Wednesday, October 18, 2017

Should......The Other "S" Word


 Last week my oldest child turned 16.

There was no party, no used car bedecked with a flouncy red bow sitting in the driveway, no begging for a new video game, paint ball with friends, or plans for homecoming. There was only me, my three younger kids, a birthday teen several hours away, and deafening silence.

I couldn't post on FB. I always post photos and sweet comments about each child's personality on their special day, but I couldn't do it. I don't often struggle with the comparison factor that drives people to quit social media to avoid the steady diet of carefully edited words and photos- but last week? I could barely touch the blue F icon on my phone to open the endless stream of daily fodder and initiate the familiar scrolling that has become part of my mindless routine.



Last week was hard. Hellish. Ugly. I'd had a phone call earlier in the week from a no-nonsense nurse at the facility where he's living who delivered news to me that literally knocked me off of my feet. I fell to the ground in sobs, aching, as her perfunctory words ravaged my heart. Supposedly he'd been in an altercation with another resident. It had become one person's word against the other. The few details I was given stole all of the breath from my body. As I struggled to draw enough oxygen into my lungs between loud sobs under the still, starry, autumn evening, she asked if I had any questions. I know her job sucked. I know hearing my hurt was difficult, and I'm quite sure she wanted nothing more than to complete the task she'd been given and hang up the phone. But it stung. I managed to laugh sarcastically through tears and tell her that I had none. "I can tell you're teary, so I'm going to let you go now. Have a nice night". <click>
 I must've looked like a character out of biblical times- wailing in the dirt, my forehead pressed into the cold ground as I rolled over into the fetal position. I'd been burning leaves before she called, and was covered in soot and ash- a fitting backdrop for the rending of my heart and spirit in lieu of my clothing.

I was broken. My precious son, who'd been making such progress, seemed to have had a big setback. I was reeling. He called moments after the nurse escaped my crying, and once he realized I was upset, made sure to tell me the incident 'never happened'. I tried to maintain hope. To entertain the possibility that the story I'd just been given by the nurse was flawed. But our difficult history, and the long list of circumstances where he'd been dishonest, or manipulative, or sneaky, washed over any ember of hope I was carrying and left only grief, loneliness, and hurt in its wake.
I tried to reassure him I was processing. But I knew my words were hollow and fell flat. I hadn't had time to process what I'd just heard, much less get myself to the place where I could encourage him in the mess. He changed the subject to his birthday- secure in the knowledge that he was telling the truth- but I couldn't follow him in the happiness; and I broke some more. His 16th birthday. A big one. The last big one before 'adulthood' in the eyes of the law. A birthday we should be celebrating, enjoying, anticipating... and I only felt robbed. Shortchanged. Angry. Alone.

The short version of the story is that he was telling the truth. It never happened. The longer version had me barely breathing through grief for days, carrying hurt and sadness around that I had no idea what to do with.
I called him on his birthday. Too broken and weary to sing loudly- which I would usually do. Guilted and shamed for my inability to rally myself in the moment for a milestone event the world tells us we should celebrate.

 A grocery store sheet cake in a conference room on Sunday in place of his much loved homemade coconut cake. A few simple gifts which he was excited about, lots of hugs, and then games in the cafeteria for a couple of hours. Enjoying ourselves, sharing some laughs and smiles, and time together- but hovering over us was the weighty cloud of our circumstance. One I'm grateful for and angry about at the same time. A circumstance few people in my life can begin to comprehend- and one I work hard to not think about much. I ached as I watched him- the small child almost gone, being replaced by a tall, muscled man who talks with his large hands, charms with his stunning blue eyes, and entertains with a keen sense of humor.

My life has become very small again. I move in and out of this space in relationship to the level of stress and grief present in my life. There are times I'm carefree and have the ability to engage with a larger group of the people I love, and who love me, and then there are times I retreat. Unable to talk or expend the energy to engage. There is nothing left in me after work, kids, life.. to give anything else to anyone.

One of the hardest parts of raising a child with a chronic illness- whether physical, mental, emotional... is the grief that is never resolved. There is no closure for anyone. There are victories and progress and surprising strides made- and then, like the 16th birthday that came and went without fanfare- there are those times where the stark reality of this life is laid bare against the vibrant, technicolor idealized life I anticipated; and I feel punched in the stomach, sent stumbling backwards, trying to steady myself again.

My counselor said what I already know. The grief comes because there are still places in me where I hold on to my idea of what 'should have been'. This is nothing new to me, and often, I'm able to embrace the difficult, painful, beautiful, rich life we have- in spite of its opposition to the life I dreamed I'd have. But sometimes, I get angry. I want to punch someone or something for denying us the 'normalcy' I long for: The mundane, typical, frustrating teenage angst so many parents wrestle with. I want to apologize to him- beg him to understand how the mental illness, the autism- none of it is his fault. Instead, I keep walking forward. Screwing up royally, falling short over and over, frustrated at myself for not being further along, then reminding myself of how far we've come. My counselor reminded me quietly through my tears last week- none of us are really living the life we thought we 'should' have. It's different for everyone, but the truth is that we don't get to leave the confines of this planet at the end of our lives without having experienced pain and disappointment. While that doesn't offer much solace to a broken mother's heart, it gives me pause. It's my choice. I can succumb to grief and shatter into a devastated shell of a woman, or I can grieve and be gentle with myself. Patient in the process. Real about the hurt and disappointment, and guarded in how I spend my time... protective of my heart and state of mind.

Should have been will kill us if we let it. Suffocating the beauty found in the what truly is. I've not yet come back to the place of joy and energy I enjoy inhabiting- but I know it will come. I've learned to not try and force it anymore. To recognize that the pain is a tool, a teacher, a refiner. Nothing is wasted, and I've no doubt this most recent dance with grief will do the work it's meant to do. In the meantime, I've pulled inward to preserve my emotional energy. If you've wondered where I've been- now you know, it's not you.. it's me. And I promise I'll rise once again, <3