Thanksgiving Moments

I grew up in St. Louis with one brother and four cousins (and appropriately attached aunts and uncles). We didn’t all live in the same house, but it often seemed like we did. It was the proverbial village: loving, loud, solid.

About fifteen years ago, my uncle decided that Thanksgiving would be The Family Holiday. No matter where we were (and we were all scattered by then), the cousins were all expected to come back home for Thanksgiving. With just a few exceptions (military deployment, pregnancy after 36 weeks), we all returned to St. Louis for Thanksgiving — every year.

The last time we spent Thanksgiving in St. Louis, Julianna was two. We had known about CMT for a few months, but it hadn’t yet declared itself as a lifespan-limiting disease. A few weeks after that last trip home, Julianna had her first hospitalization for respiratory failure.

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Thanksgiving 2013. Julianna is sitting on my aunt’s staircase. Sweater, crossbody and sunglasses by Hello Kitty.

We fought this beast of a disease with everything we had, but kept losing ground. Runny noses turned into ICU admissions, and she lost hard-earned motor skills. Worse still, she started needing more help with vital functions like breathing and eating. At some point, she became very medically complex and fragile. Travel became impossible, and we had a permanent and unwanted exemption from Thanksgiving in St. Louis.

This year, St. Louis Thanksgiving came to our house, and it was epic. More specifically, it was:

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Most of the cousins have married and procreated, so our Thanksgiving party numbered 25+. This is the frenzy that ensued during a photo op for all of the babies.

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And this is the reason for  all the fuss.

Involved very little cooking.

Thanksgivings in St. Louis are homemade. This one was a heat and serve affair but still delicious.

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We did make a few things. My nephew (pictured in the middle) loves baking cakes. Julianna and Alex were eager to help.

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This is how it turned out. They evidently subscribe to the “more is more” aesthetic. 

Baby Heaven for Julianna

If you ever want to see pure love, look into J’s eyes when there is a baby around. This weekend, she had these three cuties to adore.

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A Mini Princess Boot Camp

This weekend, Julianna got to meet her first and only girl cousin (also a J 🙂 ) for the first time. Julianna insisted on letting Baby J borrow her Princess things. To Julianna’s delight, Baby J was a natural.

Featured the  Man Mani

During a previous visit, Uncle E lost a bet and was supposed to get a manicure with J. We ran out of time, and Uncle E’s nails went unadorned. Julianna didn’t forget — she never does. This time, all of her uncles joined in. More delight for J.

Included a Halloween Redux

After reading my blog post about how J was not able to go trick-o-treating on Halloween, Uncle E had the brilliant idea of having another Halloween during Thanksgiving. It was a complete surprise for J.

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Elsa was obviously Julianna’s favorite character. True to form, she refused to name a favorite. She doesn’t want anyone to feel left out. 

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Unpredictable and a Little Bittersweet.

There is a tendency to advertise perfection, especially when it comes to the holidays. Nothing in this world is perfect, and our family and life circumstances are no exception.

Plans for spending Thanksgiving 2015 with us started over a year ago. When my family first asked about it, I wasn’t sure. Would we  feel like celebrating? Would we be in mourning? How would we protect Julianna from all the winter germs that our well-meaning family would surely bring from busy airports?

I have learned that control is mostly an illusion. We must try our best, of course, to protect the blessings we have been granted — but if our plans are obsessive and driven by fear, we can’t really live.

So we had our big fat Korean-American Thanksgiving in this medically fragile home. I made everyone get get flu and pertussis shots. (It made me feel better, and everyone was kind enough to comply.) As it turns out, all of our guests were fine, and Steve and I were the ones who ended up getting colds. I still worry, but  in the end, all we have are face masks, lots of Purell and the knowledge that we are all in God’s hands.

Thanksgiving 2015 was spectacular. It was all about making moments and truly living. All good things have to come to an end, though, and this is hard. I have never liked good-byes, and Alex seems to have taken after me. As our last guests prepared to leave, he attached himself to one of his uncles and said “Don’t go! Don’t go!”

We all gathered in Julianna’s room and said one last prayer. One of J’s uncle’s asked for strength for our family and thanked God for Julianna’s life and example. Throughout the prayer, Alex kept saying “Don’t go, don’t go!”  There were some tears and a bit of heightened emotion.

