“But God Made me Perfect!”

“I’m four today. I can’t walk. Will I ever walk?

This was the first thing that Julianna said when she woke up on her fourth birthday. A few seconds after the words left her mouth, she changed the subject.

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August 2014. 4th birthday.

One of the most remarkable things about J is the way she accepts her physical condition. There is no self-pity, ever. She knows all about the things she can’t do; she just doesn’t feel bad about it.

I wish I could say that she learned this from me, but it’s quite the opposite. Today I am able to read her words with just wistfulness. When I actually heard those words almost one year ago, I was gutted.

When your child has an awful disease, your heart can be broken in a million different ways. There’s the pain of unrequited hope when she doesn’t defy the odds. You ache — sometimes physically — when they lose milestones. And if the incurable disease becomes terminal, there is despair. It is too much for the already fractured mother’s heart.

I have been in all those places, and I know that there will be more to come. For now, I’m in a better place. It doesn’t mean that I’m at total peace with our situation. I believe that there are some questions that cannot be answered on earth, and I still wrestle with the cruelty of it all.

The shift came gradually. As with most things related to J’s illness, I have found it best to follow her lead. She has the important things figured out. If she does not mourn for a life that she cannot have on this Earth, how can I dwell on the what-ifs or why-nots?

My time here with Julianna is limited, and there is so much more joy to experience. I am grateful that this is my focus now.

April 2015

J has watched “Beauty and the Beast” and now wants to role play.

J: Mom, be Gaston.

M: OK. Hi, I’m Gaston.

J: I’m four years old. I can talk but I can’t walk.

M: Oh well…. No one’s perfect.

J: But God made me perfect!

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July 2015. Our belle Julianna.

“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.

“Hark the Herald”

23 June 2015 (version of Facebook Post)

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Spring 2012. At her peak strength, J could stand well with one-hand support.

Regression is one of the cruelest aspects of Julianna’s disease. This bunny moment is bittersweet.  At one point, she was able to stand with assistance. No BiPAP or GJ tube here either. It’s very different today.
Tonight, I read Psalm 23 to her out of a children’s story Bible. The story explained that Psalms means “songs.” She asked me why I “talked a song.” I told her that reading a Psalm was like saying the words to a song. As an example, I recited the first verse of “Hark the Herald”, one of Julianna’s favorite song.
She did not approve. She shook her head, and said “No, let me show you.” She sang the first verse of “Hark the Herald” to me, BiPAP and all. Afterwards, she said she needed to rest her voice and asked me to hug her. She closed her eyes, and I thought for a moment that she was going to fall asleep. Unusual, because sleep doesn’t come easily for our girl. She opened her eyes after a few minutes and declared her voice “rested.” Then she was asleep.
Another lifetime ago, she was able to sing all three verses of the song.  This life is different. Singing just one verse took a lot out of her, but she did it. She knows that some songs simply have to be sung.

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Dec 2013. Christmas photo. Image by Jennifer Rilatos Photography

“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.