Once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But when you come out of the storm, you won’t be the same person who walked in. That’s what the storm’s all about. -Haruki Murakami
I was told she turned the sky green again, just like she did the night of her wake when a tornado ripped through Hamden. I was told she painted another double rainbow across the sky after the downpour had subsided. A downpour that started at the exact moment we started to gather in her honor to raise money for the thing that took her from us.
Lea was a force of nature. Defiant and about who she was and what she wanted she would dig her heels in and fight. This served her well when life gave her something no child should ever have to face.
Being two minutes early to the fundraiser, we missed the downpour by seconds. I carefully walked up the steps in my gold wedges, thankful my hair was still intact, and opened the heavy, antique doors leading into Roia. I couldn’t breathe. There she was, larger than life, her smile big and bright on poster that stood taller than my 5’2″ frame. They call her the “Hero” of the CT Chapter of the Cure Starts Now, but she was my hero long before this night. I could hear my heart beating in my chest and wondered if everyone around me could see it in my navy jumpsuit with a plunging neckline. My mouth was dry and my legs felt like they might give out beneath me. I took it all in and my mind decided it was all too much. I ran upstairs to let the tears flow and try to compose myself. It felt wrong. Being here for this felt so wrong… but I know it was right. It is what she would want. I used the lessons she taught me in bravery to get up and say what needed to be said.
I nursed a glass of white and paced the beautiful space that was quickly filling up with friends, family and strangers dressed in their best.
This night was planned long before she left us, and to be honest, when she first passed I was indifferent to finding a cure. For Lea, it will be too late. Nothing can bring her back. But as I told the two hundred incredible people that filled Roia, helping is what Lea would want us to do. The night was filled with joy and sorrow, laughter and tears. It was an overwhelming night were we did a lot of good for this cause and raised over $62,000. And two days later I turned 39.
I miss her every day… it is an excruciating feeling, this missing her. The day I turned 39 I missed the handmade gifts and bright, colorful cards she would spend hours crafting in honor of special occasions, like birthdays. I missed her at the table as we savored my favorite birthday meal, lobster and corn. There was a empty space at the table where she should be… and my heart feels that every second of every day. I missed her the next day as we took our first photo as a family of four. It felt so empty without that one amazing human added so much to our family.
I imagine her a lot. My imagining contains vivid details, right down to her thick french braids, bright colorful clothes, joyful skip and musical giggle. Last week Liv and Keira were sprinting ahead of me as they always do. I turned and looked behind me, where Lea always was, slowly walking as she took in the world around her, never looking where she was going which would sometimes lead to trips and falls. I would stop and say “come on Lili!” “Coming momma!” she would yell ahead to me as she turned her leisurely stroll into a jubilant trot.
But when I turned, she wasn’t there. She is gone. A word and feeling I struggle with every day. Her presence is missed every moment, and in my mind, she will always be six. I will never have the chance to know her at 7, or 8 or 18 or 28… something I struggle with as I see her little friends running around. I quickly size them up and wonder if Lea would be that size. Or what clothes she would insist on wearing. Or how she would insist I construct her hair. Or what amazing art she would have created. So many wonderings. So much sadness.
The weather today is exactly like it was one year ago on this day. How do I know this? Because that was the day I watched Lea fall off her bike and run away in tears screaming that she can’t ride her bike anymore. It was the day we sobbed together on the cream sofa of our brightly lit living room as she told me that she didn’t feel like Lea anymore. That her body felt lazy. That she was hearing voices in her head that were trying to change her. That there was a monster in her brain that was trying to kill her. That was August 9, 2017, the day I called the doctor and said I need to come in, now. One day later they found the monster in Lea’s head. It was a tumor growing in her brainstem called DIPG, that did indeed kill her exactly nine months later.
Tomorrow marks one year of this hell on earth, and three months since she left us.
Today my heart hurts more than usual. Today there is a pit in my stomach that won’t leave. One year went by so fast. We endured so much. And we miss her more than ever.
As I told the amazing community of supporters at Roia, Lea’s short life was not wasted. She continues to impact how I live my life, and I know she does the same for many of you. I have received countless emails, cards and messages about the impact she had on you and the changes you have made in your life because of her story.
Since the start of this hell, I have compared the feelings of grief, mourning and sorrow to a storm that comes and goes in waves. I often imagine myself in the ocean, some days the water is calm and I am floating above the water able to breathe, function and find joy. Other days I am bobbing up and down, some moments my head is above water, other moments I am submerged under the waves. And there are the bad days, the days I sink like a stone to the bottom of the deep ocean, unable to breathe, feeling like I won’t make it, and maybe I don’t want to.
Thank you to those who are my breath in the deep deep water. I am grateful I can continue to find purpose on the days when I sink to the bottom like a stone. That purpose allows me to resurface and move forward, whenever the storm passes.
I have learned that grief is a process that becomes a part of your story… it is knitted into the fabric of who you are. It is not something you get over, or move past, it is a new way of being.
I have been doing my best to grieve Lea, but also honor her. I know she would want me to be happy. She hated to see me in pain, or sad. She wanted to fix it with a hug and an “I love you momma…” Now more than ever, I could really use some of that Lea medicine. I will continue to honor her with the way I live my life. She has been and continues to be my greatest teacher ever.
Grief never ends… But it changes. It’s a passage, not a place to stay. Grief is not a sign of weakness, nor a lack of faith… It is the price of love.