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.
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.