Monday, January 24, 2011

How do I know?


I've mentioned many times that I know our boys aren't ordinary spirits.
Lots of little glimpses here and there show me this.
Like when I think I just can't stand the freaking out a second longer and am considering locking myself in the bedroom with some chocolate for an hour... one of them will come over to me with a church/Christian dvd to watch, or say something so incredibly cute I can't help but stop dead in my tracks and scoop them up for a hug.
Aidan, in particular, has been trying to comfort me... instead of seeking comfort for himself.  If I start to show I'm worried, he will get this look on his face I can't even describe, will gently put his hand on my arm and nearly whisper, "I love you," or "I'm okay."
Every blessing he's received has included something about his being strong.  To look at Aidan that would seem ludicrous.  But obviously strength is not necessarily only of body, but of spirit too.  I had no idea my picking the name with a meaning of "fiery spirit" and "warmth of the home" would be so close to the truth.  
I am so grateful for having the option to homeschool Aidan.
It not only gives me the chance to spend more time with him, and experience the feeling of excitement when he understands and learns concepts that enrich his life, but it also gives me a view of him I wouldn't otherwise have.  This helps me see Aidan in a new way, and it also helps me see what is happening to him, with a clearer view.  Absence seizures are really hard to see.  You can go all day without noticing a single seizure, and just think your child is tired and out of it.  But when you have to actually do schoolwork one on one, it's pretty clear when a seizure is occurring. You can actually see the blank look, no response to attention getters, and the reboot.
Myoclonic are a little easier to see when they are bigger and in clusters.  Small ones are easy to miss or think is just a body jerk.  Aidan usually experiences the bigger ones at night when I don't have the chance to see.  When I see big ones during the day, I know it's getting really bad again.
I will go to his neurology appointment much better prepared to be his advocate, and I'm grateful for this.
Funny, I remember distinctly, being accused of being crazy for considering public school wasn't the place for him. :)
Jace is going through a regression right now too.  Of course this makes me nervous because of past history with Aidan.  We've now got four major red flags with Jace.  1st, one I've already mentioned, his sleep is seriously interrupted again.  I've always had things in his room to encourage sleep, and have re-evaluated all of it and made a few tweaks in hopes to help.  But it's only helping reduce his reaction to waking.  2nd, another already mentioned, his increase in episodes that look darn too much like seizures.  3rd, he is regressing in ability to understand what is being asked of him.  This is called receptive language, and his therapists have also noticed he's no longer understanding requests that he used to.  4th, goes along with all of the above, a huge increase in meltdowns and other behavioral problems.
This regression seems to be headed in the exact same path as Aidan's when he was 3.
We've got a lot of extreme behavior going on in our house right now!
On the bright side, Damon is slowly but surely eating more regular food.  I'm not able to skip any bottle feedings yet, but he's eating ground beef and shredded pork, cheese, crackers, avocado, all sorts of stuff.  Finally!  He's just over 15mos old, and this has required intense daily feeding therapy.  Sounds crazy, but it's true.  Yay for Damon!

Now to change the subject entirely:

When I was young it was cool to fight.
For years now I've known how useless this practice is.  And I've worked on it.
But so many times someone will say something demeaning I allow myself to get sucked into their little fight by defending myself.  I sometimes even jab right back, because of course, people who pick fights in the first place have plenty of material to dish the criticism right back at.
Quickly, I wish I'd just kept my mouth shut and walked away/ignored.  Not because of saying anything particularly bad, or 'losing' the little battle, but because I actually don't like making a point at another's expense regardless of whether or not they started it.  It's weird.  I learned as a child to dish it right back to deflect all the typical meanness.  It was survival.  But it's actually the last thing I want to do now.  It's really hard changing something so ingrained.  But I refuse to be a person that hasn't done anything to improve their character.  What a waste of being here and going through all this, if I don't.
I've had the blessing of coming in contact with someone from my childhood again.  I have a lot of respect for this man because in spite of all the torment others have put him through over the years, he is still a trusting soul.  He also works everyday, on bettering himself.  Had me thinking a lot about my own behavior this past week.  I'm grateful for people like him in my life, that remind me of what's really important, and that are good examples to me.  I wonder if he knows, I've paid attention. :)

1 comment:

Anonymous said...

Lots of love and prayers from NV. (=
Elle