Tuesday, October 1, 2013

One. And again.

One.  Already.  How did so much love fit inside a single year?  

She has come so far, and yet, it is the very beginning. 

One.  The bullets:

Love.  Like a freight train.

NICU.  Missing her.  Always.  


Feeding tube out.  Her beautiful face.

Sleeplessness.  Like the apocalypse.  

Feeding her.  The struggle. 

Sister cuddles.  Epic.

Her smile.  Like a sunrise.

Hospitalization for RSV.  My new grey hairs.

The first surgery.  Her pain.

Her healing.  Our settled life.

Her new smile.  The sun rises again.

Spring.  She's mobile!

Summer.  Like a dream.

Fall.  Her coming out: she's a person!  

And she is her very own little person - as she lets us know many times a day.  Lucy is sunshine.  As in, a great big ball of fire.  If you need a warm up all you have to do is get near her.  She is as fierce as she is sweet.  As clever as she is intense.  She is determined and feisty, and she loves to make us laugh, or clap our hands.  It doesn't take much to get her to cheer for herself, she's always at the ready.

Lucy understands far more than she can express.  This is a point of great frustration for her.  In nanoseconds she pixilates from sweet baby girl to CAVE BABY.  Cave baby has two speeds.  CAVE BABY MAD and CAVE BABY MADDER!  Our eardrums quiver before CAVE BABY as we gently encourage some signs or simple words, but the only sign CAVE BABY uses is a furiously exasperated wave of her angry hand to signify ALL DONE/MORE/NOT THAT/SOMETHING ELSE/STOP IT/I DON'T WANT TO SEE YOUR FACE EVER AGAIN!  

We are working on it.     

At one, Lucy toddles around like nobody's business.  Often with her arms raised in a giant "V" for victory as her happy baby hands tell a story high above her silken head.  That's my favourite.  She knows just what a cow says and has a very authentic "moo!"  Her first word, after Mama! was her sister's name.  Making Soleil's heart soar and Daddy's heart drop just a little.  Her favourite subject by far is Grandpa.  She often decides it is high time for a visit from Grandpa and shakes the gate at the top of the stairs and calls his name expectantly.  It takes a rather lot to distract her from her post.  

Oh, Lucy.  My little big girl.  So big when she is making her big demands with her big voice.  So little with her tiny arm wrapped around my neck, cooing into my shoulder.  

I have to remind myself of how strong she is because I do not want to hand her over on Monday.  Again.  Our last surgery date was taken away, clearing space for a lovely summer.  And the new date is speeding toward us.  
Early Monday morning I will have to wake her and she will be insistent for her bottle and I won't be able to give it to her.  We will take her to the strange hospital with the strange people and the new smells and she will be so hungry.  Then soon I will be in the scrubs.  And from there I can't picture it.  She was so wee last time.  A bundle in the wrap on my chest.  I rocked and bounced her to sleep.  I held her as they gave her the gas.  I didn't have to hear her cry as I walked away.  I just held my breath and listened to the blood pounding in my head.  

This time they will close the cleft in her palate.  She will wake up to the disorientation of an anesthetic haze, to pain and distress and her new mouth.  The bone in her mouth will be exposed before new tissue regenerates.  She will be swollen and sore.  She will not know how to use this new mouth without practice.  And practice will be painful and confusing.  Poor Lulu.  

I am scared.  Ridiculously scared.  Unnecessarily scared.  Embarrassingly scared.  Somehow, I am more scared than last time.  She's my baby girl.  I'm scared.  Really, really scared.    


She is strong.  I am grateful we can do this for her.  But I am full of grief that we have to.  Thoughts of risk and complication... of pain and her distress sprout like weeds in my mind until any calm and positive perspective I have cultivated is strangled.  

She is so fresh from One.  Her big milestone.  I just want to put it off a little longer.  I just want it already behind us.  I just don't want to do it.

