I've been thinking about this date for months now...How will it be? How will I be? How can it be? Can I still be...?
But I find myself never organizing a memorial or ceremony or anything to symbolize the most life-changing event in my life, my family's life. My gardienne tells me, "Oh, you mustn't think of it as the anniversary of his illness" How can I not? It's the day my healthy son died, my whole son died, and came back forever changed. No, he did not die (thanks to your fasts & prayers & mine, and Dear God's will), but parts of him did. Parts of me did. Part of my happiness did. My naivete did. I want to celebrate & cry & scream all at the same time. How can I give it the justice it deserves? February 20th is etched in my soul as the day I should have taken my son to the ER, but why would I? He just had a fever. I should have insisted on a spinal tap, though no one would even think to do it then. But what if I had? Then all of the ensuing events that followed may have played out differently. I could tell you these events minute-by-minute, word-for-word. I have played and re-played them in my mind a thousand times since. How could I have known? How could I have reacted differently? How could I have prevented this? And why didn't I? How did my loving God allow this to happen to my perfect, beautiful baby boy? It's monumental. Happy Anniversary. I say it with sincere, heart-felt joy coupled with gaping, profound sadness.
And so I realize the weekend is full of activities I don't really want to participate in. Nothing monumental or terrible, just regular-day-to-day obligations that I feel sort of pushed into, and I'm dragging my feet.
Why? Because I want to be in a very quiet place. MY very quiet, very holy, very solace, reverent place. I want to meditate on how my stars became aligned or 2 planets crashed together or the Gods made this thing happen to me, my son, to us. And what is the bigger meaning in it all? What am I to take from it? What have I learned from it? Maybe more importantly, What have I NOT learned from it?
I want to walk with those angels again, see them holding my baby son, feel the peace I felt there, next to my son's lifeless body for days last February and March.
It's weighing heavily on me. So much so that I nearly burst into tears twice today, hyperventilating, walking the streets of Paris, with my babies in push chairs...and then was saved, distracted by a friend who'd come up behind me or a child calling my name, asking for something, begging me back to reality. This reality. Not my alternate, perfect-before reality.
I am somber. I feel like I am in a rainy desert, a sad tourist, a confused professor...2 opposites, 2 things that do not mesh. I am happy, too. SO thankful.
I eat apples & peanut butter (I haven't eaten them for a year, likely) standing in the kitchen, feeling my earache or toothache or recently diagnosed TMJ, reflecting on the irony that, while looking at the spinach lasagna I forced the kids to eat for dinner tonight, I couldn't stomach one spoonful.
My stomach is in knots, I cry, I want to scream, I want to run forever into the sunset, then wish to retreat, find a really good yoga pose, or maybe a fluffy, comfy bed or something strikingly spiritually enlightening, something so very satisfying. And be there.
The house is quiet. The kids are quiet, and yet I am not quiet inside. I am raging, tossing, turning inside.
I feel sorrow, pain, anguish, mostly anxiety about PJ's EEG tomorrow morning.
More what ifs, more exams, more tubes & electrodes & wires & cords & registering & more holding my growing toddler to my chest, and more praying. More tears, from him and me. Removing his "hearing" to put him in a confused, isolated world, forcing him to sleep, forcing him to wake up, forcing him to do physical therapy. "But he is still not walking?", I fear they will ask. "Don't tell me of his progress, Madame, I want to be surprised" Me, too, I think to myself. Me, too.
Anti-epileptic drugs have been explained to us as being assistants in pulling Parker's brain away from the cliff, if the cliff represents the seizure. The cliff is still there, it may go away, it may not, but in the meantime, we walk along the side of the cliff. Every single day. I still carry valium in my purse in case he has a full blown seizure which he has not done since February 21st last year. We give him 5 doses of anti-epileptics every single day. We've completely weaned him for over a month from the urgent anti-epileptic and this EEG will show us his brain activity without this vital drug.
Parker has not had any seizures for 3 months, since mid-November. Visible seizures, I mean. Who knows what is going on inside of that brain of his.
I used to consider myself a risk-taker. I jumped off cliffs into Lake Powell or the Colorado River for the thrill of it when I was a teenager. But now, I'm not sure I'd still jump. I'm just not sure anymore. I hate to say that. I hate to be that.