After we were done:

Julianna: What is Alex saying?

Me: “Don’t go.” He’s sad that everyone is leaving.

J: WHY???

And just like that, the mood lightened. She was right, of course. Thanksgiving 2015 was epic, but it’s intense having 30 people in your house and eating eight meals a day. Even crazy good can’t last forever.

We are sincerely grateful for everyone who has reached out to us. Your messages – via e-mails, Instagram, and letters have touched deeply. Julianna and Alex have enjoyed your stories and gifts.  I have wanted to respond individually to every single person who has reached out, but it hasn’t been possible. Please accept our sincere thanks. 

 

Hugs and Stink Eye: Julianna Live

When writer’s block hits, it’s time for live action! These are some of our favorite Julianna videos.

 

For a while, Julianna was able to walk short distances in a walker. This was taken on one of the first days she used the walker. She is about 18 months old — and confident! (Note: Sammy was my very first baby. She is in doggie heaven now.)

A child’s first steps are always special, no matter how they come. She hasn’t been able to use a walker for almost two years, and I couldn’t watch this clip for a while. Today, I’m just grateful that she was able to walk for a time. Some day, she will do much more.

 

I’m including this one because it just cracks us up. We did teach her to say “praise the Lord.” But the raising of the hands and the exuberance is all Julianna.

 

Alex is a fantastic big brother. But he doesn’t always want to hug his sister.

 

Julianna has a flair for drama (which is a nice way for saying she is dramatic.) I have always thought that she could be an actress. Last summer, she showed her range. My favorite is “stink eye.”

The Opposite of the Hospital

Make-A-Wish has a well-deserved reputation for making magic. It’s an organization that everyone feels good about supporting. If you think about it, though, no parent really wants their child to be eligible for this gift. To qualify, it means you are dealing with a life-threatening illness.

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1 of 66 days in the hospital in 2014. We tried to make the best of things, but there is nothing easy about being in the hospital.

One year ago, a social worker from Shriners asked if she could refer Julianna for a wish. I had mixed feelings. There was the expected: “Wow, how amazing!” and the unexpected (but rational in its own way): “Oh. I have a child who is eligible for Make-A-Wish. We are that family.”

I know it sounds ridiculous. It was already abundantly clear that J had a life-threatening disease. In fact, we just had made the agonizing decision of starting palliative care, but weren’t quite sure what it meant for us yet. One thing was certain: we wanted to focus on Julianna’s quality of life. It was the perfect time for a wish.

After your child gets accepted for a Make-A-Wish, a “wish coordinator” is assigned, and the planning begins. Many wishes involve travel, but for our fragile, increasingly-BiPAP dependent daughter, it was clear that her wish would need to be enjoyed at home. When our wish coordinator suggested a room makeover, J’s eyes lit up. The choice was easy: Julianna wished for a princess room – a pink and purple one with sparkle.

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Dec 2014. J picked out this outfit and asked me to send it to her wish coordinator to show that she was ready for a princess room.

It usually takes several months to plan and execute a wish. I honestly did not know if we had that much time. It was the middle of germ season, after all, and J had proved time and again that, in her, a runny nose meant impending respiratory failure. It was just a few weeks before Christmas, so I  understood that there would be delays. Our wish coordinator was quiet for a few moments after I voiced these concerns. She told me that everything could be ready in a few weeks.

From there, things went quickly. We decided on a theme (elegant princess, not Disney princess) and a color palette (cool pink and purple with silver accents). The talent and skill of the Snow side of the family came through in a big way.

Steve and Grandpa built floating shelves that looked like castle turrets.

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Jan 2015. Alex helped paint the shelves lavender.

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Designed and executed by Steve. No shortage of Hello Kitty in this house.

. Grandma, an expert seamstress, found a way to make J’s hospital bed beautiful.

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As for me, I did what I do best: online shopping. Every night, I spent hours at Julianna’s bedside researching chairs and chandeliers while coaxing her to sleep. I squashed my usual penchant towards utilitarian and discovered that there is life beyond Ikea. (It’s called upcycled French provincial, and it’s divine.) It was so much fun.

