Thursday, February 28, 2013

A very wonderful day, complete with a wagon ride

Today Cora was evaluated by a physical therapist. I was so proud of her! She showed off all her wonderful baby behaviors, like making great eye contact, tracking people, voices and toys. She smiled at me and cooed at the right time. The PT said she is right on track for social interactions, and just a few weeks behind on her movement and coordination. What a clever and talented girl! To have spent so much of her life in a hospital crib, so much time sick and sedated or intubated, and to still keep up with most of the normal baby milestones. I could not have been more proud of her if she'd gotten into Harvard! It may not sound like much, but it was a great moment in a long series of really pathetically terrible ones.

The next wonderful moment happened when Jason got to take Cora on a "field trip," which consisted of a wagon ride through the CVICU unit. I asked this morning during rounds if we could take Cora for an adventure, and although they kind of laughed at me, they eventually said yes. That to start with, we could walk around the unit, and then maybe at some point even outside the unit. This makes me so incredibly happy.

I had to leave to get the other kids, but Jason led the walk with Cora in a red wagon. He said she looked around with curiosity as they strolled through the halls, and then they stopped by a window to soak in the sun. It was a beautiful warm day. A little girl, another patient, even came out of her room to see Cora. I feel so rich and grateful that she got this experience today.

Meanwhile on the home front, Dominic and Cosette, my little antidepressants, did their part to make my day. As soon as I saw them, Cosie told me she loves me so much, and Dom gave me the bear hug of the century. After Cosie went to bed, Dom and I played Buzz Lightyear versus the Evil Emperor Zurg. Then we united forces against all the bad guy figurines and shot them with Nerf shooters until, one by one, they plummeted down to the carpet below. A perfect night where good was victorious.

As usual, Dominic baffles me with his deep intuition and understanding. While I was writing the first part of this blog entry tonight about being proud of Cora, he walked out of his room (where he was supposed to be sleeping) and asked, "mommy, are you proud of me?" I swear, he has proven to me so many times that he is an old soul, that when he says things like that I just smile.

I am so proud of him and his wise, sensitive and sweet natured little self. I am so proud of Cora and how each day she peacefully wins her fight. And I am so proud of Cosie and her fierce, beautiful nature. I love hearing what she has to say to me now that she's found language. Tonight it was, "Let's all drink pink sparkly water!" Yes, I say. Let's.

Because it was a very good day. Everyone was a little bit joyful. Everyone was safe. And I even got to see Jason for a few hours as we passed our kid batons, and went ahead trying to make this crazy life normal, and even happy.









15 comments:

  1. michele, i have tears running down my face as i'm reading your posts. tears of sadness for the heavy weight you all must carry. tears of beauty in your strength, in your weakness and in your honesty. and tears of happiness seeing cora in the wagon. (it seriously gives me this giddy feeling seeing her there, it's just so dang cute and must be so much fun for her!) sending you big hugs and all the strength i can muster for you to continue on this rocky journey.

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  2. So happy that you had a day that could be filled with sunshine smiles from your three amazing children and that you and Jason were able to share a few moments enjoying the strength of your love and the happy moments that occurred throughout the day. We loved seeing little Miss Cora being escorted
    by her Prince Charming in her royal carriage, fit for a Princess, enjoying her Royal Kingdom as all her admirers cheered her on. Thank you for sharing the special family moments of your day with us. Embracing Hugs and lots of love!

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  3. Omg! What a great post! I love it. I'm so happy to hear some good news. That is so great that Cora has some wheels now and I look forward to hearing about and seeing more Cora adventures! Also, so glad to hear about her physical therapy evaluation. We have known it all along, and now they know what a rock star she is, too! Thanks for making my morning. Xoxo

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  4. When Jay sent the photos of Cora's adventure to us yesterday afternoon - it was almost too much to be grateful for - the tears of joy for her, for you and for Jay flowed pretty easily. How could just a simple ride in a simple little wagon have so much impact on a family? Well, we haven't been able to take much for granted these days - that's how!
    To see Baby Cora looking around and taking it all in - was just so amazing. And to see Dada doing what any dad should be able to do at any given moment - was both joyful and hopeful.
    It was truly a wonderful way to celebrate Cora's physical therapy accomplishments! You go girl! We love you!

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  5. What a beautiful way to start the new month! How very special for Cora to get a good evaluation on her markers! She is truly amazing and strong to have spent her time mostly in a hospital bed and still be able to interact. What a very special wagon ride!!! Be strong in your love for each other and for Cora, Dom, and Cosette! I can't wait to see Cora soon. Xoxo

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  6. A million thank yous for sharing your story and reminding me to spend more time with the important joys in life- wagon rides and buzz light year!! ♥♥♥♥

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  7. My heart just exploded with a nned and want to hug you all. I just love this post and the power of positive moments! Xoxo

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  8. Pink sparkly water! I could not love anything more!

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  9. Oh happy day! A beautiful post.
    We're rooting for you, Cora, and your whole team too!

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  10. Praying for you and little Cora still. She was the first person I thought of when I woke up this morning. Courage and Love to you, Michelle. Courage and Love. -Debbie Stewart

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  11. So glad you are savoring each precious and perfect moment. From our family to yours, we are sending our best wishes and hope.

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  12. I love her little wagon set up!!!! And look -- she does have some arm chubbles!!! I'm right there with you -- how wonderful that she is accomplishing so much in her social growth. How wonderful.

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  13. This is so beautiful. I just found you through Glennon's Facebook post and have been catching up on your blog. What a wonderful idea to take Cora for a ride!

    You are amazing parents. Not just in the moments when you conceive of adventures, play games, and cherish milestones, but also when you ache, when you struggle, and when you despair.

    Thank you for sharing your story, Cora's story, and your heart.

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  14. oh my goodness Cora is just so amazing and beautiful and adorable. I'm going to keep her and your family in my prayers and I hope that she grows bigger and stronger. She is so beautiful.
    Corriexxxxxx

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  15. So beautiful. I feel very connected to you and your children right now: I have a 2-year-old who is already wise and sensitive, a 1-year-old daughter who I'd also fiercely beautiful, and our 3rd on the way. Love to you all!

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