Based on Nik’s behavior at some of those times, I can only imagine the fireworks that must have been going off inside his head. Much of the time was spent with attempts to sooth and comfort Nik out of his face-punching, head banging, back-arching behaviors.
Behaviors. I am so reluctant to use that word to describe what I know, as sure as I breathe, is a visceral response to pain. Behaviors —with a capital B, as denoted by numerous professionals who are unable to see the forest of my child through the trees of his manifestations —don’t wake a child from a sound sleep with a violent, panicked and self-injurious start. Behaviors don’t respond to Advil or to homeopathic remedies for nerve irritation.
No one can really say what’s going on with Nik at this point. Even his beloved Doctor Mary is scratching her head in bewilderment. Though she is willing to explore any avenue we think might be helpful, her clinical knowledge base is, by her own admission, too broad to be able to hone in on which of the myriad tests to order. Given the difficulty Nik seems to have putting on weight —he’s not gained but a half pound in six months —and some other symptoms including manifestation of Raynaud’s-like characteristics, we need to rule out any endocrine or metabolic causes (likely autoimmune causes already being ruled out by testing). Our next step is to find an endocrinologist for a consult.
Our fabulous neurologist is also willing to explore any number of possibilities. He’s mentioned some things which seem to fit and make some sense but which also require the use of systemic medications which affect the central nervous system. Granted, the medications in question aren’t necessarily as potent as the seizure medications Nik was taking but they are not without risk. It’s immaterial; history has shown us that Nik does not respond well to any type of medicine which alters the functioning of his central nervous system. Niksdad and I loathe going down that road blindly; we want to explore the metabolic and endocrine possibilities first —as well as any other non-pharmaceutical —or more chemically benign— options.
It’s not we are against medications; truly, we’re not. We just know that Nik’s body doesn’t handle them well; we want to avoid any scenarios in which we are left wondering —yet again—whether the symptoms are part of the underlying issue or are side effects from the treatment. And, frankly, Nik’s had more medicines pumped through his body in the past five years than most people take in a lifetime. The strain on all his bodily systems has been enormous.
In the meantime, though, it is a daily watch under Damocles’ Sword. The watching and wondering if today will be the day that Nik’s pain will not respond or if it will last longer than a few minutes at a time. Will he be able to focus on a task or play for more than a few minutes before he is scrunching his eyes and vigorously poking at them? Will it be during the day or in the middle of the night that the searing pain causes him to thrash and howl as he bangs his head with his fists or with a toy? Will today be the day he stumbles blindly to fall, yet again, head first into the hard edge of a piece of furniture.
Or, will today be a day free of the mysterious sensations which cause him to claw at his head to the point of rawness? Will he play with carefree abandon at the park, climbing like a little mountain goat? Will he sing the sounds of letters to me as we play together on the floor, building towers toward the sky? Will he feel well enough to eat me out of house and home?
I know that no one’s days are ever fully predictable; they are, however, by and large, filled with routine which bring comfort or respite. Time in which one is able to take a moment to breathe easily and know their child is safe. Our days used to have a moderately predictable rhythm to them. Now, the only thing I can predict is that I can no longer predict.
Nik is showing signs of a tremendous developmental surge; he’s learning more letters by sound and beginning to identify them on sight. He’s showing marked interest and facility in eating by mouth. His motor skills are meshing nicely with increased depth perception to allow him to play in ways he hasn’t been able to. He’s showing some slight comprehension of numbers —enough to be able to successfully show me certain ones on request about half the time. His desire to play with me or with Niksdad has increased to the point that it might border on obsessive; we have to plot our escape from the room sometimes before he can latch on to one of us.
While Christmas presents don’t hold any real significance for Nik, he’s shown a great interest in unwrapping the gifts and understands that the item inside the paper is as fascinating as the paper can be. He shows eagerness to explore all of his new toys, though his dump truck is the hands-down favorite. Nik has even been willing to allow me to push and cajole him into persisting with a game or task until it is completed. Not always willingly, but to completion. Then we celebrate his success and he is happy and willing once more.
We continue to make progress in substituting his green chewy tube for toys in his mouth when he is working or playing. He will now actively seek out “chewy” when I ask him to and will use it for several minutes before he reverts to biting on a toy. Small steps, big gains.
I confess there is a part of me that is very worried about the effect of systemic drugs on Nik’s abilities. His motor abilities will always be in question due to his underlying cerebral palsy; is Nik unstable on his feet some days more than others because that is the nature of his CP or is it from something else? His cognitive abilities have blossomed since we took him off of the seizure medications and have been a source of great delight —to him as well as to us; Nik recognizes the progress he’s made and tries to build upon it. I see the improvement in his ability to retain and retrieve certain kinds of information without as much scaffolding or as many prompts as he once needed. I worry that the medication would take that away from him and create frustration in place of his sense of self confidence.
So, yes, it is a new year filled with new hopes and dreams; but, as those ghosts of the season do, they carry along with them the baggage —the sticky ectoplasm— of all that has come before. I cannot seem to find the promise of the new under the burden of the old. And yet, I know it exists; I know it will make itself manifest in due time. That is simply the way of the universe, isn’t it?
That’s The Way of The World
(Maurice White/ Charles Stepney/ Verdine White)
Hearts of fire creates love desire
Take you high and higher to the world you belong
Hearts of fire creates love desire
High and higher to your place on the throne
We’ve come together on this special day
To sing our message loud and clear
Looking back we’ve touched on sorrowful days
Future pass, they disappear
You will find peace of mind
If you look way down in your heart and soul
Don’t hesitate ’cause the world seems cold
Stay young at heart cause you’re never (never, never) old at heart
That’s the way of the world
Plant your flower and you grow a pearl
A child is born with a heart of gold
The way of the world makes his heart grow cold