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All of J’s furniture came from a beautiful shop in West Linn, OR called Fleur’s Vintage Charm. The owner, Kathy, refinished each piece for us.

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This dresser was less expensive than Ikea and is infinitely more princess.

If this sounds frivolous, it was – a little bit. But here’s the most important point:  it was exactly what we needed after our year from hell. It was the opposite of the hospital,  the opposite of NT suction, end-of-life planning and ICU alarms. There was nothing sad or agonizing or overwhelming about any of it. As a family, we needed this — desperately.

On 10 January 2015, Julianna received her princess room.

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Before

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After

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Julianna had a special visitor: Princess Rebecca. (aka Miss Oregon 2014)

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We got Alex a royal costume so that he could join in on the fun. He was a good sport about it — for about an hour. What can we say? He is more ninja than prince.

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When Julianna first saw her room, she turned her wheelchair around and around and took it all in. This was one of the last times J was able to use her power wheelchair. Shortly afterwards, her hand strength declined and she could no longer use the controls.

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The opposite of the hospital

This is a letter I wrote to Make-A-Wish.

17 Jan 2015
Dear Make-a-Wish,
On January 10, 2014, our daughter Julianna was admitted to
Doernbecher Children’s hospital with a respiratory infection. She was
hospitalized for a total of four weeks, most of it in the ICU. During that
time, our hearts were broken in a thousand different ways. For many weeks, we did not know how things were going to turn out. Fortunately, she recovered and came home to us.

The last two years have been difficult in so many ways – she has had multiple hospital admissions and has become progressively weaker from a cruel neuromuscular disease that has no cure. The January 2014 hospital admission, however, stands out as our lowest, most desperate point.

On January 10, 2015, our Julianna was gifted with an amazing pink princess room with sparkles. It turned out even more beautiful than we imagined, and we do not think that the date was a coincidence. The whole experience with Make a Wish has been one of healing. Julianna has a stunning room that is
befitting a brave, vibrant and lovely princess who has fought many difficult
battles. It brings her joy every day.

We cannot thank you enough for making Julianna’s wish
possible. We are humbled and blessed by the dozens of people who gave their
time and talent and donations to give our family a magical experience.
THANK YOU!

I will add one more thing. When your child has a terminal illness, you don’t dream of things like high school graduations or weddings or baby showers. For families like ours, the Make-A-Wish experience can be that gorgeous celebration of life and love. You are free to plan and dream, and you don’t have to worry that you won’t see it come to fruition.

Julianna’s princess room is the most beautiful ICU-capable room I have ever seen. She loves it. Everything about our Make-A-Wish experience was perfect: it was the opposite of the hospital.

“OK, This is Getting Weird”

Julianna teaches us to not take things so seriously. It’s simple yet profound. And a lot of fun! Here are some examples.

Our daughter has a beautiful inside, but she’s also concerned about the outside. She loves fashion. In her world, fancy always trumps plain: she appreciates color, texture, embellishment and sparkle.

Note: She does give passes. I am allowed to wear my 10-year-old gray t-shirt if I’m not leaving the house. Steve and Alex are exempt from her sartorial demands:

J: I like boys the way they are. They’re handsome.

Every morning, I stop by Julianna’s room before I go to work for a wardrobe check.

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I walk into Julianna’s room. 

J: I approve!

M: Thank you, Julianna.

J: Your scarf makes your eyes sparkle!

M: Julianna, you say the nicest things. You make people feel good.

J: I love your eyes. They are beautiful

M: Thank you, J – I don’t think they are nearly as beautiful as yours, though

J: They are like mine. They’re brown.

M: Yes, they’re similar – you’re my daughter, after all.

We look into each others eyes for a while. So much love. 

J: Ok, this is getting weird.

As previously disclosed, Julianna is not patient. She likes to PLAY, and everything else (phones, treatments, conversation about logistics) is not worth her time. In this photo, J was having a “picnic”. Julianna has never been on an actual picnic, but she loves to pretend. Standard picnic fare for J includes marshmallows, strawberries and chocolate pudding and (sometimes) green beans. It’s cute, and we wanted to take a picture.

J: Dad, can you cross my arms?

Steve: Ok, why?

