“There’s Treasure Everywhere”

I go treasure hunting these days.

It’s mostly on my laptop. I can spend hours bringing up old files and photos. They say that a messy desk is a sign of creativity. I agree, and extend that premise to my virtual desktop. I search and search, because I know there is more Julianna in there, more conversations, pictures, and stories. I’ve found some things, including entire blog posts I never published. They didn’t feel right before, but they make sense now. (I’ll share in due time.)

They are all treasures, these pictures and transcripts. They’re wonderful, amazing (in the true sense) and heartbreaking : truly bittersweet. Our whole journey with Julianna has been that way.

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This weekend, Steve and I had our ten year wedding anniversary.  We almost never make plans for these things. Too much expectation tends to disappoint, and we’ve also been a bit occupied. Now, we have more freedom. Unwanted freedom, but freedom nonetheless.

We decided to take an overnight trip to Oregon wine country. Most of me didn’t feel like doing it, but sometimes you override feelings. I’m so glad we did. She was everywhere.

There have been lots of things lately that seem strange, or by chance. Coincidences. And they keep happening.

On Julianna’s last good Sunday, she picked me a little sprig of lavender.

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I kept it in a shot glass (I know, I know – I can hear J’s admonishment too) and have been searching for the perfect little bud vase. I’ve been afraid that it would dry up and fall apart.

On our way back, we “happened” to pass by a lavender festival and I found this:

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Like she wanted, I’m keeping it in our room, and I will think of her always. 

Julianna’s last flower gift to me has a perfect home now. And if it falls apart, no big deal. J would say that it’s now playing with friends.

 

We also stopped at a favorite Thai restaurant. This was my rice:

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We’ve been there many times, and the rice has never come out like that.

 

When we got up to leave, I noticed this picture over our table:

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Pink! J especially liked it when there was a set: “mommy and baby.” 

Julianna’s favorite animal, in her favorite color. I don’t know how long this painting has been there because we usually sit at the same table and look at the same things. This time, I “happened” to pick a corner booth.

There was more.

  • It’s the height of travel season, and we only started planning about ten days ago. Everything was booked.  Just as I resigned myself to trying again next year, I “happened” to find a beautiful B&B with an opening.
  • Steve met the innkeeper first and told me that Julianna would like her glasses and shirt – can you guess why? She wore another pink shirt the next morning. I asked her if pink was her favorite color, and she looked puzzled. It’s not, and it wasn’t intentional. It just “happened.”
  • We stopped by a coffee shop, and there was a little table of sparkly jewelry. I browsed while Steve ordered coffee. After a few minutes, a kind woman approached me and introduced herself as “the jewelry lady.” She has a day job, but her passion is gems. She likes to hunt for bargains and pass them along. She wants to put sparkle in everyone’s life. Sound familiar?

There’s even more, but I’m stopping here because the post is getting long. Thanks for continuing to read, and for your encouragement.

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One more thing: I’m still not watching or reading the news, but I know there’s much pain and strife and darkness. The great German word Weltschmerz (“world pain” – feeling the world’s heaviness) comes to mind.

I have felt that sense of hopelessness before. Maybe that’s why I’ve unplugged from things I can’t change. It’s too complicated, too big, too much.

And then I think of a little girl who could barely leave her room. She needed a microphone to be heard, and she was more helpless than a newborn baby. She couldn’t do anything for herself…but she loved. In her tiny little universe, she loved, extravagantly and without limits. Her love changed lives.

Big changes can start with small acts, from people who have no outward signs of power. 

I can’t wait to see what she can do now.

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Love is a superpower. It makes bad guys good. — Julianna Snow, age 5

 

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. – Philippians 4:8

 

P.S Two more treasures.

  • J’s first daycare provider sent me these pictures.

 

  • A snippet of a conversation from Julie, her hospice volunteer. We call her “our angel.”
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J&J. Playing, with pretty things. 

J&J are playing. Out of the blue:

Julianna: Do you have angels? I do.

Julie: Yes, I think I do.

Julianna: Good. Let’s play!

