Happy, Bold, Confident, Commanding

In an e-mail to her friends, my mom had the perfect description for Julianna: she is “happy, bold, confident and commanding.”

HAPPY:

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May 2011. Happy, bald and beautiful.

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Winter 2014. She makes me so happy.

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June 2015. Alex has always been able to make her laugh. (Photo by Aubrie LeGault, Capturing Grace Photography)

BOLD:

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2014 – one of her hospitalizations. I swear, I don’t know where she learned to flirt.

Oct 2014: — To a male PICU nurse:

J: You are very handsome.

CONFIDENT:

7 June 2015 – (recorded in an e-mail to friends)

J learns that she is going to meet a new nurse soon.

J: Make sure you tell her about me

M: Ok – what’s the most important thing I should tell her?

J: I’m funny.

M: Uh huh.

J: Cute. Smart. Gorgeous

M: OK…

J: My eyes look like almonds. I’m honest. One day, I realized I like straight hair.

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Summer 2015. Almonds. (Photo by Aubrie LeGault, Capturing Grace Photography)

COMMANDING:

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Summer 2011.

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Summer 2015. Leg exercises.

Steve exercises J’s legs during body breaks. The TV is usually on. Whenever Steve pauses and looks at the TV, J says:

J: Dad, Dad, exercise!

And if he looks away again,

J: Dad, focus what you’re doing!

“Mom, Who Will Marry Me?”

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July 2012. J calls this “my wedding dress.”

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July 2012. A&J were the ring boy and flower girl in my cousin’s wedding.

Bedtime conversation, 25 July 2015

J: Mom, who will marry me?

M: Julianna, you are four.

J: I’m pretending!

M: OK. Um, how about Kristoff? Is he OK?

J: Mom, come on. I’m not in Arendelle.

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Winter 2014. Not in Arendelle.

“Don’t Worry. God Will Take Care of Me”

June 2015. Forehead to forehead. One of my favorite nighttime rituals. (Image by Aubrie LeGault, Capturing Grace Photography.)

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March 2014, Woodland Tulip Festival. It’s hard to believe, but heaven will be even more beautiful.

Sleeping is not Julianna’s forte. Bedtime is 8 but she rarely falls asleep before 9:45. She has very little movement below the shoulders now, so someone sits at her bedside until she drifts off. Steve and I are supposed to take turns, but I volunteer for most of the nights. I know that my time on this earth with Julianna will be far shorter than I want, so these hours are a luxury.

She needs me to take care of all of her physical needs. I turn her, suction the saliva that she cannot swallow and I keep her clean. She also needs me to engage her mind. It is always active, and she needs to share.

Her physical body is profoundly weak, but, verbally, she is like an elite gymnast. Her words are rich and precise. She uses them to entertain, engage and to show her love. Above all, she wants to be understood. This is harder now. Her disease has also taken away volume and enunciation, but those who invest the time and effort are rewarded abundantly.

Her words about heaven  prompted me to submit a story to The Mighty, a site that features many touching stories about people living with disease and disability.  Before this, my only attempt at mass communication was the occasional group e-mail. Sharing this story was way out of my comfort zone, but I felt that I needed to share Julianna with the world.

The conversation posted on the Mighty occurred in May 2015, and it was not the first time we talked about heaven. The original heaven conversation took place several months earlier. I remember being overwhelmed by hearing my four-year-old daughter speak about her wish to go to heaven. I thought I was so stunned that I didn’t write it down. (This is how I documented it in my second story for the Mighty, “How Our Daughter Helps Us Face Our Greatest Fear” .)

Happily, this is not the case. As I went through my e-mails in preparation to start this blog, I found the conversation that started everything. It was all in an e-mail.

9 Feb 2015 – e-mail to my mom

Today was a little hard b/c J needed BiPAP so much. And she was upset for the first time in a while – it didn’t last that long, but it’s hard for me to see her upset at all. She said she was upset b/c George licked her foot (he has a rough tongue)… She was OK and playful after she got over everything.

Yesterday we read the heaven book. I’ve been wondering about our plan to take her to the hospital if she gets sick again – b/c it’s even harder now to imagine her suffering. So I decided to ask her. Her answers were fast and clear.

Me: Julianna, if you get sick again, do you want to go to the hospital again or stay home?

J: not the hospital

M: Even if that means that you will go to heaven if you stay home?

J: Yes

M: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.

J: Don’t worry. God will take care of me.

M: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.

J: I understand.

M: (crying) – I’m sorry, Julianna. I know you don’t like it when I cry. It’s just that I will miss you so much.

J: That’s OK. God will take care of me. He’s in my heart.