J: I am waiting for you to be done.

This is what happens when you ask J a leading question.

Feb 2015 — I am tucking J in for the night.

M: Do you want to say a prayer to God?

J: I love you, God

M: That’s nice.

J: He is nice to me.

M: How?

J: He gives good things with bad things.

M: Have you had bad things?

J: Yes.

M: What?

J: Poison.

M: What? You never had poison!

J:  But Snow White did…

24 Jan 2015 – conversation in the morning

J: If I was a warrior, I’d get rid of bad guys.

M: You’re not a warrior?

J: No, I’m just a little girl.

M: I think you’re a warrior. You’re brave and have fought a lot of things.

J: rolls her eyes. Oh my gosh!

Make a Moment

My husband of nearly ten years is all action and very little talk. This week, he had a lot to say, and it’s all important. 

This blog entry is a message that Steve posted on Facebook. 

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June 2015. Photo by Aubrie LeGault, Capturing Grace Photography

2 Nov 2015

First off, a heartfelt thanks and appreciation goes out to all of the incredible support we’ve received from friends, family, and perfect strangers. Now, to the reasons I’m breaking my usual silence:
Never, ever, in my life did I ever think I would be giving an interview to a CNN reporter. Let alone doing a follow-up taped interview to air very soon. Crazy…
What I have learned is that, while I do not find the general tenor of the media to be impartial, you really have to examine and judge the individual doing the reporting. So, when this individual, a medical correspondent, reached out to us, my wife Michelle (neurologist) examined her stories in detail. She struck us a person who does great research, writes well, and displays an unbiased presentation. My hats off to Elizabeth Cohen and her respectful treatment of my family’s journey. She started working with us in July, and our story just came out last week.

I realize that you can open quite a can of worms when you let someone into your home with a camera and bear your soul, pain, and suffering. I trust Elizabeth, even if she may not get final say on what is shown to the world.
For the record, I think my wife Michelle did awesome in the interview. I can’t say the same for myself. Let’s just say that my training to act calm and collected in the heat of battle (which requires disconnecting from my thoughts and emotions) was useless when I started talking about our daughter.
These interviews represent to us an opportunity to reach out to other families who are suffering through their loss, or staring at the imminent danger of losing their loved one; and of putting our trust and faith in God, just like we have with our daughter.

This is what we have learned:  this is our “Fact Sheet”:
1) You are not alone. Well before this story broke, I was surprised to learn how many people have gone through a similar situation.
2) Life really sucks sometimes.
3) It hurts, a lot.
4) Love is powerful, and rises above the pain in ways you may not even grasp yet.
5) Only you can make the right choice for your child
…but if you have questions, don’t be afraid to ask, and keep asking until you get a straight answer. What does this procedure entail, what are the risks? Just because something can be done doesn’t mean it should be done. Care conferences help. In the end though, the choice is yours. And sometimes you don’t have the luxury of time to explore all the options to the depth you need to. (Reference #2, #3, but most importantly #4. )
6) Only you can know the true depth and complexity of the issues at hand.
7) Make a moment (We learned this from our grief counselor. She has been working — playing, really — with J for the last several months.)

I want to expand on this last bullet. Making a moment means stepping away from the battle (to keep that person from dying) and simply enjoying something together. It is creating a moment in time that you can cherish, regardless of the outcome. Why? Love is Powerful.
Cliché but oh so true: stop and smell the roses. Hold their hand. Play a game. Read them a story. Make an art project. Go for a drive. It’s horribly easy to get so caught up in the daily battle, but if you never stop fighting and struggling, you may miss the beautiful person you are fighting for. And before you realize it, there are no more opportunities to be had.
I’m not saying this is easy. It’s been an entire year since we changed our battle plan against Julianna’s condition. We did it because we realized that the harder we tried to fix her through our own actions, the worse off we all were. Every day, I still have to remind myself to stop being so focused on basic care plan stuff and to make time for fun things that she enjoys. When she wants to look out the window at the city lights, or deer wandering through, or the stars, or the moon; I have to squash the task master in me, remind myself that a few minutes diverted is okay, and start reconfiguring her equipment for a trip to the window.
8) Lastly, if you really can’t break away from the routine, then try having some fun along the way. Try singing a favorite song while you work. Something different. Special.

