Well, this year Christmas and Easter finally met at my house. Yup, you got it. I STILL have some Christmas decorations up. Keep meaning to take them down, but never seem to get the right time to dig the boxes back out of the basement and deal with it.
But, maybe that is not such a bad thing. I mean, really they are part of the same story. I think it is sort of strange how Christmas is the celebration that really got tied to all the peace on earth and good will to men, and Easter sort of gets, well, second skimmings sometimes.
I mean, of course NOW it makes sense, as our civilization slowly strips off the religious meanings to the holidays. Christmas always was the big one, so it can just be called Winter Holiday or whatever and all the lovely hype and smushy feelings are already affixed to it.
But how did it EVOLVE that way. I mean, I totally get it that babies are cute and adorable. And dusty itinerant preachers with claims to be God who end up in a horrible and ignominious death... well, that DOES seem a bit emotionally confusing as a celebration. And a celebration is more fun to, well, celebrate.
Still, that is just a surface glance. And all the generations of people who slowly built up these two celebrations... were they not aware of the pertinent facts? I mean, yeah, there is a death at Easter, and yeah, a birth is definitely more likely to occasion a party, but whoa --- WHAT ABOUT THE RESURRECTION??
I mean, Jesus totally beat out death. Not just death, but EVIL. I'm talking about our death and the evil that lurks inside us. Come on, that is the two WORST things in our existence. The fact that we can not get rid of the evil part of our nature, the one that twists us up. The part of us that not only does wrong, but wants to do what is wrong. The part of us that can not co-exist with a supreme being who is all knowing, just, and completely good. Jesus made the way for us to be able to reunite with God on a permanent basis.
Now I hope I haven't lost any of my readers. The few good friends who do actually read this, sometimes likely more as a favour to me, than out of any real enjoyment. I mean, I realize that it is all about Easter and Jesus and stuff, and I haven't mentioned Joel or what is happening in my life at all.
So let me tell you. The last two weeks things have not been going as well with Joel, as you could tell from my blogs about emergency rooms and DNR's. And yes, today I did make a point to let the doctor know about our choice about restarting Joel's heart. And no, I don't think Joel is going to die in the next few days or even maybe months, though in all honesty, I don't expect he is going to live more than a year or two more. It would surprise me to celebrate a third birthday.
It is not the whole apnea, tonsil, adenoids thing that really is the worry. That has only a surface connection to his actual condition.
It is the fact that we keep upping the seizure meds and then we still have to up them some more. That, coupled with the fact that he just doesn't really seem to be making any gains. That he can not hold his head and does not play with toys. That sort of thing. He is still ok, he is still a happy little boy who coos and laughs. He turns toward me for snuggles and away for playing.
But deep inside of me, I hear that clock ticking, ticking, ticking. And the seizures do frighten me. Yup. One of the well-meaning half truths I was told waaaaaay back when his brain and his EEG and all that came up was this: Joel was at risk for seizures, but don't worry, lots of kids have seizures and it's not that bad, it can be controlled with medication.
A half truth. SOME kids have the sort of seizures that can be controlled with medication, because their brains are stable. No new damage is happening up there, and things sort of equal out with meds with very little or very gradual changes over the years.
But as I found out later, some kids have the sort of seizures that indicate that things are NOT stable in their brains. Things are getting worse, and as they worsen, so do the seizures. And sometimes it is a constant race to keep the seizure control one step ahead of the brain damage. If the damage is happening slowly, it works. If the damage is happening quickly, it soon is a bit of a losing battle.
That is why the fact that though Joel's seizures started off very sporadic, and brief, they still keep happening despite med increases, well, that does scare me. Right now we are still well ahead in this race. But the curve I am sensing frightens me. Every month or two they seem to worsen. The one scenario that I would like Joel to be spared, is the one where he ends up being one of the children who slowly seize more and more and more and more. For months, or even more than a year....
I know some children like this, and why Joel should be spared, when they and their parents have to go through this, well.... I wish I had a compelling reason for God, but I don't. I'm just sitting here hoping that it won't come to that for us.
So, I wrote about the Resurrection today. Yes. Because Easter is my favorite holiday. It is the best news I have ever had, and right now I just felt like some good news. I wanted to celebrate the fact that though I have no confidence about what sort of terrible things this disease might do to Joel and to our family before he dies, I have every confidence that in the end, the disease will not win. Christ is risen, indeed!!! (that's for you, Jen!)
SOOOOOO - Happy birth, death and resurrection of Jesus to you! Come over for some pretty lights, chocolate bunny, egg nog, evergreens, lilies, a wrapped gift and two kinds of carols!!!
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