Salty

Christa Doran Uncategorized 26 Comments

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. 

Comments 26

  1. Just love and prayers my friend, love and prayers. I hope you all continue to feel the unending, limitless love of your friends, family and God.
    ?xoxo

    1. I love you so much! I pray everyday and ask God for a miracle and as always I’m stronger in so many ways just by knowing you.. I’m going to try my best to help you be strong! <3

  2. I read these blogs and cry my eyes out . I understand totally what you , your husband and family are going thru . Hang onto family , faith and friends . They will help you in their own special way . Yes this experience will change you . You appreciate every little thing around you , outlook changes for the better, attitude changes .Rely heavily on your faith . I pray for Lea , & family daily . With much love to you all .

  3. Christa and family, you continue to amaze me in this terrible time. I think of this situation and Lea often. I don’t understand it, I don’t think anyone does. Continued prayer and more prayers and more.

  4. Christa- You will change. How can you not? You will be different. How can you not?But YOU will be exactly who you are suppose to be. God will be with you. You will have your family, faith and friends that will always be with you. On Good and really shitty rotten days. In time, the new you will find the purpose and all of us who love, respect and care so deeply for your family will still be surrounding you and lifting you up.

  5. You amaze me with your honesty and strength. I think of your family and pray for all of you everyday. Sending love and hugs to you always ❤️

  6. From one Cold Spring mom and nurse, I admire your faith and love. I will be keeping your family in my thoughts and prayers. Hope is always alive.

  7. You are changed no matter what. But you can be sad and angry, and also feel joy and love. It’s ok to feel all those things at the same time. Huge hugs to you. And thank you for sharing all of what you are going through. Love you xo

  8. I pray for you to find peace. I too am struggling with a similar scenario: my 46 year old husband (who I have been married to almost 25 years) was diagnosed with ALS. There is no cure, there is no treatment, there is no hope. Only suffering until the end. It wasn’t supposed to end this way, we have a 10 year old, we love to travel, we actually love each other, and had plans to grow old together. Now we are a ticking time bomb. Every day I watch this horrific disease overtake his body. I am an OR nurse and I have seen what cancer and like diseases do to a person. I only pray for your daughters sake and my husband alike that they can enjoy the little things and know that while they walked this earth they were loved.

  9. Thank you for sharing. As with so many others, Lea, you and Mike are in my thoughts many times a day. In my daily meditation and always in my heart. Sending love and wishing I could do more. ❤️?

  10. I sit here in tears, my heart breaking for you, your family, and most of all, sweet Lea. I pray for her innocence to stay and be blissfully unaware of what her body is going through. I pray for a miracle for her every day. I pray for strength and comfort for you in every moment, and in your moments of weakness and sorrow, I pray God will bring you special moments with your Lea or surround you with others who can bring comfort or a shoulder to cry on. In your moments of solitude, focus on everything good and bright about Lea and make the most of every moment you can. I can’t imagine the body wrenching pain you are going through. Just know that you have so many praying for you and Lea. You’re not alone in this. ???

  11. Christa, I think of you and your family – as so many do- multiple times a day. Each time I do I imagine sweet Lea healthy and vibrant and all of you flooded with love. I pray for a miracle and send you all love…so much love.

  12. Christa

    I sit here hurting with you and know this is and will forever change your life. Your ability to share your story draws us in to be able to in some way share your burden. I ask God why and I get no answer except it isn’t that He doesn’t love us. He too knows suffering. Leslie and I want to give you lots of hugs and kisses. We remember you at the age of Lea and I am sure she is as sweet as you were then. We continue to pray with you and for you and your family.

  13. We met many moons ago at the BF Mothers group at Yale. Your oldest orders daughter is bit younger than my son. We later bumped into you at the ice rink when you were having a Birthday party for your oldest I believe. Through several mutual friends I have followed your difficult journey. So very sorry for what your family is going through. Prayers for strength, peace, patience and healing to you and your family.
    Becky

  14. My heart cries with you all.Just know that Amy and I are praying for Lea and all of you- my church is praying also.We pray many times a day and think of you all the time
    There are no words.XXOO

    1. My heart cries with you all.Just know that Amy and I are praying for Lea and all of you- my church is praying also.We pray many times a day and think of you all the time
      There are no words.XXOO

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