“Can God do anything mom?” It can be useful to answer a question with another question when you don’t have an answer, “Like what? What do you wonder if God can do, Oscar?”
“A cartwheel. Can God do a cartwheel?” My 5 year old son wants to know.
Aiyana Kalealani Louie
In fact, God can do a cartwheel. He’s doing one now. Head over heels, he’s taken the whole world with him. Round and round, up and over, finally coming to rest in a headstand. The pounding pressure of blood fills my ears and presses behind my eyes as it drains from my stomach and pools into my head. My feet flail wildly in the air searching for the ground. My thin arms struggle to hold and balance the weight of it all.
Life is upside down. My worst nightmare fear has come true. A family in our group has lost a child. Our eternal blossom, Aiyana . . .
Many of our children have life threatening diseases and death is always in the background. It drives what we do. We’ve fearfully watched other children pass in our extended communities for years. But it hasn’t happened to us . . . in almost 4 years of friendship . . . it hadn’t happened to any of our babies . . .
celebration of life photos by Heidi Hart
On that beautiful, sunny Saturday I was not expecting the text from a friend that would change everything: “You’re good at getting everyone together. Aiyana and Alisha are on their way to Rady Children’s Hospital.” They often were but I knew this time was different. The request was for everyone.
I will never forget the moment we all met Aiyana. It was the day most of us met for the first time. I had put together a meet up at Balboa Park for families interested in exploring pediatric cannabis together. While our husbands played with our kids on the playground, us moms jumped right in, sharing who was getting what where and using it how. Or not. Back then, high CBD was impossible to find. We were all on the wait list for the Stanley Brother’s Charolette’s Web that was suppose to be coming to California. But no one knew when and none of our children could wait. We were all blown away by the mom who was making her own CBD oil. Who was her source for flower? Where did she find her recipe? Which lab was everyone using to test their products? It felt SO GOOD to be together and I was leaving with so much hope. As I turned to gather my things, I heard hollering from across the grass.
Such a diva, always in sunglasses
Barreling down the lawn came Aiyana in her stroller, pushed by her determined mother, Alisha. She had 2 other children in tow and had been circling the large park trying to find us for over an hour. “We’re here! We’re here!” she called out and beamed her magical smile. Aiyana sat silently in her stroller, wearing sunglasses, and also smiled. She was so chill.
Aiyana and her mom were inseparable and she came to almost every support group. We are all so blessed to know her. She was our silent sister in the stroller, watching us all do what women do when we get together with her mischievous eyes. She’d giggle at our jokes (even the ones we thought would go over her head). I loved her long, slender fingers and she loved painted nails, dancing and hanging out with her brothers and sister. She was gentle and pure and good in ways most will never ever know.
Our 11 year old friend passes and the world just goes on. It’s surreal and I don’t understand how. I feel stuck, hung up and hanging out, upside down with God. I’m refusing to have a full blown existential crisis trying to understand the ways the divine can and can’t intervene.
My touch stone and reassurance always comes from acts of love. Our community, my women. We all intuitively knew what to do. Because Alisha was committed to organ donation, they were in the hospital for days until she bravely walked Aiyana down to surgery and said good bye. We stayed in communication throughout. “Is someone with Alisha?” There always was.
The flag raised at Rady’s in honor of Aiyana
Few choices are more painful and selfless than donation. The process is long and felt unending. As time slowed and the days went on, I prayed for a resolution that seemed as if it would never come. Every choice was so unfair and heart breaking.
In the midst, Alisha’s strength and grace was transcendent. How is she real? I wondered and decided that she’s not. In her grief, she faced death head on and turned it upside down. She was steadfast in her commitment. If she could prevent another mother from suffering her same loss, she would and did. Pause to imagine the 3 children and their families the moment they learned they would receive Aiyana’s life saving organs. Alisha and Aiyana are more than heroes, a Goddess and her Angel.
Witnessing all the trauma, disbelief, fear, surrender, heart break, beauty, bravery, sacrifice, and self-less love has short circuited my system. My head and heart are struggling to reconcile my own grief that feels haunting and unresolvable. And I’m just a friend. Today one of my hospice patients shared with me about the death of her son. “It’s a loss you never lose,” she confided in a low voice. I don’t care how medically complicated Aiyana’s life could be, the best place for a child is always with her mother.
Yet I have to listen to this still small voice that leads me to believe healing must be possible. I’ve observed with my patients and their families 3 factors that can soften the acuity of death:
1. faith
2. good people
3. and time
You need the first 2 to get through the third. And mama, you have them all on your side. I’m writing this so you’ll have a reminder. You are not alone and we all love you so much. We are so incredibly proud of you and it means a lot to all of us to be counted among your people. While your heart will always be in heaven with Aiyana, you will get turned around back here on earth. Not today or tomorrow but you will.
Aiyana, I know you know this is true and are not worried about your mom. You more than anyone have seen how courageous, fierce and strong she is. We are bathing you both in golden light and love during this transition. You, our eternal blossom, are dancing, running, smiling in our hearts forever. We love you love you love you Aiyana. Thank you for everything Angel.
Rest in Peace Aiyana Kalealani Louie 09/26/05 - 09/12/17
A YouCaring fund has been set up here to help Alisha and her children recover from their loss. Your support is so appreciated.
This is everything.