Cute=Brave

Remember how I said that, in medicine, it’s good to be “unremarkable”? I’m going to have to rethink that terminology.  Our last 24 hours have been remarkable, medically speaking and otherwise — and it’s all been good.

— Steve and I did shift change at 1:30AM. J stirred and asked for a group hug. Quite different from the rough nights we were imagining.

— J woke up with her squeaky voice! She used it all day to invent drama (in her playhouse, I mean).

— J can actually lay in her bed again without being short of breath. This was still an issue yesterday. She’s a lot more comfortable this way.

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Sometimes, just being able to lay down is remarkable.

— The oxygen is off!  She still may need some extra oxygen at night, but I’m watching it right now and so far so good.

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If you are not medical, trust me: these numbers are good. Off O2 this afternoon.

I can’t really explain any of this. One of her doctor’s once told me that, with J, there is no margin for error. Any little thing can tip us over the edge. We lived this many times over. J is far weaker now than she was last year, and she is sailing through this cold. It doesn’t make sense.

One of the things I have learned (the hard way – it’s always the hard way with me) is to not overthink things. Some days, it’s enough to know just that it was a good day. And we are so thankful.

Moments for today:

  • Alex discovered that he’s an excellent fan dancer. The music: Carrie Underwood’s version of “Hark the Herald.” Choreography: all Alex. It was sometimes graceful and sometimes explosive (“all force and no vector” to quote Steve). Julianna loved it – but had to warn him several times to not hurt her fan.

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  • Emmet and Lucy (from the Lego Movie) joined in on the castle fun. The little Emmet minifigure has two faces – one side is brave and one side is scared. I asked J to give me her “Brave” face:
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Emet and Lucy are in the Lego car. They have glued themselves to their seats with honey so that the bad robot (not pictured) can’t take them out of their car.

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J’s brave (and cute) face.

Me: But that looks like your cute face.

J: Mom, it’s the same thing.

Update:

I went to sleep last night feeling that I didn’t quite get this post right. This is what I’d like to add:

When I say that I can’t really explain all of this, I mean it. From a human doctor’s perspective, J’s quick recovery makes no sense. What we are witnessing is a miracle: it defies explanation.

 

15 thoughts on “Cute=Brave

  1. Thanks for the very happy update.
    Sometimes thru the power of prayer
    and positive thinking, a mirale occurs!
    Profoundly happy for your family and
    for all of us who have Julianna, Alex,
    Steve and yourself in our daily thoughts
    and prayers.
    All the best as always,
    Valentino
    Monday
    Dec 07
    11:10pm

    Liked by 1 person

  2. So incredibly happy to hear that J is feeling better! What a brave little warrior princess. Continuing the good thoughts and prayers to J and your fam 🙂

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  3. I have only known about Julianna and your family for a couple of weeks now and I want to tell you when you say you are amazed at how well things are going right now and you do not understand how or why, I start telling you LOUDLY “It is the power of prayer!” I am keeping all of you in my prayers and I am sure that everyone who happens on your story does the same thing. I and my family are firm believers in the power of prayer and without that belief I could never have made it through a lot of bad, sad things in my life. Just keep reminding yourselves that God loves Julianna and all of you immeasurably and he sees everything that is happening to you all and no matter what happens you can and will get through it. Much love to all of you from this old granny. You have a great family.

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  4. This is all absolutely AMAZING! My heart sings for all of you. We’re continuing to pray. I told Ryan today that all the prayers seem to be working – J is experiencing miracles. I got this look from him – one where he looked directly at me into my eyes as if to say, “Mom, I know.” I can’t wait to tell him about this update. Hugs from NH

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  5. Hi Michelle,
    I have been following your blogs for some time now. It seems almost like your family has literally become part of my family. Thank you!!……Thank you!!…… for your updates. Every morning, first thing I do is check on any updates that you may have posted on your Blog. I’m elated to hear, she is doing better and off the oxygen this morning. The pictures you post are spectacular! It’s wonderful to see her beautiful little face and know that she is being so meticulously taken care of. It’s good to see her up and playing, from your post today. I have sent you a package to your PMB 157, Washougal, WA 98671 (Mail box) by “Overnight Express” this morning 12/8/15. It will arrive to you tomorrow 12/09/15 in between 8:00 a.m.- 3:00 p.m. Please be on the lookout for the package. Your Family has been such a tremendous blessing in my life. I wanted to in some way, express my appreciation.

    Sincerely,
    Lorna Redd-Victorville, CA

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  6. “God gives his toughest battles to his strongest soldiers.” J’s resilience and spirit to overcome each battle is inspiring yet heart-breaking. Children are so fragile. A wishful thinking- I hope someday there will be a cure for every disease.

    God bless you Snow family. Believe in miracles. Matthew 9:35.

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  7. Juliana and your family are the proof that God is really listening to our prayers. 🙂

    PS. The ‘parol’!!!! You’re lucky to have an authentic one. And yeah, ‘Maligayang Pasko’ (that’s ‘Merry Christmas’ in Filipino) 😀 – much love from Manila.

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