Skip to main content

A Gentle Light

This winter so far has not been gentle for the Lion Cub,  and here it is almost February, which means he has been slogging through turbulent conditions now for three months without any signs of clearing or peace. 
It's probably redundant of me at this point to say it's been hard. 



To recap what's been going on, or more precisely, what's not been going on...
What's not been going on is even a week without killer migraine (we are calling them that for lack of a better word) episodes. 
What's not been happening is any insight medically from his docs as to what these episodes are and why they are happening so frequently, or what we can do to treat or stop them.
And all the other stuff that has been happening, is also in the negative realm. I see a developing trend here...
The boy hasn't gone a full week at school since before Christmas break. I love being at home with him, but sometimes I need to go to work! Not to mention the strain of trying to prepare for a migraine episode that may or may not happen (usually it does) drains pretty much all the life force right out of me..and him.
Seizures have also come out to play, (actually they never went home) and ironically they almost seem trivial to all the other stuff! Never thought I would think that. They still suck when they happen (five times or more a day) but compared to the migraines, they just don't pack the same heat. That's pretty telling to the severity of these new episodes.
A couple weeks ago I started a slow wean of one of his meds that is more known for zombie effects, and as that med goes away, Leo seemed to be getting brighter, sharper, more animated and alive. That's been pretty awesome to see. His personality, when it isn't dulled by the drugs, is lively and cheeky and just like any other six year old.
Unfortunately as that drug left his system, the seizures decided to stick more than just a foot in the door. This weekend after a couple of bad seizure events I've had to start him up on a new med that I've been keeping on the back burner in the hopes that it won't be needed. Today at school pick-up his para told me that though he didn't have any seizures the whole day (Yay!) he was subdued and not taking as much part of the activities as the week before. (Boo.)
  I'm willing at this point to sacrifice total seizure control (which, if I'm being perfectly honest to myself, may never happen anyway) to be able to see his sunny smile and to keep him learning and developing, which when he's not stoned out of his mind by the meds, he is! Every school meeting I've had lately with his school team has been filled with new things he's learned and accomplished, even in the middle of this recent health storm. That's been a great and very welcome change from last year!
That being said, I'm not comfortable loosening our grip on the seizures to the point that they ramp up into the badlands of seizureville, otherwise known as status epilepticus. That's a realm I never want to visit ever again...



In the endless parade of grey days this winter, I think I have come to closest to real depression since I became Leo's mother. I've brushed the edges of depression before and definitely had my toes in the pool of anxiety numerous times over Leo's life so far, but at the same time I also felt like I had my fighting gloves on, that the battle was called, and that no matter how many punches I took, I would come back up,  despite all my whining and complaining. Funny enough, part of me liked this so called fight, because I was my kid's champion, his momma bear who knew best what to do, better than any doctor. If Leo was a little chap with a lion heart, than by golly I was a freaking lioness who would never ever let anyone believe that my son wasn't good enough to live.
I had a foe (or at least I perceived one) and I felt confidence in my belief of Leo's haleness and my own role as his healer and care-taker.
This past year has taken my confidence in this mother/protector role for a loop and I'm still dizzy and reeling from the series of punches and I confess to feeling like I won't ever get back on my feet. If only I knew who to punch back! If only I knew what was making my little guy hurt so much. (I still think it's the shunt, and I'm putting together quite a stack of compelling evidence to support it.. a dissertation on intermittent shunt failure anyone?)
When even the experts are stumped, what chance do I have to navigate the proper course? I suppose  two years ago I would see this as a call to arms, and rally to the fight (or to google). 
Rereading the past few paragraphs, I realize that it sounds pretty bad, desperate even, but that isn't really the whole of what I want to convey by this post.
I think if I write it out, how it really is, it may help me understand it and ultimately banish it or lacking that, perhaps make some kind of peace with it. However I may have lost confidence in myself, I have never, even for a second, even on the worst days, lost confidence in Leo.


I know, that even in pain, he always has a smile to spare for me. I know that even though I feel the failure of being able to smooth his way, he won't stop reaching out to me.
I know that regardless of his own heavy burden, he will always try to lighten the burdens of others. He always knows who needs an extra hug or a high five, or even a kiss or two (though kisses he usually reserves for babies and their mommies). 
I know that as much as he hates any medical procedure, he trusts me to keep him safe. That even though I myself give him the meds with mixed feelings and apprehension, he won't spit them out. I know that he thinks the best medicine is for me to kiss his hurt away.
I know that every day he goes to school, that he will walk to his schoolroom without a fuss and looking forward to all the fun activities, but that he will first stand by the window to watch me drive away. 
I know that in this endless parade of monochromatic days of stress and worry, he will always be the gentle light that softens and quietly whispers: have courage little heart, breathe and look to the small things of strength that can, some day, be the foundation of very big things. Have courage little heart, and in all things, and regardless of the dark, keep a gentle light.



Comments

Popular posts from this blog

Lost In Summer

It has been a long time...maybe the longest since I have written to you all last. This blog has meant many different things to me over the past seven years, in fact, it has taken as many different manifestations as its subject matter, Leo the little lion! Not so little anymore, in a couple weeks he will be seven years old.  And so will this blog!  It is amazing to think back to the frightening beginning of it all, and to realize that never in a hundred years could I have pictured myself now, sitting and typing this post at my sunny kitchen table, in my own house, while the early morning sounds trickle in from the open porch door and mingle with the voices of my children in the other room. Not one child, as we all thought seven years ago, but two.  Seven years ago, Leo was not going to live to his first birthday. He was not going to be able to talk sweetly to his big sister, as I hear him doing right now. Though I'm sitting in the other room, I can picture them both clearly; his s…

For The NICU

So you guys know that September is the NICU (Neonatal Intensive Care Unit) awareness month right?  Yeah, I didn't know either.  Every month there is some disease or disorder that we should worry, promote, and be aware about...so after awhile all that awareness stuff gets tiring... But this is the first time I've heard of an awareness month for a place, rather than a physical condition. What's up with that? How come we need an awareness month for a section of the hospital? We have an awareness month for breast cancer, not the cancer ward itself...so why the NICU? I'm pretty sure there is a preemie dedicated month, and one for every other condition that may have put the infant in the NICU in the first place, so why the preferential treatment? After thinking about it for awhile, the only reason I could come up with for the need of this awareness of a place, is that the place itself has inherent issues that people (especially potential NICU parents) should be aware of. No…