Music and Drama

Julianna has gotten over her cold, but there are some changes. Unfortunately, she still needs more respiratory support (higher BiPAP settings, nighttime oxygen).

She also needs a little more emotional support. These days, she doesn’t like to be without Steve or me, especially at night. I have always thought of her as the strongest spirit in the weakest of bodies, so it was a bit of a surprise. But is it really that surprising? Julianna is intelligent and intuitive, and the cold scared all of us. J knows what her body has done and how it feels now. How can she not feel its fragility? I wish that she did not have reason to worry, but I am glad that she is leaning on us for support.


Dec 2015, Capturing Grace Photography

In a way, Steve and I have been doing the same thing. By sharing our story (first with our family, and now with, well, anyone), we reveal our most painful vulnerability. We didn’t start sharing to gain support, but we have received it. It’s been an unexpected and beautiful development.

Neither Steve nor I are particularly good at receiving things, whether they are compliments, gifts or people’s time. We never want people to go to any trouble and we like to think that we’re self-sufficient.

Independence is a good thing, but let’s get real: parents aren’t meant to outlive their kids, and we can’t go through this journey alone.  We need to talk about the things that are hard to admit (like how scary the winter still is for us, especially the month of January) and we need to lean on others. This doesn’t make us weak:  it makes us human. Just like Julianna.

Christmas is about a gift that was freely given. We can’t earn this gift, but we do have to receive it. And to receive it, we have to admit that we can’t make it on our own.

It feels like it has been one long Christmas. All year, we have received gifts, freely given, from so many. This week, we received these gifts.


A singer and a pianist filled our house with the gift of music. This clip is the third verse of Amazing Grace.  All eyes were on Julianna as she sang and moved to the music. When we’ve been there 10,000 years, she will still be singing and dancing, and she will still be bright.

DRAMA (the good kind)

J often asks to go to Disneyland so that she can see “real” princesses. I wish we could do this for her, but it’s hard to even leave the house. Today, she had a visit from Ariel, Snow White and Glenda the Good Witch. Sir Lancelot tagged along too. They had tea, joined the clubhouse and talked about royal things. It doesn’t get a whole lot better for Princess J.





10 thoughts on “Music and Drama

  1. I’am also glad that Princess J feels the need to embrace the emotional support of family
    especially after her recent cold.
    Thank you once again for sharing Julianna’s
    and your family’s journey with the world. It also means alot to us that have are touched and inspired by Princess J.
    I’am here for you as are countless others when ever needed and as often as needed.
    Glad to hear Princess J enjoyed hearing and
    singing her favorite song and a visit from
    several friends from Disney. I don’t know
    under what circumstances it would be possible for Princess J to visit Disneyland
    in Southern California. If you should decide
    that it is possible, Disneyland is about 30
    minutes from where I live. I will do what ever
    is necessary to assist you in making it happen
    should you decide in favor of a trip to Disney
    Wishing you, Steve, Alex and Princess J a very Merry Christmas & Happy New Year!
    God Bless you,
    Sunday, Dec 20, 2015

    Liked by 1 person

  2. I don’t really know what I can say to make anything better other the love and strength of your beautiful family move me to tears. I can only pray that Princess J will get stronger and have more time with you all. You really are an inspirational family. Happy Christmas to you all XxX


  3. So nice to see that Julianna is having fun with the visit from the princesses. Me, and Jessica and Sujin will pray for Julianna at church today. I showed today’s Julianna pictures to Jessica , and it made her happy. God bless you all of you.


  4. Blessings to all. Just trying to catch my breath, keep from crying, and try and understand just a tiny piece of all this. But He asks us to have blind trust and blind faith……..and we do. God bless all of you; you are being held gently in the palms of our hands , and in our hearts.


  5. Princesses have special magic for many little girls; I think they represent all things good and possible in the world. Dreams, laughter, warmth, love.

    And I bet Julianna represented this to them too.


  6. From a kid’s perspective, this is heart-breaking. Remember me? I was riding my bike when I saw you guys outside. Then me and my brother, Ethan, messed around with you.

    Anyways, I can’t tell if this is worse or better than losing a child at birth. Which would be my sister.

    We’ve recovered from our loss, but I pray and hope that you will recover too. Julianna will like that.

    … I am just speechless. I read your blog and the CNN article. I nearly cried.

    One more thing: tell Julianna she will meet an older girl, who had death faster than her. Or it could be a new life. Tell her, the girl’s name was–is–Lynnea. My sister.


    • HI Aiden, Yes, I remember. I believe that you and your brother were the ones who were impressed with J’s wheelchair driving skills a few yrs ago. She really loved that thing, and she liked to go fast! Thank you for your kind words and your prayers. I will tell her about Lynnea, and will think of all of you.


  7. I know it’s not likely, but I’ll be happy to give my Disneyland ticket away to your family. I can’t keep away from your daughter’s story. I have a five year old and this makes me never want to let her go. I’m in So Cal and you have my contact information.


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