——
If you’ve read this far, here’s a bit more to chew on.
When you’re stuck in basic care survival mode, you’re not really living, and it is draining. It may seem relatively easy at first, but it wears on you. You eventually cling to it. You don’t want to stray off the path lest that be the tipping point where you lose your loved one. Then you turn around and hate yourself for it. Or maybe hate someone else for not helping you prevent this situation. This is a horrible position to be in, but God forgives you/them. Many people have done far worse things and been forgiven those sins.
You have essentially been living not to die, instead of just living (living to love). It’s similar to a basketball team which plays not to lose, instead of playing to win, or even playing for the love of the game. They usually lose and then wonder what just happened. So, instead of playing not to lose, instead of staying locked in the battle of the present, take a moment to take a deep breath, step back from the situation, and accept that sometimes the deck is stacked against you. Maybe you’re not really in control like you thought you were. Maybe it’s time to start blowing bubbles in your drink, make a replica of the Parthenon out of your chips, and build a house of cards (which is what you had already established in life) so that you can blow it over with a simple breath. Take a moment. Show your love, not through some menial but necessary task, but something silly, or different, or tender, or recreate a moment you know they cherished before through word or picture or pantomine.
Make a moment.


During this moment, Julianna danced with her dad while Homie looked on. J is too legit to quit!!  

Truly Living Girl

About six months ago, I told Steve that I wanted to share Julianna with the world.

I had a hard time articulating my reasons and I didn’t have a plan. We are cautious parents and introverted by nature, so I questioned the wisdom of it all. To my surprise, Steve said “Why not?”

“Julianna is a bright light.” he said. “Maybe she has something to teach the world. “

A few weeks later, Julianna and I had a conversation about heaven. Its power gave me courage, and I wrote my first piece for the Mighty in May. We started planning a blog. I wanted to document more aspects of our story: the medical stuff, J’s fabulousness, her profound and funny words. I hoped that my friends and family, at least, would read it.

About six weeks later, I got a call from CNN — and this is probably why you are reading this post.

We had no idea it would get this big. Media outlets all over the world told our story – our long, complicated story – in a few paragraphs and asked people to weigh in on the “controversy.” Other groups started using Julianna (and her photos) as a symbol for things that have nothing to do with our story.

It was a bit overwhelming at first, and I felt like retreating. I shared my concerns with Steve, who was (as usual) calm and steady. Maybe our story went big for a reason. Maybe it will help other families who have loved ones with a terminal illness. Hopefully it will start thoughtful conversations about what is important and how we want to live out our final months – or decades. Perhaps there will be more awareness about Julianna’s devastating disease and we will get closer to a world without CMT.

So we are back to my original intent: let me introduce you to our Julianna.

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Oct 2015

The headlines call her the “Dying Girl.” We think she is the “Truly Living Girl.” If you want to know what it means to truly live, look into her eyes and read my stories. You will find no better teacher than this girl.

Last night, I had to tell her that she couldn’t go trick or treating. It was cold and rainy, and we just couldn’t risk it. I told her I was so sorry, and that she could still dress up and trick or treat in the house. For about five seconds, her beautiful eyes welled up with tears, and then it was done. She asked us to dress her up in her cowgirl costume, and we wheeled her around from room to room so that she could collect treats. She loved it.

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Halloween 2015. No bueno for our BiPAP dependent princess.

As I tucked her in, I told her I was sorry about not being able to go out for Halloween. I knew she was really disappointed. She dismissed, saying “It’s OK. I was just pretending.” And that was it.

A lot of people tell us that they don’t know how we do it. The only answer I can give is that we follow her lead. If J doesn’t feel sorry for herself for missing out on Halloween, how can I?

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Today. We got a break in the rain and J got to do some impromptu trick or treating. Thanks to our neighbors for the extended Halloween hours.

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Today. J and Homie and American Ninja Warrior Alex.

Our Julianna lives joyfully and loves generously. She is a bright light, a gift from God.

PS — We are overwhelmed and humbled by the hundreds of beautiful messages sent in by those who are touched by Julianna and our story. Your words, good wishes and prayers strengthen us. We cannot thank you enough.