He is my prisoner this time, in my arms. My deaf prisoner at the EEG. I rejoice in his rebellion, his strength, his mind being willing and able to command his arms and the fine muscles in his hands to attempt removal of these obtrusions and his legs to flail in mutiny, his voice to screech in agony. Agony that can only be reproduced so gloriously by a healthy toddler.
I like jumpers. They are exciting, fun-loving, free. Not side-liners, watching the game. They play the game. They live life. I want to play. I hate riding the bench. I want to jump. But I don't. Yet, I don't want to be pushed. There is a difference. A significant difference between jumping of your own will and being pushed.
When I was about 9 years old, I was pushed off a high dive at a summer camp. I was mostly ok, luckily. My foot actually hit the pavement, but the rest of me landed rather safely in the water. I was stunned.
I was skiing with some girlfriends. We were scheduled to rendez-vous with my mom in the parking lot at 4 pm. We had about 20 minutes before we would be considered late. We didn't often ski this mountain, and decided to ski the bottom half rather than ride the tram back down. I was exhilirated by the signs that read, "Experts only". I told them it was an exaggeration, and we'd better get going. Before I knew it, my fourteen year old friends and I were too far committed to go back, to hike back up the hill and take the easy way down. Before I knew it I found myself alone, going fast, I mean really, icy, shaded-mountain-end-of-day fast. The path narrowed to the width of my skis tightly together. On one side of me was a high, hard, icy bank of snow lining the path, on the other was a cliff, with a 200 foot drop off. Without even having time to think, I abruptly turned into the icy bank. The force of the turn and perhaps hitting the icy bank actually propelled me backwards over the cliff, back first. I remember falling. I remember thinking I was on my way to death. I remember thinking, "So this is what it feels like". I fell only about 15 or 20 feet before I felt a big thud on my upper left thigh. I stopped. Abruptly. I had hit a tree. But this tree appeared out of no where. I looked on either side of me and saw nothing but drop. Nothing but a long way down. I remember feeling it was not my choice to turn when I did. It was another force outside myself that made me turn, that made me fall over the cliff when I did. I was perfectly fine, shaken up, but fine. I carefully took off my skis & scaled back up the mountain in just enough time for a ski patrol man to come by on snow mobile and ask if I was "Renee?" and if I was "ok?"Apparently they were already looking for me. I was not afraid. Did I jump in my subconscious, or get pushed by outside forces?
I guess I am asking the question if I am being pushed or if I am jumping into this weekend, or turning into an icy bank, this EEG, this future. I am definitely not feeling like jumping. When you jump, you are sure of yourself, you are sure of your risk, you are sure of the outcome, or you gladly accept the consequences with some sense of surety. When you are pushed: you are clumsy, imprecise. The risk for error seems huge and ensuing.
I've been thinking of the year anniversary with much hesitation, much weariness, much trepidation. I don't want to over-dramatize it, but it is significant.
A year ago, the choices I made changed my life, Parker's life, all of our lives significantly FOREVER.
This I mean not in the good way, the adrenaline you feel during or following a jump, but in a hesitant, bad way like when you are pushed off the high dive because you've been up there too long that some kid decides he's tired of waiting & makes the decision for you.
Right now I just don't feel like jumping. I am being pushed. From all angles I feel hazy fog and heavy, muddy hands holding me in the fog, pushing me where I don't want to go.
We were on a train recently, me and John. We happened to be sitting in the seats that face backwards. As we slowly departed the station, we watched the scenery pass us by in reverse. It felt odd, strange, like we were rewinding part of our life in a movie. I asked John if he'd do it. "Do what?", he said. "Rewind it. Go back. Play it all again, only change it, make it better." Without hesitation, he shook his head & said, "No." This is why I love this man. He stands firm. Not me, I am a jumper or a push-ee. He takes what is given to him. He walks along the side of the cliff with sure footing. He knows it is for our own good, our learning, our growth. I heard him tell the Director of the deaf school we visited on Monday that he didn't believe things happened by chance anymore.
All week long I kept seeing a note I had written to myself (I don't even remember when): "Think of a trial as an invitation to grow"... Now I think of it as an invitation to jump. In a good way. And hope I can fly, Parker can fly, that we can all fly through this weekend. And beyond.
