Dear friends,

Our sweet Julianna went to heaven today. I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together. I wanted more time, of course, and that’s where the sadness comes in. But she is free now. 

I will have more to say later. For now, this is what is in my heart.

Today, I just want the world to know that there was a girl named Julianna.

She was a bright light. An old and delightful soul.

She loved love, and “everyone except for bad guys.”

She was an unabashed princess and she elevated everyone around her. We were all kings, queens, princes and princesses by association.

She urged us to play, to really focus on just playing. She encouraged us to be our most colorful and fabulous self. (One of her last words to me: “What’s that?” to my gray sweater…)

Her mind was “always going.” It took us to a beautiful world without limits.

Her words were startling. Sometimes I thought that people wouldn’t believe the conversations I recorded. How could a five year old know those things? But if you spent any time with her, you knew.

She fought hard to be here, harder than I’ve seen anyone fight, with a body that was too frail for this world. She was so brave — and I hated that she had to be so brave. This last fight was not to be won by her body. It was tired, and it needed to rest. And when it did, she was comfortable.

Today, she is free. Our sweet Julianna is finally free.

Please do not forget her. She lived, she was real, and she mattered.

I cannot believe that she’s gone. Already, I worry that some of her has faded, and I need to remember all of her. The way her warm little hands felt, the hugs she would give by asking you to drape her arm around your neck. The kisses she blew. They never ran out.

Please remember our precious girl: she was Julianna.

 

Julianna Yuri Snow

25 August 2010 – 14 June 2016

 

Feature photo and photo on right by Audrie LeGault.

Last night, CMT reared its cruel and hideous head again.

It came out of nowhere, body aches, fever, then aspiration. The night was fitful, and we struggled to keep her comfortable. We are still trying, but the antibiotics and pain medicines haven’t made the difference, not yet.

It wasn’t supposed to be this way. She had a good week, and it was a perfect, glorious 70 degree Sunday. We colored some hair (on her Barbie head) and did some projects (flower crafts). We took a stroll in our neighborhood, and she picked me this flower.

She always does this – every single time she goes outside (and it’s not a lot), she insists on picking a flower for mommy. She tells me to put it in water and in my bedroom and “think of me.” As if I could think of anything else.

And today was supposed to be different. For weeks, she has been planning a tea party with her kindergarten class. It’s the last week of school, and Julianna hasn’t seen them in person since the fall. She had her hairstyle, dress and teacup picked out. It was supposed to be today.

Julianna reminded us of this last night. Even as she told me that it was hard to breathe, she talked about her hair and her dress, and how she had to go to the tea party and use her cup.

And we were determined to do it. To hell with safety and — whatever we’re trying to preserve. If she wants a tea party, she gets a tea party. We’d make it happen. Only we couldn’t. She took another turn in the morning – more fever, perhaps another aspiration – and even she agreed that she shouldn’t go to the tea party today.

And here we are, at home. She’s asleep, but not comfortable. We wait, we pray, we watch and we plead. Comfort, please, for our Julianna.

 

PS — Julianna was in rare form last night. Even though she was struggling, she was funny, decisive and spirited. She schooled me on the correct way to hold her cough assist mask and declared that I was still “in training” – but she forgave me. When she wanted ice, she said “Ice, Ice Bebe.” (Bebe is the name of her former favorite – and most scary – doll).

 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?  Can any one of you by worrying add a single hour to your life[a]?

— Matthew 6:26-27

For a long time, I thought that this verse (highly cited as an answer for those who worry) made no sense.

Nothing manmade approaches the beauty of a sunset, and human ingenuity seems crude compared to just about anything God designed. I know all that. But here’s the part that terrifies me: nature is brutal.

The natural world is wild and unpredictable. Impossibly graceful gazelles romp in the savannah – but also get eaten by lions. Baby birds somehow learn to fly, but what happens to the ones that can’t? It’s the circle of life, survival of the fittest: this means there’s as much death as there is birth.

When your child has a serious illness, brutal, wild and unpredictable is not acceptable. You are looking for a cure, a guarantee. Above all else, you want safety. It goes against nature to outlive your child, but…sometimes it’s exactly what happens. In nature.

There’s so much I don’t know about God and this world, about sickness and healing. There is profound beauty in this world, but it’s so messed up.

I believe that God can do anything, but I know that He doesn’t always grant physical healing. I don’t know why, and I don’t expect to find out – not in this world.

