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remember her?

I remember the smile that shined so bright. Her nose would squish up and she would let out this laugh that would melt my soul.

I remember her wild free spirit that coincided with that wild curly hair of hers.

I remember when she didn’t know a stranger and had the most friendly personality of anyoneI know.

I remember the friendly, funny, smart, vivacious little girl that was once my daughter.

In a sense I mourn her. I miss her.

I see little glimpses of her occasionally.

When my head hits the pillow and I close my eyes at night, I pray that the little girl I once knew will come back to me. Like I will wake up and none of this will actually be real, it was just a terrible nightmare.

I got her ready forthe daddy/daughter dance she had so been looking forward to this past Friday. We put her dress on.  Laced up her hand made sparkly high tops that we glued each stone on, one by one. Put my headband on her angelic hair she found from my wedding. Added blush on the apples of her cheeks and gloss on her perfectly pouty lips. She was excited and anxious to have her big night with her dad.

I took her outside to take pictures in the beautiful evening light. As she twirled around the chiffon of her dress was light and airy and simple. What a perfect metaphor for how life used to be… As I took pictures she smiled with insecurity seeping through. I occasionally got a laugh or a giggle.

There was one particular picture of Ellie tossing her head back, laughing and it was that one particular picture that gave me hope. I saw a glimpse of Ellie’s spirit reignite. It gave me hope that not all is lost and that this time is just a season we are experiencing. Maybe she will always have PANDAS but I pray we get it under control so that glimmer of hope becomes real and that this nightmare is few and far between.

Our moment of hope happens this week. Ellie goes for her first iViG treatment. We are so grateful we have the opportunity to get her treatment, thanks to the generosity of so many friends and family. We hope that only one treatment is necessary but we really don’t know. I feel like I don’t know anything anymore really. All I do know, is I don’t want to remember her, I want my Ellie back and I will do every single thing in my power to make that a reality.

Here is to hoping and big smiles and giggles.

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  • March 10, 2017 - 3:23 am

    Monique Prato - I’ll be praying for you and Ellie. I hope the IVIG
    Treatment works! It worked within the 2nd day of treatment
    For us. Is is Amazing to hear your child say she is back.
    We just finished our 2nd treatment this weekend.
    And she is back again! We are heading to the beach for Spring Break!
    There is hope. Ellie will come back.
    And don’t be scared of IVIG. It’s been around so long.
    I do hope that she will be administered the high dose
    Which is 2 grams per kg of Ellie’s weight.
    Our doctor was going to do low dose, but I asked her to do high and she did, both times.
    I love the shirts I am going to get one for my daughter. She of course wanted-her name on it 🙂 she wants to wear it to school.
    You are very creative. It’s shows in every aspect of your life that you share.
    You have a true gift. Thanks for sharing your story. I have been wanting to do the same. But computers and me 😧
    Prayers 😇🙏🏻 God will bring your baby back!ReplyCancel

  • April 11, 2017 - 1:57 am

    Claire Garstka-Calhoun - Thank you for sharing. I too mourn for my son and I like e for those moments of the old Sam. They are so precious. Hold tight momma I believe with all my heart that’s God has got our babies in the plan of his hand.ReplyCancel

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