I have been feeling low for the past few days. I feel like my legs are heavy, my body malformed, my spirit tired. I feel like I have been sleeping "enough" and wake up still feeling drained.It's yucky.
I feel like the sun is shining, and I am not happy.
I feel cloudy inside.
I feel like crying. But I don't.
I don't feel like smiling. But I do.
I want to run, but when I do, I feel sluggish.
I feel like muddy, strong hands are pulling on my trainers, trying to hold me back.
And yet I pray for more wisdom, and help in understanding, and don't yet feel peace.
I feel surrounded by suffering... Broken marriages, sick, even dying children, joblessness, money-lesness, the IRS...and neuro-treatments.
I expected Parker's new medicine routine to be difficult in my mind-but in my soul, I expected it to go smoothly.
At some point along this road I decided that worrying was not a useful emotion. I decided it was wasteful.
Wasted time & energy: two things that are precious to my livelihood, and that of my family's.
So I try & place burden at the Lord's feet. And walk away. Ever mindful it is there, and grateful that He takes it from my shoulders, eventually lightening my spirit.
Sometimes it is easy to do. Sometimes I think I do it (lay those troubles aside), and yet I still feel pain and sorrow and hurt.
I ache.
I ache for everyone's sorrow around me.
Sometimes I am all encompassed by it.
And I think I cannot go on.
And then I do.
I get up, make breakfast, get 6 people ready for the day, and continue onward.
I try to shine.
But I don't feel bright.
We all know there is a direct correlation between how I'm feeling and how Parker is doing.
"C'est normal."
They would say in french. It's normal.
I try not to let it effect me, but of course it does. It infiltrates my soul. But my soul interfaces, nurtures, and teaches a lot of little souls around me every day....so I continue to try-and shine through the darkness and despair.
And Parker's not doing so hot.
He is having a lot of absences. This would look like blank stares to outsiders. But it is happening multiple times per day. We were trying to wean him of his meds, since his last multiple EEGs have shown "normal", but he's put on 2 kilos in the past 6 months, and it recently became apparent that with that weight gain & us not adjusting his meds, obvious that he still needs them.
His neurologist (whom I adore and call Dr Q), consulted 2 different neurologists more specialized in pediatric epileptic seizures and treatments for advice last week.
We (they) have decided to put him on a longer lasting anti-epileptic med to see if he could achieve more continuous and consistent coverage. He has previously been taking a liquid dosage 3 times/day, and each time after he took this medicine, he needed to sleep. With this obvious side-effect, we wondered if he also had moments where the medicine was giving him little to no coverage as well.
So he started these new meds this week. I expected there to be an adjustment period.
But when they gave me pills for him (twice a day), I decided to do my own experiment--put a whole one, a halved one, and a crushed one in three separate bowls of water. And left them for 12 hours...To see how they changed over time. He is to take these twice per day, they are to last 12 hours in him, but he is supposed to swallow them whole, or halved.
Parker is three years old. I am not sure any of my other kids could understand at 3 not to chew a pill before swallowing, not to mention DO IT, but clearly Parker does not get what I am asking him to do.
I try & halve the pill, and fill his mouth with applesauce, yogurt or ice cream and see if he will accidentally swallow it without too much questioning, but each time I see him swallow, it is followed by tongue movements and a little orange pill rolling around his pearly whites. SO I start over. Until I see no more pill, and hope and assume it has gone it's way to where it should go.
We counted 5 times yesterday that he had seizures. It is not seizures that you would hear about or expect. It is just that he has a quick disconnect in his brain where he stops what he is doing, stares into space for a few seconds (never longer than 10) before he comes back again. My instinct is to touch him, call to him, wake him up. If we do this, he snaps out of it quicker.
So he started this new medical routine Sunday night. The good news is that he is actually sleeping all night long. This has to be a good thing. For his developing brain to get continuous sleep, but also for me, and the rest of the family, too. I haven't had continuous sleep since I was pregnant with the twins. I guess that's about 4 years now--and that's a long time.
But I've asked his teachers to watch him & let me know when/if he does these stare seizures at school, and am trying to keep track of them to see if they are related to fatigue, dehydration, hunger, or change in schedule.
At the deaf school on Tuesday, I was asked to stay all morning with the deaf educator and learned so much (it was amazing and adorable what these kids do), but Parker was obviously tired and yawning all morning. I left before lunch, and when he returned home about 5 pm I received a note from the school nurse stating that during lunch, his head just plopped down into his plate and he was "KO" as the french say (Knocked Out)... But he was arouseable, so it was not a real loss in consciousness. The nurse stayed by his side during lunch. He ate a lot, then took a 3 hour nap before they woke him for his next class.
This is disconcerting.
But not terrifying,
I convince myself.
Let's keep an eye on him.
Today at the bilingual school it is dress up day (I have no idea what for--"carnivale" they tell me, I say "ok"--1/2 way through Lent? and dress up my twins). Penelope is dressed as a Pink Princess (following traditional Hall custom) and Parker dressed as Dash, the Incredibles Boy(who runs fast!).
In French the Incredibles are called "Les Indestructibles"--and Parker's teacher saw him and laughed saying, "Le garçon indestructible!"
As I walked away smiling to myself, I said, "Let's hope so. I hope he is indestructible."
He is Little Mr. Incredible to me. Incredible.
And I love him so very much it hurts.