This is what I do know: Julianna is a magnificent child, a bright light. God made her this way, and she is blessed. Like the beauty of the lilies in the field, this cannot be denied.

It’s hard for me to reconcile all of this, and I think that’s OK. The pain and the wonder are all mixed together, and I don’t think that it can be any other way, not now.

One day, I won’t have to worry anymore. Until then, I cling to the little miracles that surround us,  the sunsets and laughter and kindness. They are reminders that the best is yet to come.

If we find ourselves with a desire that nothing in this world can satisfy, the most probable explanation is that we were made for another world. — C.S. Lewis

 

This week,

We had a conversation that illustrates perfectly the wonder, joy, heartbreak and laughter that Julianna brings us — every single day.

J: Why was I born with CMT?

M: Oh Julianna…I don’t know.

Silence. I often tell her I wish that we could switch places, but I stayed quiet this time. 

J: I don’t want to switch places. I want you to walk.

M: Oh, Julianna. But if we could, I would do it in an instant. I’d rather you walk.

J: You’re important too.

M: But you’re my daughter. If I could somehow let you walk, it’d make me so happy. But I can’t, so maybe it’s silly to even talk about it.

J: But what about your patients?

M: What about them?

J: You wouldn’t be able to see them.

M: Maybe not. But it would be OK.

J: Then your boss would fire you. And I don’t want to lose my princess room!

Later…

J: What does “fire” mean?

Life isn’t for the faint of heart around here.

Last Friday was awful. We truly did not know where things were going.

J’s overnight recovery was miraculous. She is back to being the vibrant, cheerful, outrageous ,five-going-on-sixteen-going-on-ninety year-old that we know and love. What a relief!

Earlier today, as I was thinking about all of this this, and about what a difference a week makes, it happened again. Another twist: her new feeding tube stopped flushing.

As I gathered up the supplies to help Steve troubleshoot, my mind raced and wailed: You’ve got to be kidding me. We can’t do this again. Why now?? It’s only been a week…

We tried flushing with soda, hoping it’d break up whatever was blocking the tube. Please let it work, please let it work…No luck. This is not good….

Julianna, displaying her usual and perfect situational awareness, tried to take charge:

J: Text K, (our hospice nurse) – tell her everything!  Translation: This is not amateur hour, folks.

We told J to hold on while we did one more thing. I rolled her onto her side as we prepared to try a warm water flush, and SUCCESS! It flushed, and our few moments of terror were over.

It took a lot longer for my nerves to recover, and even as I write this, I’m still in partial fight or flight. We just never know what will happen around here.

Julianna’s life hangs by a thread. I like to imagine it a brilliant, sparkling, pink gossamer thread with a core of steel, but the reality is far less glamorous.

The ugly truth is that she is dependent on machines for vital functions. Things here hang not by threads, but by tubes made of rubber and plastic. And even with the best and most vigilant care, machines and tubes fail.

It’s like that for all of us, really. Those blessed with good health may never know what it’s like to need a machine to breathe, but we are all eventually confronted with the fragility of life. The difference can come down to an extra fraction of a second in the passing lane or a micro-deletion on a gene: we are all hanging by a thread.

Knowledge like this can fill us with fear and paralyze. It can also lead to more humility and more appreciation. Sometimes it does all of this – all in the same evening.

Hold on to the sweet and the good.

This week:

Julianna bloomed:

 

And played hide and seek:

And tried a new look — Princess Rock Star Bunny:

And, in case clarification is needed on my “five going on sixteen going on ninety” characterization:

J: When I’m 13, I will be a teenager?

M: Yes.

J: Will I be annoying?

M: I don’t know. Will you?

J: I think I’ll be a little annoying, but not as annoying as a regular teenager.

M: Why?

J: Because, you know, I’m, like, a princess.

The roller coaster continues.

Julianna has a tricky stomach. It’s the best way I know to describe it, because there’s really no medical terminology or explanation for the retching that has plagued us.

We took J home on Thursday. On Friday, she woke up and her stomach was not happy. She needed suction every minute and felt the urge to throw up almost constantly. It took three people to tend to her needs.

On Friday afternoon, it finally happened. She retched and aspirated – badly.

I have seen my daughter struggle to breathe many times, and it never gets any easier.

Through it all, Julianna was Julianna: brave, insightful, a great communicator.

J: Why did this day have to come? This isn’t enough to bring me to the hospital.

