Better Together

J’s voice is less squeaky now, and she is her funny, spirited and bossy self. Other than a few changes (needing oxygen at night, increased BiPAP settings, difficulty breathing in certain positions), everything looks like it’s back to normal.

It’s not quite that way.

Everything is going well, but we’re all still on heightened alert.

Steve’s parents live five minutes away from us, but they are sleeping on our living room floor. We have all had too much experience trying to bring Julianna out of respiratory distress. It requires speed and coordinated effort, and it’s best not done alone.

These days, it just feels better to be with others. Homie is back now too. She spent Thanksgiving with us and went home less than a week ago. When J got sick over the weekend, I told her to think about coming back. I just couldn’t predict what would happen. She has been with us through every hospitalization, so she knew what I meant.

J’s recovery has exceeded every expectation, and part of me feels silly for making my mom come out again so soon. On the other hand, any time with loved ones is time well spent. I want her to be with J and hear the dollhouse stories first hand. I want her to see the light in Julianna’s eyes and laugh out loud at her outrageous declarations. I want for her to be a part of the group hugs that J requests so often. These are the moments we treasure: they are everything.

Yesterday’s moments:

J did her “happy dance” as soon she woke up.

 

J watched “Brave,” one of her favorite movies. (She calls Merida the “wild princess.)

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J and Merida. J used to dislike curly hair, but I think Merida changed her mind.

J: Mom, look!

I look up. It’s one of the naked butt scenes.

M: (mock modesty). Julianna, that’s sooo embarrassing!

J: I’m not embarrassed.

 

J decided that all of her ponies have special powers. The white one can make snow. The blue one makes water.

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And this purple one?

 

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This is Tylenol pony. She makes people feel better.

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11 thoughts on “Better Together

  1. Thank you for sharing your beautiful daughter with us! As a parent I just cannot imagine the feelings you must experience on a daily basis! I send prayers for God to give your family strength but most of all for God to perform a miracle on your sweet little girl! PRAYERS AND LOVE!!

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  2. Dear Michelle,

    I love reading your posts, and totally support your approach to Julianna’s wish to be home in her beautiful princess palace. You are doing this all as bravely as a person could. I hope that one benefit that comes from this journey is that more people realize and support the need for pediatric palliative and hospice care. Your voice, as a physician, will be heard a little differently. Lots of love and hugs to you, Julianna, Steve, Alex, and your whole family.

    May your Christmas be filled with love and peace,

    Marla Eglowstein, MD

    Albany, NY

    (retired perinatologist)

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  3. Hi, My mane is Becky Anderson and I teach at Washington Middle School in Albuquerque, New Mexico. My 8th grade class and I are following your blog. We are amazed at how brave Julianna is and how well she is doing. We would like to send her a doll but wonder if you would give us your address? We send you positive thoughts each day. ________________________________

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  4. Thankyou for sharing the update with us . I will pray for your family. Hope to see many more happy dances .I have send Rainbow for Juliana and Alex .

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