Monday, November 23, 2009

Even in this...

Billy and I escaped for a couple of days for our anniversary. It was pretty funny. At check in, the clerk asked what we were gonna do. We just looked at each other and said, "Sleep!" We are getting so old!!!

It was so lovely to just sit quietly. That just never happens at home. Someone asked me if I would be able to detach from all home. Interesting question. I really didn't know how to answer that. On the one hand, it was really nice to just escape for a while and not have to constantly deal with all of it. On the other hand, it's always there in the back of your mind, wondering if Will is taking his meds, or is he taking the opportunity to eat what he wants regardless of the consequences. The fact that Will has mitochondrial disease never leaves your conscious thought because everything impacts it. Is he getting to bed on time? Is he pushing his siblings around because he's just mad and doesn't want to make the right choices? Is he saying he took his meds when he really isn't? It's like you are forever vigilant to protect him from external circumstances as well as from himself, helping him come to grips with the fact that this isn't going to go away and the choices he makes right now affect him in an hour or in a day...and he does not want to accept that.

So, upon arrival home, it was discovered that indeed, he isn't feeling all that great. He did not take his meds despite telling his brother he did. He ate what he knew he shouldn't because he wanted what he shouldn't have (don't we all????). And he is paying for his choices. Unfortunately, we all get to pay for his choices.

It doesn't help that he really doesn't want this port installed and that is looming. Next Friday (Dec 4) is the set date. It's the right answer. It took three sticks on Friday to get a vein for his IV. This will eliminate the majority of the discomfort as well as protect the remaining available IV sites. But it also means the third surgery this year. Three times under general in one calendar year...

Even in this, we are thankful that William is still able to be challenging, because that means that he's still quite functional. :) We can also be grateful that the kids were willing to manage the household without us for a few days while we spent some time remembering why in the world we got married in the first place. :) We can also be thankful that we have a sovereign Lord who loves us and wants what is best for us even when we fail to understand how our current situation could possibly fit into that category.

Saturday, November 14, 2009

It does not work for me to take an absence from this blog because then I think, "um, if I throw all of this out there in one post then it will sound like our life is out of control!" and then I realize that our life IS out of control. :) I forget that this really isn't "normal", whatever that means.

So, here's the quick version. Will's MRI was unremarkable (medical speak for the spine looks fine but he is still in pain) so they prescribed a lumbar (lower back) corset and physical therapy. Physical therapy starts Monday and the lumbar corset should arrive in the next few days. Cam's OCD is rearing its ugly head so we're heading back to visit his doc in DC this week to determine what we need to do next. Wednesday, we meet with the surgeon to discuss the port for William. We won't mention my lack of coordination that resulted in a less than spectacular dive into a pool that left my back in knots. :) Really, there does come a time when you realize that there are some things that you ought not do...especially if you have not done them in years. :)

So now you are caught up.

On a lighter side, Billy's mom visited for two weeks and we thoroughly enjoyed her visit, even as we got to know the local laundromats. Yes, during her visit, our washer died and we had to wait for the part to arrive and then a repairman to arrive. Three weeks with no washer is really just totally aggravating. :) Mom ended up taking the laundry and managing that for me while I managed Will's infusion and life at home...sometimes I think back and wonder what I actually did do, but if I didn't do anything why am I so tired? From my lack of blog posts it's totally obvious I wasn't near my computer, but for the life of me I have no idea what took up the entire two weeks while she was here.

Ah! I did get a passport ordered while she was here and it came today! I know it's weird, but I've always wanted a passport. It is like the promise of what you could do, even if you don't ever get to do it. You could pick up and run off to Europe for the weekend even though that really is so not going to happen, but it COULD if you just had a passport, right? I realize that maybe I sound a little delusional, but I love to travel and a passport is like a thread of hope that maybe someday it will happen. :)

Caroline invited herself to spend the night at Erlene and Randy's tonight, the two youngest boys are in bed, Chris is on the computer, and Andrew and Will (who finally lost his connection to Myrtle two hours ago) are watching a movie. And I haven't taken the back drugs for the evening so I'm still a little lucid. Maybe I can actually read my book while I am still awake???