My salty tears matched that of the salty water, just steps away from my feet on what looked like a perfect weekend.
If you didn’t know our current situation, one might glance at the picture above and only see the amazing landscape, beautiful sunshine, salt water, good wine, plentiful food and loving family. Now all I see is a family that is hurting, and figuring out how to navigate the unimaginable, one day at a time.
In the past, a weekend like the one above would have been perfect. Now… it is painful. I am finding it so incredibly hard to be happy. The peaceful setting allowed too much time for my mind to race, thoughts to creep in, and stories to build in our heads.
Surrounded by family and a friend I was drowning in my sorrow for our current situation. One for which there is no life raft, flotation device, or rescue. How I wish I could save her. How I wish ANYONE could save her, or knew how to… but at this point, even the best and brilliant are just guessing. Still so much confusion over this disease that steals our future, and breaks my heart.
I ride my emotions like some ride the waves, up and down… many times crashing on the shore only to feel washed away in the end. Every day is new emotional adventure, something that takes so much out of a person.
Flipping through Mike’s phone I stumble across a video of Lea, sweetly singing “Oh Mr. Sun, Sun, Mr. Golden Sun, please shine down on me!…” Her face was as bright as the sun she sang about. The tumor had not yet taken her body and spirit from us. I want to smash his phone in pieces as this video throws me back down into the dark place I often go, angry at the world, pleading with God, feeling again, like I am stuck in a nightmare from which I can’t wake up.
Mike and I sit in the dark and talk about the possible clinical trials and experimental treatments available for Lea. All would take us out of state, some out of country, and some costing upwards of $150,000 out of pocket. These discussions make me sick to my stomach every time. I treat these discussions like I treat the grocery store, get in, get what you need, get out. Mike has been bearing the burden of researching and studying and asking all the questions, something I am so grateful for. We have a lot of options, and will soon have to make some difficult decisions.
“I hope this doesn’t change me.” I tell him flatly.
He replies “How can it not change you?”
“No, I mean I hope it doesn’t turn me bad. How do you come back from burying a child? I know people live through it, but how?” I sob, and I pray, like I always do when the earth feels like it is spinning out of control under my feet. I ask for peace for now, and for later. I pray for a miracle, but I ask for peace for any outcome. And I get it.
Sitting in the sunshine the morning after, eyes still puffy from the tears, a dagger pierces my heart when Lea says to Mike “when I am 30 you will be like 90 Daddy!” I quickly go inside as I don’t want her to see me fight back the sobs. Salt in my wound.
I drive home from the picturesque weekend with a frown on my face to prepare for a candle lighting in honor of Lea and my family. I go back and forth between going and staying home, only to decide in the end to attend.
Sitting in the back of the chapel I look around through wet eyes and count close to 100 people. One hundred people showed up to pray, light candles and show how much the love and care for us.
Three things are getting us through each day, family, faith and friends. All are on display here in this room and I can feel the love. I feel the peace I have been praying for and an hour later I drive home in silence to Lea, who is perched at the kitchen island like she often is, coloring a beautiful picture for me.
Today is a new day. It is a better day. Tomorrow we hit the halfway point for radiation, something I have mixed emotions about. Radiation means (most of the time) the tumor shrinks. Radiation means (most of the time) symptoms disappear. Only to return. Who knows when. I feel like we are on a timer. I feel like radiation is a tease, something that we can only do once, that will make her better, but only for a short time unless God answers our prayers for a miracle and keeps that tumor from growing.
It’s Wednesday which means art class. She paints, draws and sketches, while I blog just a few feet away. She is so happy in her creative element, unaware of what is happening to her body. Today I will be grateful for that.
One of the many things this has shown me is how fragile life is. So wear the fancy shoes, carry the expensive handbag, burn that special candle, use your best china, say yes to dinners with your friends, tell your family you love them, go on that vacation, and be present in this amazing gift called life.