Looking at things differently

Kael fell asleep doing one of his favorite things...praying.

Wow - I cannot believe how long it has been since I've updated this blog. Guess that's what happens when you have a new baby and a new dog...life is such a whirlwind. Some new things are happening with Kael. He's learning his colors. He can say "red, green (deen), blue (boo) and yellow (dedow)." Whether he really gets what those words mean are another thing. He is very good at repeating what we say if it gets him what he wants. It's so cute when we're playing in the ball pit and he starts throwing out every color he knows, in the hopes that he says the right one and we give him the ball. He's definitely talking more, in general, and his focus is better. He's doing a great job at cleaning up and taking his medicine.

And...drum roll please...he pooped on the potty yesterday!!! Of course I had to run him over to the toilet and in the process, smeared poop all over my shirt...but he got 99% of it in the right place. Most parents want their kids potty trained at a reasonable age, but we feel a particular urgency because the regression that could happen is always looming over our heads. We've heard from other "Dravet parents" that they don't usually lose the potty training once they get it...but if you miss that window of opportunity, you may be looking at diapers forever. We're hoping to avoid that, if possible...his poops kill us now...can't imagine what it will be like in a few years!

The biggest change that has happened is that Kael is having all of his seizures in his sleep now. Seems to be something that happens for a lot of kids with his syndrome...at least for a time...we just didn't expect it to happen so soon. There are definite pros and cons to this. Big pro - no falling accidents. We're still watchful because you never know when things will change - but it is definitely nice that he is already lying down in a safe place when he has his seizures. Other pro - we are always the ones with him during the seizure...one of us is always lying with him (usually Michael, now that I'm dealing with Thane) and when we're not in bed with him, we are watching him on a monitor. Cons - his sleep seems to be less restful. I think he is having many more seizures in his sleep than we are aware of. Another little girl we know with Dravet recently had an EEG done and they found she was basically seizing non-stop during sleep. I think that might be happening with Kael...he is always so out of it and shaky after sleep. Another con...that he will seize in those few moments we take our eyes away from the monitor. About two weeks ago, I got him to sleep, and went to turn on the monitor in the other room. By the time I got the monitor on, he was already seizing. What had happened if I had gotten distracted by something? Would he have stopped breathing? These are the things that this new change makes you think about. But, all in all, we are thankful for the break from seizures anywhere and everywhere.

We always track Kael's seizures...date, time, place, meds, special circumstances. But we've always broken it down by how many he has a week...2 to 3 times, 4 times, every day, etc. This week, Michael looked at how many he is having in a month...and the number shocked us. He is having about 30 generalized seizures a month! This does not include all of the little seizures...the myoclonics, the absences...just the big "gran mal" seizures....the ones where he looks like he's dying...those are the seizures he is having in abundance.

I feel like I have accepted the ups and downs of this disease and that I function pretty well, but this threw me for a loop. It brought back all of those questions..."Why Kael?" "Why this disease?" "Why his brain?" "How am I going to watch him disappear?"

I was sitting in church the other day...looking up at this beautiful, HUGE crucifix above the altar...and thinking all of these things. And, of course, I started to weep. But then, as always happens, when those questions come, the new perspective starts to inch its way in. I remember that this life is not all there is...that we are eternal creatures...that Kael was created for an ETERNAL purpose. His dignity does not come from what he does, or even from who he is (in the sense of knowing his mind), but from the fact that he is created in the "image and likeness of God." How can it be that a child with so messed up a brain can be made in the image and likeness of God? If how we think and feel defines us...how can that be? What makes us like God...is the fact that we are eternal...that we have a soul. What a gift...that my little guy...who may end up in a wheelchair, totally unable to communicate, is a little picture of God. How humbling. Maybe that's one of the million reasons that God allows these things to happen to our children...to His children. Sure helps me look at my life a little differently.