Dear friends,
Thank you for your messages. Knowing that Julianna touched your life, reading your words and feeling our shared sorrow comforts us more than anything right now.
It doesn’t feel real yet. It feels bizarre, not doing the hundreds of little things that were required each day for the care and upkeep of our precious Julianna. Our house is full of people, but in some ways, it’s never been emptier or quieter. I miss her voice, the steady noise of the machines that helped her breathe. They were the heartbeat of our home.
We are busy now, planning a tea party for Julianna. It will be big, elegant, colorful, fun, whimsical, loving, bright, joyful, magnificent. The dress code: fabulous (but accepting. J had strong sartorial opinions, but she wanted everyone to feel comfortable.) We want to make her proud.
Summer 2014
Summer 2014
I have always known that the time right after someone passes is not the hardest part. We have so much to do, and reality has only sunk so far. The most painful grief will come later, in the months, years and decades to come. Please remember that. Reach out to those who are still grieving, and share a memory of their loved one.
We will find a way to share Julianna’s tea party in this space. For now, there is this, sent to me by twelve-year-old Aanyah Abdullah. We haven’t met, but she seems to me to be another old and wise soul. She has a heart for kids like Julianna.
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.
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).
J and Bebe – summer 2015
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
Sunrise
Sunset
And a promise.
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?
Photo by Charles Gullung.
