In the Love Place

And so lying underneath those stormy skies
She’d say, oh, I know the sun must set to rise.

Paradise by Coldplay

~For Richard, Heidi and Gabriel~

It was Sunday afternoon. The weekend that seemed to stretch out enticingly before me on Friday was, for all intents and purposes, over. I sat on the couch, mindlessly surfing Facebook, playing Angry Birds. I had the ‘Sunday blues,’ that restless dissatisfaction that strikes around 5:00 p.m. when the realization that a weekend filled with relaxation and leisure is just not going to materialize. This happens frequently. My days get filled with grocery shopping, running kids to activities, projects at home, work issues, and other mundane tasks. My fun time gets relegated to Saturday night after the kids go to bed and I pass out halfway through a movie.

I felt a shift coming in the weather foretold by the pounding headache that stormed my skull. Sitting alone I looked out the window at the gathering clouds and malaise settled over me as I thought with a sigh how the girls would be home shortly. I’d have to get up from this couch to start the nighttime routine: wrangle up dinner, corral kids into the shower and herd them to bed. I’d go through Friday folders (Sunday night folders, let’s be real) and look ahead to everyone’s schedules, gearing up for another busy week.

But that was all before I got the news that my brother-in-law had died. Just 45 minutes earlier, while I was lamenting the end of the weekend, he’d taken his last breath and given up the battle he’d waged to the finish. Though he and my sister were separated, in the end, their differences didn’t matter. The strife and tension between them healed spontaneously on his journey from this plane to the next. When cancer took over his body, she took him into her home. She tended to his dying and in the process found forgiveness. Her focus was on creating lasting memories for her son, their son.  He is seven, my nephew, much too young to lose his father. And his father, much too young to lose his life.

Richard suffered in pain and struggled for every breath. He had not come peacefully to his death. The denial tortured both he and Heidi. When his agitation became too great, the meds gave relief and he drifted in a morphine-induced fog. My sister lay down with her husband, pressing her body to his, her mouth to his ear. 

“Go, my love,” she whispered. “Go to that beautiful place we talked about. Remember we love you.

“We will always love you.” 

His ravaged body was stilled, his breathing calmed, and a tear formed in the corner of his eye.

I remember when she brought him to Austin to meet us. I remember he was ‘over the moon’ in love with her. I remember his huge stature and his long hair, sometimes pulled back in a ponytail, sometimes let loose. I remember his easy smile and the groovy way he said, “Right on” with the accent on the first word, like “Clap on.” I remember their beautiful wedding and the beautiful baby boy that came later. I remember how much that baby looked like his dad. And still does. I long to wrap them all in a soft cocoon and buffer the pain until metamorphosis is complete; life is never destroyed, it only changes form.

I like to think about our souls—the spark of divinity residing in our physical bodies—lingering after death, staying close for a time to comfort those left behind. Or maybe never leaving, like the silent, vigilant angels in long black coats from the movie, City of Angels, remaining present as witness and companion to our earthly travails.

I know my daughter, Sydney, who was born with Down syndrome has at least one guardian angel, if not legions of them. Children with DS are prone to respiratory issues. What began as an ear infection progressed until she came so close to dying when she was two years old that even the doctors say she was watched over by a benevolent presence.

In the hospital, the night before she was transferred to the PICU, I rocked her. An oxygen cannula in her nose, she was listless. Her fever soared to 105 and her breathing was labored and ragged. We floated, she and I, through an exhausted haze that skimmed the edges of consciousness and waking dreams. It was in that gap I felt her slipping away; I couldn’t hold onto her.

She was put on a ventilator, unable to breathe on her own. Pneumonia raged and her lungs filled with infection. She didn’t respond to treatment and developed secondary infections and complications. Her condition deteriorated rapidly. As the days stretched into weeks, my husband and I watched our daughter disappear under tubes and wires and leads and catheters that connected her little body to monitors and machines, lying lifeless while the fight to save her seemed interminable. We couldn’t give voice to our deepest fear. “What if she doesn’t get better?

“What if she never wakes up?”

My memories swim in a blur of panic, exhaustion and desperate hope, but also unwavering love and support. Surrounded by an out-pouring of love, our families flew in from across the country, our community gathered, our friends with children who have Down syndrome stood by us, arms around us, holding us up. Prayers from across the globe were sent on behalf of our little girl.

She came so close to dying. But she didn’t.  Recovery came quickly once she turned around. She came off the vent. She woke up and recognized us. She cried and reached for us. We went home and exhaled after a month of holding our breath and slept together in our big bed for what seemed like days. We felt we’d never need anything else again.

The reprieve from death brought relief that rushed over us in waves. At the same time my empathy for parents who had no such reprieve and were forced to face the unthinkable expanded a hundred-fold. Life held an exquisite quality and Sydney’s essence radiated out in ever-widening circles, inspiring and touching people who’d never even met her. In her recovery was a gift. A celebration of life. A rebirth.

Facing mortality forces a confrontation with reality, and the reality is this:  life comes to an end, for every single person. It seems obvious, but to feel it up-close and personal is to know we are but transient here. And yet it is my acceptance of the great mysteries, my belief in worlds beyond this existence, that allows me to transcend suffering and transform my perspective of mortal life. We are spiritual beings having human experiences rather than human beings having spiritual experiences.

Though I’d been expecting my brother-in-law’s demise, when it came, the sharpness of it split my heart wide open. I put the phone down and wept.  For him. For my sister. For their fatherless child. For all the days they will not have together. He is gone and yet he remains, in spirit, in the hearts and minds of those who knew him, and embodied in the son who lives beyond him.

And in his death is a gift, as well, the invitation to pay attention. To choose love. It is a summons to me.

“Live now, don’t miss it! See the exuberance of your brilliant, creative children instead of the mess they’re making. Hear the delight and joy in their laughter rather than noisy chaos. Embrace the love that’s right in front of you while you have it

“Cherish this.”

My complaints of a disappointing weekend were instantly eclipsed by an all-encompassing gratitude. Grief juxtaposed with an awareness of time as a priceless commodity brought this clarity to my internal narrative. The hours spent angry or rushing or frustrated, wishing something or someone was different, these are squandered hours I cannot call back.

In that moment, I vowed to be different, to see, feel, and act differently. The laundry is not important, the dishes in the sink and the spills on the floor are not important. Lost opportunities or unmet expectations, not important. Disabilities and challenges and limitations, none are of any import. My family knowing they are precious and loved by me? That is of the utmost importance.

I looked around the living room as a visitor in my own home and no longer saw the mundane, but the complex. I saw a family’s dynamic presence, full of life and love and interaction. I saw abundance and blessings beyond comprehension. My surroundings transformed before my eyes like an autostereogram, the Magic Eye phenomenon, in which 3D images arise from the 2D. A sculpture, glittering magnificently, emerged, lifting out of the background. And it had been there all along, masquerading as everyday stuff. But when my eyes focused with a fragile, tentative shift, I glimpsed something extraordinary. I saw straight through the outer trappings to the inner fragility and purity of every soul. It became clear to me that kindness is the only endeavor worth pursuing.

That night I tucked my little girls into their beds. Wrapping my arms around them, I closed my eyes and felt their warmth as I breathed them in, deeply. I made sure to tell my big kids, adults living their own lives now, how much I love them, and that they’ll always be close to me, no matter how far away they are. And in my own bed, I pressed my body against my husband’s and held him close, my mouth to his ear, I whispered, “Remember, I love you. 

“I will always love you.”

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Filed under Family, Letting Go, Loss, Marriage, Siblings, Sisterhood, Special Needs

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