts, but I'm sure without actually seeing it, he won't venture a guess. I did email him and ask what the degree of correction was for Jack's curve. He had his nurse call me (query why he didn't just email me back with the answer) and she told me he was 90 degrees before surgery, 53 after -- a 37 degree correction. I have no idea if that is considered a good result or not. Doesn't really matter ... it is what it is.

It is definitely time for me to end this post ... if anyone is even still with me! I'll try and post new pictures soon, but I'm afraid they are all going to look the same ... Jack laying in bed. I could paint his room and rearrange the furniture every week to give you something new to look at!

I'm signing off ... time to try and get some sleep.


Anonymous said...


No words, just sending a big ((HUG)) your way.


Anonymous said...

Hug from me too.

Kathy Hawley said...

Just sending my love, because there are no words, to one of the best people, best moms, I know.
I hope you get some rest.
I'm thinking of Jack, my love and prayers for all of you.

Carrie said...

Ann ~ I'm here when/if you need me.
Lots of Hugs

michelle said...

Ann--I'm glad you have this blog. Thank you for sharing with us. Hugs to you and Jack--and Sara sends a hug to Eric too.


Cindy said...

Still with you Ann:-) One question, why be normal? (LOL, J/K) I would email a photo of whatever is sticking out of Jack's back to the surgeon and as him what he thinks.