Eyelash Wishes

Christa Doran Uncategorized 35 Comments

Lea was curled up on our oversized khaki sofa, the place she had been for the majority of the past two weeks thanks to yet another unsuccessful steroid wean. Her head was nestled in my arm as two thick, black eyelashes sat on my index finger. You get two wishes Lea! One for each eyelash.

I wish Pippi Longstockings was real. 

Poof.

Lea as Pippi, 2015

And I wish for a long life with Momma.

Poof.

Here we are. Month eight plus two days. I still wonder how we got here. I still ask why me? Why us? Why her? Why, why why…

A few days later we are back in Naples. It’s only day one of our trip and I’m ready to come home. Part of me wonders if it was a mistake even coming here in the first place. My eyes are blurry with tears as I look out at the sea of seemingly perfect familes walking past us, smiling, skipping and laughing. I feel like I am being held under the water, struggling to find air and make sense of this. I can feel the envy mixed with anger building inside me. Lea is back at the table curled up in Mike’s arms in pain, she won’t eat, or play, or engage. Liv and I start to cry and so we decide to leave the table. We make a quick exit and start to walk hand-in-hand down the perfectly landscaped street, sundresses brushing the ground, tears running down our bronzed cheeks.

We find a bench to sit on, our matching brown eyes are now wet and locked in a worried gaze. I don’t know what to say to her. I struggle to find words to make sense of this to grown adults, never mind to my nine year old. I tell her that I know this is hard. And I know we don’t have answers. I assure her we will get through this, together. I tell her to pray to our mighty God for peace. I tell her we are going to be ok. As I say the words I struggle to believe them myself… but I tell her anyway.

Later that night I google the closest pediatric emergency room. Just in case. I am thankful for the two vodka drinks I had at dinner and Friends reruns all night long, as they help to slow my mind and allow me to sleep for a few interrupted hours.

Right now Lea is sleeping next to me, her pajamas from the night before are covered in chocolate ice cream, one of the few things that makes her happy these days.

We are supposed to be at a 7th birthday party for a friend. She tells me through tear filled eyes and gasps that she doesn’t want to go. When I ask her why, she tells me that all the other kids will be jumping in the bounce house and she will be sitting there. I join her sobs and gasps and we hug. For a long time.

Watching your child lose function and ability while simultaneously losing interest in life is extremely painful to say the least. Lea used to sparkle and shine, now it is rare to see her happy and enjoying life. I regularly wonder how she feels as I dress her and bathe her, help her go to the bathroom, help her walk, or carry her from place to place. She is dependent on us now. Her legs don’t want to work. Her speech is slurring and she sometimes drools. Her eyes are tired and lost, void of emotion or expression. Such a far cry from the independent firecracker she used to be, eyes full of joy, or rage, depending on the moment. I miss her. I miss our old life. I don’t want to do this anymore. I don’t want to face what I know is coming next. I want to quit. I want out.

We have another MRI on Wednesday in Boston, but I don’t need an MRI to tell me what is going on. I know in my heart the monster is back.

Part of me wants to live in this moment forever because it means Lea is with us. And another small part of me wants it to be what it will be. I know she is not happy and enjoying life. I know this is no way for a six year old to live, watching life go on around you, unable to participate as you once could.

That part is painful. For all of us. Right after I was told my child was going to die, I walked out into the Yale hallway to people laughing, lunching, and sharing stories. My world is being ripped apart, and yet life goes on.

If only her eyelash wishes would come true.

Comments 35

  1. When prayers aren’t enough and love ❤️ is not enough. Try to remember to breathe. I was with a dear friend right after her daughter passed and as we drove down the street and people were talking & laughing – she said the same words you said here “my world was just ripped apart” and yet people are still living and don’t know this hell. It’s ten years and she’s ok now. I won’t tell you we still don’t cry, because it’s the hardest times. I wish I could hug you and that would help, but I know it won’t. Try to remember to breathe. Your sweet girl is beautiful

  2. I can’t even begin to imagine your pain but I want you to know my husband & I pray for Lea & your entire family every day! We pray for God to give you the strength you desperately need to endure this unimaginable horror! May God bless all of you??

  3. Sending so much love and hugs to you and your family. You and your honesty and bravery are an inspiration, Christa.

  4. So heart-breaking, so achingly hard for Lea and all of you! Hold tight to the love that so many of us, including Dexter and I keep sending…

    Love, hugs, and oh so many prayers,
    Barbara

  5. May GOD continue to bless you and your family! Your journey, your words, your story, your life reaches so many people. Prayers to you and your family and friends????

  6. Thank you for so vulnerably and honestly sharing your life. I read these every so often and they remind me never to take my children for granted, even when they are throwing tantrums and I have had a long day. I think I hug them tighter because I know there are others who wish they always could. I can’t imagine this pain. We’ll keep praying for your baby girl.

  7. My heart is breaking for all of you…I remember when Mike and Margaret, my brother and I were Lea’s age and my heart breaks even more that she cannot experience the simple joys we did – well, except for chocolate ice cream. May she continue to find joy through the pain until her pain is no longer. May God bless you all.

  8. Michael and Christa: My rosary group that meets weekly is holding Lea and all of your family up in prayer! I hope you feel our embrace! Love to you!

  9. Lea and your family are still in my thoughts and prayers . My heart breaks for you all . Having gone thru a similar situation I know how you feel . ??❤️

  10. Sending you and Lea my wishes for peace and comfort and days surrounded by the love of dear family and friends. Lean on them all and use their strength to help support you.

  11. Thinking of you all and sending hugs in the hope that you will get the strength you need to go through this very difficult time xxx Love to all, Christa you are an amazing person and mother. Mike, all my love….

  12. Christa, my prayer warriors and I continue to pray for Lea’s miracle. Her pain touches me deeply. Thank you for being transparent with all of us. I know what you share is touching and helping so many other people. I love you.

  13. Christa! Hey it’s Kathy’s cousin Kelly, she shared your blog with me. We have been praying for you guys. Your post reminded me of my favorite poem, I hope it brings you any bit of peace today.

    BREATHING UNDER WATER
    I built my house by the sea.
    Not on the sands, mind you;
    not on the shifting sand.
    And I built it of rock.
    A strong house
    by a strong sea.
    And we got well acquainted, the sea and I.
    Good neighbors.
    Not that we spoke much.
    We met in silences.
    Respectful, keeping our distance,
    but looking our thoughts across the fence of sand.
    Always, the fence of sand our barrier,
    always, the sand between.
    And then one day,
    – and I still don’t know how it happened –
    the sea came.
    Without warning.
    Without welcome, even
    Not sudden and swift, but a shifting across the sand like wine,
    less like the flow of water than the flow of blood.
    Slow, but coming.
    Slow, but flowing like an open wound.
    And I thought of flight and I thought of drowning and I thought of death.
    And while I thought the sea crept higher, till it reached my door.
    And I knew, then, there was neither flight, not death, nor drowning.
    That when the sea comes calling, you stop being neighbors
    Well acquainted, friendly-at-a-distance neighbors
    And you give your house for a coral castle,
    And you learn to breathe underwater.

    (Carol Bieleck, R.S.C.J. from an unpublished work)

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