Perhaps the butterfly is proof that you can go through a great deal of darkness yet still become something beautiful.
It was even harder than I imagined it would be. It was the day I had been dreading since the told us of her diagnosis in August. It was the day they tell us that this is it. The monster is back.
I pushed Lea down the long hallway towards the healing garden, grateful she was in a wheelchair and unable to see the tears streaming down my face and my attempt to choke back sobs. The amazing nurse who usually administers her injections walked with me, stroking my shoulder which was bobbing up and down, telling me how sorry she is.
I gave her a hug and sent her away. I wanted to be alone. The rain falls steadily from the gray skies as if the earth was crying with me. Lea is asleep. It has been a long day for everyone and the news of her MRI was worse than we anticipated. My body is trembling as I scream at her in my head. DON’T LEAVE US! As if she has a choice in the matter.
Her tumor is growing at an alarming rate, even for DIPG. In addition to the tumor in her brainstem, they found a second tumor in the front of her brain. Our days in Boston are done. Another failed trial for this monster of a disease that is taking our children from us.
Mike is alone in the room with the doctors getting the gory details that debilitate me. Words like hospice are mentioned. And hydrocephalus. And a shunt. And strategies on how to make her the most comfortable in her remaining days. They don’t like putting a timestamp on it, but tell us weeks… maybe a month or two is all we have left with our girl.
One of my all time favorite pictures of us. October, 2011. (MW Photography)
On the drive home I open my Shutterfly app and order dozens pictures of Lea and our family, back when she was sparkly and filled with joy. Back when I was happy and light, with a skip in my step. I take inventory of my closet to make sure I have a black dress. My mind drifts to her funeral… something no parent should ever have to imagine or endure.
I am so tired. And so scared of what lies ahead of us. Now more than ever.
So this is that one amazing life, huh?
I used to think that we deserved to be happy in our lives. I now believe the goal of life is live with purpose. To love deeply… even if it means excruciating pain when you lose. To find fulfillment in what you do. To practice being strong, and when you can’t be strong, to be brave. Because one day life might hand you something you cannot fathom, and you are going to have to handle it.
You can’t always be strong. But you can always be brave.
I am not looking to draw this process out. I am not interested in additional clinical trials, or re-radiation, or anything that prolongs this misery for her.
I want her here more than anything in the world, but I still pray that when it is time, God will take her peacefully without suffering and give us the grace to handle that. Last night Lea had two seizures in a two hour period. It was petrifying to see her lifeless and unresponsive. Both times I thought, this is it. And then she came back to us and I thought, I am so not ready to say goodbye to her.
Somedays are harder and more devastating than others. Yesterday was a good day. We laughed and cuddled. She told me I was spectacular. I held her in my arms like I did when she was a baby, and as she slept I wondered how many days like this are left for us. Today I am sick to my stomach and feel like I am being swallowed whole by sorrow and sadness, wishing time would stand still because it would mean she would be with us.
We are asking for your urgent prayers for Lea. Please pray for God’s mercy, grace, peace and understanding. I don’t understand it all. I am angry and confused and so very devastated.
We meet with Lea’s doctor at Yale tomorrow to discuss what comes next.
We continue to see the best in people during the worst of times. People continue to bless us with random acts of kindness that let us know “You are not alone. We have no idea what you are going through but we are here. We got you.”
Thank you for the cake pops and Starbucks gift card which were delivered to us in the waiting room minutes before we got the news.
Thank you for the hot soup, and Eli’s delivery waiting for us after a 15 hour day and one of the most devastating of our lives.
Thank you for the beautiful flowers stuffed with gift cards and left on our doorstep.
Thank you for taking Liv and Keira and making life “normal” for them, even if for a few hours.
I am are grateful for an amazingly strong support network that continues to lift us up. Thank you so much. You make a difference in our lives.
During the darkest nights, the stars shine the brightest. -Christa Doran
Our joyful girl, 2016. (Christina Rosario Photography)