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.

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

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.
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.
That sounds like a priceless and unforgetable
experience for all especially Julianna. Very
grateful and happy for you all.
God Bless Julianna, her immediate family and
her extended family. I seriously hope there will be many more shared holidays,
Valentino
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Another awesome post that speaks truth to us all! Thank you for sharing these blessings and joyful moments with us. Sometimes, it’s hard to have a thankful heart when we are so distracted by the busyness of the season. Julianna and her family once again remind us of the true gifts in life and the real meaning of joy.
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Thank you so much for sharing your family Thanksgiving story! Sounds like a great (and exhausting) time! How wonderful is it that everyone came to you? Awesome. Loved J’s photos with the babies, too.
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Oh, and the uncles getting their nails done? Perfection!
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Thank you for taking the time to share with us “out here”. May you have a blessed Holiday season!
God Bless You
Lyna
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Thanks so much for sharing. It’s good to see you thankful.
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Exactly. WHY!! would anyone be sad that after too much time with too many people (30 is a LOT), fun as it might have been, people are leaving? I call that breathing space, #finally.
In other news, because I was a complete dodo (sorry A & J .. you may Stinkeye me now J), I forgot that the post office was closed over the weekends (I can’t just mail it cos I haven’t weighed, need the post office to weigh for postage+put the airmail stamp) so haha couldn’t mail the stuff yesterday & will do so today!
I’m really excited so I hope they are too! Looks like Thanksgiving was fab 🙂 We don’t do Thanksgiving here in Singapore but well, Kindle & Amazon & online Black Friday deals suffice for me. Hahaha 🙂
xx
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How I’ve enjoyed following your posts. So lovely that STL came to you this year.
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How beautiful her a prayer for her to everyday.
PRAYER OF FAITH AND HEALLING
I’m the body of Christ. I am redeemed from the curse, because Jesus bora my sickness and carried my disease in his own body. by his stripes I am healed. I forbid any sicknesses or disease to operate in my body. In the name of Jesus Christ of Nazareth. Every organ, every tissue of my body functions in the perfection in which GOD created
them to function. I honor GOD and bring glory to him in my body. (Galatians 3:13) (Matthew 8:17) (1 Peter2:24) (1 Corinthians 6:20)
I have the mind of Christ and hold the thoughts, feeling and purposes of his heart (1 Corinthians 2:16)
But without faith it is impossible to please to him for he that cometh to GOD must believe that he is , and that he is rewarded of them that diligently seek him. ( Hebrews 11:6)
For we walk by faith not my by sight (2 Corinthians 5:7 ) Read Mark 11:23)
You have to believe for her healing and give GOD thanks and Praise everyday for healing her. thank GOD for healing Julianna say everyday in believe.
I will keep her in my prayer GOD Bless You,
Sister Darlene [ð] [ð]
________________________________
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How wonderful that you let them come … it was a blessing all the way round for everybody
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Your family is beautiful and wonderful! What a tremendous blessing to have their support and love. I am moved to tears seeing these pictures of love! God’s greatest blessings to you and yours!
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This was beautiful and amazing! My favorite part was seeing the photos of J and the babies. Oh, how adorable! So glad she and you all had such an amazing visit. That’s what life is all about!!
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Thank you for opening your lives to such beautiful and meaningful sharing. I am not a member of your earthly family but I am a member of your heart family. J’s joy is such a blessing on my heart as are you. You are all in my prayers
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Love the strength in your family. You are Blessed! Julianna and your family are in my thoughts and prayers always. Julianna is loved by many and has touched so many hearts, like mine.
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This post brought tears to my eyes… beautiful to have so much love surrounding you and your precious family. I am keeping Julianna and all of you in my prayers and in my heart.
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Thank you so very much for sharing these special times. It is a wonderful journey to see your family of angels celebrate the most special of all! Many love and prayers to you all, and especially, of course, Princess J.!
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What Julianna is doing is truly LIVING. And what amazing parents you are to follow her lead, revel in her joys of “dress up” (she makes a beautiful princess and outfitting her baby cousin in the tiara was priceless) and create opportunities to engage her incredibly creative mind. Kudos alsoto the uncles for the “mani” experience!
Thank you for sharing Julianna with the world.
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