What is normal?!
Why do we aspire to be normal, or sometimes try so very hard to be different?
I had a particularly hard 24 hours after taking Parker for his EEG check up in Garches this week. It's not so much that he is completely exhausted by the time we even get there, but that all of my existence when I look into his eyes is wondering if this fatigue will induce seizures in my boy? Then I wonder if it is all worth it?
If dragging him there, forcing him to stay awake, drugging him to sleep, then forcing him to wake up is actually telling us anything worthwhile at all in his brain waves.
The doctors have even admitted to me that "we just don't know all that much about brains" anyway...(an even greater testimony to me that these bodies of ours are patterned after God's, and that these brains are capable of so much more)
And it was not only that I enter these situations now with hopelessly vague feelings-so difficult to pinpoint, but equally difficult to articulate. It's definitely NOT indifference. And I am not sure if it is FAITH. But it's sort of a quiet ACCEPTANCE of God's will. That I've realized I've walked in the shadows of death. And though it was harrowing, I survived to speak of it. And Parker is thriving (at the moment)...So, I just take each exam with stride, and step forward, try to straighten myself up, dust myself off, and catch all the fly-balls in left field that I can...realizing that sometimes I may miss one or two.
BUT I was completely out-of-sorts, a walking zombie-mommy-going through the motions in my life for a good 24 hours after this visit. And I wasn't sure if it was related to emotional or physical exhaustion. Then I realized it was actually the weighty-ness of the many SEVERELY HANDICAPPED children we encounter at Garches. And the battle-ax nurses who seem to do their jobs with no emotion. AND it's the neuro-stuff that gets me more than anything else. A wheel-chaired child is one thing, but a trembling involuntary movement-ed child is something all together different.
AND their mamas. As I drove into the parking lot, I saw a woman holding an infant next to her car, weeping. Then, as we waiting for the elevator in the Secteur Marron where we go to see Dr Q, I heard another mother asking doctors and nurses (and anyone else who would listen) what she could do to "soulage"(ease) her son's discomforts. I pretended not to hear, or felt I should not be listening. But it stabbed deep into my already-cut-and scarred-and re-pieced together heart and soul.
I left there beaten, torn, exhausted.
For wonder on how these children are meant to learn as well as teach such difficult lessons in life? And how their caretakers sincerely take these lessons to heart.
So last night after 10 pm, I got an email from Dr Q stating she couldn't possibly wait to tell me that she got the results from Wednesday's EEG, and they were NORMAL.
Huh?!
I have a hard time believing it.
I've come to terms with the fact that my son may not ever hear biologically (though I'm still holding on to stem cell research hopes). That he MAY not ever speak or hear like we do, even with his beloved (I looooovvvveee that thing) CI. That he may live in a deaf community who only signs, and marry a deaf woman, that he will ALWAYS be discriminated against. That people will likely always ask, "What is that flashing red light above his right ear?"
And I'm always surprised that they are so intrigued by it, since it's "Just Peej". I scarecely notice it, except to see if it needs readjusting, or yogurt wiped off of it, or whatever... When he's not wearing it, I feel that integral parts of him are missing now.
BUT WHAT IS NORMAL?
And what is our new normal?
And are we even SEEKing normal anymore at this point?
Or para-normal?
He's clearly NOT normal, this boy of ours. Rather than saying "normal", I prefer to use the terms "typical" or "ordinary"..and when referring to Peej, I usually say "EXTRAORDINARY".
NOT FAITH, ACCEPTANCE BUT SEVERELY HANDICAPPED AND NORMAL MAY ALWAYS SEEK EXTRAORDINARY.
But I surprisingly burst into tears of gratitude when I read her words. She said she was not in any hurry to see Parker now, knowing that "his head is working as it should".
This is a great way to start the 2 year-anniversary of his illness. Welcome to Ski Vacances Scolaires! (Though we are not skiing!) The kids just got out of school for their 2 week winter break. And last year, I was still in a very hard place. This year, I am so thankful for God's mercy and love. And I see all of Parker's progress as hand-picked blessings from my God.
He answers prayers, sometimes in his own time. And that, of course, is normal. The highest, purest level of normal.