“I Will Love You Forever”

We are coming to a strange anniversary.

One year ago, things fell apart. What happened next – a hospital-free year with Julianna – has been beautiful and unexpected.

These days, I try to live in the present. Frankly, there is a lot that I don’t want to remember. There’s something about anniversaries, though, that demands reflection.

I wrote this letter one year ago. Most of it is copied below (italics), with updates and commentary in blue.  

This anniversary, we are celebrating how far we have come. We cannot take any of this for granted.

28 October 2014

Dear Friends,

 You may or may not know that Julianna was hospitalized almost 3 weeks ago for another respiratory problem. She is better now and will come home tomorrow.

 In 2014, Julianna spent 66 days in the hospital. This was her third PICU admission in ten months. We tried so hard to keep her out of the hospital, but it seemed like nothing was working.

  It has been a really difficult year for us. We have been in survival mode for at least the last year and have thus been largely non-communicative – even with our closest friends and family. We need your support, though, so we wanted to start by letting you know what we are facing. 

For a long time, we kept everything to ourselves. It was too painful to put our reality into words. This e-mail was one of our first attempts at letting others in.

 Julianna turned 4 in August. She is a bright, kind, funny and amazing girl who happens to have an awful, debilitating neuromuscular disease. The worst part of her disease is that it affects her breathing and swallowing – these are the things that ultimately shorten lifespan in people with neuromuscular disease. 

I recognized these signs before anyone else. It’s the double-edged sword of being a physician and mother. I struggled mightily against this knowledge. I told myself that I was being paranoid — maybe J wasn’t getting better because I was too pessimistic. It was easier to blame myself than to admit that J’s disease was really, really bad.

 We have come to the awful realization that Julianna will not live as long as we want.

 It was devastating, getting to this point. Once acknowledged, there was new pain, but also freedom. When you’ve come to terms with your worst fear, it loses some of its power. I’m still afraid of what is to come, but it no longer paralyzes me. We are on borrowed time, and it can’t be wasted on fear.

We don’t know how much time we have with her – it could be months, it could be years.

 Still true. I didn’t think that we’d make it through the winter, and now we are facing our second. She is so fragile. But maybe we can do it again – God willing.

If you have been around Julianna, you know that she is one of those kids – her spirit is incredible and resilient, and she is wise beyond her years while being delightful and funny at the same time. She is exceptional. I have struggled with this as well – b/c it always seems that the children who face the most serious illnesses are also the most special. If I had my choice, she would be more ordinary – and we would be able to see her grow up.

I have come a long way in accepting what I cannot change. The same God who made Julianna bright and lovely also allowed her to have a cruel disease. I believe that children who are asked to endure serious illness are given strength that the rest of us cannot understand. They are special. I think it’s God’s way of saying “I’ve got this. Just follow her lead.” So I follow.

Things are complicated here. It’s not an easy time for us but we are trying to trust God. It’s the only way.

 Amen!

Please keep us in prayer.

Love,

Michelle and Steve

 Prayer has given us this beautiful year. When I wrote this letter, I could not have imagined that I’d still be sitting here tonight, by Julianna’s bed, waiting for her to fall asleep.

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Oct 2014 

Last night, I gave her one last hug as I tucked her in.

J: I will love you forever.

M: I will love you forever.

J: I will always be your baby.

M: And I will always be your mom.

J: Not when we die…

M: Yes, even when we die.

J: Mom, will you miss me when I die?

M: Oh, Julianna. I nod.

J: I don’t want you to be sad. I want to give you flowers so that you remember me.

M: Julianna – it could be a long time – you’ve done so well. Do you worry about dying?

J: Nods. Sometimes. I’m used to things here. I’m not used to dying.

M: Of course not. No one is. We only die once. Sweetie, I don’t want you to worry about it.

And we prayed. Prayed that she doesn’t ever get sick again, and that she won’t be afraid of anything. I thanked God for the joy that she brings and told Him how much we love her.

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June 2015. Photo by Aubrie LeGault, Capturing Grace Photography

I stayed there, kneeling by her bed until she fell asleep.

“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.