But just as she won't do this alone, neither will we.  We will be soaking up the love and support of our friends and family as we take these reluctant steps on this path we happened upon.  We are bracing ourselves for the big day, the dreaded empty ache in my arms as we wait the long wait.  And we are hopeful for a quick and uncomplicated recovery.  I am braced for 10 horrible days.  We can do that, right?  

Yes.  We can.  We can do whatever it will take.  

She makes it so worth it.   

Monday is coming quickly.  Please think of our girl this Monday morning.  Please fly your love straight to her so we can cradle her in it.  

If you would like to help me wait again, I would love that.  This time I will have access to more than the blog while we wait.  You can comment here or email or FB message us.  

Thank you.          



  1. I'm so scared too, for you!! It's terrible. I remember that feeling of resisting my instinct to feed my hungry baby, handing her over, shutting off a part of my brain that was telling me to grab her, stick her under my shirt, and RUN like hell. It's not easy. It takes so much of your courage!!

    Lucy is beautiful!! Is that a shimmer of red hair I see?? I'm amazed that so much time has passed since I came across a post your wrote while pregnant, a letter to Lucy as you awaited the unknown.

    You are an amazing woman. Write a book when you're through it all, would you?? I have something I want to mail your girlies...email me your address again? :)

  2. Wow you are such an amazing mom. All the love and all the hope and all the pain and all the heartache... You sum it up so well. I wish I had something to tell you that would keep your mind off the surgery, or make you laugh, or... anything. But all I can say is that I'm sending you all the good vibes I can - that surgery goes quickly and recovery is fast. And that you don't have to face any more after this. She is a beauty. And you are a wonderful mama. <3

  3. Sorry if this is inappropriate at all...but anytime I feel overwhelmed about life, parenting, humanity or spirituality I go directly to Louis CK for healing, guidance, reassurance and emotional strength.

  4. Wah! I'm sorry for all of you to have to go through this scary time. I will say some extra prayers for you guys and send wishes for extra strength, courage and healing in your direction. Probably last fall you could not have imagined the happy bliss of this past summer. But on your dark days this fall, perhaps those memories can give you solace and hope for the happy times that surely are coming for all of you in the months ahead. You'll have to try to imagine the virtual hugs I am sending you, and a relaxing back massage. I'm betting that by Halloween Lucy will be back on her feet and ready for some fun. So even though its a rough, sharp corner, you will get around it to better times soon. I know it can never be soon enough when you are in it. But I know you have a fantastic array of friends and family that are doing their best to ease your burden and worries. I will encourage you to imagine fast-forwarding to a happy, healed Lucy giggling with Ava about Christmassy things, or being a force to be reckoned with at the playground next spring. You WILL get there!

  5. I am thinking of you this morning and sending your precious girl healing love and energy and sending you support and courage and energy, too. Just keep breathing. Sometimes that's all we can do.

  6. As I lie in bed grounded by a head cold and listen to the cold, October downpour outside, I think of all of you. It is 6:39am where you are and I suspect you are on your way to the hospital or already there waiting for the call that it is Lucy's turn. And then the next wait begins. I wrote about it here last year during a very routine scope for our girl: http://www.whatiwouldtellyou.com/weblog/the-wait/
    Something for you to read and distract you while you wait. Each step gets you closer to the end of the dreaded upcoming ten days of healing. We will all be out here holding you in our thoughts and even if that seems useless, we'll do it anyway because it is all we can do from here. And , besides, I think positive energy and healing thoughts can travel through space and time and hopefully you will "feel" the love somehow. Love to all as you wait.

  7. My family is sending all of our prayers to you and your family today. We hope Lucy has an easy, speedy recovery. I am here if you need anything.

  8. This is so beautiful Danielle. You are such a loving mom. Your girls are so blessed. So glad they have you and you have them. Glad it is finished. All the best for these 10 days. This will all be so worth it. Your heart does not ache in vain. All love... Katie


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