M: No – we’re not going back. No hospital.

J: And no NT.

M: I promise. No NT suction ever again. (NT=naso-tracheal suction – going through the nose to suction the throat and trachea)

J: nods. Can you put Cinderella’s carriage on my table? (J got lots of toy rewards for her hospital ordeal. She likes to make sure that her new toys feel welcome. She wasn’t about to let us to put them just anywhere.)

We got her through this mini-emergency, but the rest of Friday and most of Saturday was dicey. She slept restlessly. She needed a lot of oxygen, and her heart rate told me that she wasn’t comfortable. She went through periods of needing constant suction. She had a few more retching episodes, but luckily we were able to catch them in time so that there were no more aspirations.

And Julianna was still Julianna.

J: Mom, why did you cry yesterday? (Like I said, it’s not easy to watch your child struggle for breath.)

M: I just couldn’t help it, Julianna. I’m sorry.

J: Why did you look up?

M: I don’t know – it just ended up that way.

J: Were you looking to heaven and God?

Her bravery brings me to tears, but her spirit makes me laugh. After another dramatic retching episode, three of us stood around her bed, relieved to have dodged another aspiration.

J: Well, don’t just stand there looking at me!

On Saturday, J fell asleep before 7PM. I can’t remember the last time this happened, and I braced myself for a 2A wakeup.

It didn’t happen. J slept – solidly and quietly – until 8:30 the next morning. She woke up and the old Julianna back. Her eyes were rested and sparkling. The constant need for suction and feeling that she was going to throw up was gone.

I can’t explain it. It’s another miracle. We’ve had so many.

My mantra these days is “happy and comfortable.” Julianna has been through too much. Whatever happens, I want her to be happy and comfortable. Tonight, she is both.

 

New day, new haircut. Everything is better today.

 

Good news: The G-J went in just fine, and Julianna was a champ. No sedation needed. Our ambulance ride home was booked.

Bad: Twenty minutes before the scheduled departure, we became concerned about some of the fluids coming out of one of her tubes. The medical team was also concerned, and an X-ray was ordered.

Good: The X-ray showed that everything was in the right place. Second ambulance scheduled for later in the evening!

Bad: Twenty minutes before scheduled departure (again!) J started looking queasy. She retched and aspirated a little bit. Not going home today.

We hope that it was a tiny little aspiration. We hope that it happened because her system was a bit unsettled from recent events. We hope the tube works and that we can bring her home very soon.

We’re all disappointed. We’ve been through much worse, but it still stinks. I hate being confronted with her fragility.

So fragile. Our miracle.

The good news: J’s tube is working now.

The bad: it still needs to be changed out.

We weren’t able to get on the schedule for today, so the initial plan was to come into the hospital for IV fluids and wait for a spot tomorrow.

This was disappointing. J was tired, hungry and thirsty this morning. She told me exactly this much and actually fell asleep for a while. Very unusual for J.

We decided to test the tube again, and it’s been working. The nutrition helped J perk up a bit, and it bought us more time. We are now planning to stay home another night and go in tomorrow morning for the tube change.

A G-J tube is not a permanent solution for feeding. Sometimes it lasts just a few days; sometimes it lasts months. In our case, it’s worked for 18 months. Miraculous.

They can be tricky to change out. It needs to be done by an interventional radiologist. Julianna will likely need some sedation, and this increases risk. Sometimes they are not able to get the tube back into the right place. I’ve always known that this was a possibility. In our case, there really are no other viable options for feeding: these are the stakes.

Julianna is doing pretty well, but I know she’s worried. We’ve promised her lots of big prizes for going through all of this, and her bag of friends is packed.

As for Steve and me, we are waiting. So much of this is beyond our control: scheduling, transportation, whether or not a second tube will work as well, how much sedation J will need. When the stakes are this high, it can be terrifying.

None of us really have control, not of the things that really matter. Sometimes you learn this through a long, hard, painful process. Sometimes it comes in an instant, and things are never the same again. It’s not comfortable, knowing you don’t have control, but it’s the human condition. Things in this world are not what they are supposed to be.

Today, we just wait. God’s love for Julianna is undeniable, so we trust too.

We feel the strength of your prayers and good wishes. Thank you for each and every one.

UPDATE: Change of plan – we are going in tonight so that we can be officially on the schedule for tomorrow. Like I said, the schedule is out of our hands. Haven’t broken the news to J yet…